44 year old male just finishing up my loading dose of 45mg . I know it says acne as a side effect but was hoping to swerved that one has many other people had this problem. And what did you do this is my third biologic now . Don’t want to have to stop it so soon seems to be working ok as far as my crohns is concerned
I was diagnosed with UC nearly 12 years ago after serious flares and eventually getting a colonoscopy in my mid 20s. I switched health insurance which forced me to see a new gi doc who wanted to get a ct scan after mentioning that I have pain after eating and acid reflux. My ct scan shows matted small bowel loops and I assume that’s where the pain is coming from along with the past issues of nausea, vomiting, severe pain with larger meals, etc. Has anyone with UC experienced matted bowel loops because that seems more related to being diagnosed with Crohn’s. I’ve always wondered if it’s really Crohn’s given my other symptoms but previous doctors didn’t really care because it was basically the same treatment with Humira at the time. I feel like I caused irreparable damage cause I wasn’t treating that area since I was only using mesalamine suppositories for the other problem areas. My dad’s sister had Crohn’s which always made me think it was weird for me to have UC, not Crohn’s, but that’s another thing. Anyone’s diagnosis change after a CT scan?
I am a 49-year-old woman. I’ve likely had Crohn’s since I was a child but I was diagnosed in my 20s. I do know heat is involved, but I have tried cold and cool showers and it still happens. When I don’t wash my hair, it’s not as bad, but after showering, I am exhausted for about an hour. I just need to go sit or lie down. Does anyone else have this issue? It is markedly worse if the shower is hot and or if I wash my hair. It is worse in the summer and much worse if I actually use a blow dryer to dry my hair, even if it’s on the cool setting. Obviously this has something to do with the heat, and I do keep the heat to a minimum, but what is this?
Tive uma crise péssima no final de 2019 e recebi o diagnóstico de Crohn no início de 2021. Acho que o peso dos sintomas ter coincidido com o terror da pandemia me tirou um pouco do planeta.
Acontece que só no final do ano passado, depois de tantos anos tentando restabelecer minha saúde entre cirurgias, exames, consultas e trabalho em escala 6x1, eu percebi o quanto sem ninguém eu estou.
Deixei de me relacionar com as pessoas por medo e vergonha. Digo me relacionar de forma não superficial mesmo. Acho que passei a estipular um prazo para começar a viver quando melhorasse 100%, mas o problema é que esse cem por cento nunca chega.
Há seis anos convivo com esse diagnóstico de forma silenciosa. O Crohn também costuma ser uma doença silenciosa quando os sintomas não estão tão evidentes. As pessoas olham para você e, como não enxergam o que está acontecendo, acham que está tudo bem.
Atualmente estou 10kg mais magra do que há seis meses, o que tem chamado a atenção das pessoas com quem convivo. Apesar de explicar que tenho uma doença autoimune e falar sobre o Crohn, muita gente não entende. Como eu pareço "funcional", acabam achando que, se eu não saio ou não faço alguma coisa, é por preguiça ou falta de vontade.
Mesmo com a doença ativa, continuo trabalhando, estudando e tentando viver normalmente. Não deixo o Crohn definir quem eu sou, mas quem convive com essa doença sabe o quanto é difícil tentar se manter funcional enquanto lida com um cansaço enorme, dores e todas as outras dificuldades que ela traz.
No meio disso tudo, também venho tentando me recuperar de um envolvimento que tive depois de passar anos sozinha.
Nos próximos meses preciso fazer tomografia, ressonância e confesso que estou com medo dos resultados.
Ainda assim, continuo tentando. Tem dias bons, tem dias ruins, mas eu continuo.
Esse post é mais um desabafo.
Também estou aberta a conhecer pessoas que tenham o mesmo diagnóstico, que estejam passando pelos mesmos dilemas ou que simplesmente queiram conversar sobre qualquer coisa.
Hi guy, had a laparoscopy 6 days ago, and confirmed endo on pouch of Douglas, excised and ablated. Don’t have more details yet. I was diagnosed with Crohn’s disease last year, yet I wonder (consider Crohn’s symptoms), of anyone’s experiences with both? Or if endo can cause Crohn’s like symptoms.
I was diagnosed with Crohn’s about 2-3 years ago. Numerous abscesses, complex fistulas, surgeries and I have 5 draining apparently permanent setons. Until recently I’d been on infliximab. In the past month I’ve been getting increasing tingling and sort of a burning pain inside my feet particularly the padding through my toes. I’m not sure how to describe it, but my toes often feels sort of like they’re not attached or something. It’s generally all equal in both feet and toes. Sometimes a bit of tingling in my hands, but not nearly as much as my feet. I’ve also been having a lot of swelling of my feet sometimes up through my calfs. In the past couple weeks, I’ve noticed skin peeling on the inside of my hands. It’s not painful and it’s not a ton but that’s never happened before. My feet are swollen some before but it’s happening on much more regular basis and the tingling and pain in my feet only became really noticeable about a month ago and now it’s pretty constant.
I was also laid about a month ago. My last infusion was probably two months ago. I was already drowning in medical debt and now have absolutely no medical Insurance.
I’m just trying to ignore all of these symptoms until I have some sort of health insurance. I’ve never had all of these symptoms before and so I’ve never spoken to my doctor about them. I’m not rolling around in pain so it doesn’t feel particularly emergent but I really don’t know.
I would really appreciate any experience, advice, and information you’re willing to share.
For over 11 years, my son has battled Crohn's disease—a constant, relentless struggle. I'm working to create a custom license plate for the Crohn's & Colitis Foundation here in Colorado, both to raise awareness and to help fund research and support for those fighting these invisible but devastating diseases.
More than 3.1 million Americans live with Crohn's and ulcerative colitis. A specialty plate could do real work: reminding people these conditions exist, generating funds for medical research and patient support, and creating a symbol of hope for those in the thick of it. Other states have done this successfully. We can too.
I started a petition asking the Colorado Department of Revenue to approve this plate. If this resonates with you—especially if you or someone close to you knows what this fight looks like—please consider signing and sharing it. What would you want someone to do if this was your family?
Hi!
Back ground- I have celiac disease and the past year I've been having stomach problems and thinking they were related to celiac disease but the past 6 months have gotten worse and made me realize it could be something else! Since I already have one autoimmune disease they told me it is possible I could have another since they normally pair together. This all kicked into action right around the time I had second child.
I went to my gastroenterologist, and I am scheduled for an endoscopy for the celiac disease and a colonoscopy to check for and take biopsies for possible crohns. My question is- how do you make sure you have the best prep? My colonoscopy is in August, so I'm wondering if I should start with a low residue diet now? My doctor only gave instructions for the day before which is basic prep instructions. Just wanting advice from more seasoned individuals 🤣
Thanks for reading my book! Lol
Hi, I (35F) am both a migraine patient (mestrual, "regular" with aura, and vestibular) and a very newly diagnosed Crohnie. (as in, just only dx'd April 2026)
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I'm looking for anybody else in similar circumstances, advice on how you are dealing with having both, etc. How to tell if the nausea is from one or the other or both? If the meds to deal with migraine help with or counter Crohn's and/or vice versa? Anything I should know or bring up with my gastroenterologist when I meet with them next month? (Info: I was dx'd via a colonoscopy by a gen surgeon, who referred me to the GI doc for care going forward)
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Thank you so much to everybody who took the time to read and respond. Have a great day 🌸
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