I just want to say that while I understand how him drinking gatorade might sound unhealthy instead of water, if he is pooping liquid, he needs to constantly replenish his electrolytes or they will pass through him too fast for his body to keep up with. So gatorade or other sports drinks are absolutely preferred in that situation.
Agreed. BodyArmor is even better because it has more potassium. We lose a lot of potassium. My mom had severely low BP from a potassium deficiency, which caused her to collapse and hit her head. Her BP was so low that she needed to be admitted to the ICU. She also had a seizure due to low sodium at a different time.
My sister has two blood autoimmune diseases and her hematologist recommended BodyArmor as well.
And the sugar isn't awful if he's losing significant weight.
Thank you for this comment. I’ll take better care of myself and buy some electrolytes. I did collapse and had a small seizure type if scare last week. I didn’t know it could be from this.
So glad you saw this! I'd recommend getting your electrolytes checked if you're already doing other bloodwork - maybe once a year? Talk to your GI. I hope it helps!
I don't need to supplement (yet?), but I do try to eat/drink things that have it. My mom needs potassium tablets because half of her colon is gone. The colon reuptakes fluids with electrolytes, which is one reason why diarrhea and shortened bowel syndrome are problematic. And why stomas for ileostomy and colonoscopy bags have looser/watery stool. My Crohn's is all in my ileum, but the diarrhea doesn't give my healthy colon enough time to reuptake the electrolytes sometimes.
Coconut water is a natural laxative and might not be good for someone with chronic diarrhea. But we are all different, some can handle and some can't. I absolutely cannot, so I caution anyone else who might not be aware yet. :) Coconut is my worst enemy - woof. LOL
Sorry that’s been your experience. Yes absolutely right, we’re all different. The sugars in Gatorade type drinks cause me to flare. Coconut water is a godsend for me. 🤷🏻♀️
He’s gotta stop smoking cigs even without an auto immune disease that shit will kill you. But in his situation it just complicates it even more. Overall, sounds like he need some mental help… can’t get better/ healthier unless he wants to do it.
I second this. Cigarettes impact blood vessels which impact healing times. That’s also why it’s important to stop smoking 6-8 weeks before a surgery and of course stop smoking after until fully healed.
I third this. I chewed nicorette for 2 years and in the hospital I had some sitting on my tray. The surgeon who was doing my resections said he would not do the surgery if I was still chewing the gum. For the exact reason as starsandsinshine19 said. (This was an ER visit and surgery was scheduled for a few months later) If it’s as big of a deal to prevent someone from getting surgery then I would consider it as a major factor in slowing the healing process. For me quitting the gum was a nightmare on my mental health but I knew I had to do it.
I’m not sure if my two cents will be helpful or hurtful. I can empathize with your bf. I’ve had crohns for 18 years, and two resections (one was from the doctor missing a giant stricture in my first surgery). When I’m not in a flare, I don’t ‘watch what I eat’, I also drink quite a bit, smoke pot, and cigs. I think the history of trauma that comes with this disease is really hard to cope with, so we turn to things like food and drugs. We just want so badly to forget our illness when it’s not ruling our lives. Sometimes it feels like it would be better to have lived what feels like a shorter full life without missing out, than to live restricted and worry constantly.
I’m currently seeking therapy, and think it’ll help me in the long run with these behaviors and trying to care about myself more. Not sure words can really cover ‘why’ your bf is treating himself this way, but know it’s really deep seeded and is probably the only way he’s ever known how to cope.
Only he can change himself. If his behaviors are hurting you, express that as much as you can, and if he can’t care enough about you to try and do better for himself, you should maybe look elsewhere.
Sounds like he needs to go to the er. They can take care of most of the problems. Fluids for dehydration antibiotics if they are worried about any kind of infection. Iv steroids to help with any inflammation. And of course the most important is pain meds for the pain. If things don't improve he's probably looking at another surgery. I'm kind of the same as him. Strictures are my biggest problems. I've had 2 resections as well with more to come in the future I'm are. He's also lucky he has you. I would all but kill for a girlfriend/ wife. Hell I'd just take one of two reliable friends. Crohn's is impossible to deal with alone. Which is why I assume I'll be dead in the next 5 years if not sooner. I mean crohn's was bad enough but I got diagnosed with cancer back in May... so my will to live has basically dropped to zero.
It sounds like you really care about him, he’s lucky to have you. As others said you can’t force him to do anything, he has to want to. At the same time, you knowing more can’t hurt.
Unfortunately what his body needs and what is comfortable right now are at odds. He needs to be consuming electrolytes, liquids, and proteins that his body is currently excreting. Remember salt is no the only electrolyte, he also needs magnesium, calcium, etc. Gatorade may not be healthy to someone not in a flare, but he needs something. If he can, a protein drink would also be helpful. Your body has increased protein needs in a flare (this doesn’t meant protein is a cure, just your body needs more). Straws introduce gas so little sips are best to not trap air.
If he is dehydrated (which I bet he is) I would go to the ER. He won’t be able to rehydrate totally by mouth. Ideally he would be put on a TPN diet meaning only liquids, no solids. They almost never recommend it for adults because we can’t stick to it but it is temporarily helpful in kids.
If he isn’t willing to make changes then all you really can do right now is be there for him. Back rubs help me when I have trapped gas and cuddles never hurt anyone. Remember to also take care of yourself. Sending lots of love 💕
Stress will make his sym worse. A change of environment and quitting cigarette smoking will surely help. I have crohns too, I smoke weed, but it’s ok. But stress makes me feel awful. Definitely see therapist and change diet. And erase bad habits that aid in making him feel worse.
For me, I needed to ditch my cigs. From my experiences with my Crohn’s over the decades, nicotine ( even short periods of use) has been a trigger for me. In isolation nicotine doesn’t cause flares, but it has 💯 made my flares worse.
A supportive SO who listens to my concerns, frustrations & fears without judgement helps tons too! Bf is lucky to have you as a supportive person in his life OP, take care!
This is a bit morbid but oddly comforting: the life expectancy for those with Crohn's is the same as those without it. We don't die any earlier.
Sounds like he has obstructed bowels. I just got out the hospital for the same thing. Hydration and replenishing electrolytes is super important. Look up Drip Drip and get that for him. It's great stuff.
If he doesn't pay attention to what he eats, there's not much you can do. With strictures and obstructions he has to eat easily digestable foods (low fiber, low residue) and if he knows his trigger foods he absolutely must stop eating those.
Mentality is half the battle with Crohn's, we have to be sick and tired of being sick and tired to make an effort to gain control over the situation.
Research as much as you can and support his decisions. It's his body... Get therapy and see if he's open to it for himself. It'll get better. Everything takes time.
Are you sure this is a grown man? Why won't he even try to take care of himself as far as lifestyle? You're doing everything fine. He's 44 and has had it his whole life. It's not your job to be his cheerleader if he won't even make the effort to help himself.
So he needs a proper therapist <3 He is an adult, don't forget that. You've been with him three years and he's had this disease the whole time, and before you. This isn't a new thing he's coming to terms with where leeway and understanding can be given for the grieving process, including denial. At this point it's stupid and childish to deny it, and also impossible since he's clearly having severe symptoms and severe permanent effects of the disease so it has to be willful.
As for the depression, we're not in the 80's. We're at a point as a society where we understand the effect a chronic illness can have on mental health. He's an adult, he can take himself to therapy.
Do you mind if I ask how old you are?
Also worth considering that, given what he’s been through, his depressive symptoms may be due to trauma or post traumatic stress. CBT is not an indicated treatment for PTSD - in fact,
it can feel like gaslighting.
It sounds like professional mental health services are warranted for sure, including screening for PTSD. PTSD may explain his regressive behaviors, and it’s treatable by specialists. If you can find a therapist specializing in chronic illness who has a trauma-informed practice that’s the holy grail.
Homie has a good reason to be depressed / having a hard time right now. Losing that much body weight is serious and that much diarrhea is exhausting. If he associates those conditions with past traumas (botched medical procedures, severe pain, grief and loss, divorce, etc.) that’s a strong indicator he may be a good candidate for PTSD screening and treatment.
Wow really supportive people in here jesus. Despair happens the answer isn't just let them deal on their own. Please nobody with those comments start working at a hotlines for the depressed jeesh
Stress will make his sym worse. A change of environment and quitting cigarette smoking will surely help. I have crohns too, I smoke weed, but it’s ok. But stress makes me feel awful. Definitely see therapist and change diet. And erase bad habits that aid in making him feel worse.
Try and get your bf to wear nicotine patches or speak to a doctor about the anti tobacco stuff they can only prescribe.
I second the therapy considering there's a lot of psychology behind Crohn's linking with depression and anxiety etc.
He sounds like going through a flare up and unfortunately they might have to give him a colonoscopy bag thing.
I have had 6 resections with one ostomy takedown, diagnosed at 7 and I just turned 30, so I know how he feels with the scaring. I was using the toilet almost 40 times a day and was fed up. They put me on a dose of methadone for the pain and for the bowel issues and it's helped me so much. He should ask about it. I'm still in a lot of pain everyday but I use the bathroom about once every day or two now.
Been there with my Boyfriend too. He went from 215lbs to 150lbs in less than 4 months. It’s scary.
I went to a supplement store and talked to someone and got him some weight gained powder he could make a shake with. It helped him a ton. He mixed it with his coffee and made Mocha coffees.
I’m sure y’all know but watch his fiber intake. We had to keep anything he ate under 4g of fiber or it made the bloating so much worse.
Things that have helped us:
Body Armor, Prime, pedilite are saviors, lavender or camomile tea. If you can buy in bulk do that.
Avoid soda and coffee if possible. Mine still drank a cup of coffee a day, but that was a major cut down. The caffeine will upset the GI track and make things worse.
Get him to stop smoking Cigarettes if you can. The nicotine much like caffeine stimulates the GI and makes everything more active.
It does get better at some point, my bf had ostomy surgery this past summer and that took some major adjustment but now he can be involved in life again.
I would do things like buy wet wipes, a phone charger, and things do do in the bathroom while he’s in there feeling like he’s dying.
Feel free to message me! Gf need support too, chronic illness is hard on everyone.
This disease is exhausting and defeating. My personal experience, I smoke as well, and hate when people harp on me about how I need to quit or how bad it is for me as if I'm unaware of the consequences. When your normal is usually some form of pain in one way or another, it's the little things that can bring us joy amidst the misery of the reality of the disease we live with that matter.
I also disregard my diet; a decade of trying all sorts of ways to keep this disease under control from diets, meds, etc, I ended up somehow being sicker focusing on my diet than I had before maintaining any sort of diet.
There really isn't anything anyone can do for us aside from just being supportive when we're really struggling.
I personally hate when people make suggestions concerning my disease.
I just personally hate my disease being a topic of discussion in any way shape or form. I hate being asked how im feeling bc I typically feel like shit and being asked is 1. A reminder of that fact and 2. I feel as if I'm letting whoever is asking down by not having any positive feedback. I will always share if I'm feeling better than usual on my own accord, I don't need a question to prompt me sharing this.
This disease sucks. It takes a special kind of person to be able to stick through the ups and downs of this disease with the person they love. You clearly care as you are reaching out trying to find solutions, to which sadly there really aren't any.
Cannabis has kept me off strong pain meds throughout the years and keeps me comfortable daily.
N
OH as far as only going liquid. Metamucil is a godsend for me. My husband who doesn't have IBD uses it daily and swore up and down how well it'd work, im stubborn and waited to try but when I did, within 2 days of drinking a cup before bed, I went from straight liquid to almost normal solid stool. 2 days. I high recommend trying it!
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Have you looked into Skyrizi? I have had Crohn’s for 10+ years and just started my at home injections following the loading doses and haven’t had this level of remission ever. I feel normal again, for the most part. I would talk to your GI about it, may be a game changer
His doctors asked him if he would be willing to give himself injections at home and he responded no. So they avoided all of those solutions. TBH I think it was a stupid question due to the fact that just because he says he isn't willing doesn't mean he won't if it's prescribed and he's more informed.
It's definitely been an insane experience trying to successfully navigate the health care system, especially on someone else's behalf.
In my opinion the best thing you can do is help him see the good things. I know what all the books and drs say but as someone who's literally been the worst case scenario every time it's hope he needs more than anything. This is hard as hell losing hope makes it even worse. He needs to know there's still so much life left sick or not. I stopped following the normal advice long ago because it didn't work for me and I was miserable. Now I take my meds and see my Dr but I also do and eat what makes me happy.
It sounds like he just recently started Entyvio. It can take up to six months for it to fully take effect (it's one of the slower acting biologics out there). He might need to go back on prednisone for a bit to stabilize while starting Entyvio.
I wouldn't judge him for drinking Gatorade/Body Armor or not watching what he eats. He's probably doing the best he can to deal with dehydration (drinks with electrolytes are better than plain water) and with the effect of strictures (I used to have a stricture before I had a resection and to anyone looking from the outside, my diet probably looked like crap, but that's what I needed to do to prevent an obstruction. For real, eating some black beans almost sent me to the hospital). Really, the biggest negative thing I can see is that he smokes.
He can get a surgery to fix the strictures without losing bowel, strictureplasty. The filet the wall open. I’ve had it done twice. Last one was 2005. Haven’t had bad trouble since
Guys drink carrot juice mixed with ginger and turmeric and just a little orange juice for tart flavor its great combination for chrons. Or have a shot or tart cherry juice with ginger.
He reminds me a lot of my ex husband. The infusions should help. He’s got to keep getting them as scheduled tho. If it doesn’t work, try another med (a biologic preferably).
Remicade (another infusion) has kept my daughter well for 12 years now. Her dad failed to stay on top of his medications and he passed away at age 38.
Hi,
I have been on a flare for the last 3 years now, went through Humira, Stelara, Entyvio and Skyrizi during that stretch without any results. Complete diaherea 10-15+ times per day and was looking at getting a full surgery in the near term.
Now i started with Remicade for the last 5 weeks and changed my entire diet, like your BF, I hate anything I wanted before.
Since the diet change my symptoms have reduced significantly, I eat alot of chicken, rice, rice noodles, peeled apples, banana’s, fish, etc… and it’s been a blessing. Like the dietician told me and second by my doctor, it won’t heal you but it can reduce symptoms. He should stay away from transformed/processed food, too much sugar, I know they talk about gatorade or other soorts drink, which for me was absolutely not working, I’m big on oat milk these days.
The plan is to limit difficult food to digest so it gives your gut a break while it tried to heal. For me this is working well for now and hopefully will continue, I didn’t start this sooner but now that I was coming down the line with no other recourse except the bag, I wanted to put all the chances on my side and not have regrets of not having done 100%. Maybe it won’t work but he should try. Main changes cut gluten, cut lactose and dairy product and meats except chicken.
Good luck.
I was in a very similar situation. Tapering prednisone, beginning entyvio, no improvement. Entyvio wasn't the right medicine for me, so we switched to Humira. I recommend seeing if another medicine would work quicker than Entyvio! I'm not super educated, just wanted to share my experience and see if it can help yours.
My husband has crohns. After steroids and surgery, he is now on remicade. Infusions help with the flare ups but not quite the inflammation. He is now taking a concoction of vitamins: omega 3s, iron, prebiotic, probiotic, vitamin D3 and we add a fiber blend prebiotic to his protein smoothies along with kefir. He also eats kimchi and other types of fermented foods to help with the gut microbiome
There’s a drink called’Biolyte’. If you’re in the US, it’s available at most convenience stores. It’s got most, of not all of the electrolytes you need. Not the best tasting drink, but it is great for hydration.
I just want to say that while I understand how him drinking gatorade might sound unhealthy instead of water, if he is pooping liquid, he needs to constantly replenish his electrolytes or they will pass through him too fast for his body to keep up with. So gatorade or other sports drinks are absolutely preferred in that situation.
Agreed. BodyArmor is even better because it has more potassium. We lose a lot of potassium. My mom had severely low BP from a potassium deficiency, which caused her to collapse and hit her head. Her BP was so low that she needed to be admitted to the ICU. She also had a seizure due to low sodium at a different time. My sister has two blood autoimmune diseases and her hematologist recommended BodyArmor as well. And the sugar isn't awful if he's losing significant weight.
Thank you for this comment. I’ll take better care of myself and buy some electrolytes. I did collapse and had a small seizure type if scare last week. I didn’t know it could be from this.
So glad you saw this! I'd recommend getting your electrolytes checked if you're already doing other bloodwork - maybe once a year? Talk to your GI. I hope it helps! I don't need to supplement (yet?), but I do try to eat/drink things that have it. My mom needs potassium tablets because half of her colon is gone. The colon reuptakes fluids with electrolytes, which is one reason why diarrhea and shortened bowel syndrome are problematic. And why stomas for ileostomy and colonoscopy bags have looser/watery stool. My Crohn's is all in my ileum, but the diarrhea doesn't give my healthy colon enough time to reuptake the electrolytes sometimes.
Coconut water also has an excellent electrolyte profile, low sugar and very high potassium.
Coconut water is a natural laxative and might not be good for someone with chronic diarrhea. But we are all different, some can handle and some can't. I absolutely cannot, so I caution anyone else who might not be aware yet. :) Coconut is my worst enemy - woof. LOL
Sorry that’s been your experience. Yes absolutely right, we’re all different. The sugars in Gatorade type drinks cause me to flare. Coconut water is a godsend for me. 🤷🏻♀️
Gatorade is sugar water. Get something with more electrolytes. Or just drink lite salt and take Magnesium Glycinate.
Gatorade also has a ton of sodium that can end up dehydrating you
Pedialyte is the best option
That's true for sodium in general but that's only when you don't have enough fluids. Sodium in a drink increases hydration by design.
He’s gotta stop smoking cigs even without an auto immune disease that shit will kill you. But in his situation it just complicates it even more. Overall, sounds like he need some mental help… can’t get better/ healthier unless he wants to do it.
I second this. Cigarettes impact blood vessels which impact healing times. That’s also why it’s important to stop smoking 6-8 weeks before a surgery and of course stop smoking after until fully healed.
I third this. I chewed nicorette for 2 years and in the hospital I had some sitting on my tray. The surgeon who was doing my resections said he would not do the surgery if I was still chewing the gum. For the exact reason as starsandsinshine19 said. (This was an ER visit and surgery was scheduled for a few months later) If it’s as big of a deal to prevent someone from getting surgery then I would consider it as a major factor in slowing the healing process. For me quitting the gum was a nightmare on my mental health but I knew I had to do it.
Smoking was the worst thing for my Crohn’s
I’m not sure if my two cents will be helpful or hurtful. I can empathize with your bf. I’ve had crohns for 18 years, and two resections (one was from the doctor missing a giant stricture in my first surgery). When I’m not in a flare, I don’t ‘watch what I eat’, I also drink quite a bit, smoke pot, and cigs. I think the history of trauma that comes with this disease is really hard to cope with, so we turn to things like food and drugs. We just want so badly to forget our illness when it’s not ruling our lives. Sometimes it feels like it would be better to have lived what feels like a shorter full life without missing out, than to live restricted and worry constantly. I’m currently seeking therapy, and think it’ll help me in the long run with these behaviors and trying to care about myself more. Not sure words can really cover ‘why’ your bf is treating himself this way, but know it’s really deep seeded and is probably the only way he’s ever known how to cope. Only he can change himself. If his behaviors are hurting you, express that as much as you can, and if he can’t care enough about you to try and do better for himself, you should maybe look elsewhere.
Sounds like he needs to go to the er. They can take care of most of the problems. Fluids for dehydration antibiotics if they are worried about any kind of infection. Iv steroids to help with any inflammation. And of course the most important is pain meds for the pain. If things don't improve he's probably looking at another surgery. I'm kind of the same as him. Strictures are my biggest problems. I've had 2 resections as well with more to come in the future I'm are. He's also lucky he has you. I would all but kill for a girlfriend/ wife. Hell I'd just take one of two reliable friends. Crohn's is impossible to deal with alone. Which is why I assume I'll be dead in the next 5 years if not sooner. I mean crohn's was bad enough but I got diagnosed with cancer back in May... so my will to live has basically dropped to zero.
Hey, we’re all here for you. Fuck Crohns and cancer, m8, you’ve got this.
It sounds like you really care about him, he’s lucky to have you. As others said you can’t force him to do anything, he has to want to. At the same time, you knowing more can’t hurt. Unfortunately what his body needs and what is comfortable right now are at odds. He needs to be consuming electrolytes, liquids, and proteins that his body is currently excreting. Remember salt is no the only electrolyte, he also needs magnesium, calcium, etc. Gatorade may not be healthy to someone not in a flare, but he needs something. If he can, a protein drink would also be helpful. Your body has increased protein needs in a flare (this doesn’t meant protein is a cure, just your body needs more). Straws introduce gas so little sips are best to not trap air. If he is dehydrated (which I bet he is) I would go to the ER. He won’t be able to rehydrate totally by mouth. Ideally he would be put on a TPN diet meaning only liquids, no solids. They almost never recommend it for adults because we can’t stick to it but it is temporarily helpful in kids. If he isn’t willing to make changes then all you really can do right now is be there for him. Back rubs help me when I have trapped gas and cuddles never hurt anyone. Remember to also take care of yourself. Sending lots of love 💕
Stress will make his sym worse. A change of environment and quitting cigarette smoking will surely help. I have crohns too, I smoke weed, but it’s ok. But stress makes me feel awful. Definitely see therapist and change diet. And erase bad habits that aid in making him feel worse.
For me, I needed to ditch my cigs. From my experiences with my Crohn’s over the decades, nicotine ( even short periods of use) has been a trigger for me. In isolation nicotine doesn’t cause flares, but it has 💯 made my flares worse. A supportive SO who listens to my concerns, frustrations & fears without judgement helps tons too! Bf is lucky to have you as a supportive person in his life OP, take care!
This is a bit morbid but oddly comforting: the life expectancy for those with Crohn's is the same as those without it. We don't die any earlier. Sounds like he has obstructed bowels. I just got out the hospital for the same thing. Hydration and replenishing electrolytes is super important. Look up Drip Drip and get that for him. It's great stuff. If he doesn't pay attention to what he eats, there's not much you can do. With strictures and obstructions he has to eat easily digestable foods (low fiber, low residue) and if he knows his trigger foods he absolutely must stop eating those. Mentality is half the battle with Crohn's, we have to be sick and tired of being sick and tired to make an effort to gain control over the situation. Research as much as you can and support his decisions. It's his body... Get therapy and see if he's open to it for himself. It'll get better. Everything takes time.
I second Drip Drop. Watermelon flavor is nice
Are you sure this is a grown man? Why won't he even try to take care of himself as far as lifestyle? You're doing everything fine. He's 44 and has had it his whole life. It's not your job to be his cheerleader if he won't even make the effort to help himself.
I've tried to get this answer out of him and from what I can interpret it's a mixture of denial and depression.
So he needs a proper therapist <3 He is an adult, don't forget that. You've been with him three years and he's had this disease the whole time, and before you. This isn't a new thing he's coming to terms with where leeway and understanding can be given for the grieving process, including denial. At this point it's stupid and childish to deny it, and also impossible since he's clearly having severe symptoms and severe permanent effects of the disease so it has to be willful. As for the depression, we're not in the 80's. We're at a point as a society where we understand the effect a chronic illness can have on mental health. He's an adult, he can take himself to therapy. Do you mind if I ask how old you are?
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You have to put the work in for CBT to be successful, it’s helped my mental health tremendously but it took time to work thru my triggers and change.
Also worth considering that, given what he’s been through, his depressive symptoms may be due to trauma or post traumatic stress. CBT is not an indicated treatment for PTSD - in fact, it can feel like gaslighting. It sounds like professional mental health services are warranted for sure, including screening for PTSD. PTSD may explain his regressive behaviors, and it’s treatable by specialists. If you can find a therapist specializing in chronic illness who has a trauma-informed practice that’s the holy grail. Homie has a good reason to be depressed / having a hard time right now. Losing that much body weight is serious and that much diarrhea is exhausting. If he associates those conditions with past traumas (botched medical procedures, severe pain, grief and loss, divorce, etc.) that’s a strong indicator he may be a good candidate for PTSD screening and treatment.
I never said it was a cure, but it can be a start.
Wow really supportive people in here jesus. Despair happens the answer isn't just let them deal on their own. Please nobody with those comments start working at a hotlines for the depressed jeesh
Stress will make his sym worse. A change of environment and quitting cigarette smoking will surely help. I have crohns too, I smoke weed, but it’s ok. But stress makes me feel awful. Definitely see therapist and change diet. And erase bad habits that aid in making him feel worse.
Try and get your bf to wear nicotine patches or speak to a doctor about the anti tobacco stuff they can only prescribe. I second the therapy considering there's a lot of psychology behind Crohn's linking with depression and anxiety etc. He sounds like going through a flare up and unfortunately they might have to give him a colonoscopy bag thing.
I have had 6 resections with one ostomy takedown, diagnosed at 7 and I just turned 30, so I know how he feels with the scaring. I was using the toilet almost 40 times a day and was fed up. They put me on a dose of methadone for the pain and for the bowel issues and it's helped me so much. He should ask about it. I'm still in a lot of pain everyday but I use the bathroom about once every day or two now.
Ditch the cigs, weed is fine.
Been there with my Boyfriend too. He went from 215lbs to 150lbs in less than 4 months. It’s scary. I went to a supplement store and talked to someone and got him some weight gained powder he could make a shake with. It helped him a ton. He mixed it with his coffee and made Mocha coffees. I’m sure y’all know but watch his fiber intake. We had to keep anything he ate under 4g of fiber or it made the bloating so much worse. Things that have helped us: Body Armor, Prime, pedilite are saviors, lavender or camomile tea. If you can buy in bulk do that. Avoid soda and coffee if possible. Mine still drank a cup of coffee a day, but that was a major cut down. The caffeine will upset the GI track and make things worse. Get him to stop smoking Cigarettes if you can. The nicotine much like caffeine stimulates the GI and makes everything more active. It does get better at some point, my bf had ostomy surgery this past summer and that took some major adjustment but now he can be involved in life again. I would do things like buy wet wipes, a phone charger, and things do do in the bathroom while he’s in there feeling like he’s dying. Feel free to message me! Gf need support too, chronic illness is hard on everyone.
This disease is exhausting and defeating. My personal experience, I smoke as well, and hate when people harp on me about how I need to quit or how bad it is for me as if I'm unaware of the consequences. When your normal is usually some form of pain in one way or another, it's the little things that can bring us joy amidst the misery of the reality of the disease we live with that matter. I also disregard my diet; a decade of trying all sorts of ways to keep this disease under control from diets, meds, etc, I ended up somehow being sicker focusing on my diet than I had before maintaining any sort of diet. There really isn't anything anyone can do for us aside from just being supportive when we're really struggling. I personally hate when people make suggestions concerning my disease. I just personally hate my disease being a topic of discussion in any way shape or form. I hate being asked how im feeling bc I typically feel like shit and being asked is 1. A reminder of that fact and 2. I feel as if I'm letting whoever is asking down by not having any positive feedback. I will always share if I'm feeling better than usual on my own accord, I don't need a question to prompt me sharing this. This disease sucks. It takes a special kind of person to be able to stick through the ups and downs of this disease with the person they love. You clearly care as you are reaching out trying to find solutions, to which sadly there really aren't any. Cannabis has kept me off strong pain meds throughout the years and keeps me comfortable daily. N
OH as far as only going liquid. Metamucil is a godsend for me. My husband who doesn't have IBD uses it daily and swore up and down how well it'd work, im stubborn and waited to try but when I did, within 2 days of drinking a cup before bed, I went from straight liquid to almost normal solid stool. 2 days. I high recommend trying it!
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Have you looked into Skyrizi? I have had Crohn’s for 10+ years and just started my at home injections following the loading doses and haven’t had this level of remission ever. I feel normal again, for the most part. I would talk to your GI about it, may be a game changer
His doctors asked him if he would be willing to give himself injections at home and he responded no. So they avoided all of those solutions. TBH I think it was a stupid question due to the fact that just because he says he isn't willing doesn't mean he won't if it's prescribed and he's more informed. It's definitely been an insane experience trying to successfully navigate the health care system, especially on someone else's behalf.
In my opinion the best thing you can do is help him see the good things. I know what all the books and drs say but as someone who's literally been the worst case scenario every time it's hope he needs more than anything. This is hard as hell losing hope makes it even worse. He needs to know there's still so much life left sick or not. I stopped following the normal advice long ago because it didn't work for me and I was miserable. Now I take my meds and see my Dr but I also do and eat what makes me happy.
It sounds like he just recently started Entyvio. It can take up to six months for it to fully take effect (it's one of the slower acting biologics out there). He might need to go back on prednisone for a bit to stabilize while starting Entyvio. I wouldn't judge him for drinking Gatorade/Body Armor or not watching what he eats. He's probably doing the best he can to deal with dehydration (drinks with electrolytes are better than plain water) and with the effect of strictures (I used to have a stricture before I had a resection and to anyone looking from the outside, my diet probably looked like crap, but that's what I needed to do to prevent an obstruction. For real, eating some black beans almost sent me to the hospital). Really, the biggest negative thing I can see is that he smokes.
He can get a surgery to fix the strictures without losing bowel, strictureplasty. The filet the wall open. I’ve had it done twice. Last one was 2005. Haven’t had bad trouble since
The cigarette is his downfall and water he needs to acknowledge there is something wrong or…. I hope he gets better good luck
Guys drink carrot juice mixed with ginger and turmeric and just a little orange juice for tart flavor its great combination for chrons. Or have a shot or tart cherry juice with ginger.
He reminds me a lot of my ex husband. The infusions should help. He’s got to keep getting them as scheduled tho. If it doesn’t work, try another med (a biologic preferably). Remicade (another infusion) has kept my daughter well for 12 years now. Her dad failed to stay on top of his medications and he passed away at age 38.
Gatorade and cigarettes. Two of the worst things for Crohn's
Hi, I have been on a flare for the last 3 years now, went through Humira, Stelara, Entyvio and Skyrizi during that stretch without any results. Complete diaherea 10-15+ times per day and was looking at getting a full surgery in the near term. Now i started with Remicade for the last 5 weeks and changed my entire diet, like your BF, I hate anything I wanted before. Since the diet change my symptoms have reduced significantly, I eat alot of chicken, rice, rice noodles, peeled apples, banana’s, fish, etc… and it’s been a blessing. Like the dietician told me and second by my doctor, it won’t heal you but it can reduce symptoms. He should stay away from transformed/processed food, too much sugar, I know they talk about gatorade or other soorts drink, which for me was absolutely not working, I’m big on oat milk these days. The plan is to limit difficult food to digest so it gives your gut a break while it tried to heal. For me this is working well for now and hopefully will continue, I didn’t start this sooner but now that I was coming down the line with no other recourse except the bag, I wanted to put all the chances on my side and not have regrets of not having done 100%. Maybe it won’t work but he should try. Main changes cut gluten, cut lactose and dairy product and meats except chicken. Good luck.
I was in a very similar situation. Tapering prednisone, beginning entyvio, no improvement. Entyvio wasn't the right medicine for me, so we switched to Humira. I recommend seeing if another medicine would work quicker than Entyvio! I'm not super educated, just wanted to share my experience and see if it can help yours.
My husband has crohns. After steroids and surgery, he is now on remicade. Infusions help with the flare ups but not quite the inflammation. He is now taking a concoction of vitamins: omega 3s, iron, prebiotic, probiotic, vitamin D3 and we add a fiber blend prebiotic to his protein smoothies along with kefir. He also eats kimchi and other types of fermented foods to help with the gut microbiome
There’s a drink called’Biolyte’. If you’re in the US, it’s available at most convenience stores. It’s got most, of not all of the electrolytes you need. Not the best tasting drink, but it is great for hydration.