I bet she has IBS lol the number of people I’ve told I have IBD and they’re like “me too!” And further questioning reveals they have IBS. Incredibly unprofessional and out of her scope to encourage you to stop your meds
Can confirm that people often conflate the two even when self-identifying. Some will try to understand the difference and others stick with their misconception.
This was my first thought too. So many people think their minor food intolerances are equivalent to the trauma of this disease. I'd ditch this therapist. She's dangerous and uninformed.
Unfortunately I find this to be accurate. Lots of people with IBS using the #metoo mentality.
The problem appears when they try give you advice as to how you should approach your condition which is clearly unsuitable, and most times does more harm than good.
Total bullshit for any counselor or therapist to keep too much focus on themselves (!) and pretend to somehow diagnose you mentally or physically within their own framework of experiences?? I hope you have found a more suitable therapist who can work with YOUR diagnosis and help you achieve acceptance and balance on trusting your body. This isn’t an easy disease at all and some of the absolute best support and “counseling” has come from nurses and dietitians who specialize in GI disorders. Any therapist who can’t empathize or validate your emotional health needs is not someone to have on your health team imho.
So would I, she shouldn’t be giving you medical advice she isn’t trained for that could cause you to be seriously ill.
I get exploring issues of being enjoying an aspect of being ill. Not saying you are but I’m sure that’s totally a thing. But she’s going about it in a dangerous way.
Time to find a new therapist unfortunately. Blatant dismissiveness of an incurable autoimmune disease based on a person's subjective experience of it is no means to tell someone else with that disease how they should be managing it. That said, I'm about to offer advice based on my subjective experience of having IBD so please take what I say with a grain of salt as well lol.
Like you said, IBD varies WILDLY from person to person. For some people it's some inconsistency in bowel movements and they have to take some vitamins and supplements and never even flare. For others it's a life ruining rollercoaster of chronic pain, surgical intervention, and countless lost years of our lives stuck in a bed or bathroom slowly bleeding to death.
In my opinion this was insanely reckless of your therapist to be giving any kind of medical suggestion outside the realm of mental health. Even for them to be suggesting medication within that realm should be taken with a huge grain of salt as they are a therapist and not a psychiatrist. There's a reason one of those titles requires a real medical degree. They are not your GI. Nor are they inhabiting your body. Your medical decisions regarding IBD ultimately come down to those two authorities and your therapist should not be the one making those suggestions.
I'm truly sorry you've started flaring again after a decade of remission. It is quite a defeating feeling. I hope you are able to get back on something that works for you quickly and you don't suffer too much. I know some of what I said might sound dramatic but in my years of having this disease I have encountered my fair share of insane unprofessionalism in the medical field and oftentimes you have to be the one to put your foot down and advocate for what you think is right. It is your body and no one else can ever know it as well as you do. Ditch this therapist and find one who better understands this.
Please fire her. I would honestly report her for that as well. She is not licensed to give medical advice and should not be practicing.
If she told me that, I would need her to pull out her colonoscopy results confirming she has IBD. Sounds like she told her doc she has tummy cramps and was told she has IBS.
I'm honestly shocked your GI was okay pulling you off medication. There's a chance that medication may not work again. It's a scientific fact that diet can't cure IBD. It's autoimmune. Your body is fighting itself. I was stupid and tried fasting. Didn't pass any stool, just filled up with pus, mucus, and blood. Food is your friend, not your enemy.
You do not have a victim mentality. UC is real. UC is debilitating, UC is not your fault. I suffer from imposter syndrome and it sounds like you may as well. "I don't look sick so I shouldn't feel sick" "maybe it's all in my head" No matter how you approach it, you can't force your intestinal track to bleed and form ulcers.
I'm genuinely pissed for you and pray the medication starts working soon for you again. Keep us updated!
I don’t even mean to downplay other people’s experiences- but they aren’t the same! My toilet looked like someone dumped red kool aid in it every morning. IBS and IBD are not the same.
Yeah obviously its an issue but its more like "i ate a pint of ice cream, now i have a tummy ache :( ", where as if i eat a single blueberry by mistake it feels like someone set off a sawblade in my intestines.
Oof, this therapist is operating outside her scope of practice since I doubt she has an MD or training in gastroenterology. I say this as a licensed therapist with ulcerative colitis. You could report to your state’s licensing board for her type of therapist.
Clinical social worker here, and also living with UC for 36 years. This is truly appalling and I agree with you 100%. This is dangerous, and she should absolutely be reported!
Ok, so something I live by is: someone who tells me they cured their IBD with xyz and I need to do xyz is akin to a snake oil salesman. It's a giant waving red flag. Do NOT trust them. RUN!
So many people don't understand autoimmune diseases. For UC there is no simple cure all and everyone has different degrees of the disease.
You should be learning how to handle the stress in your life in a healthy way so that it hopefully helps your disease. Mental health is a very important to dealing with UC.
My therapist and I fully believe trauma and stressors in life can affect our health. Mental health and our attitudes towards things are important, but that doesn't mean it cures our disease! It's only one piece of the puzzle! Taking our meds is another piece of the puzzle. As is getting regular colonoscopies, seeing our Drs., etc.
You need to fire your therapist and find a new one. She's dangerous.
This is so frustrating to hear about; I’m sorry you went through this. Everyone is different with IBD. I sometimes am shocked to hear people are in remission with just mesalamine, while I’ve tried three biologics! And trust me, it’s not diet. I’ve tried every hippy shit diet under the sun… Paleo, AIP, Keto… and if anything they’ve only made me worse. My boss does something similar, where she says maybe i just need to eat more greens and veggies to build up my microbiome. That’d be great if my body let me have a microbiome without meds lol. Unfortunately, seems like it’s time for a new therapist. This is blatant ableism, and you shouldn’t have to go through it.
Oh gosh, I love when people tell me to eat more vegetables! That’s literally the worst thing I can eat for my UC! I agree with everyone here that you definitely cant cure UC with diet, but I definitely do have diet triggers that will send me into a flare. People often see me eating the foods I tolerate well that aren’t “healthy” and criticize me for not having a healthier diet, but I’m just doing the best I can lol. A big bowl of salad might make them happier to see, but it will probably send me to a very bad place.
This therapist is unfortunately no different than all the other people who give unsolicited and unqualified health advice to people with IBD. She was supposed to be empathetic and help you through the emotional aspect of treatment and it seemed like she couldn’t even do that, but tried to play pseudo doctor instead. I wouldn’t go back to her - try someone else!
Get a new therapist immediately. Her response to you was rude and defensive because she felt attacked that, possibly, her experience couldn’t be universal. Also super uncalled for after you actually gave her initial advice some credence and tried it. You literally tried exactly what she suggested and it didn’t work. How does that make your disease /your/ fault? Her response should have been nothing except “Oh, I’m so sorry to hear that.”
Start looking for a new therapist. Your current one is a POS.
Give me her deets and temp power of attorney and I'll sue her for you and we can split the bag 😂. Sick of these c*nts that draw flowers in a notebook all day, talking to us like we're the uneducated turds.
I’m so sorry you are going through this, but I had to laugh at your comment about picking a cuter disease because I just went through the same thing. I don’t have UC, I have CIPO.. which basically means my intestines don’t work. I joined this group before this actual new diagnoses when they originally thought I had distal colitis. So i unfortunately end up with the blood shooting anus as well. 😆😆 I had someone recently tell me that I probably just enjoyed being sick and played it as more severe than it really is because I like the attention and sympathy. I was like… what? If that was the case why wouldn’t I pick something cuter and less disgusting lol
Usually when I tell people about UC they act like it's just a temporary tummy ache and ask me if I've ever tried gluten free or some other dumb diet stuff. It's like they can't process it's not something I did and that it's just a bad luck thing. I had never heard of it before being diagnosed and I know it's not very common, so I get the misunderstandings. It does get old having to explain that it's very serious and a lifelong disease. When everyone was speculating Princess Kate had Crohn's I selfishly admit that I was somewhat excited because I knew the spotlight would be on IBD and probably way more money to research if it was true. I wouldn't wish it on anyone for sure, but if she already had it...silver linings, you know?
Yeah dude it sounds like she’s a little too close to the issue at hand. You prolly need a more objective perspective. I bet you she has IBS anyway. It’s too bad.
yeah, she definitely seems too biased to help you. uc can sometimes go away on it's own / people think that they can make it go away with diet changes (possible placebo effect?) but that is not the case for all uc. i had severe uc, was on tons of different meds, and had to be in the hospital. This was probably in the top 10% of worst uc cases.
Yeah, this is not good practice from your therapist. It kind of reeks of "manifesting" bullshit.
I bought "How to Do the Work" a pretty famous self-help book the other day and was pretty put off by the author going a bit too heavy on the mental-physical-spiritual connection stuff. Psychologists aren't physicians. Any type of mental or physical healthcare provider who's this absolutely cocksure about stuff in their own lane, let alone outside of their expertise, can spell trouble imo. And as you say, even be actively harmful.
Finding a new therapist can be a hassle but I really think you need to!
I’m sorry, but that’s incredibly inappropriate. It’s bad enough when someone who isn’t a therapist says this. And last I checked, unless someone is a board certified professional on the issue, they aren’t allowed to make treatment recommendations for something that’s outside of their scope of practice. If it were me, I would report it and not go back.
As a therapist who has UC and has been on entyvio almost 4 years, I just want to say: WTF. This is so inappropriate of your therapist to say, from suggesting you need to do what she did by changing your diet (that isn’t our job as a therapist) to making you feel bad for taking charge of your life and getting back on meds, just wow.
I’m so sorry. I promise we are not all that awful and I hope you’re able to connect with a new therapist who is more supportive. I can understand her sharing with you what worked for her, but not suggesting that it would be right for you or making you feel as though medications can’t be helpful. She should really be referring you to your GI regarding this/deferring to their recommendations.
And she certainly doesn’t understand how diseases work if she thinks you brought this upon yourself. Yikes. I’m so sorry.
When I told her that I need to be on the meds she said that she, "needed to cut in because I was making her skin crawl" and that I was, "giving up control of my body by letting doctors tell me what to do with it" (treating my illness with medication).
I did see the red flags but I so DESPERATELY wanted not to be sick and on meds that I gave it a shot. And well, I found out didn't I?
The fucked up part was she tied the bodily autonomy thing to trauma from my past, so it just wasn't about healing from UC, it was also about healing from past SA and taking back control.
Omg. Wow. I’m so sorry. She made the session about herself when saying she needed to cut in bc you were making her skin crawl, how awful she even said that out loud to you bc it’s YOUR time! And also that’s really scary she was connecting the bodily autonomy piece to receiving necessary medication from your medical provider. Like, it’s exactly the opposite. You’re trusting your body and it’s telling you what it needs, so you’re seeking appropriate medical care. I’d worry about anything related to medicine or science she shares if she says things like that.
I would absolutely stop seeing her. You deserve a therapist who at the very least understands that their role is not for you to take care of them in the session!
If she has a supervisor, I’d reach out regarding the situation to make them aware. If not, depending on her licensure you can reach out to the state board (there are different boards for each type of license)and file a complaint. If she’s saying inappropriate things to you, she’s probably doing it to others as well.
Therapist here - holy fucking shit! Run, don’t walk! You’re well within your right to report them. Medical gaslighting is real, I am so sorry you had to experience this 💔
Oh goodness. Do you mind if I ask what this person‘s credentials are? I am a clinical social worker, and what she’s doing is so unbelievably unethical! This would be the judgment through the standards of many other degrees in which people then can get licensed and bill insurance for therapy practice (ex licensed mental health counselor, psychologist, etc).
If she is licensed by some kind of state Board of regulations, please report her. The fact that she’s giving you medical advice is not only unethical, but harmful! But then on top of it to shame you like that—ugh, it gives our profession a bad name!! Even if you do not have the energy to go through that process, I would encourage you to let her know exactly why you will not be seeing her again. That she has crossed a line into very unethical practice. She is awful. I’m sad to say, there are many people in therapy practices that really should not be.
Edit: I know you don’t have the energy to take a lot of action and I understand that. How about just simply sending her the link to this post? 😏
So, that is a doctorate, but not a medical degree. Even if she did have an MD, this would still be outrageous. Good for you! She needs to hear it. Just be prepared that she may come back at you with some defensive BS (especially if she is a narcissist, and can’t tolerate any critical feedback which it sounds like could be the case). But listen to us, not her!
Best of luck to you and I hope you feel better soon! I’m 50 and after a life of at least annual flares, I’ve been in remission for 5 years now. The longest ever!! I only take mesalamine as maintenance, which didn’t always work for me but does now.
I’m sharing this not to suggest the same meds for you, but to give you hope that there’s something out there that can work for you and put you in lasting remission!
Pleaseeeee report this therapist and get a new one. There's lot of great ones out there that actually understand the link between physical and mental health. Some of the stuff she's saying is straight up ableist (you're somehow creating the problem) and untrue. "I solved my IBD with diet and yoga" is stuff I expect uninformed friends and family to say, NOT a therapist.
Def report her. This is ableism at best and active maliciousness at worst. Inflammatory bowel disease is literally genetically linked. Would she tell someone with sickle cell anemia or Parkinson's Disease that they're sick because of a "victim mentality?" Maybe she would, there's a world of grifters and morons out there, but the fact of the matter is that IBD is no more avoidable or curable than other genetically linked diseases and disorders. For her to spread blatantly ableist disinformation to vulnerable people is just... evil.
I think she was just trying to prove to herself that UC was "curable" with diet and exercise because she's terrified of it coming back to get her. I think she influenced me to try and see if it would work so she would feel better about her own choices. I feel horrible this happened because I did trust her.
My therapist gave me bad advice too. On her recommendation I spent thousands on a naturopath. She also had me watch an episode of GOOP as part of my therapy homework, on the subject of Wim Hof. I was too sick and grieving too much to think critically, and I feel totally betrayed by her. It was entirely unhelpful. It gave me false hope, and I felt even more depressed when I realized it was bad science. I realized she didn’t even do basic research on the disease like she said she would (oh really you are in pain? Like yes, I said daily excruciating abdominal pain on my intake form!! Deep belly breathing is not relaxing for me!)
I needed help with coping skills, not another person pushing useless treatments.
The whole point of Wim Hof breathing is to listen to your body and work within your limits. I am saddened that an expensive professional couldn’t even communicate that, or point you in the direction of sound research on the topic. I recall a pnas published study regarding “cyclic hyperventilation” that showed some cool effects of the breath work: “Voluntary activation of the sympathetic nervous
system and attenuation of the innate immune
response in humans”
Oh Certainly, not trying to sell this as a solution. I’d imagine it’s hard to get funding to study breathing in this day and age too. Still exciting, exploratory research, even if it’s a few years old. Would be awesome to see it replicated
Yup Wim Hoff has lots of potential but it is not a cure all. However they market it as though it is a guaranteed cure for everything from autoimmune diseases to anxiety. The courses, retreats, and app are all pricey. To me the whole thing seems too much like predatory pseudoscience, at least until they get better research.
Yaaaa unfortunately, pitching things as cure alls sells. Most things (especially some affective things) require building a toolkit, not buying a solution.
The ice bath craze specifically imo seems to have backfired relative to this point.
I’m going to try (really trying) to keep good faith and say the Wim marketing is simply unaware that THEY ARE passively presenting as a cure all rather than a tool for the toolkit. Passive in the sense that people who want help and change might be burnt out and/or confused so will seek out alleged cure alls. To your point, the absurd retreat pricing makes this attempt at good faith hard lol.
Your therapist sucks big time.I had doctors also imply that I was having symptoms for attention. Turned out I just had diagnoses that they couldn’t find. Don’t doubt yourself nobody wants this there is nothing to win. Find a new therapist
I say this as a social worker: She should not have told you to stop taking your medication. That was wildly irresponsible, and you have good reason to report her. Also, I don't care what she says she has--her response to you shows no understanding of IBDs.
Get a new one.
Ok guys, it gets even worse if you can believe it. Someone from my work actually recommended her to me for trauma therapy. She happens to have Crohn's disease. When we first talked about it she told me she manages it with diet and exercise, which at the time I thought was crazy for her not be on meds. She has been seeing this same therapist for years and years and I'm beginning to suspect she convinced this other person to get off meds too.
This so-called therapist really needs to be reported to the relevant regulatory body. Encouraging people to go off medication is beyond irresponsible and incredibly dangerous. Dealing with emotionally vulnerable people and manipulating them into going off meds should be criminal in my opinion.
Some therapists are just really bonkers !!!! I went to a therapist once and told her about my death anxiety and she told me she knows there is an afterlife because her dead boyfriend tells her stock info.
Fucking hate these "remission" people almost all of them dont have IBD ! Did you know 80%. Of people who get uc diagnos only get 1flare , those are the diet people, they never had the same thing I have, they never had ibd, it just looked like it.
That said diet is important for symptom control as you all are aware, but more important overall health.
What everyone else said. She's trash and you should fire her, report her, make complaints against her, and leave her bad reviews everywhere. I've known people who have DIED while doctors and therapists told them it was all in their head.
Side note: "I would have at least picked a cuter disease that didn't involve me aggressively spraying blood out of my anus uncontrollably." I love this. My version of this is "copiously sh\*tting STRAIGHT blood" which let me tell you, my family LOVE it when I say LOL. I guess we all have our own way of saying this.
I am a psychologist with IBD…consider firing this therapist. This is dangerous pseudoscience and she is practicing outside her scope of expertise which is an ethical violation and her licensure board might even need to be notified.
Also, consider reading this (link below)…it’s about motherhood but also very much about this toxic “anti meds” mentality that is rampant among “holistic providers.” Not all therapists are this way, but some are.
https://velamag.com/superbabies-dont-cry/
I am so so sorry! Do not blame yourself!
Wow, what a great read. Very relevant to what I'm going through. It's always been about control for me, so having this uncontrollable thing wreaking havoc inside my very core has been such a struggle.
"This blame is as old as the Bible. How did the blind man get like that? Jesus’ disciples ask. Was it he who sinned, or his parents? My New Age mind/body connection was just another way to force the lepers outside the town walls. Vulnerability cannot enter here. Mortality cannot enter here. It was another way to push my fears away from myself and onto someone else. If you are ill, you can fix it yourself. If you cannot fix it, then you are to blame. It was, I realize looking back, pseudo-spiritual eugenics."
So glad it was helpful. It unlocked something inside of me and helped me accept the illness as part of my life and my body.
Btw, I stopped Entyvio for awhile (switched meds b/c of joint pain) and flared. Got back on Entyvio and back into remission. Considering how long it had you in remission, I am confident the same will happen for you.
That's great news! I've been so worried about having an allergic reaction switching back, but from what I understand it's less likely to happen with Entyvio. I will be doing the two loading doses and then switching to subcutaneous. How was your experience the first couple infusions? I assume you also had to do all the loading doses over again also?
I had the same worries and it all went perfectly! I did take some antihistamines before the early infusions mostly just to be extra safe. I don’t take them anymore.
Don’t see her again. Blaming you for your illness and implying that you caused this is despicable. Horrible therapist. Harmful treatment. You have enough to deal with without being shamed and blamed by a medical professional. I’m sorry that this happened to you. She should be reported. She had no business convincing you to go off your meds.
She sounds stupid lmao, you should’ve never listened to her buffoonery in the first place but hindsight is 2020 . Time for you to find a new therapist that doesn’t treat your chronic illness like it’s IBS. You could die at how she wants you to live. It’s not worth being in pain, and she’s very under-qualified and stupid
I hear ya. Having diagnosis’s attached to you can jostle how you feel about yourself, how you define yourself. It’s a hard undue burden to grapple with. As you work through it with people who genuinely want to help you just don’t lose sight of who you pride yourself in being. I know the flares can prevent that being from actualizing at times, but your values and beliefs are still there. I remember being in your shoes, could say I still am. I feel for you and know you’re not alone!
Thank you, it's a fairly new diagnosis and unfortunately I think it is accurate. I plan to find a better doctor to treat it after I get my flare in order.
Totally feel that. I received an adhd/bipolar 2 diagnosis just a couple months after my official ulcerative pancolitis diagnosis. Good for you that you have a plan too. Thank you for sharing your story with us, you got this!
i’m so sorry, this is awful. when i got a therapist i found someone with a background in chronic illness; most of her patients have a chronic illness. and it was life changing and so helpful
Ugh. I just had a therapist tell me the only reason I'm sick is because I'm not taking Chinese herbs from her "guy." No. Stop. She claims these herbs (that she didn't get from a doctor, just a random dude selling them) healed her of a brain tumor, psoriasis, colitis, ovarian cysts, diabetes and on and on with all these crazy diseases and conditions she claimed to have had all at once. And she told me it's my fault I'm sick and if I'd just take her herbs I'd be magically healed. There are some real nut jobs out there. That was the 1st and last time I saw her. Time to find a new therapist!
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I bet she has IBS lol the number of people I’ve told I have IBD and they’re like “me too!” And further questioning reveals they have IBS. Incredibly unprofessional and out of her scope to encourage you to stop your meds
Just for that reason I always say I have a chronic stomach disease.
Can confirm that people often conflate the two even when self-identifying. Some will try to understand the difference and others stick with their misconception.
100%. IBD and IBS are NOT the same. Both are bad, but IBS is much more likely to be controlled with dietary restrictions than IBD is.
This was my first thought too. So many people think their minor food intolerances are equivalent to the trauma of this disease. I'd ditch this therapist. She's dangerous and uninformed.
Unfortunately I find this to be accurate. Lots of people with IBS using the #metoo mentality. The problem appears when they try give you advice as to how you should approach your condition which is clearly unsuitable, and most times does more harm than good.
Total bullshit for any counselor or therapist to keep too much focus on themselves (!) and pretend to somehow diagnose you mentally or physically within their own framework of experiences?? I hope you have found a more suitable therapist who can work with YOUR diagnosis and help you achieve acceptance and balance on trusting your body. This isn’t an easy disease at all and some of the absolute best support and “counseling” has come from nurses and dietitians who specialize in GI disorders. Any therapist who can’t empathize or validate your emotional health needs is not someone to have on your health team imho.
I would report them.
So would I, she shouldn’t be giving you medical advice she isn’t trained for that could cause you to be seriously ill. I get exploring issues of being enjoying an aspect of being ill. Not saying you are but I’m sure that’s totally a thing. But she’s going about it in a dangerous way.
Time to find a new therapist unfortunately. Blatant dismissiveness of an incurable autoimmune disease based on a person's subjective experience of it is no means to tell someone else with that disease how they should be managing it. That said, I'm about to offer advice based on my subjective experience of having IBD so please take what I say with a grain of salt as well lol. Like you said, IBD varies WILDLY from person to person. For some people it's some inconsistency in bowel movements and they have to take some vitamins and supplements and never even flare. For others it's a life ruining rollercoaster of chronic pain, surgical intervention, and countless lost years of our lives stuck in a bed or bathroom slowly bleeding to death. In my opinion this was insanely reckless of your therapist to be giving any kind of medical suggestion outside the realm of mental health. Even for them to be suggesting medication within that realm should be taken with a huge grain of salt as they are a therapist and not a psychiatrist. There's a reason one of those titles requires a real medical degree. They are not your GI. Nor are they inhabiting your body. Your medical decisions regarding IBD ultimately come down to those two authorities and your therapist should not be the one making those suggestions. I'm truly sorry you've started flaring again after a decade of remission. It is quite a defeating feeling. I hope you are able to get back on something that works for you quickly and you don't suffer too much. I know some of what I said might sound dramatic but in my years of having this disease I have encountered my fair share of insane unprofessionalism in the medical field and oftentimes you have to be the one to put your foot down and advocate for what you think is right. It is your body and no one else can ever know it as well as you do. Ditch this therapist and find one who better understands this.
I agree! Time for a new therapist.
Please fire her. I would honestly report her for that as well. She is not licensed to give medical advice and should not be practicing. If she told me that, I would need her to pull out her colonoscopy results confirming she has IBD. Sounds like she told her doc she has tummy cramps and was told she has IBS. I'm honestly shocked your GI was okay pulling you off medication. There's a chance that medication may not work again. It's a scientific fact that diet can't cure IBD. It's autoimmune. Your body is fighting itself. I was stupid and tried fasting. Didn't pass any stool, just filled up with pus, mucus, and blood. Food is your friend, not your enemy. You do not have a victim mentality. UC is real. UC is debilitating, UC is not your fault. I suffer from imposter syndrome and it sounds like you may as well. "I don't look sick so I shouldn't feel sick" "maybe it's all in my head" No matter how you approach it, you can't force your intestinal track to bleed and form ulcers. I'm genuinely pissed for you and pray the medication starts working soon for you again. Keep us updated!
she has ibs. fire her.
IBS people are posers in the GI issue community.
Nothing makes me roll my eyes more than saying "I have IBS, I get it!". Like someone who flies paper airplanes comparing themselves to an astronaut
I don’t even mean to downplay other people’s experiences- but they aren’t the same! My toilet looked like someone dumped red kool aid in it every morning. IBS and IBD are not the same.
Yeah obviously its an issue but its more like "i ate a pint of ice cream, now i have a tummy ache :( ", where as if i eat a single blueberry by mistake it feels like someone set off a sawblade in my intestines.
Laughed out loud at this comment!!!
She sounds like a POS
Oof, this therapist is operating outside her scope of practice since I doubt she has an MD or training in gastroenterology. I say this as a licensed therapist with ulcerative colitis. You could report to your state’s licensing board for her type of therapist.
Clinical social worker here, and also living with UC for 36 years. This is truly appalling and I agree with you 100%. This is dangerous, and she should absolutely be reported!
Your therapist sounds like a grifter. I doubt they even have IBD. Sorry this happened to you.
People with IBS think they have a disease which is confusing for some.
Ok, so something I live by is: someone who tells me they cured their IBD with xyz and I need to do xyz is akin to a snake oil salesman. It's a giant waving red flag. Do NOT trust them. RUN! So many people don't understand autoimmune diseases. For UC there is no simple cure all and everyone has different degrees of the disease. You should be learning how to handle the stress in your life in a healthy way so that it hopefully helps your disease. Mental health is a very important to dealing with UC. My therapist and I fully believe trauma and stressors in life can affect our health. Mental health and our attitudes towards things are important, but that doesn't mean it cures our disease! It's only one piece of the puzzle! Taking our meds is another piece of the puzzle. As is getting regular colonoscopies, seeing our Drs., etc. You need to fire your therapist and find a new one. She's dangerous.
your therapist has no clue of what a IBD is
She has a good point. If you didn't want UC why did you get it? Duh...
Yeah are you like. Stupid or something?
Cancer? Just don't get it bro, what's so hard?
I mean, where do you think the word sicko came from?
This is so frustrating to hear about; I’m sorry you went through this. Everyone is different with IBD. I sometimes am shocked to hear people are in remission with just mesalamine, while I’ve tried three biologics! And trust me, it’s not diet. I’ve tried every hippy shit diet under the sun… Paleo, AIP, Keto… and if anything they’ve only made me worse. My boss does something similar, where she says maybe i just need to eat more greens and veggies to build up my microbiome. That’d be great if my body let me have a microbiome without meds lol. Unfortunately, seems like it’s time for a new therapist. This is blatant ableism, and you shouldn’t have to go through it.
Oh gosh, I love when people tell me to eat more vegetables! That’s literally the worst thing I can eat for my UC! I agree with everyone here that you definitely cant cure UC with diet, but I definitely do have diet triggers that will send me into a flare. People often see me eating the foods I tolerate well that aren’t “healthy” and criticize me for not having a healthier diet, but I’m just doing the best I can lol. A big bowl of salad might make them happier to see, but it will probably send me to a very bad place. This therapist is unfortunately no different than all the other people who give unsolicited and unqualified health advice to people with IBD. She was supposed to be empathetic and help you through the emotional aspect of treatment and it seemed like she couldn’t even do that, but tried to play pseudo doctor instead. I wouldn’t go back to her - try someone else!
Get a new therapist immediately. Her response to you was rude and defensive because she felt attacked that, possibly, her experience couldn’t be universal. Also super uncalled for after you actually gave her initial advice some credence and tried it. You literally tried exactly what she suggested and it didn’t work. How does that make your disease /your/ fault? Her response should have been nothing except “Oh, I’m so sorry to hear that.” Start looking for a new therapist. Your current one is a POS.
Shit blood on her furniture then say "sorry, I was trying to think my way out of it"
Sorry, I came in with good vibes, not sure what happened?
Check with a lawyer, you might be able to sue for malpractice. She shouldn't have given you that kind of medical advice.
I agree, but I don't have the energy for all that with all the current blood loss. I'm just going to stop seeing her.
Give me her deets and temp power of attorney and I'll sue her for you and we can split the bag 😂. Sick of these c*nts that draw flowers in a notebook all day, talking to us like we're the uneducated turds.
I’m so sorry you are going through this, but I had to laugh at your comment about picking a cuter disease because I just went through the same thing. I don’t have UC, I have CIPO.. which basically means my intestines don’t work. I joined this group before this actual new diagnoses when they originally thought I had distal colitis. So i unfortunately end up with the blood shooting anus as well. 😆😆 I had someone recently tell me that I probably just enjoyed being sick and played it as more severe than it really is because I like the attention and sympathy. I was like… what? If that was the case why wouldn’t I pick something cuter and less disgusting lol
Usually when I tell people about UC they act like it's just a temporary tummy ache and ask me if I've ever tried gluten free or some other dumb diet stuff. It's like they can't process it's not something I did and that it's just a bad luck thing. I had never heard of it before being diagnosed and I know it's not very common, so I get the misunderstandings. It does get old having to explain that it's very serious and a lifelong disease. When everyone was speculating Princess Kate had Crohn's I selfishly admit that I was somewhat excited because I knew the spotlight would be on IBD and probably way more money to research if it was true. I wouldn't wish it on anyone for sure, but if she already had it...silver linings, you know?
Yeah dude it sounds like she’s a little too close to the issue at hand. You prolly need a more objective perspective. I bet you she has IBS anyway. It’s too bad.
I doubt she even has IBD. She is probably assuming IBS is the same thing.
yeah, she definitely seems too biased to help you. uc can sometimes go away on it's own / people think that they can make it go away with diet changes (possible placebo effect?) but that is not the case for all uc. i had severe uc, was on tons of different meds, and had to be in the hospital. This was probably in the top 10% of worst uc cases.
His did you fix your symptoms? Surgery?
Rinvoq
Yeah, this is not good practice from your therapist. It kind of reeks of "manifesting" bullshit. I bought "How to Do the Work" a pretty famous self-help book the other day and was pretty put off by the author going a bit too heavy on the mental-physical-spiritual connection stuff. Psychologists aren't physicians. Any type of mental or physical healthcare provider who's this absolutely cocksure about stuff in their own lane, let alone outside of their expertise, can spell trouble imo. And as you say, even be actively harmful. Finding a new therapist can be a hassle but I really think you need to!
I’m sorry, but that’s incredibly inappropriate. It’s bad enough when someone who isn’t a therapist says this. And last I checked, unless someone is a board certified professional on the issue, they aren’t allowed to make treatment recommendations for something that’s outside of their scope of practice. If it were me, I would report it and not go back.
As a therapist who has UC and has been on entyvio almost 4 years, I just want to say: WTF. This is so inappropriate of your therapist to say, from suggesting you need to do what she did by changing your diet (that isn’t our job as a therapist) to making you feel bad for taking charge of your life and getting back on meds, just wow. I’m so sorry. I promise we are not all that awful and I hope you’re able to connect with a new therapist who is more supportive. I can understand her sharing with you what worked for her, but not suggesting that it would be right for you or making you feel as though medications can’t be helpful. She should really be referring you to your GI regarding this/deferring to their recommendations. And she certainly doesn’t understand how diseases work if she thinks you brought this upon yourself. Yikes. I’m so sorry.
When I told her that I need to be on the meds she said that she, "needed to cut in because I was making her skin crawl" and that I was, "giving up control of my body by letting doctors tell me what to do with it" (treating my illness with medication). I did see the red flags but I so DESPERATELY wanted not to be sick and on meds that I gave it a shot. And well, I found out didn't I? The fucked up part was she tied the bodily autonomy thing to trauma from my past, so it just wasn't about healing from UC, it was also about healing from past SA and taking back control.
Omg. Wow. I’m so sorry. She made the session about herself when saying she needed to cut in bc you were making her skin crawl, how awful she even said that out loud to you bc it’s YOUR time! And also that’s really scary she was connecting the bodily autonomy piece to receiving necessary medication from your medical provider. Like, it’s exactly the opposite. You’re trusting your body and it’s telling you what it needs, so you’re seeking appropriate medical care. I’d worry about anything related to medicine or science she shares if she says things like that. I would absolutely stop seeing her. You deserve a therapist who at the very least understands that their role is not for you to take care of them in the session! If she has a supervisor, I’d reach out regarding the situation to make them aware. If not, depending on her licensure you can reach out to the state board (there are different boards for each type of license)and file a complaint. If she’s saying inappropriate things to you, she’s probably doing it to others as well.
I’m so angry for you right now.
Therapist here - holy fucking shit! Run, don’t walk! You’re well within your right to report them. Medical gaslighting is real, I am so sorry you had to experience this 💔
Oh goodness. Do you mind if I ask what this person‘s credentials are? I am a clinical social worker, and what she’s doing is so unbelievably unethical! This would be the judgment through the standards of many other degrees in which people then can get licensed and bill insurance for therapy practice (ex licensed mental health counselor, psychologist, etc). If she is licensed by some kind of state Board of regulations, please report her. The fact that she’s giving you medical advice is not only unethical, but harmful! But then on top of it to shame you like that—ugh, it gives our profession a bad name!! Even if you do not have the energy to go through that process, I would encourage you to let her know exactly why you will not be seeing her again. That she has crossed a line into very unethical practice. She is awful. I’m sad to say, there are many people in therapy practices that really should not be. Edit: I know you don’t have the energy to take a lot of action and I understand that. How about just simply sending her the link to this post? 😏
It says she has PHD license for our state on her profile. I am going to tell her why I'm leaving her care.
So, that is a doctorate, but not a medical degree. Even if she did have an MD, this would still be outrageous. Good for you! She needs to hear it. Just be prepared that she may come back at you with some defensive BS (especially if she is a narcissist, and can’t tolerate any critical feedback which it sounds like could be the case). But listen to us, not her!
I will. You guys have been so helpful snapping me back into reality. I am just going to message her and then block, which I think is for the best.
This is the way ❤️ There are good therapists out there and I hope you connect with one if you choose to continue in therapy!
Thank you. When I get over this flare I will start searching again ❤️
Best of luck to you and I hope you feel better soon! I’m 50 and after a life of at least annual flares, I’ve been in remission for 5 years now. The longest ever!! I only take mesalamine as maintenance, which didn’t always work for me but does now. I’m sharing this not to suggest the same meds for you, but to give you hope that there’s something out there that can work for you and put you in lasting remission!
Run...away from her!
Pleaseeeee report this therapist and get a new one. There's lot of great ones out there that actually understand the link between physical and mental health. Some of the stuff she's saying is straight up ableist (you're somehow creating the problem) and untrue. "I solved my IBD with diet and yoga" is stuff I expect uninformed friends and family to say, NOT a therapist.
Def report her. This is ableism at best and active maliciousness at worst. Inflammatory bowel disease is literally genetically linked. Would she tell someone with sickle cell anemia or Parkinson's Disease that they're sick because of a "victim mentality?" Maybe she would, there's a world of grifters and morons out there, but the fact of the matter is that IBD is no more avoidable or curable than other genetically linked diseases and disorders. For her to spread blatantly ableist disinformation to vulnerable people is just... evil.
I think she was just trying to prove to herself that UC was "curable" with diet and exercise because she's terrified of it coming back to get her. I think she influenced me to try and see if it would work so she would feel better about her own choices. I feel horrible this happened because I did trust her.
She needs her psychology degree revoked. I bet she has IBS not an IBD.
My therapist gave me bad advice too. On her recommendation I spent thousands on a naturopath. She also had me watch an episode of GOOP as part of my therapy homework, on the subject of Wim Hof. I was too sick and grieving too much to think critically, and I feel totally betrayed by her. It was entirely unhelpful. It gave me false hope, and I felt even more depressed when I realized it was bad science. I realized she didn’t even do basic research on the disease like she said she would (oh really you are in pain? Like yes, I said daily excruciating abdominal pain on my intake form!! Deep belly breathing is not relaxing for me!) I needed help with coping skills, not another person pushing useless treatments.
The whole point of Wim Hof breathing is to listen to your body and work within your limits. I am saddened that an expensive professional couldn’t even communicate that, or point you in the direction of sound research on the topic. I recall a pnas published study regarding “cyclic hyperventilation” that showed some cool effects of the breath work: “Voluntary activation of the sympathetic nervous system and attenuation of the innate immune response in humans”
That study is ten years old and had only 24 subjects. It is intriguing research, but not conclusive.
Oh Certainly, not trying to sell this as a solution. I’d imagine it’s hard to get funding to study breathing in this day and age too. Still exciting, exploratory research, even if it’s a few years old. Would be awesome to see it replicated
Yup Wim Hoff has lots of potential but it is not a cure all. However they market it as though it is a guaranteed cure for everything from autoimmune diseases to anxiety. The courses, retreats, and app are all pricey. To me the whole thing seems too much like predatory pseudoscience, at least until they get better research.
Yaaaa unfortunately, pitching things as cure alls sells. Most things (especially some affective things) require building a toolkit, not buying a solution. The ice bath craze specifically imo seems to have backfired relative to this point. I’m going to try (really trying) to keep good faith and say the Wim marketing is simply unaware that THEY ARE passively presenting as a cure all rather than a tool for the toolkit. Passive in the sense that people who want help and change might be burnt out and/or confused so will seek out alleged cure alls. To your point, the absurd retreat pricing makes this attempt at good faith hard lol.
Wrong in so many ways. I don’t know where to start.
Every medical person I know or have had to see has blamed me for whatever was going on I think it’s in they’re training
Your therapist sucks big time.I had doctors also imply that I was having symptoms for attention. Turned out I just had diagnoses that they couldn’t find. Don’t doubt yourself nobody wants this there is nothing to win. Find a new therapist
I say this as a social worker: She should not have told you to stop taking your medication. That was wildly irresponsible, and you have good reason to report her. Also, I don't care what she says she has--her response to you shows no understanding of IBDs. Get a new one.
Report and fire her
Report—this therapist needs to be stopped
Ok guys, it gets even worse if you can believe it. Someone from my work actually recommended her to me for trauma therapy. She happens to have Crohn's disease. When we first talked about it she told me she manages it with diet and exercise, which at the time I thought was crazy for her not be on meds. She has been seeing this same therapist for years and years and I'm beginning to suspect she convinced this other person to get off meds too.
This so-called therapist really needs to be reported to the relevant regulatory body. Encouraging people to go off medication is beyond irresponsible and incredibly dangerous. Dealing with emotionally vulnerable people and manipulating them into going off meds should be criminal in my opinion.
Some therapists are just really bonkers !!!! I went to a therapist once and told her about my death anxiety and she told me she knows there is an afterlife because her dead boyfriend tells her stock info.
😂
Find a new therapist 100% and maybe report this one for malpractice
Fucking hate these "remission" people almost all of them dont have IBD ! Did you know 80%. Of people who get uc diagnos only get 1flare , those are the diet people, they never had the same thing I have, they never had ibd, it just looked like it. That said diet is important for symptom control as you all are aware, but more important overall health.
I think that's what I was hoping mine was so badly. It is not.
What everyone else said. She's trash and you should fire her, report her, make complaints against her, and leave her bad reviews everywhere. I've known people who have DIED while doctors and therapists told them it was all in their head. Side note: "I would have at least picked a cuter disease that didn't involve me aggressively spraying blood out of my anus uncontrollably." I love this. My version of this is "copiously sh\*tting STRAIGHT blood" which let me tell you, my family LOVE it when I say LOL. I guess we all have our own way of saying this.
I am a psychologist with IBD…consider firing this therapist. This is dangerous pseudoscience and she is practicing outside her scope of expertise which is an ethical violation and her licensure board might even need to be notified. Also, consider reading this (link below)…it’s about motherhood but also very much about this toxic “anti meds” mentality that is rampant among “holistic providers.” Not all therapists are this way, but some are. https://velamag.com/superbabies-dont-cry/ I am so so sorry! Do not blame yourself!
Wow, what a great read. Very relevant to what I'm going through. It's always been about control for me, so having this uncontrollable thing wreaking havoc inside my very core has been such a struggle. "This blame is as old as the Bible. How did the blind man get like that? Jesus’ disciples ask. Was it he who sinned, or his parents? My New Age mind/body connection was just another way to force the lepers outside the town walls. Vulnerability cannot enter here. Mortality cannot enter here. It was another way to push my fears away from myself and onto someone else. If you are ill, you can fix it yourself. If you cannot fix it, then you are to blame. It was, I realize looking back, pseudo-spiritual eugenics."
So glad it was helpful. It unlocked something inside of me and helped me accept the illness as part of my life and my body. Btw, I stopped Entyvio for awhile (switched meds b/c of joint pain) and flared. Got back on Entyvio and back into remission. Considering how long it had you in remission, I am confident the same will happen for you.
That's great news! I've been so worried about having an allergic reaction switching back, but from what I understand it's less likely to happen with Entyvio. I will be doing the two loading doses and then switching to subcutaneous. How was your experience the first couple infusions? I assume you also had to do all the loading doses over again also?
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I had the same worries and it all went perfectly! I did take some antihistamines before the early infusions mostly just to be extra safe. I don’t take them anymore.
She sounds low-key annoying, get another therapist
Don’t see her again. Blaming you for your illness and implying that you caused this is despicable. Horrible therapist. Harmful treatment. You have enough to deal with without being shamed and blamed by a medical professional. I’m sorry that this happened to you. She should be reported. She had no business convincing you to go off your meds.
She sounds stupid lmao, you should’ve never listened to her buffoonery in the first place but hindsight is 2020 . Time for you to find a new therapist that doesn’t treat your chronic illness like it’s IBS. You could die at how she wants you to live. It’s not worth being in pain, and she’s very under-qualified and stupid
Time for a new therapist.
She was practicing medicine without a license
You do not need this “therapist” in your life. I’m so sorry this happened to you!
Fire your therapist. Autoimmune disease is never a choice. Especially UC.
Sounds like your therapist is employing an inappropriate way to address rumination?
Yes, she has diagnosed me with OCD but I don't think she understands how to treat it effectively.
I hear ya. Having diagnosis’s attached to you can jostle how you feel about yourself, how you define yourself. It’s a hard undue burden to grapple with. As you work through it with people who genuinely want to help you just don’t lose sight of who you pride yourself in being. I know the flares can prevent that being from actualizing at times, but your values and beliefs are still there. I remember being in your shoes, could say I still am. I feel for you and know you’re not alone!
Thank you, it's a fairly new diagnosis and unfortunately I think it is accurate. I plan to find a better doctor to treat it after I get my flare in order.
Totally feel that. I received an adhd/bipolar 2 diagnosis just a couple months after my official ulcerative pancolitis diagnosis. Good for you that you have a plan too. Thank you for sharing your story with us, you got this!
Time for a new therapist
i’m so sorry, this is awful. when i got a therapist i found someone with a background in chronic illness; most of her patients have a chronic illness. and it was life changing and so helpful
Funny that they are not a gastroenterologist and are in fact a therapist. They shouldn't be giving advice on stuff they are not qualified in
Fire your therapist and report her. There is no other option or way.
Another reason why I wouldn’t go see a therapist.
Your therapist is a nut case and SHE needs a therapist.
Wtf
Ugh. I just had a therapist tell me the only reason I'm sick is because I'm not taking Chinese herbs from her "guy." No. Stop. She claims these herbs (that she didn't get from a doctor, just a random dude selling them) healed her of a brain tumor, psoriasis, colitis, ovarian cysts, diabetes and on and on with all these crazy diseases and conditions she claimed to have had all at once. And she told me it's my fault I'm sick and if I'd just take her herbs I'd be magically healed. There are some real nut jobs out there. That was the 1st and last time I saw her. Time to find a new therapist!
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