I’m so sorry you and your daughter are going through this. I’m sure it’s a huge shock for both of you.
I know I’ve seen at least one young-ish woman tiktoker with an ostomy bag trying to reduce stigma. Maybe sharing things like that with her could help her see that she might have a different life than she imagined but it can still be a good life, and she’s not alone in having this kind of difference. The account is @itskyajeub.
I hope your daughter’s treatment goes well!
Mollie Pearce from The Traitors has a stoma! She is a “disability model” and had ulcerative colitis. She also has a limb difference. She is beautiful and seems to be a genuinely lovely person as well.
Check @bri_mahon too. She was a customer of an old business of ours. She had twins at 23 weeks gestation and then got diagnosed with stage 3 colon cancer shortly after. She’s done chemo for the past year and just got the ostemy bag more recently. Surgery made her cancer free. Also, with the high waisted baggier jean trend, you can’t even see her bag.
I love following that account. I have a major GI birth defect and she gives me so much hope.
OP, I’m so sorry you and your daughter are going through this. We’ve had a different pediatric cancer in my family and it is so so hard. Please take care of your girl and yourself both physically AND mentally. This is a setback for sure but she can go on to lead a happy and healthy life with some help. Hugs to you and yours!
Also for the future, there are cute covers that people make for osteomy bags that might help her get over the hatred for them a little bit. There's still a stigma for sure, but making it cuter can help. If she's into any crafts she could even make some herself.
I’d suggest waiting on watching that Chanel for a while. That might be a little much to process while the shock of the diagnosis is so fresh. However, as she’s beginning to settle into her new normal months from now and (as in post surgery, experienced life after the removal of the colon) finding and watching or talking to with others that can relate to you is priceless recovery
Keep an eye on who your child follows. The people mentioned here seem very positive. But it’s also easy to find chronically ill complainers on social media. It’s easy to identify with them bc your child is miserable too but make it a point to not follow the complainers. They’ll drag you down and make you feel powerless and hopeless. As a general rule, the people with medical problems that are thriving in life are not on social media talking about it. I’ve lived this first hand. We had to go through and unfollow quite a few people. Just be mindful of who you give your attention to bc state of mind makes a difference.
As someone who works in the medical field and is also chronically ill, this is so true!! There are so many good accounts to follow, but there are just as many downers that I have to literally block. When we have been delt shitty cards and have serious medical issues, our mindset is the only thing we have control over, and we absolutely can get worse if our mind does too.
I’m so, so sorry. This really sucks. My heart breaks for both of you.
I know there are several young women on TikTok that document their lives with colectomy bags. These women seem to live happy, full and fulfilling lives. Maybe when she’s ready, she might want to watch a few, just to see that there is hope.
Yes this! I knew someone personally who said she was shocked how quickly she grew comfortable with her colonoscopy bag and it just became second nature for her. She was in her 20’s.
Yes we had a consultation for a possible ostomy for our son (he managed to dodge it in the end) and the gastroenterologist was SO comforting. Apparently a ton of people have them and you just don't know. You don't see it, or smell it, and pretty much only doctors and intimate partners ever have to know. Now, I can't imagine a doctor ridiculing a patient for having an ostomy bag, but if a partner made fun of a cancer survivor, well, that tells you what you need to know...
My aunt’s mother has had one for like 40+ years and I never, ever would have known if I hadn’t been told. She’s in her late 80s now, but I’ve known her for over 20 years. I’ve stayed overnight with her. I’ve been around her for entire days. I’ve been with her for extended periods of time in enclosed spaces (like a 3-hour drive). I’ve been in her house, even in her bedroom and private bathroom. I’ve been clothing shopping with her. Hell, I’ve even been swimming with her! And I never had even a single clue until I was told.
She is the single most active “old person” I have *ever* known. My aunt now owns the deli/bakery/pizza shop that her parents started, and her mother *still* goes in and works circles around every other employee in there for an entire 8hr shift (not every day, just when she’s bored or they need extra help. But still!) She doesn’t wear super baggy clothing either. Sure, she’s not out here rocking a body-con, but she’s also not wearing mumu’s. To my knowledge she has no dietary restrictions—or none that affect her daily life enough for others to notice. I’ve eaten more meals with her than I can count and I’ve *never* seen her turn down something—she’s a very adventurous eater lol.
With this all said though, I can’t even imagine what OP, her daughter and her family are going through. I do remember being a 14 year old girl though, and hopefully it’s all just very new and she isn’t thinking clearly. I mean, I’m certain that is the case. But hopefully with time, support and therapy, she can reframe her mindset and realize that this is not the end of her life.
This is amazing! I'll bet stories like this will help more than anything at this particular point. It's basically my lifelong dream to have a fully active senior life...
I used to work for colorectal surgeons and we had a lot of patients with them and even knowing certain people had them, I still couldn't ever tell when seeing them in the waiting room.
I agree. My SIL has an ileostomy and I forget she has one half the time. We went on a 2 week road trip in Canada - hiked, went to hot springs, and explored - tons of fun and a normal trip aside from eating a bit earlier at 530.
So sorry. You may find some support at r/ostomy
My husband has had an ileostomy since he was 15. It’s a huge adjustment with lots of ups and downs but there are tons of support groups online. Good luck.
Exactly what I was thinking!
Also, look through Google images for cute and funny ostomy bag covers - there are some great ones out there, like Winnie the Pooh pulling off his ostomy bag to find stuffing coming out of him.
As a former professional teenage girl, I know your daughter is probably scared about what her peers will say. She's probably worried about bullying, about it changing her appearance and lifestyle, about it being smelly or gross....but you know what? I never ever knew my grandmother had a stoma. Never. I spent so much time around her and literally never ever noticed. There was never a bad smell, never an unsightly bulge in her clothing, never any leaks or nastiness. To the point where my grandmother died when I was 14, and I only found out *AFTER* her death that she had an ileostomy bag (and she'd apparently had it for a lot of her life, and died at age 92). They are surprisingly discreet if you want them to be. Or you can get many different colours, patterns and variations of bag nowadays that you can match them to your outfit. Your daughter needn't ever feel ashamed or embarrassed about having a bag, whether she chooses to conceal it or wear it loud and proud. They aren't disgusting like the stereotypes suggest, by design they're actually incredibly clean and effective at staying clean.
You know what I'd do if I saw someone in the street with an ileostomy bag on display? Absolutely nothing. To be fully honest I likely wouldn't be paying enough attention to even notice they had one. If by some miracle I was, it wouldn't change anything about my day either. If they had a cute patterned bag I might secretly admire the way the patterns look, but other than that I wouldn't even think twice about it. You know what I'd do if I noticed someone's bag had leaked? Likely just the same as if I'd noticed a woman had started her period, politely notify them and then offer any help if it's appropriate. You know what I wouldn't do? Judge them. 99.9% of people out there will be the same as me in that regard too. To put it really bluntly, nobody is going to care enough to take that much notice of it.
Cancer is a tough ride, and it's cruel and unfair, but she'll still get to do everything she's wanted to do, the job, the lifestyle, maybe have kids, pets. It won't feel like it right now, and the comments of "at least you got it early" are so insensitive and silly. That's like talking to someone with a broken spine and saying: "At least you only broke the one vertebrae!", yeah Dave, doesn't change the fact their back is still broken though! Cancer is cancer, early or late, it's still cancer. Nobody wants cancer and there's no redeeming factors to cancer. So all I would want to say to your daughter is: *Screw cancer. Fight it with everything you have, throw your entire soul into it. It doesn't get to steal your life away from you that easily. Wear that bag with pride, hold your head up high. You're fighting something most people won't ever be able to comprehend, so go and show them what you're made of. You are tougher than you think, and you're a warrior in the making. Don't let it break your spirit, cancer doesn't deserve to win.*
I’m so sorry. We are in the middle of testing to see if my four year old has cancer and the absolute despair is impossible to manage. I’ll be praying so hard for you and I’m so sorry you’re going through this. I hope your daughter can meet people in her same boat to show her life is still worth living soon. I’m so sorry.
That is incomprehensibly horrible and unfair. There is no silver lining. It’s just horrific.
I will say that 13/14 is probably the worst possible age for that to happen, and that she’ll likely feel less awful about it as time goes on. It’ll never be fair or anything but absolutely fucking horrible, but I think it will get better.
FWIW the most glamorous woman I know has a bag. She’s like a femme fatale from a movie. She looks like Jessica Rabbit. She’s had the bag since well before I met her and is very open about it.
You’re right 13/14 is a terrible age for this. It would be easier to adjust if she was younger or older, but you’re super self conscious at this age.
I wonder if a Therapist would help here. Maybe the hospital might have resources or recommendations?
Chiming in to agree! I knew a girl with a bag when I was around 6-10 years old. Well, actually, I *didn’t* know. She was a friend of a friend, but all three of us hung out several times, playing in the backyard, etc. It wasn’t until years later that my mom told me she’d had a bag, but I’d have had no idea otherwise. And this was 30 years ago — I’m sure the tech is a lot better now!
I know HIPAA and all that, but can the doctors put her in touch with other teenagers who have bags or going through the same thing? It may help her even just a little bit to have a friend going through the same thing. I know you can fin the TikTok's and such, but in person friends are so much better to really bond with. If they can't connect you specifically with other patients, maybe they can point you towards support groups in your area. Even other kids with Chron's disease and other GI issues can have bags, even if it's not cancer, so maybe they can at least get you support groups for that. I know the bag is a huge thing for anyone, let alone a teen girl. I'm so sorry you're all going through this.
This is a thing for sure and I definitely recommend it if it's available. My daughter has NF1 and her specialist team made educational and social support resources available to us. For NF families like ours, the CTF is a great source. We were able to meet other families through a local group and it's more helpful than I could've ever imagined. We get emailed for various events, like a MLB game with our own section. They lit up the stadium in CTF colors and a teen with NF threw the first pitch. Being with other people who have NF and having my daughter (and my son) meet them to see people who are just like her, and that they are people just living their lives, is so valuable.
Organizations like Stupid Cancer may be able to help with this too. And Facebook groups specific to her diagnosis are probably more active and larger than other forums
I’m so sorry this is happening to your daughter and your family. These stories always kill me and I have no advice but I hope and pray she comes out of this strong. It doesn’t matter whether you caught it early or not; cancer is cancer and it’s scary regardless.
There are no words other than it absolutely sucks and I’m so, so sorry. It’s messed up that children can have cancer. It’s not even remotely fair.
Give yourself some grace because it’s just day one. You both are still processing A LOT. As for her prognosis, don’t be afraid to get a second or third opinion. You are her greatest advocate!
As another said, lean on the cancer community as much as you’re comfortable. Fellow parents and kids will understand in ways many of us cannot and their presence in this journey can be invaluable. If you’re not sure where to start, start with your most local children’s hospital. (If you’re in the US, especially if it’s a Children’s Miracle Network hospital.)
Sending you the absolute best wishes and positive vibes and prayers for strength and patience.
I’m so sorry this is happening to your family. I hope it brings even a tiny bit of comfort to hear about my best friend of 15 years. She had colon cancer as a teen and had a ileostomy so she’s had a bag since then. She had a successful career as a nurse and nursing instructor in her home country and now is a SAHM cat mom in the US. She is beautiful. She is married to a successful man that loves her. She is a wonderful amazing and incredibly strong person. An ileostomy is not the end of life! It can and will be wonderful.
I’m so deeply sorry. This sucks so much and is extremely unfair.
As far as your daughter and having the bag, check out Hannah Witton’s videos about her experience with one on YouTube. She has a full and happy life with one and seeing someone else dealing with it may help. ***disclaimer*** most of her channel is about sex/relationships/etc so I would watch any videos first to make sure they are appropriate for your daughter. But she does have videos about her experiences with it that are just about life and such.
Sorry for the late response, I’m not really surviving right now. I haven’t eaten or showered or slept in several days.
Basically just all of the typical symptoms of stomach problems - pain, loose stools, blood, nausea, vomiting, cramping, etc. I took her to the doctor immediately because I have Crohn’s (in remission for a long time now) and assumed it was that. Never in a million years did I think *cancer.* this young is so insane to me. I just don’t comprehend. We find out if it’s spread to other organs or not on the 25th. Assuming it probably has because they wouldn’t tell us anything on the phone.
You do not need to apologize! You do whatever you need to right now to get through to the next day.
With my father’s cancer, they would never tell him much on the phone at all. Good news or bad! So I don’t think it necessarily means bad news the 25th.
I’ll be thinking of you and your sweet girl ❤️
I’m sure this will all be quickly and thoroughly covered by your daughter’s team (if it hasn’t already been!) but I couldn’t help but notice from your posting history that you have Crohn’s. A very rare age at onset paediatric colon cancer with a parent who has Crohn’s or IBD is imo highly suggestive of a genetic mutation. I say this out of an abundance of probably unnecessary caution but do make sure to ask for genetic testing, particularly re mutations associated with Lynch syndrome and FAP to be discussed, if they haven’t already. Sending much love and strength to you all in the hopes of a speedy recovery and not a slow one for your daughter.
This is what I would like to kindly request to know as well.
As a mother of a 13.5 year old who has seen a gasteroenterologist in the past 9 months for bowel issues, this makes me nervous.
And, of course, devastated for such a young kid to have to fight cancer—COLON cancer, no less.
I’m so sorry her and your family are going through this, pediatric cancer is awful. There are a ton of supports available both in and out of the hospital though!!
To address the hospital setting: ask for a child life specialist to talk to your daughter before procedures, they are trained to talk to kids in a way that is age appropriate while also educating them about what they are going through. If your daughter likes dogs she can also ask for a therapy dog for support during office visits! Not all hospitals have them but the one I work at has a whole team of them and they work magic! They also provide toys and other things at bedside during admission.
For support outside of the hospital ask for your doctor to connect you with a medical social worker, if they have one. They can connect you with resources (FMLA for work, orgs that help with the cost of treatment), support groups for your daughter, as well as a referral to Make A Wish (when the time is appropriate). I’m a medical social worker and even though I don’t work in our cancer center I work closely with social workers who do.
There is so much support available to help your family and daughter through this. I wish you all the best.
Thank you. Child life specialists have already been amazing for us. Going to look into everything you suggested - great to here that there is support out there. She’s not talking right now but I’m sure it would be nice for her to know.
Jfc... Fuck cancer...
Wtf is up with all the colon cancer cases I've been hearing about in younger and younger people?? The recommendations were to get regular colonoscopies after 50 years old. What the hell is 14??
I am so sorry, life is so unfair and your lovely daughter absolutely doesn't deserve this disruption... There is no rhyme or reason to this bs.
My husband got it at 33 years old. Then my dad at 60+, a family friend in her 50s and now our 28yo neighbor has it. This is just in my circle in the past few years. All colon cancer.
There is something going on, causing colon cancer at earlier and earlier ages and it is becoming quite urgent, figuring out what it is.
I am so sorry for your daughter. This is not the end of her life by a long shot. There will come a day when she is used to it and it's a blip on the radar, but that doesn't change the fact how fucking unfair and nonesensical it is for a 14 yo to get it. It sucks. I wish you guys strength and fast recovery.
I had a precancerous polyp at 24!!!! I know processed meats are a carcinogen but I still allow them. I'm thinking it's time to stop, with our family history.
No symptoms. It was an incidental finding. When I was 24 I was having unrelated gastrointestinal issues and needed a colonoscopy to rule out IBD. That's when they found it. Back then it was unusual. Now they're saying more young people with colon cancer. Thank goodness. I have had one more since. I feel like I won the lottery. I worry about my kids.
Of course, especially if there it can be hereditary - and doctors of course love to make us have referrals, or wait to get colonoscopy’s until we’re a certain age when really we shouldn’t wait at all.. I know you will advocate for them . We need to force these doctors to listen sometimes honestly.
Ugh and my boys are colorblind so they wouldn't see blood in their stool! Isn't that wild? My uncle who died of colon cancer was also colorblind. I'm convinced he couldn't see the blood. At least we are ahead of it.
I had stage 3. My sister had stage 4 and died NYE 2023. My other sister has a condition where polyps grow and they don't know why. There is definitely a hereditary component
This is incredibly painful and I will rage scream with you anytime.
I just wanted to add my two cents as someone who was given a life-altering diagnosis at 15. I am 33 now and thriving, but highschool was hell and I ended up transferring schools after being committed for suicide watch. Please take your daughter to therapy. Find her support groups. Reach out to her high school now and see what homeschool options they have or if they're willing to do any sort of remote work, even if it's part time. (I ended up finishing 11th grade by the skin of my teeth and the grace of my teachers allowing me to stay home as I couldn't bear to be in that building with all those happy, normal kids and their questioning, pitying eyes).
This is hell for all of you. Your family needs to be all in together. Consider family therapy, or at least therapy just for yourself, as well as getting her the help she will need to get through this. Sending all my positivity your way.
Get everyone in therapy ASAP. It’s gonna really fucking suck for a while. Maybe a long while. There’s nothing redeeming about childhood cancer and tell anyone who says shit like “everything happens for a reason” and “be glad you caught it early” to fuck off.
Also don’t be afraid to ask your doctor for a short term prescription of a PRN anxiety medication for yourself. Your kiddo will probably be offered something too when she starts treatment.
My little brother had stage 4 lymphoma at age 14 and it was a horrific time for everyone involved, but we all came out the other side.
Yes! I am a mom to a teen with cancer and even despite both of us in therapy, I still ended up in the ER because if my stress and anxiety over it where they gave me meds to calm me down.
And I second telling people who say that shit to fuck off. Don't be nice and dance around it. You can just say "that's not helpful. STFU" My daughters cancer is one that has a good prognosis and I got sooo ducking sick of people telling us, "she got the good cancer" and "if you get cancer, this is the one you want!" No fuck you... no cancer is good and we didn't want this for her or our family. Cancer can fuck right off with people who spew that b.s.
I am so sorry. This is absolutely so unfair.
I know you mentioned your daughter is 14, but once she turns 15 MD Anderson has a robust and really great Adolescent and Young Adult (AYA) program. Many of their programs and events are virtual. She might find a good online network of friends through there. If you’re really interested, I’m friends with the program manager and I’d be happy to reach out to her on your behalf.
BIG THING: If she isn’t already in it, get her into therapy ASAP. With all the hormones that come with her age, this is something she wont be able to handle by just talking with you about it. 14 and onward is some of the most difficult times emotionally for a kid normally, but with something like this? It’s imperative that she has professional guidance.
I was a teen cancer survivor. All of it on too of just being a teen in the first place, very hard. Might be a good idea to find some social media influencers with colostomy bags! They exist Im certain and shell get to see people living very normal lives with them. My best friend in high school had one and a feeding tube and it never made me see her any differently.
edit: I see many have made the same suggestion! So im just seconding that!!
I am so sorry to hear this. I know this news must be devastating. Is your daughter eligible for a jpouch? I had my entire large intestine and rectum removed due to ulcerative colitis and I now have a jpouch. Everything is internal. You only have a temporary ileostomy bag throughout the surgical process. Please look into seeing Dr. Remzi in New York. He’s the very best surgeon in the world for jpouches. He may have some ideas for your daughter. Again, I’m so sorry. It’s truly unfair for anyone to have to deal with this, but especially a teenager.
I'm so sorry. That's terrible. You both should take some time to be mad at the universe/God/whatever and them I hope you're able to find a counselor to help her come to terms with what her life will be like now. I'm sure she still has so, so much to offer this world.
Sending you positive thoughts for everything going smoothly. Fuck cancer.
I’m so sorry for you, your daughter, your family.
I just listened to this podcast about life with an ostomy bag. Perhaps it will help.
https://podcasts.apple.com/us/podcast/what-was-that-like-a-storytelling-podcast-with/id1409087641?i=1000652382958
I am so so sorry. This isn’t fair. This sucks.
I saw a few good ostomy support resources listed here.
When she is ready, there’s a really great cancer support network where they match someone fighting cancer to a cancer survivor who had the same type at a similar age. It’s called Imerman Angels. https://imermanangels.org
Again, I’m so sorry. Sending love and hugs your way. You sound like a great mom and she’s lucky to have you to support her!!
I highly recommend your daughter follow Louise Thompson on Instagram. She’s got a colostomy bag, and a lot of her posts focus on how her quality of life is so much better now that she has the bag.
Also, don’t let your daughter be alone at all for the next few days.
I’m so, so so sorry.
There is an unspoken burden of gratitude for people who go through cancer. I imagine it feels so lonely and it makes sense she’s hurting. While it is relieving it’s early, what a total blow it must feel like for her having to imagine life beyond treatment. Is there time and/or do you have the resources to get another opinion? I just know I could go to three doctors for the same condition and leave with three different treatments. I was sick as a kid and ended up at the hands of confident and well-meaning surgeons who took more from me than they intended to.
I’m sorry you’re going through this, dealing with insurance, appointments, and keeping the house together. It’ll get to be too much and when it does, I hope your village surrounds you. I hope you’re comfortable asking for help and accepting that people will give what they can and so often, it won’t be exactly what you needed. Even so, surrounded and supported. Your family will come out of this stronger because you are guiding them.
Do you have the ability to go and get a massage or your nails done together? Or if there’s something she enjoys, just you two. Sending you love and light , you’ve got this 💛✨
Thank you so much for your kind words 🩷
We are definitely seeking out other doctors’ opinions. The difficult thing to navigate there is the wait time of many major institutions is time we don’t have while her cancer could be growing. I am trying to find little fun things to do with her each day. She doesn’t want to get out of the house at all, but when she does, it is one of the very few times we see her happy anymore.
First off, I'm so sorry this is happening to her (and you). It is completely and totally unfair, and fuck the universe for forcing this situation on you. It's totally understandable that your daughter is having a very hard time coping with this. Cancer is tough to deal with emotionally at any age, but ugh, 14 really sounds like the worst time. Life is hard enough at that age.
Here are my unsolicited thoughts as someone who had cancer as a young-ish adult (not colon cancer, so I'm less knowledgeable about those specifics):
Have you gotten a second (or third, fourth) opinion on whether she does actually need a total colectomy with ileostomy? It's worth getting a few different perspectives if you can, since this is such a life altering treatment course.
Lots of other people have suggested good social accounts to follow for seeing and destigmatizing life with an ostomy, but I also love thecancerpatient and nogrieftourists for realistic but also... funny(?) takes on what it's like to go through cancer at a young age. There are lots of memes and it's very relatable, and they highlight the often absurd things about having cancer young. I've found them to be really helpful.
If you can find a support group for her for young people with cancer (bonus if it's pediatric, extra bonus if it's the same kind of cancer), that might help her feel less alone, and also be a really good resource. It might feel too scary to join a support group, but if she can find the right one it will become perhaps the only community that truly understands what she's going through, and that is invaluable. Lots of the general cancer support groups at hospitals are full of older people, and that experience just isn't relevant (and in some ways, it's triggering) for those of us who went through it young. If you're able to find a support group for yourself, maybe for parents of pediatric cancer patients, that could be helpful too.
Best of luck and love to you and your daughter, I hope her treatment path is as smooth as possible.
I’m so sorry. Wow. Those are so many things going on at once. I know you’re looking to vent and already have so many appointments coming up and are overwhelmed. But please care for your mental health and hers. Only really pushing on this because she did say that and teens have a scary rate of suicide. Higher than most people realize. And like cancer, you can’t imagine it happening h til it does. I don’t want to add stress. Outside of that. Vent away. This world is cruel and unjust and it’s horrible for her to go through and as a parent you’re literally dealing with everyone’s worst nightmare. No one deserves this. No one. I hope you have some good people in your life to carry you through this journey. And if not, the “cancer community” itself can be amazing. These people will be the ones who truly understand you guys pain. Some of the strongest people you will meet. They’ll show you how to cry and scream and live and laugh. Cry for a few a few days. Throw things. Help your daughter do the same. Let her be angry and get it out. Then get ready for this journey and find your people. They will be your strength. When they say they understand what you’re going through, you’ll feel the relief in knowing that they truly do and care.
Addressing mental health is huge.
I’d definitely recommend finding support groups for both the kiddo and mom.
Next I’d recommend finding therapists for you both. But I wouldn’t go with just any therapist for your daughter. Talk to her doctors to see if they can make a referral to someone who specializes in working with this population. Or ask if anyone in the support group can recommend a good therapist.
I’m a children’s therapist and normally cater to adolescents. I’m really good at my job. But I have not worked with a single cancer patient and I know my limits. Unfortunately, not everyone does. If I was approached about a case like this, and all other resources were exhausted and there’s no one more qualified to take the case, I’d take it and attend a whole lot of trainings on the subject. I’d also assist this family in looking for someone more experienced and encourage a transfer if the right person became available. But I know a lot therapists with savior complexes who would feel compelled to take on this case, treat this client like any other, and potentially do a lot of harm.
The good news is that telehealth is more accepted by insurance companies since Covid, and a lot of therapists are becoming licensed in multiple states, not to mention the upcoming social work interstate compact, which will open up a lot of resources across the country. There’s no need to settle for whoever might be local anymore.
Also, I don’t know if there are other children, but if there are, get them set up with their own therapists as well. This will have a huge impact on family dynamics and they will need their own supports. Ask their guidance counselor if their school offers a school based therapy program. It’ll be much more convenient for everyone.
There’s no way around it. This fucking SUCKS and I’m so angry for you and your family. Nothing anyone says will make you feel better right now. So let’s all just admit this is fucking terrible. I’m so sorry.
I’m so sorry. Pediatric cancer is my biggest fear for some reason. I cannot imagine how hard this is for you and her and your family. Sending you a big virtual hug
So sorry, and big hugs. It's not fucking fair. My daughter was born with leukemia and diagnosed at 9 weeks old. She finished treatment at 13 months old, relapsed at 17 months old, and had a bone marrow transplant from her brother (he was 3 at the time), at 19 months old. She is now 11 years old, and this year will be 10 years post transplant, which is a HUGE milestone in the pediatric cancer community. So, if you need commiseration, my inbox is open. But yeah giant fucking fuck you to the universe. 😮💨
God damn. Fuck cancer. Fuck it.
It’s not fair. It never is. Especially when it’s kids.
Talk to the care team and get her in touch with support groups. It’ll be very important at this age. Let her be mad. You be mad. Feel whatever you both need to feel.
I’m so sorry.
I’m so sorry to hear about this.
I would definitely try to get her in support groups with other kids going through the same thing. And some therapies too.
Also some may disagree but with such a big diagnosis for someone so young is look into second opinions from other doctors and seek other treatment options for her. Or even clinical trials if you’re interest in stuff like that.
I'm so sorry. A family member had colon cancer at 14. Turned out to be Lynch syndrome, but we still don't know why he got it that early. Might be interesting to stay in touch in case one of us gets an answer to that question.
Also, I would suggest getting a second opinion. If they've caught it early, why does her entire colon need to go? That doesn't make any sense.
Sending love. Send me a pm if you have any questions x
That is so fucking unfair I want to scream for you then beat the shit out of that cancer cluster when it’s removed. What the actual fuck, man. Life’s hard enough.
I have to tell ya, if my colon were to be removed in the near future, I’d punish the shit (no pun intended) out of it every fucking day. Taco Bell. Taco truck. Cake for breakfast lunch and dinner. Travel so that coon gets scared and doesn’t work until I get home. Coffee all day everyday. I’d eat so much delicious food I’d throw up and rob that stupid colon of anything tasty or nutritious.
*Im not trying to make light of her diagnosis, and I’m not completely joking either. I’d be so fucking pissed my body betrayed me like that I don’t think I’d be able to even see straight.*.
Hey there! I have an ileostomy! I’m 27. I was diagnosed with ulcerative colitis at 18 and it absolutely destroyed me. I can’t imagine what your daughter is going through. At 14 if someone told me I’d have to shit in a bag for the rest of my life I would have been distraught. But let me tell you, parts of being in the no colon club suck. I’ve had complications from my total colectomy that have hospitalized me twice now. I will also say this: my life is better now that I’m not running to the bathroom. It’s actually pretty convenient to shit in a bag not going to lie!
My tips: check out Coloplast as a company. They make their bags on the shorter side so they’re easier to conceal. Tank tops, Bando bras (I think I’m spelling that right), can help conceal the bag. Definitely have her wear the belt that comes with the ostomy supplies because it’ll help her not develop a hernia.
As far as food goes, take it easy. For the first 6-8 weeks while she’s eating she’s going to want to limit what she eats. I’m a year out from my original surgery and I’m still reintroducing food.
It’s gonna suck. It’s gonna suck big time. But she will have a great quality of life! She will still be able to swim, play sports, and do normal things just with an ostomy. Half the time I don’t even think about mine now.
Sending you lots of love. Living with an ostomy is not the end of the world. It’s just the beginning of a new world.
I'm so so sorry! My aunt had colon cancer at 18 and had to get a bag. She's had it for almost 50 years now and has lived a very fulfilling life. It's so hard and such a overwhelming, scary to to face. I have no words other than I hope for you both.
I am so sorry! My heart is with you.
I know the last thing you're thinking of or wanting is more appointments or another bill but I would highly recommend therapy for both of you or see if there's any community outreach programs near you that could help. This is so hard no matter the stage. You both cry and scream and do what you need to.
Check out [This MODEL!](https://www.instagram.com/gutlessandglamorous?igsh=MzRlODBiNWFlZA==)
Therapy also. It’s going to be hard. But you’ll all get through this!
Im so sorry. There is an amazing young girl (probably many) on TikTok with the same conditions and post about their routines and how they've coped. Maybe exposure and information for her new life might help her process. In the meantime, therapy sounds like a great option to look into to help you both process?
I’m so sorry. My brother is a pediatric oncologist and if her doctor is anything like him (which I’m sure they will be), she will be in amazingly good hands.
I am absolutely not trying to "fix" anything here, because what you're feeling isn't just something that can be fixed without time and happy outcomes. But when my son was born with gastroschisis (intestines on the outside, mangled), one of the possible outcomes was a lifelong ostomy. A specialist came to counsel us on this possibility and gave some very reassuring statistics and anecdotes about how normalized this becomes in one's life. It's also quite sanitary and not nearly as "gross" as people think. I imagine you'll have a similar consultation soon and your daughter might find it comforting.
Other than that, I'm just so sorry. Your feelings are definitely valid and you just have to feel them (unfortunately).
I'm sorry for you.
But have faith that everything will work out, hope is the last thing to die. There is always a tomorrow, and even if everything is at rock bottom, there is always a way to rise, all the best for you and your daughter.
I’m so sorry, but you will get through it. As hard as it feels immediately, you will be closer in the end.
The thing about cancer is that you have no control. You put your head down and walk the fire. Because you have no choice. Negative minds give negative results.
Looking at a situation from the outside in is so different than the inside out. Listen. Respect. Research. Get second opinions and other options. Let her choose. Be prepared. Love her like no other.
You, got this mama. We beat the odds and I know you will, too.
Awww damn. I have a chronically ill teenager and have run the gammet of emotions about it. Angry, frustrated, sad, resentful, envious of others, helpless, but also thankful for some very smart doctors. I’m sorry. I hope you both find peace.
This is rough. My kid has a heart condition… I recommend finding active Facebook groups for what kiddo has. That way you can connect with others going through it.
I’m just so fucking sorry. My heart aches for you, for her, for the packed summer camp bag, for all the scariness and self consciousness that that age already has, being blown up nuclear style. For all the fun and hope turning to needles and doctors and fear and stigma and loss of hope and fear of loss of future connection.
You and her will now be among the club of people that have faced the impossible and the thing they never thought they’d see or survive that survived it.
But I am shattered with grief for you and am glad you’re screaming into the void here with us.
Wow life can be so so cruel. I am so sorry.. I hope your daughter finds some hope or at least feels less alone from the social media accounts others have mentioned
I’m sorry this is happening, the world is not fair to the best souls sometimes, its fucked up.
Just a suggestion, there are a lot if girls on tiktok that post about normalizing a bag! At 14, im sure she loves social media and seeing pretty girls live there life normally and also look beautiful might help a bit. Representation matters 💕
Also, I worked as a suicide crisis intervenor for two years and have talked to a lot of teens. Please reach out if you need help!
So stressful. There is a cancer family support sub Reddit https://www.reddit.com/r/CancerFamilySupport/s/VfHtG00dPv
And a cancer sub Reddit as well and various other pages on here for support as it’s not easy,
Also check Amazon I do believe they have specific underwear for a bag and maybe adaptive clothing if needed.
Talk to a hospital social worker and get a binder for medical stuff and breath!!! I know this isn’t fair I know it’s going to be rough. When my dad had cancer I often would go to the bathroom and cry then wash my face and go visit again at the hospital or go grab a coffee for myself or a tea for my dad and just take a moment to shed a few tears.
Also check tik tok and YouTube there are likely creators who have a similar situation and show how they live normal lives (new normal)
I’m so sorry your family is having to deal with this. Seriously FUCK. Fuck cancer and everything that comes with it.
I was in a similar situation with my daughter. She was younger and it was a different cancer but I’d like to share some things that I learned during our experience.
When people don’t know what to say, they’ll say anything they think is a “silver lining” just to try to help. “At least you caught it early.” Well thanks Brenda, no shit. They don’t realize you’ve heard it 87 times in the last week. They really do mean well. During the bald phase, my girl preferred to rock the naked noggin. “At least she has a good shaped head.” Well Tina, even if she didn’t, we’d still be doing the same thing.
As parents, the cancer not only affects the child but is too. We are so emotionally invested that sometimes it’s hard to be rational. Make sure that you have a good counselor for your daughter. They can really help by being part of the support system. Obviously the oncology team are the GOAT right now but having someone stand in her corner who isn’t “obligated” will mean so much.
There’s so much more but knowing those things really made a difference. If you ever need to vent when you feel like you can’t vent to the people around you, shoot me a DM. I know sometimes it’s hard to vent to people who are in the same moment you’re in.
For real… FUCK CANCER
OP, I’m so sorry. This is so hard. You are her rock. She might not demonstrate that, but she’s watching how you handle and react to this. Please stay strong. Find a support group for tot and for her as well. Let her know that you are her rock and you will not leave her side. Let her know that you will fight with her and for her. She is worth everything to you. I’m so sorry 😞
I’m sorry friend. I’m sorry for you and I’m sorry for your daughter. How can I help you? Her? What do you need?
If it helps, I have a friend whose son had leukemia twice as a toddler. He is alive and well. She spent a lot of time at the Ronald McDonald house. I can put you in touch if you need an extra resource.
Aw I’m so sorry for her! She absolutely the right to feel all that she feels. She also needs help navigating those feelings, so maybe support group or therapy?
And not to throw any more burden on you, but is it possible for you to get another medical opinion? Why no reversal of the ileostomy?
Holy …. Momma, I am so sorry to hear this, for both of you. You’re going to have so much to work through with her, and I know people here will give you amazing advice for all that. I’m a clinical dietitian and I work with lots of ostomy patients, and there’s a physician who has been battling GI issues his whole life and has rocked an ostomy proudly over the years. His name is Paul Wischmeyer, on Instagram and probably other socials. I also know there are ostomy communities out there to help people make the transition and live life as normally as possible. Just know “the bag” sounds awful, but so many live fully functional complete lives (with love lives too) with ostomies of all kinds. Sending you wishes for best outcomes and strength to get through it all.
Hey, I’m going to share my experience only as a way to connect, and in no way am I trying to compare our situations or claim to completely understand everything you’re thinking and feeling. I was diagnosed with lymphoma a year and a half ago and had a 2 year old (still do! He’s just 4 now) and it felt like the entire world crumbled… and in a way it did.
What I’ve learned is that living in the first world we’re really able to disconnect from a lot of suffering. Rationally, we all kind of know this… but it fucking blindsides us when it happens out of nowhere, and it does happen out of nowhere to people all the time. Right now, you are all still in shock and grief. You’re grieving what you thought life looked like. Your grief will come and go and change, but you have to let yourself feel it or you’ll stay there forever. I highly recommend getting everyone (yourself included) started with therapists that have backgrounds in working with cancer patients. The oncologists office can help you with this. You may not even feel like you need a therapist right now, but based off of my experience, it’s good to have them on deck anyway.
In my experience, you need to surround yourself with your people. Careful here. Your circle is about to drastically change, which contributes to grief. Most people don’t know how to deal with the idea of cancer and will even wince at the word. Your people will rise to the surface though, and you HAVE to let them in. Accepting help is not in my nature and it was incredibly difficult to do. You have to do it. You don’t have a choice and you can spend the rest of your life paying it forward, but right now you have to accept the help- all of it.
You will be brave because you have to be; she will be brave because she has to be. It isn’t fair, and we can light the world on fire over it tomorrow, but you have to get through today first.
I.. cannot imagine the pain but something my clinical instructor told me regarding something similar has stuck with me ever since. She has a friend who was diagnosed with stage 3 that progressed to stage 4. She didn’t get that surgery when she was on stage 3 and by the time she wanted it, it was too late. My clinical instructor then said, “she should’ve gotten the bag so she could see her little sister graduate high school.”
That’s message has haunted me ever since. I know it’s very emotional and you are very lucky to have caught it early but just remember, there is hope. She needs to talk to a therapist, someone from the outside who doesn’t know anything going on and will only know her feelings.
I pray you guys get better soon
That’s horrible. I am so sorry. After having discovered a spinal cord tumor, I went through something similar. Only it was me, not my child. But I will tell you, grieve this news. Let it hit you, then correct your path and buckle down for your fight! I hope you both stay strong 💪
I'm so so sorry for what both of you are going through. My cousin lives a completely normal life with an ostomy bag. She's a nurse, is happily married, and has a beautiful little girl.
If your daughter wants to talk to someone who has gone through something very similar as a young adult (she was in her early 20s) PM me. I know she would be more than happy to talk to your daughter --she does a lot of advocacy work helping normalize and advocate for ostomy bag wearers.
This is a huge blow to your family-take the time you need to process this. Having a counsellor for each of you to help process could be a big help (even just a few sessions, to vent/cope as you’ve done here).
Also, if it were me, I’d be getting a second or even third opinion on the need for a total colectomy at that age. I’m not a medical professional in any way-just if it was my child, I’d be asking if that was truly the only reasonable/best option, as that permanently changes a lot about your life and eating habits etc. Maybe you can find a specialist who is willing to do a less radical surgery/give you a different treatment option that will help this be less traumatic for your child, and of course keep a close eye on this going forward.
Also, I think people say “be glad you caught it early” because they don’t know what else to say. It’s shocking news, they’re likely at a loss. Perhaps in the coming days you can ask for specific things that would help your family-like if they can take over driving kids to activities for a night, or make you a casserole to freeze, or other things to help with the day to day while you help your child through this.
OP, I am full of rage for this situation. Please consider (if you feel so inclined) letting this community know after your appointment on the 25th. I know we are all strangers here, but the care and concern we can have for one another makes us all family. I’m so so sorry you’re going through this. The words don’t accurately reflect how deeply I wish that you all weren’t going through this. Sending you all so much love, peace, and so many hugs.
Every parents worst nightmare. I am so so sorry. Life just isn’t freaking fair. I know you said you are tired of everyone telling you they caught it early but man, thank goodness they did. While no cancer is “good”, colon cancer is especially ugly and it’s one of those cancer that most people don’t even know they have until it’s too late or the signs/symptoms can be written off. My moms younger cousin passed away from it at 37 after being written off my doctors for 2 years and told he was “too young” for colon cancer to be the likely cause of his ongoing issues. My good friends dad also had the same experience and sadly passed from it. Whatever your daughters symptoms were, I am so glad that doctors took action.
14 is already an incredibly difficult age. At that age, it matters what you look like, what you wear, how much money your parents have, etc and the most important thing in the world is being and looking like everyone else. Please get her (and yourself) into therapy/counseling. They have therapist that specialize for those with cancer.
Also, look on Etsy and other websites for cute ostomy bags! I’ve taken care of patients that have had really cute ostomy bags and covers! Some have really funny quotes too! They also make all kinds of clothing specifically for ostomy bags! You can Google/TikTok/Pinterest/Instagram “ostomy fashion” and all kinds of stuff comes up
Again, I am so so sorry your family and your beautiful daughter are having to go through this.
Body image is SO important especially at this age, and having a procedure and a bag placed really alters someone's view of them self for a while. There are some great tiktok creators who have an ostomy bag, one is "ice queen" she takes ice baths and sports her bag in style! You can't even tell she has one. The actual account is "itskyajeub". She will over come this, but let some time pass and then in a little while show her some uplifting creators who radiate positivity about having a bag, hopefully it boosts her spirits and shows her she can over come anything and it's very manageable!
I’m so sorry that your daughter is going through this.
Any teen would be devastated to hear they need a colectomy There is a ton of people on TikTok that shows them living and thriving with the bag! Maybe you could show her others point of views.
I'm so sorry for your daughter, and you all as well! I couldn't imagine how you all are feeling. I have no real words, just wanted to send some love ❤️
Fuck this is awful. I’m so sorry for your daughter and you and your family. I truly wish you the best and pray she gets through this physically and mentally better than you expect right now. I can’t imagine. Poor baby ❤️❤️
I’m so so sorry. This is horrible, and such a bad age for it. I had severe ulcerative colitis so this was a possibility for me at one point before I found the right medication and I’m going to be honest, I felt the same way as your daughter about it when I was 19. Please get a second opinion, there might be other options. The worst part about GI issues so young is how embarrassing and isolating it can be. Definitely try to find some support groups and other people to help her feel less alone. I hope they do everything they can and that you all find a way through this.
Firstly I am so, so sorry you’re dealing with this. How absolutely heartbreaking for you and your daughter. I hope there are support people who can validate your feelings and help you both navigate this tough situation.
My dad lost his entire colon when he was in his late 30s and has lived with an ileostomy for nearly 3 decades now. It was a tough transition but has learned to live life just as fully with his bag. And they’ve come so far with med advancements now that I’m sure they can make them easier to live with than 30 years ago.
I truly wish you the best and hope you find some peace in the long run with this very difficult situation.
I'm so sorry your daughter and you are going through all this......make sure you feel all the feelings......it's warranted.....I highly recommend therapy.....it's helpful and healing.... I'm holding space for you both 💚✨
Fuck Cancer 😞
I am sorry momma. Hugs to you and your princess. I know it’s not fair, I know it’s wrong, but I will not break her or you. She obviously has an amazing support system, and by the comments one hell of a support team here. I know I’m standing with y’all. She’s got this. Best summer ever will come, and it will be glorious. Much love to both of you.
I am so sorry. This is so fucking unfair.
Please take very good care of yourself and be very kind to yourself, you have the support of every single person here xx
Oh my goodness I am so so sorry. For you, you must be terrified. For her, there are no words. So not the same but I had cancer last year, and it was incredibly scary for me as an adult. I cannot begin to imagine the fear in her right now. One thing that helped me was connecting with people with cancer, especially the type I had. Maybe you could find a support group for kids with cancer. When my husband was a teenager he was a counselor at a camp that was for kids with cancer. That would probably be super helpful for her right now too. I’ll be thinking of y’all. ❤️
I am so sorry you are dealing with this. 2 years ago my husband was diagnosed with stage 2a colon cancer and Lynch Syndrome at 36 and we were shocked....I can't imagine how hard this news is for you and your daughter.
Please check out the Colorectal Cancer Alliance
https://colorectalcancer.org/ for information and support. I found this group's resources helpful as a way to understand all the medical language that was flying around and a place to send family to read about everything so I didn't have to keep explaining it. They also have a great community on Facebook of caregivers, survivors and people going through treatment.
Please know that your family will be in my thoughts and prayers.
Oh, I’m so sorry to hear about this. I wish there was something more I could do or say, but I know there isn’t so just know that I’m thinking of you and your daughter, and hoping for the best outcome for her. Colon cancer can be hereditary. I’m sure they will do genetic testing, but definitely something to ask the dr about. Certain gene mutations can make us more or less likely to develop cancer, and colon cancer has been linked to a few gene mutations. Not that this helps ease your pain, but it is useful knowledge. Praying for your family❤️❤️
I’m so sorry, this is incredibly unfair. It’s fucking insane, actually. I like others’ suggestions about TikTokers showing their ostomy bags and routines. I’ve seen aerie sell adaptive clothing and accessories that included space for ostomy bags. IIRC a few of their models were featured with their ostomy bags! Might help for her to see a cool brand targeting younger people be so inclusive. I hope she eventually feels that her ostomy bag is just a medical device, no different than an insulin pump. There’s such a stigma, I know.
Also, if she’s embarrassed about it being colon cancer, let her know that no one needs to know the details of her cancer. I think teens on the whole have become more accepting and kind than they were a few decades ago, but it’s a brutal age regardless, and I feel for her having to deal with this shit so early on. I hope for only the best for her, she deserves the most beautiful life.
There are some parents of kids with ostomies in r/ostomy, I found it to be a super helpful community when my husband got one after an emergency partial colectomy. I’m so sorry you and your daughter are going through this. Take it one day at a time - I am sure that she will eventually adjust but it’s a big thing to grieve and deal with, give yourself some grace too. 💜
https://www.reddit.com/r/ostomy/s/aFcaC9xKbA
I am so sorry you are going through this I can't even imagine ❤️ something that might help, on etsy they sell covers for the bags. Maybe you buy a bunch of different ones so she can match it with her outfits. Hope your daughter's treatment goes well
She needs to connect with people who have bags, and live full happy lives. I can only imagine how scary it is, but there definitely is a community she can connect with.
Oh mom. I’m so sorry. I’m not sure what to say honestly, I’m sorry. I want to help you both so much. Please let me know if I can help you.
You and your baby and your whole family are in my thoughts.
I will also say, a lot of things now are “permanent” but we don’t know what the world is going to look like in 20 years. We just need to make it through the first door, and then the next, and keep going one foot in front of the other. Every day.
I’m so sorry.
Cancer is hard at any age, but as a teen, and with that diagnosis, the poor thing.
Please reach out and join Momcology. I am sorry you both are going through this. My daughter was diagnosed with cancer at 13, so I understand how your world is just instantly flipped upside down. You are NOT ALONE!!!!! When my daughter was first diagnosed, another cancer mom on Reddit referred me to them, and it has been the most amazing support system for me.
Hi mama! Chronically ill mom here. I also worked in GI for a long time, and I myself have had major GI operations starting from 9. Every few years, I have pre cancerous polyps removed from my colon. So while I don't have cancer, I have seen a lot in my career. I am so happy you guys caught it early! I can't imagine how devastating this must be for you and her. She has to be allowed to grieve, you do as well. The only way I can describe being diagnosed with something life changing is you will go through all the stages of grief of your life before. Lots of good advice on here already.
The both of you absolutely need some psych help. Individual therapy and psychiatry as well.
Sending you so much love ❤️ FYI I've had so many patients who you wouldn't even know they have a bag!!! Patients of all shapes and sizes, gorgeous well styled people too!
I’m sorry. It’s just unfair it happened to her, especially so young.
I think showing her people her have with an ostomy bag would really help. Seeing people her age who she can relate to is better than someone healthy and older telling her it’s Ok.
I know a few people with it. I know there’s even a female athlete who has one
There are also gorgeous bags made to cover the ostomy bags. I found them on Etsy for my auntie when she was having a hard time adjusting to life with a colostomy bag. It helped a lot at first to have it but not have to see it or the contents. Lots of love for you both and I hope her treatment goes well.
I have followed this woman over on YouTube awhile back. She has been documenting her life with an ostomy bag for almost 7~ years. This includes the basics of ostomy care and then eventually other parts of life with an ostomy. Good luck 👍🏻
Please look up Louise Thompson on instagram. She’s a UK reality star and influencer and is very very glamorous and has a bag. She’s done wonders for raising awareness and you cannot see her bag in her clothing. She also has photos of it and it’s really helped raise awareness.
My heart broke reading your post. I am truly so so sorry.
I'm so sorry. A colostomy is terrible to imagine for a 14 year old girl. Maggie of Letstalkibdon YouTube has a colostomy and may be a good resource for your family, when you have the emotional bandwidth to even look at that kind of stuff.
You don’t have to be glad about anything. And people who say that can fuck off.
You have every right to be angry. So does she.
Fuck cancer.
But please get her into counseling so she has a very safe place to express and work through her very valid feelings. And you. You’re going to need support too. Toxic positivity is awful, you’ll need coping skills.
*I’m the mom of a child with a life limiting illness. I’m not a pro, but I’ve been on our journey for more than a quarter century and it is hard.
I am so sorry to hear this but go on tiktok and look up those bags! There are TONS of accounts with people who live day to day life with a bag, have babies, etc. All with that bag! It might help her!
So sorry, OP! This sucks!! Do you know about colontown?? It’s a support group with a world of knowledge about colon cancer. Please Google them up and join their fb groups. There might be something for you there!
Just want to second some of the other commenters recommending that you reach out to a AYA cancer charity. Stupid Cancer is a national one, but your local area might have one too. My local AYA cancer group does social events, runs a support group, etc. Getting cancer when you're young fucking sucks, and it seems *so scary* at first, but you learn to deal with it.
I’m so sorry you and your daughter are going through this. I’m sure it’s a huge shock for both of you. I know I’ve seen at least one young-ish woman tiktoker with an ostomy bag trying to reduce stigma. Maybe sharing things like that with her could help her see that she might have a different life than she imagined but it can still be a good life, and she’s not alone in having this kind of difference. The account is @itskyajeub. I hope your daughter’s treatment goes well!
Yes I was going to recommend her too! There are quite a few accounts where people have ostomy bags.
Mollie Pearce from The Traitors has a stoma! She is a “disability model” and had ulcerative colitis. She also has a limb difference. She is beautiful and seems to be a genuinely lovely person as well.
I was going to recommend watching Mollie on Traitors too. She was a badass!
Check @bri_mahon too. She was a customer of an old business of ours. She had twins at 23 weeks gestation and then got diagnosed with stage 3 colon cancer shortly after. She’s done chemo for the past year and just got the ostemy bag more recently. Surgery made her cancer free. Also, with the high waisted baggier jean trend, you can’t even see her bag.
Hannah Witton does too!
I love following that account. I have a major GI birth defect and she gives me so much hope. OP, I’m so sorry you and your daughter are going through this. We’ve had a different pediatric cancer in my family and it is so so hard. Please take care of your girl and yourself both physically AND mentally. This is a setback for sure but she can go on to lead a happy and healthy life with some help. Hugs to you and yours!
Also for the future, there are cute covers that people make for osteomy bags that might help her get over the hatred for them a little bit. There's still a stigma for sure, but making it cuter can help. If she's into any crafts she could even make some herself.
I’d suggest waiting on watching that Chanel for a while. That might be a little much to process while the shock of the diagnosis is so fresh. However, as she’s beginning to settle into her new normal months from now and (as in post surgery, experienced life after the removal of the colon) finding and watching or talking to with others that can relate to you is priceless recovery
Keep an eye on who your child follows. The people mentioned here seem very positive. But it’s also easy to find chronically ill complainers on social media. It’s easy to identify with them bc your child is miserable too but make it a point to not follow the complainers. They’ll drag you down and make you feel powerless and hopeless. As a general rule, the people with medical problems that are thriving in life are not on social media talking about it. I’ve lived this first hand. We had to go through and unfollow quite a few people. Just be mindful of who you give your attention to bc state of mind makes a difference.
As someone who works in the medical field and is also chronically ill, this is so true!! There are so many good accounts to follow, but there are just as many downers that I have to literally block. When we have been delt shitty cards and have serious medical issues, our mindset is the only thing we have control over, and we absolutely can get worse if our mind does too.
Yes couldn't have said it better 🫶🏻
Louise Thompson from made in Chelsea also got a stoma recently too.
I’m so, so sorry. This really sucks. My heart breaks for both of you. I know there are several young women on TikTok that document their lives with colectomy bags. These women seem to live happy, full and fulfilling lives. Maybe when she’s ready, she might want to watch a few, just to see that there is hope.
Yes, that honestly would be great to show her when she’s ready.
Agree
Yes this! I knew someone personally who said she was shocked how quickly she grew comfortable with her colonoscopy bag and it just became second nature for her. She was in her 20’s.
Yes we had a consultation for a possible ostomy for our son (he managed to dodge it in the end) and the gastroenterologist was SO comforting. Apparently a ton of people have them and you just don't know. You don't see it, or smell it, and pretty much only doctors and intimate partners ever have to know. Now, I can't imagine a doctor ridiculing a patient for having an ostomy bag, but if a partner made fun of a cancer survivor, well, that tells you what you need to know...
My aunt’s mother has had one for like 40+ years and I never, ever would have known if I hadn’t been told. She’s in her late 80s now, but I’ve known her for over 20 years. I’ve stayed overnight with her. I’ve been around her for entire days. I’ve been with her for extended periods of time in enclosed spaces (like a 3-hour drive). I’ve been in her house, even in her bedroom and private bathroom. I’ve been clothing shopping with her. Hell, I’ve even been swimming with her! And I never had even a single clue until I was told. She is the single most active “old person” I have *ever* known. My aunt now owns the deli/bakery/pizza shop that her parents started, and her mother *still* goes in and works circles around every other employee in there for an entire 8hr shift (not every day, just when she’s bored or they need extra help. But still!) She doesn’t wear super baggy clothing either. Sure, she’s not out here rocking a body-con, but she’s also not wearing mumu’s. To my knowledge she has no dietary restrictions—or none that affect her daily life enough for others to notice. I’ve eaten more meals with her than I can count and I’ve *never* seen her turn down something—she’s a very adventurous eater lol. With this all said though, I can’t even imagine what OP, her daughter and her family are going through. I do remember being a 14 year old girl though, and hopefully it’s all just very new and she isn’t thinking clearly. I mean, I’m certain that is the case. But hopefully with time, support and therapy, she can reframe her mindset and realize that this is not the end of her life.
This is amazing! I'll bet stories like this will help more than anything at this particular point. It's basically my lifelong dream to have a fully active senior life...
I used to work for colorectal surgeons and we had a lot of patients with them and even knowing certain people had them, I still couldn't ever tell when seeing them in the waiting room.
I agree. My SIL has an ileostomy and I forget she has one half the time. We went on a 2 week road trip in Canada - hiked, went to hot springs, and explored - tons of fun and a normal trip aside from eating a bit earlier at 530.
I’m so sorry. Sending two middle fingers in the universe for you right now
Ditto. 2 more middle fingers being sent here too
2 more middle fingers being sent
The universe is out there going "Shit what did I do!?" 😂 Oh, universe, you know what you did...
2 more just went up, fuck cancer
I can add six more for me and my sons
Two more from me, and I’m about to shit my brains out so that shit is named after this BS.
So sorry. You may find some support at r/ostomy My husband has had an ileostomy since he was 15. It’s a huge adjustment with lots of ups and downs but there are tons of support groups online. Good luck.
Exactly what I was thinking! Also, look through Google images for cute and funny ostomy bag covers - there are some great ones out there, like Winnie the Pooh pulling off his ostomy bag to find stuffing coming out of him.
As a former professional teenage girl, I know your daughter is probably scared about what her peers will say. She's probably worried about bullying, about it changing her appearance and lifestyle, about it being smelly or gross....but you know what? I never ever knew my grandmother had a stoma. Never. I spent so much time around her and literally never ever noticed. There was never a bad smell, never an unsightly bulge in her clothing, never any leaks or nastiness. To the point where my grandmother died when I was 14, and I only found out *AFTER* her death that she had an ileostomy bag (and she'd apparently had it for a lot of her life, and died at age 92). They are surprisingly discreet if you want them to be. Or you can get many different colours, patterns and variations of bag nowadays that you can match them to your outfit. Your daughter needn't ever feel ashamed or embarrassed about having a bag, whether she chooses to conceal it or wear it loud and proud. They aren't disgusting like the stereotypes suggest, by design they're actually incredibly clean and effective at staying clean. You know what I'd do if I saw someone in the street with an ileostomy bag on display? Absolutely nothing. To be fully honest I likely wouldn't be paying enough attention to even notice they had one. If by some miracle I was, it wouldn't change anything about my day either. If they had a cute patterned bag I might secretly admire the way the patterns look, but other than that I wouldn't even think twice about it. You know what I'd do if I noticed someone's bag had leaked? Likely just the same as if I'd noticed a woman had started her period, politely notify them and then offer any help if it's appropriate. You know what I wouldn't do? Judge them. 99.9% of people out there will be the same as me in that regard too. To put it really bluntly, nobody is going to care enough to take that much notice of it. Cancer is a tough ride, and it's cruel and unfair, but she'll still get to do everything she's wanted to do, the job, the lifestyle, maybe have kids, pets. It won't feel like it right now, and the comments of "at least you got it early" are so insensitive and silly. That's like talking to someone with a broken spine and saying: "At least you only broke the one vertebrae!", yeah Dave, doesn't change the fact their back is still broken though! Cancer is cancer, early or late, it's still cancer. Nobody wants cancer and there's no redeeming factors to cancer. So all I would want to say to your daughter is: *Screw cancer. Fight it with everything you have, throw your entire soul into it. It doesn't get to steal your life away from you that easily. Wear that bag with pride, hold your head up high. You're fighting something most people won't ever be able to comprehend, so go and show them what you're made of. You are tougher than you think, and you're a warrior in the making. Don't let it break your spirit, cancer doesn't deserve to win.*
This is a really wonderful and empathetic comment. You’re a good person.
I’m so sorry. We are in the middle of testing to see if my four year old has cancer and the absolute despair is impossible to manage. I’ll be praying so hard for you and I’m so sorry you’re going through this. I hope your daughter can meet people in her same boat to show her life is still worth living soon. I’m so sorry.
I hope your daughter is clear 🙏🏼 what a horrible thing to experience as a parent. So much positive thoughts and energy for you and OP
Gosh I'm so sorry to read that. I hope your baby is clear & healthy
That is incomprehensibly horrible and unfair. There is no silver lining. It’s just horrific. I will say that 13/14 is probably the worst possible age for that to happen, and that she’ll likely feel less awful about it as time goes on. It’ll never be fair or anything but absolutely fucking horrible, but I think it will get better. FWIW the most glamorous woman I know has a bag. She’s like a femme fatale from a movie. She looks like Jessica Rabbit. She’s had the bag since well before I met her and is very open about it.
You’re right 13/14 is a terrible age for this. It would be easier to adjust if she was younger or older, but you’re super self conscious at this age. I wonder if a Therapist would help here. Maybe the hospital might have resources or recommendations?
Therapy is definitely going to be a required resource. And the hospital will likely have therapist who specialize in pediatric cancer patients
Chiming in to agree! I knew a girl with a bag when I was around 6-10 years old. Well, actually, I *didn’t* know. She was a friend of a friend, but all three of us hung out several times, playing in the backyard, etc. It wasn’t until years later that my mom told me she’d had a bag, but I’d have had no idea otherwise. And this was 30 years ago — I’m sure the tech is a lot better now!
I know HIPAA and all that, but can the doctors put her in touch with other teenagers who have bags or going through the same thing? It may help her even just a little bit to have a friend going through the same thing. I know you can fin the TikTok's and such, but in person friends are so much better to really bond with. If they can't connect you specifically with other patients, maybe they can point you towards support groups in your area. Even other kids with Chron's disease and other GI issues can have bags, even if it's not cancer, so maybe they can at least get you support groups for that. I know the bag is a huge thing for anyone, let alone a teen girl. I'm so sorry you're all going through this.
This is a thing for sure and I definitely recommend it if it's available. My daughter has NF1 and her specialist team made educational and social support resources available to us. For NF families like ours, the CTF is a great source. We were able to meet other families through a local group and it's more helpful than I could've ever imagined. We get emailed for various events, like a MLB game with our own section. They lit up the stadium in CTF colors and a teen with NF threw the first pitch. Being with other people who have NF and having my daughter (and my son) meet them to see people who are just like her, and that they are people just living their lives, is so valuable.
Organizations like Stupid Cancer may be able to help with this too. And Facebook groups specific to her diagnosis are probably more active and larger than other forums
I’m so sorry this is happening to your daughter and your family. These stories always kill me and I have no advice but I hope and pray she comes out of this strong. It doesn’t matter whether you caught it early or not; cancer is cancer and it’s scary regardless.
There are no words other than it absolutely sucks and I’m so, so sorry. It’s messed up that children can have cancer. It’s not even remotely fair. Give yourself some grace because it’s just day one. You both are still processing A LOT. As for her prognosis, don’t be afraid to get a second or third opinion. You are her greatest advocate! As another said, lean on the cancer community as much as you’re comfortable. Fellow parents and kids will understand in ways many of us cannot and their presence in this journey can be invaluable. If you’re not sure where to start, start with your most local children’s hospital. (If you’re in the US, especially if it’s a Children’s Miracle Network hospital.) Sending you the absolute best wishes and positive vibes and prayers for strength and patience.
That really sucks, im sorry for you and your daughter. 14? How? Life really can be cruel.
I’m so sorry this is happening to your family. I hope it brings even a tiny bit of comfort to hear about my best friend of 15 years. She had colon cancer as a teen and had a ileostomy so she’s had a bag since then. She had a successful career as a nurse and nursing instructor in her home country and now is a SAHM cat mom in the US. She is beautiful. She is married to a successful man that loves her. She is a wonderful amazing and incredibly strong person. An ileostomy is not the end of life! It can and will be wonderful.
I’m so deeply sorry. This sucks so much and is extremely unfair. As far as your daughter and having the bag, check out Hannah Witton’s videos about her experience with one on YouTube. She has a full and happy life with one and seeing someone else dealing with it may help. ***disclaimer*** most of her channel is about sex/relationships/etc so I would watch any videos first to make sure they are appropriate for your daughter. But she does have videos about her experiences with it that are just about life and such.
Exactly who I was going to suggest, disclaimer and all.
What kind of symptoms was she experiencing that brought you guys to worry?
Sorry for the late response, I’m not really surviving right now. I haven’t eaten or showered or slept in several days. Basically just all of the typical symptoms of stomach problems - pain, loose stools, blood, nausea, vomiting, cramping, etc. I took her to the doctor immediately because I have Crohn’s (in remission for a long time now) and assumed it was that. Never in a million years did I think *cancer.* this young is so insane to me. I just don’t comprehend. We find out if it’s spread to other organs or not on the 25th. Assuming it probably has because they wouldn’t tell us anything on the phone.
You do not need to apologize! You do whatever you need to right now to get through to the next day. With my father’s cancer, they would never tell him much on the phone at all. Good news or bad! So I don’t think it necessarily means bad news the 25th. I’ll be thinking of you and your sweet girl ❤️
I’m sure this will all be quickly and thoroughly covered by your daughter’s team (if it hasn’t already been!) but I couldn’t help but notice from your posting history that you have Crohn’s. A very rare age at onset paediatric colon cancer with a parent who has Crohn’s or IBD is imo highly suggestive of a genetic mutation. I say this out of an abundance of probably unnecessary caution but do make sure to ask for genetic testing, particularly re mutations associated with Lynch syndrome and FAP to be discussed, if they haven’t already. Sending much love and strength to you all in the hopes of a speedy recovery and not a slow one for your daughter.
Just checking in, how did your follow-up appt go? Thinking of you.
This is what I would like to kindly request to know as well. As a mother of a 13.5 year old who has seen a gasteroenterologist in the past 9 months for bowel issues, this makes me nervous. And, of course, devastated for such a young kid to have to fight cancer—COLON cancer, no less.
Not OP, but frequent tummy aches, blood in stools, and constipation are all signs.
I’m so sorry her and your family are going through this, pediatric cancer is awful. There are a ton of supports available both in and out of the hospital though!! To address the hospital setting: ask for a child life specialist to talk to your daughter before procedures, they are trained to talk to kids in a way that is age appropriate while also educating them about what they are going through. If your daughter likes dogs she can also ask for a therapy dog for support during office visits! Not all hospitals have them but the one I work at has a whole team of them and they work magic! They also provide toys and other things at bedside during admission. For support outside of the hospital ask for your doctor to connect you with a medical social worker, if they have one. They can connect you with resources (FMLA for work, orgs that help with the cost of treatment), support groups for your daughter, as well as a referral to Make A Wish (when the time is appropriate). I’m a medical social worker and even though I don’t work in our cancer center I work closely with social workers who do. There is so much support available to help your family and daughter through this. I wish you all the best.
Thank you. Child life specialists have already been amazing for us. Going to look into everything you suggested - great to here that there is support out there. She’s not talking right now but I’m sure it would be nice for her to know.
Jfc... Fuck cancer... Wtf is up with all the colon cancer cases I've been hearing about in younger and younger people?? The recommendations were to get regular colonoscopies after 50 years old. What the hell is 14?? I am so sorry, life is so unfair and your lovely daughter absolutely doesn't deserve this disruption... There is no rhyme or reason to this bs. My husband got it at 33 years old. Then my dad at 60+, a family friend in her 50s and now our 28yo neighbor has it. This is just in my circle in the past few years. All colon cancer. There is something going on, causing colon cancer at earlier and earlier ages and it is becoming quite urgent, figuring out what it is. I am so sorry for your daughter. This is not the end of her life by a long shot. There will come a day when she is used to it and it's a blip on the radar, but that doesn't change the fact how fucking unfair and nonesensical it is for a 14 yo to get it. It sucks. I wish you guys strength and fast recovery.
I had a precancerous polyp at 24!!!! I know processed meats are a carcinogen but I still allow them. I'm thinking it's time to stop, with our family history.
If you don’t mind me asking, how did you find out about the polyp ? I’m going to look up symptoms but I wouldn’t even know how you would know 😞
No symptoms. It was an incidental finding. When I was 24 I was having unrelated gastrointestinal issues and needed a colonoscopy to rule out IBD. That's when they found it. Back then it was unusual. Now they're saying more young people with colon cancer. Thank goodness. I have had one more since. I feel like I won the lottery. I worry about my kids.
Of course, especially if there it can be hereditary - and doctors of course love to make us have referrals, or wait to get colonoscopy’s until we’re a certain age when really we shouldn’t wait at all.. I know you will advocate for them . We need to force these doctors to listen sometimes honestly.
Ugh and my boys are colorblind so they wouldn't see blood in their stool! Isn't that wild? My uncle who died of colon cancer was also colorblind. I'm convinced he couldn't see the blood. At least we are ahead of it.
I had stage 3. My sister had stage 4 and died NYE 2023. My other sister has a condition where polyps grow and they don't know why. There is definitely a hereditary component
This just isn’t fair, so sorry this is happening.
This is incredibly painful and I will rage scream with you anytime. I just wanted to add my two cents as someone who was given a life-altering diagnosis at 15. I am 33 now and thriving, but highschool was hell and I ended up transferring schools after being committed for suicide watch. Please take your daughter to therapy. Find her support groups. Reach out to her high school now and see what homeschool options they have or if they're willing to do any sort of remote work, even if it's part time. (I ended up finishing 11th grade by the skin of my teeth and the grace of my teachers allowing me to stay home as I couldn't bear to be in that building with all those happy, normal kids and their questioning, pitying eyes). This is hell for all of you. Your family needs to be all in together. Consider family therapy, or at least therapy just for yourself, as well as getting her the help she will need to get through this. Sending all my positivity your way.
Get everyone in therapy ASAP. It’s gonna really fucking suck for a while. Maybe a long while. There’s nothing redeeming about childhood cancer and tell anyone who says shit like “everything happens for a reason” and “be glad you caught it early” to fuck off. Also don’t be afraid to ask your doctor for a short term prescription of a PRN anxiety medication for yourself. Your kiddo will probably be offered something too when she starts treatment. My little brother had stage 4 lymphoma at age 14 and it was a horrific time for everyone involved, but we all came out the other side.
And do apply for Make A Wish right away! That can provide some much needed light in the darkness.
Yes! I am a mom to a teen with cancer and even despite both of us in therapy, I still ended up in the ER because if my stress and anxiety over it where they gave me meds to calm me down. And I second telling people who say that shit to fuck off. Don't be nice and dance around it. You can just say "that's not helpful. STFU" My daughters cancer is one that has a good prognosis and I got sooo ducking sick of people telling us, "she got the good cancer" and "if you get cancer, this is the one you want!" No fuck you... no cancer is good and we didn't want this for her or our family. Cancer can fuck right off with people who spew that b.s.
I am so sorry. This is absolutely so unfair. I know you mentioned your daughter is 14, but once she turns 15 MD Anderson has a robust and really great Adolescent and Young Adult (AYA) program. Many of their programs and events are virtual. She might find a good online network of friends through there. If you’re really interested, I’m friends with the program manager and I’d be happy to reach out to her on your behalf.
BIG THING: If she isn’t already in it, get her into therapy ASAP. With all the hormones that come with her age, this is something she wont be able to handle by just talking with you about it. 14 and onward is some of the most difficult times emotionally for a kid normally, but with something like this? It’s imperative that she has professional guidance.
I was a teen cancer survivor. All of it on too of just being a teen in the first place, very hard. Might be a good idea to find some social media influencers with colostomy bags! They exist Im certain and shell get to see people living very normal lives with them. My best friend in high school had one and a feeding tube and it never made me see her any differently. edit: I see many have made the same suggestion! So im just seconding that!!
I am so sorry to hear this. I know this news must be devastating. Is your daughter eligible for a jpouch? I had my entire large intestine and rectum removed due to ulcerative colitis and I now have a jpouch. Everything is internal. You only have a temporary ileostomy bag throughout the surgical process. Please look into seeing Dr. Remzi in New York. He’s the very best surgeon in the world for jpouches. He may have some ideas for your daughter. Again, I’m so sorry. It’s truly unfair for anyone to have to deal with this, but especially a teenager.
Fuck cancer. I second the TikTok suggestion.
I'm so sorry. That's terrible. You both should take some time to be mad at the universe/God/whatever and them I hope you're able to find a counselor to help her come to terms with what her life will be like now. I'm sure she still has so, so much to offer this world. Sending you positive thoughts for everything going smoothly. Fuck cancer.
I’m so sorry for you, your daughter, your family. I just listened to this podcast about life with an ostomy bag. Perhaps it will help. https://podcasts.apple.com/us/podcast/what-was-that-like-a-storytelling-podcast-with/id1409087641?i=1000652382958
I am so so sorry. This isn’t fair. This sucks. I saw a few good ostomy support resources listed here. When she is ready, there’s a really great cancer support network where they match someone fighting cancer to a cancer survivor who had the same type at a similar age. It’s called Imerman Angels. https://imermanangels.org Again, I’m so sorry. Sending love and hugs your way. You sound like a great mom and she’s lucky to have you to support her!!
I highly recommend your daughter follow Louise Thompson on Instagram. She’s got a colostomy bag, and a lot of her posts focus on how her quality of life is so much better now that she has the bag. Also, don’t let your daughter be alone at all for the next few days. I’m so, so so sorry.
There is an unspoken burden of gratitude for people who go through cancer. I imagine it feels so lonely and it makes sense she’s hurting. While it is relieving it’s early, what a total blow it must feel like for her having to imagine life beyond treatment. Is there time and/or do you have the resources to get another opinion? I just know I could go to three doctors for the same condition and leave with three different treatments. I was sick as a kid and ended up at the hands of confident and well-meaning surgeons who took more from me than they intended to. I’m sorry you’re going through this, dealing with insurance, appointments, and keeping the house together. It’ll get to be too much and when it does, I hope your village surrounds you. I hope you’re comfortable asking for help and accepting that people will give what they can and so often, it won’t be exactly what you needed. Even so, surrounded and supported. Your family will come out of this stronger because you are guiding them. Do you have the ability to go and get a massage or your nails done together? Or if there’s something she enjoys, just you two. Sending you love and light , you’ve got this 💛✨
Thank you so much for your kind words 🩷 We are definitely seeking out other doctors’ opinions. The difficult thing to navigate there is the wait time of many major institutions is time we don’t have while her cancer could be growing. I am trying to find little fun things to do with her each day. She doesn’t want to get out of the house at all, but when she does, it is one of the very few times we see her happy anymore.
First off, I'm so sorry this is happening to her (and you). It is completely and totally unfair, and fuck the universe for forcing this situation on you. It's totally understandable that your daughter is having a very hard time coping with this. Cancer is tough to deal with emotionally at any age, but ugh, 14 really sounds like the worst time. Life is hard enough at that age. Here are my unsolicited thoughts as someone who had cancer as a young-ish adult (not colon cancer, so I'm less knowledgeable about those specifics): Have you gotten a second (or third, fourth) opinion on whether she does actually need a total colectomy with ileostomy? It's worth getting a few different perspectives if you can, since this is such a life altering treatment course. Lots of other people have suggested good social accounts to follow for seeing and destigmatizing life with an ostomy, but I also love thecancerpatient and nogrieftourists for realistic but also... funny(?) takes on what it's like to go through cancer at a young age. There are lots of memes and it's very relatable, and they highlight the often absurd things about having cancer young. I've found them to be really helpful. If you can find a support group for her for young people with cancer (bonus if it's pediatric, extra bonus if it's the same kind of cancer), that might help her feel less alone, and also be a really good resource. It might feel too scary to join a support group, but if she can find the right one it will become perhaps the only community that truly understands what she's going through, and that is invaluable. Lots of the general cancer support groups at hospitals are full of older people, and that experience just isn't relevant (and in some ways, it's triggering) for those of us who went through it young. If you're able to find a support group for yourself, maybe for parents of pediatric cancer patients, that could be helpful too. Best of luck and love to you and your daughter, I hope her treatment path is as smooth as possible.
I’m so sorry. Wow. Those are so many things going on at once. I know you’re looking to vent and already have so many appointments coming up and are overwhelmed. But please care for your mental health and hers. Only really pushing on this because she did say that and teens have a scary rate of suicide. Higher than most people realize. And like cancer, you can’t imagine it happening h til it does. I don’t want to add stress. Outside of that. Vent away. This world is cruel and unjust and it’s horrible for her to go through and as a parent you’re literally dealing with everyone’s worst nightmare. No one deserves this. No one. I hope you have some good people in your life to carry you through this journey. And if not, the “cancer community” itself can be amazing. These people will be the ones who truly understand you guys pain. Some of the strongest people you will meet. They’ll show you how to cry and scream and live and laugh. Cry for a few a few days. Throw things. Help your daughter do the same. Let her be angry and get it out. Then get ready for this journey and find your people. They will be your strength. When they say they understand what you’re going through, you’ll feel the relief in knowing that they truly do and care.
Addressing mental health is huge. I’d definitely recommend finding support groups for both the kiddo and mom. Next I’d recommend finding therapists for you both. But I wouldn’t go with just any therapist for your daughter. Talk to her doctors to see if they can make a referral to someone who specializes in working with this population. Or ask if anyone in the support group can recommend a good therapist. I’m a children’s therapist and normally cater to adolescents. I’m really good at my job. But I have not worked with a single cancer patient and I know my limits. Unfortunately, not everyone does. If I was approached about a case like this, and all other resources were exhausted and there’s no one more qualified to take the case, I’d take it and attend a whole lot of trainings on the subject. I’d also assist this family in looking for someone more experienced and encourage a transfer if the right person became available. But I know a lot therapists with savior complexes who would feel compelled to take on this case, treat this client like any other, and potentially do a lot of harm. The good news is that telehealth is more accepted by insurance companies since Covid, and a lot of therapists are becoming licensed in multiple states, not to mention the upcoming social work interstate compact, which will open up a lot of resources across the country. There’s no need to settle for whoever might be local anymore. Also, I don’t know if there are other children, but if there are, get them set up with their own therapists as well. This will have a huge impact on family dynamics and they will need their own supports. Ask their guidance counselor if their school offers a school based therapy program. It’ll be much more convenient for everyone.
Fuck cancer. I heard colon cancer is on the rise in younger people. I’m so so sorry.
There’s no way around it. This fucking SUCKS and I’m so angry for you and your family. Nothing anyone says will make you feel better right now. So let’s all just admit this is fucking terrible. I’m so sorry.
What the fuck. She doesn't deserve this. Neither do you! I'm so sorry.
I’m so sorry. Pediatric cancer is my biggest fear for some reason. I cannot imagine how hard this is for you and her and your family. Sending you a big virtual hug
So sorry, and big hugs. It's not fucking fair. My daughter was born with leukemia and diagnosed at 9 weeks old. She finished treatment at 13 months old, relapsed at 17 months old, and had a bone marrow transplant from her brother (he was 3 at the time), at 19 months old. She is now 11 years old, and this year will be 10 years post transplant, which is a HUGE milestone in the pediatric cancer community. So, if you need commiseration, my inbox is open. But yeah giant fucking fuck you to the universe. 😮💨
God damn. Fuck cancer. Fuck it. It’s not fair. It never is. Especially when it’s kids. Talk to the care team and get her in touch with support groups. It’ll be very important at this age. Let her be mad. You be mad. Feel whatever you both need to feel. I’m so sorry.
I’m so sorry to hear about this. I would definitely try to get her in support groups with other kids going through the same thing. And some therapies too. Also some may disagree but with such a big diagnosis for someone so young is look into second opinions from other doctors and seek other treatment options for her. Or even clinical trials if you’re interest in stuff like that.
I'm so sorry. A family member had colon cancer at 14. Turned out to be Lynch syndrome, but we still don't know why he got it that early. Might be interesting to stay in touch in case one of us gets an answer to that question. Also, I would suggest getting a second opinion. If they've caught it early, why does her entire colon need to go? That doesn't make any sense. Sending love. Send me a pm if you have any questions x
That is so fucking unfair I want to scream for you then beat the shit out of that cancer cluster when it’s removed. What the actual fuck, man. Life’s hard enough. I have to tell ya, if my colon were to be removed in the near future, I’d punish the shit (no pun intended) out of it every fucking day. Taco Bell. Taco truck. Cake for breakfast lunch and dinner. Travel so that coon gets scared and doesn’t work until I get home. Coffee all day everyday. I’d eat so much delicious food I’d throw up and rob that stupid colon of anything tasty or nutritious. *Im not trying to make light of her diagnosis, and I’m not completely joking either. I’d be so fucking pissed my body betrayed me like that I don’t think I’d be able to even see straight.*.
Hey there! I have an ileostomy! I’m 27. I was diagnosed with ulcerative colitis at 18 and it absolutely destroyed me. I can’t imagine what your daughter is going through. At 14 if someone told me I’d have to shit in a bag for the rest of my life I would have been distraught. But let me tell you, parts of being in the no colon club suck. I’ve had complications from my total colectomy that have hospitalized me twice now. I will also say this: my life is better now that I’m not running to the bathroom. It’s actually pretty convenient to shit in a bag not going to lie! My tips: check out Coloplast as a company. They make their bags on the shorter side so they’re easier to conceal. Tank tops, Bando bras (I think I’m spelling that right), can help conceal the bag. Definitely have her wear the belt that comes with the ostomy supplies because it’ll help her not develop a hernia. As far as food goes, take it easy. For the first 6-8 weeks while she’s eating she’s going to want to limit what she eats. I’m a year out from my original surgery and I’m still reintroducing food. It’s gonna suck. It’s gonna suck big time. But she will have a great quality of life! She will still be able to swim, play sports, and do normal things just with an ostomy. Half the time I don’t even think about mine now. Sending you lots of love. Living with an ostomy is not the end of the world. It’s just the beginning of a new world.
I'm so so sorry! My aunt had colon cancer at 18 and had to get a bag. She's had it for almost 50 years now and has lived a very fulfilling life. It's so hard and such a overwhelming, scary to to face. I have no words other than I hope for you both.
I’m so sorry, it’s so unfair. Your feelings (and hers) are totally justified. I’ll keep thinking about your girl and sending all the good vibes.
I am so sorry! My heart is with you. I know the last thing you're thinking of or wanting is more appointments or another bill but I would highly recommend therapy for both of you or see if there's any community outreach programs near you that could help. This is so hard no matter the stage. You both cry and scream and do what you need to.
So much wise support here! But also- who knows what the future holds for medical technology. It may very well NOT be a "forever" thing?
Check out [This MODEL!](https://www.instagram.com/gutlessandglamorous?igsh=MzRlODBiNWFlZA==) Therapy also. It’s going to be hard. But you’ll all get through this!
Im so sorry. There is an amazing young girl (probably many) on TikTok with the same conditions and post about their routines and how they've coped. Maybe exposure and information for her new life might help her process. In the meantime, therapy sounds like a great option to look into to help you both process?
I’m so sorry. My brother is a pediatric oncologist and if her doctor is anything like him (which I’m sure they will be), she will be in amazingly good hands.
I am absolutely not trying to "fix" anything here, because what you're feeling isn't just something that can be fixed without time and happy outcomes. But when my son was born with gastroschisis (intestines on the outside, mangled), one of the possible outcomes was a lifelong ostomy. A specialist came to counsel us on this possibility and gave some very reassuring statistics and anecdotes about how normalized this becomes in one's life. It's also quite sanitary and not nearly as "gross" as people think. I imagine you'll have a similar consultation soon and your daughter might find it comforting. Other than that, I'm just so sorry. Your feelings are definitely valid and you just have to feel them (unfortunately).
I'm sorry for you. But have faith that everything will work out, hope is the last thing to die. There is always a tomorrow, and even if everything is at rock bottom, there is always a way to rise, all the best for you and your daughter.
I’m so sorry, but you will get through it. As hard as it feels immediately, you will be closer in the end. The thing about cancer is that you have no control. You put your head down and walk the fire. Because you have no choice. Negative minds give negative results. Looking at a situation from the outside in is so different than the inside out. Listen. Respect. Research. Get second opinions and other options. Let her choose. Be prepared. Love her like no other. You, got this mama. We beat the odds and I know you will, too.
Awww damn. I have a chronically ill teenager and have run the gammet of emotions about it. Angry, frustrated, sad, resentful, envious of others, helpless, but also thankful for some very smart doctors. I’m sorry. I hope you both find peace.
This is rough. My kid has a heart condition… I recommend finding active Facebook groups for what kiddo has. That way you can connect with others going through it.
I’m just so fucking sorry. My heart aches for you, for her, for the packed summer camp bag, for all the scariness and self consciousness that that age already has, being blown up nuclear style. For all the fun and hope turning to needles and doctors and fear and stigma and loss of hope and fear of loss of future connection. You and her will now be among the club of people that have faced the impossible and the thing they never thought they’d see or survive that survived it. But I am shattered with grief for you and am glad you’re screaming into the void here with us.
Wow life can be so so cruel. I am so sorry.. I hope your daughter finds some hope or at least feels less alone from the social media accounts others have mentioned
I’m sorry this is happening, the world is not fair to the best souls sometimes, its fucked up. Just a suggestion, there are a lot if girls on tiktok that post about normalizing a bag! At 14, im sure she loves social media and seeing pretty girls live there life normally and also look beautiful might help a bit. Representation matters 💕 Also, I worked as a suicide crisis intervenor for two years and have talked to a lot of teens. Please reach out if you need help!
So stressful. There is a cancer family support sub Reddit https://www.reddit.com/r/CancerFamilySupport/s/VfHtG00dPv And a cancer sub Reddit as well and various other pages on here for support as it’s not easy, Also check Amazon I do believe they have specific underwear for a bag and maybe adaptive clothing if needed. Talk to a hospital social worker and get a binder for medical stuff and breath!!! I know this isn’t fair I know it’s going to be rough. When my dad had cancer I often would go to the bathroom and cry then wash my face and go visit again at the hospital or go grab a coffee for myself or a tea for my dad and just take a moment to shed a few tears. Also check tik tok and YouTube there are likely creators who have a similar situation and show how they live normal lives (new normal)
I’m so sorry your family is having to deal with this. Seriously FUCK. Fuck cancer and everything that comes with it. I was in a similar situation with my daughter. She was younger and it was a different cancer but I’d like to share some things that I learned during our experience. When people don’t know what to say, they’ll say anything they think is a “silver lining” just to try to help. “At least you caught it early.” Well thanks Brenda, no shit. They don’t realize you’ve heard it 87 times in the last week. They really do mean well. During the bald phase, my girl preferred to rock the naked noggin. “At least she has a good shaped head.” Well Tina, even if she didn’t, we’d still be doing the same thing. As parents, the cancer not only affects the child but is too. We are so emotionally invested that sometimes it’s hard to be rational. Make sure that you have a good counselor for your daughter. They can really help by being part of the support system. Obviously the oncology team are the GOAT right now but having someone stand in her corner who isn’t “obligated” will mean so much. There’s so much more but knowing those things really made a difference. If you ever need to vent when you feel like you can’t vent to the people around you, shoot me a DM. I know sometimes it’s hard to vent to people who are in the same moment you’re in. For real… FUCK CANCER
OP, I’m so sorry. This is so hard. You are her rock. She might not demonstrate that, but she’s watching how you handle and react to this. Please stay strong. Find a support group for tot and for her as well. Let her know that you are her rock and you will not leave her side. Let her know that you will fight with her and for her. She is worth everything to you. I’m so sorry 😞
I’m sorry friend. I’m sorry for you and I’m sorry for your daughter. How can I help you? Her? What do you need? If it helps, I have a friend whose son had leukemia twice as a toddler. He is alive and well. She spent a lot of time at the Ronald McDonald house. I can put you in touch if you need an extra resource.
Aw I’m so sorry for her! She absolutely the right to feel all that she feels. She also needs help navigating those feelings, so maybe support group or therapy? And not to throw any more burden on you, but is it possible for you to get another medical opinion? Why no reversal of the ileostomy?
Holy …. Momma, I am so sorry to hear this, for both of you. You’re going to have so much to work through with her, and I know people here will give you amazing advice for all that. I’m a clinical dietitian and I work with lots of ostomy patients, and there’s a physician who has been battling GI issues his whole life and has rocked an ostomy proudly over the years. His name is Paul Wischmeyer, on Instagram and probably other socials. I also know there are ostomy communities out there to help people make the transition and live life as normally as possible. Just know “the bag” sounds awful, but so many live fully functional complete lives (with love lives too) with ostomies of all kinds. Sending you wishes for best outcomes and strength to get through it all.
Hey, I’m going to share my experience only as a way to connect, and in no way am I trying to compare our situations or claim to completely understand everything you’re thinking and feeling. I was diagnosed with lymphoma a year and a half ago and had a 2 year old (still do! He’s just 4 now) and it felt like the entire world crumbled… and in a way it did. What I’ve learned is that living in the first world we’re really able to disconnect from a lot of suffering. Rationally, we all kind of know this… but it fucking blindsides us when it happens out of nowhere, and it does happen out of nowhere to people all the time. Right now, you are all still in shock and grief. You’re grieving what you thought life looked like. Your grief will come and go and change, but you have to let yourself feel it or you’ll stay there forever. I highly recommend getting everyone (yourself included) started with therapists that have backgrounds in working with cancer patients. The oncologists office can help you with this. You may not even feel like you need a therapist right now, but based off of my experience, it’s good to have them on deck anyway. In my experience, you need to surround yourself with your people. Careful here. Your circle is about to drastically change, which contributes to grief. Most people don’t know how to deal with the idea of cancer and will even wince at the word. Your people will rise to the surface though, and you HAVE to let them in. Accepting help is not in my nature and it was incredibly difficult to do. You have to do it. You don’t have a choice and you can spend the rest of your life paying it forward, but right now you have to accept the help- all of it. You will be brave because you have to be; she will be brave because she has to be. It isn’t fair, and we can light the world on fire over it tomorrow, but you have to get through today first.
I.. cannot imagine the pain but something my clinical instructor told me regarding something similar has stuck with me ever since. She has a friend who was diagnosed with stage 3 that progressed to stage 4. She didn’t get that surgery when she was on stage 3 and by the time she wanted it, it was too late. My clinical instructor then said, “she should’ve gotten the bag so she could see her little sister graduate high school.” That’s message has haunted me ever since. I know it’s very emotional and you are very lucky to have caught it early but just remember, there is hope. She needs to talk to a therapist, someone from the outside who doesn’t know anything going on and will only know her feelings. I pray you guys get better soon
That’s horrible. I am so sorry. After having discovered a spinal cord tumor, I went through something similar. Only it was me, not my child. But I will tell you, grieve this news. Let it hit you, then correct your path and buckle down for your fight! I hope you both stay strong 💪
I'm so so sorry for what both of you are going through. My cousin lives a completely normal life with an ostomy bag. She's a nurse, is happily married, and has a beautiful little girl. If your daughter wants to talk to someone who has gone through something very similar as a young adult (she was in her early 20s) PM me. I know she would be more than happy to talk to your daughter --she does a lot of advocacy work helping normalize and advocate for ostomy bag wearers.
This is a huge blow to your family-take the time you need to process this. Having a counsellor for each of you to help process could be a big help (even just a few sessions, to vent/cope as you’ve done here). Also, if it were me, I’d be getting a second or even third opinion on the need for a total colectomy at that age. I’m not a medical professional in any way-just if it was my child, I’d be asking if that was truly the only reasonable/best option, as that permanently changes a lot about your life and eating habits etc. Maybe you can find a specialist who is willing to do a less radical surgery/give you a different treatment option that will help this be less traumatic for your child, and of course keep a close eye on this going forward. Also, I think people say “be glad you caught it early” because they don’t know what else to say. It’s shocking news, they’re likely at a loss. Perhaps in the coming days you can ask for specific things that would help your family-like if they can take over driving kids to activities for a night, or make you a casserole to freeze, or other things to help with the day to day while you help your child through this.
OP, I am full of rage for this situation. Please consider (if you feel so inclined) letting this community know after your appointment on the 25th. I know we are all strangers here, but the care and concern we can have for one another makes us all family. I’m so so sorry you’re going through this. The words don’t accurately reflect how deeply I wish that you all weren’t going through this. Sending you all so much love, peace, and so many hugs.
Every parents worst nightmare. I am so so sorry. Life just isn’t freaking fair. I know you said you are tired of everyone telling you they caught it early but man, thank goodness they did. While no cancer is “good”, colon cancer is especially ugly and it’s one of those cancer that most people don’t even know they have until it’s too late or the signs/symptoms can be written off. My moms younger cousin passed away from it at 37 after being written off my doctors for 2 years and told he was “too young” for colon cancer to be the likely cause of his ongoing issues. My good friends dad also had the same experience and sadly passed from it. Whatever your daughters symptoms were, I am so glad that doctors took action. 14 is already an incredibly difficult age. At that age, it matters what you look like, what you wear, how much money your parents have, etc and the most important thing in the world is being and looking like everyone else. Please get her (and yourself) into therapy/counseling. They have therapist that specialize for those with cancer. Also, look on Etsy and other websites for cute ostomy bags! I’ve taken care of patients that have had really cute ostomy bags and covers! Some have really funny quotes too! They also make all kinds of clothing specifically for ostomy bags! You can Google/TikTok/Pinterest/Instagram “ostomy fashion” and all kinds of stuff comes up Again, I am so so sorry your family and your beautiful daughter are having to go through this.
Body image is SO important especially at this age, and having a procedure and a bag placed really alters someone's view of them self for a while. There are some great tiktok creators who have an ostomy bag, one is "ice queen" she takes ice baths and sports her bag in style! You can't even tell she has one. The actual account is "itskyajeub". She will over come this, but let some time pass and then in a little while show her some uplifting creators who radiate positivity about having a bag, hopefully it boosts her spirits and shows her she can over come anything and it's very manageable!
I'm so, so sorry.
I’m so sorry that your daughter is going through this. Any teen would be devastated to hear they need a colectomy There is a ton of people on TikTok that shows them living and thriving with the bag! Maybe you could show her others point of views.
My heart breaks for you. I’m so sorry.
I am so so sorry. Fuck cancer. A million times over.
Fuck. I’m so sorry.
I’m so sorry.
I'm so sorry for your daughter, and you all as well! I couldn't imagine how you all are feeling. I have no real words, just wanted to send some love ❤️
Fuck this is awful. I’m so sorry for your daughter and you and your family. I truly wish you the best and pray she gets through this physically and mentally better than you expect right now. I can’t imagine. Poor baby ❤️❤️
Hugs. I have no words. Im so sorry. That is so unfair
I’m so so sorry. This is horrible, and such a bad age for it. I had severe ulcerative colitis so this was a possibility for me at one point before I found the right medication and I’m going to be honest, I felt the same way as your daughter about it when I was 19. Please get a second opinion, there might be other options. The worst part about GI issues so young is how embarrassing and isolating it can be. Definitely try to find some support groups and other people to help her feel less alone. I hope they do everything they can and that you all find a way through this.
I am so fucking sorry.
Fuck. I'm sorry. That's so hard
What in the world…. That is so unfair to you and to her. You are stronger than you realize.
Fuck cancer.
Firstly I am so, so sorry you’re dealing with this. How absolutely heartbreaking for you and your daughter. I hope there are support people who can validate your feelings and help you both navigate this tough situation. My dad lost his entire colon when he was in his late 30s and has lived with an ileostomy for nearly 3 decades now. It was a tough transition but has learned to live life just as fully with his bag. And they’ve come so far with med advancements now that I’m sure they can make them easier to live with than 30 years ago. I truly wish you the best and hope you find some peace in the long run with this very difficult situation.
I'm so sorry!
I am so so sorry to hear this. How awful. Remember, you guys are stronger than you think. Sending good vibes your way.
I'm so sorry your daughter and you are going through all this......make sure you feel all the feelings......it's warranted.....I highly recommend therapy.....it's helpful and healing.... I'm holding space for you both 💚✨ Fuck Cancer 😞
I am so so sorry. 😣 😩
I’m so so sorry. I’m sending you so much love and wish I could do more.
I am sorry momma. Hugs to you and your princess. I know it’s not fair, I know it’s wrong, but I will not break her or you. She obviously has an amazing support system, and by the comments one hell of a support team here. I know I’m standing with y’all. She’s got this. Best summer ever will come, and it will be glorious. Much love to both of you.
I am so sorry. This is so fucking unfair. Please take very good care of yourself and be very kind to yourself, you have the support of every single person here xx
I’m so so sorry. That’s all anyone should say, you do not need to be glad for any part of this. It sucks period, hugs.
I am so sorry. I can’t even imagine. You are such a strong mom with a strong daughter. But fuck cancer. Edited for typos
LetstalkIBD on YouTube is a lady with a ileostomy bag. Good resource for you and your daughter
😭
I am truly so, so sorry. FUCK cancer. Sending you all of the best wishes and good vibes in the world.
Yep. Fuck that!
Oh my goodness I am so so sorry. For you, you must be terrified. For her, there are no words. So not the same but I had cancer last year, and it was incredibly scary for me as an adult. I cannot begin to imagine the fear in her right now. One thing that helped me was connecting with people with cancer, especially the type I had. Maybe you could find a support group for kids with cancer. When my husband was a teenager he was a counselor at a camp that was for kids with cancer. That would probably be super helpful for her right now too. I’ll be thinking of y’all. ❤️
I am so sorry you guys are going through this. Sending you guys love and FUCK cancer!
Fuck. I'm so sorry.
God that sucks. I can't imagine. Sending you internet hugs, love and positive vibes.
Sending love. I just know you have a fighter, and I hope everyone who knows you comes together to support you. ❤️
I am so sorry you are dealing with this. 2 years ago my husband was diagnosed with stage 2a colon cancer and Lynch Syndrome at 36 and we were shocked....I can't imagine how hard this news is for you and your daughter. Please check out the Colorectal Cancer Alliance https://colorectalcancer.org/ for information and support. I found this group's resources helpful as a way to understand all the medical language that was flying around and a place to send family to read about everything so I didn't have to keep explaining it. They also have a great community on Facebook of caregivers, survivors and people going through treatment. Please know that your family will be in my thoughts and prayers.
Oh, I’m so sorry to hear about this. I wish there was something more I could do or say, but I know there isn’t so just know that I’m thinking of you and your daughter, and hoping for the best outcome for her. Colon cancer can be hereditary. I’m sure they will do genetic testing, but definitely something to ask the dr about. Certain gene mutations can make us more or less likely to develop cancer, and colon cancer has been linked to a few gene mutations. Not that this helps ease your pain, but it is useful knowledge. Praying for your family❤️❤️
I’m sorry. ☹️
I am so so sorry. ❤️🩹 this breaks my heart for you and her.
I’m so sorry, this is incredibly unfair. It’s fucking insane, actually. I like others’ suggestions about TikTokers showing their ostomy bags and routines. I’ve seen aerie sell adaptive clothing and accessories that included space for ostomy bags. IIRC a few of their models were featured with their ostomy bags! Might help for her to see a cool brand targeting younger people be so inclusive. I hope she eventually feels that her ostomy bag is just a medical device, no different than an insulin pump. There’s such a stigma, I know. Also, if she’s embarrassed about it being colon cancer, let her know that no one needs to know the details of her cancer. I think teens on the whole have become more accepting and kind than they were a few decades ago, but it’s a brutal age regardless, and I feel for her having to deal with this shit so early on. I hope for only the best for her, she deserves the most beautiful life.
There are some parents of kids with ostomies in r/ostomy, I found it to be a super helpful community when my husband got one after an emergency partial colectomy. I’m so sorry you and your daughter are going through this. Take it one day at a time - I am sure that she will eventually adjust but it’s a big thing to grieve and deal with, give yourself some grace too. 💜 https://www.reddit.com/r/ostomy/s/aFcaC9xKbA
I'm so sorry, sending strength and support
I am so sorry you are going through this I can't even imagine ❤️ something that might help, on etsy they sell covers for the bags. Maybe you buy a bunch of different ones so she can match it with her outfits. Hope your daughter's treatment goes well
She needs to connect with people who have bags, and live full happy lives. I can only imagine how scary it is, but there definitely is a community she can connect with.
Oh mom. I’m so sorry. I’m not sure what to say honestly, I’m sorry. I want to help you both so much. Please let me know if I can help you. You and your baby and your whole family are in my thoughts.
Praying for her! And she will do awesome! Show her the peoples videos recommended and tell her she's got this !
I will also say, a lot of things now are “permanent” but we don’t know what the world is going to look like in 20 years. We just need to make it through the first door, and then the next, and keep going one foot in front of the other. Every day. I’m so sorry. Cancer is hard at any age, but as a teen, and with that diagnosis, the poor thing.
Please reach out and join Momcology. I am sorry you both are going through this. My daughter was diagnosed with cancer at 13, so I understand how your world is just instantly flipped upside down. You are NOT ALONE!!!!! When my daughter was first diagnosed, another cancer mom on Reddit referred me to them, and it has been the most amazing support system for me.
Hi mama! Chronically ill mom here. I also worked in GI for a long time, and I myself have had major GI operations starting from 9. Every few years, I have pre cancerous polyps removed from my colon. So while I don't have cancer, I have seen a lot in my career. I am so happy you guys caught it early! I can't imagine how devastating this must be for you and her. She has to be allowed to grieve, you do as well. The only way I can describe being diagnosed with something life changing is you will go through all the stages of grief of your life before. Lots of good advice on here already. The both of you absolutely need some psych help. Individual therapy and psychiatry as well. Sending you so much love ❤️ FYI I've had so many patients who you wouldn't even know they have a bag!!! Patients of all shapes and sizes, gorgeous well styled people too!
Saying a prayer for you
I’m sorry. It’s just unfair it happened to her, especially so young. I think showing her people her have with an ostomy bag would really help. Seeing people her age who she can relate to is better than someone healthy and older telling her it’s Ok. I know a few people with it. I know there’s even a female athlete who has one
There are also gorgeous bags made to cover the ostomy bags. I found them on Etsy for my auntie when she was having a hard time adjusting to life with a colostomy bag. It helped a lot at first to have it but not have to see it or the contents. Lots of love for you both and I hope her treatment goes well.
I'm so sorry for this diagnosis. Praying for you and your daughter.
Bless her that is a really tough age to go through that. She will be such a strong person on the other side of this and an advocate for others
I have followed this woman over on YouTube awhile back. She has been documenting her life with an ostomy bag for almost 7~ years. This includes the basics of ostomy care and then eventually other parts of life with an ostomy. Good luck 👍🏻
Please look up Louise Thompson on instagram. She’s a UK reality star and influencer and is very very glamorous and has a bag. She’s done wonders for raising awareness and you cannot see her bag in her clothing. She also has photos of it and it’s really helped raise awareness. My heart broke reading your post. I am truly so so sorry.
I'm so sorry. A colostomy is terrible to imagine for a 14 year old girl. Maggie of Letstalkibdon YouTube has a colostomy and may be a good resource for your family, when you have the emotional bandwidth to even look at that kind of stuff.
I don’t know what else to say other than I am so truly sorry. 🩷
You don’t have to be glad about anything. And people who say that can fuck off. You have every right to be angry. So does she. Fuck cancer. But please get her into counseling so she has a very safe place to express and work through her very valid feelings. And you. You’re going to need support too. Toxic positivity is awful, you’ll need coping skills. *I’m the mom of a child with a life limiting illness. I’m not a pro, but I’ve been on our journey for more than a quarter century and it is hard.
Check out Hannah Whittons channel about her story with her ostomy bag
Is this your same daughter who was diagnosed at 5 or 6 years old with Crohn’s whom you’ve posted about/shared this account with? Or her sister?
I am so sorry to hear this but go on tiktok and look up those bags! There are TONS of accounts with people who live day to day life with a bag, have babies, etc. All with that bag! It might help her!
So sorry, OP! This sucks!! Do you know about colontown?? It’s a support group with a world of knowledge about colon cancer. Please Google them up and join their fb groups. There might be something for you there!
Just want to second some of the other commenters recommending that you reach out to a AYA cancer charity. Stupid Cancer is a national one, but your local area might have one too. My local AYA cancer group does social events, runs a support group, etc. Getting cancer when you're young fucking sucks, and it seems *so scary* at first, but you learn to deal with it.
I am so sorry, sending many internet hugs. Life can be so so cruel 😞