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Inflammatory bowel disease (IBD) support group: Let’s connect
Welcome to the IBD support group on Mayo Clinic Connect.
Do you or a family member, friend or loved one have an inflammatory bowel disease, such as ulcerative colitis, Crohn’s disease, microscopic colitis, lymphocytic colitis or collagenous colitis? Or have you or they experienced a complication of IBD, such as pouchitis, bowel obstruction, fistula, anal fissure or an abscess? If so, this is a great place to talk to others with similar experiences. It’s a welcoming space to learn from each other and share challenges, coping strategies, setbacks and what helps. This is also a place to get support and input from other patients as you go through the diagnostic process for these conditions.
Please take these steps to participate in the group:
- Follow the group.
- Browse the topics.
- Use the group search to find answers to your questions.
- Introduce yourself.
Let's chat. Please start by introducing yourself. What is your experience, or your loved one’s, living with inflammatory bowel disease or possible IBD symptoms? You might share things such as: What type of disease do you have? How long has it been since diagnosis? What symptoms have you experienced? How is the disease managed?
Do you have a question, tip or story to share?
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HugInterested in more discussions like this? Go to the Inflammatory Bowel Disease (IBD) Support Group.
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@gingermeggs - here's a Mayo Clinic Connect discussion on chronic radiation proctitis that may be useful:
- Chronic radiation proctitis: What specialty treats this? https://connect.mayoclinic.org/discussion/chronic-radiation-proctitis/
It's in the Prostate Cancer support group. What type of cancer did you have?
@lisalucier prostate cancer
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1 ReactionI have a couple questions, just looking for anyone with similar situations. First, I have been on Tremfya for about a year now with injections every 28 days. I have noticed more daily hair loss after showering/washing my hair than I did before I started on this med, I also seem to get random small red pimple-like bumps, sometimes they itch sometimes they don't. I mentioned to my Derm and was kind of brushed off as an age thing.
Second, I went in for my annual with my PCP and my labs came back with an elevated bilirubin, it was above normal last year and had raised a bit more again this year. She had me do an ultrasound which showed some gallstones so I also met with a surgeon to see if it was something than needed to be taken care of or just to be aware of it (I don't have any symptoms), anyway she said she thought that they were possibly more related to having Crohns & meds that I have been on than a liver issue. Has anyone else bee informed of this? She said to mention to my GI the next time I meet with her. Thanks in advance for any comments.
I have a question for anyone living with UC. I started infusions of entyvio in April of 2026. My symptoms were very bad, I had to quit a job because of diarrhea and urgency and this went on for 3 years before the diagnosis. Since starting the infusions, ( did the protocol, 0,2,4 weeks) had one more infusion July and have now switched to the pen. I've noticed at each upcoming next dose I have started feeling better before the dose and then feel worse again after the dose. The 3-4 days before this my latest dose (Monday) I was feeling like I might be on the road to remission. No blood in my stool, a lot less gas, little cramping, and little urgency. Overnight that all changed, woke at 4am to cramping, gas, blood and mucus in my stool and this has been my day, with 3 trips to the bathroom unsuccessful. Has anyone else experienced these issues after getting infusions or with the injectable?
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1 ReactionI have been battling IBD since I turned 50, and I will be 53 this December. I was hospitalized for Colotis in June 2024 after having severe bowel issues (blood and undigested food in my stool). Initially diagnosed with neuroendocrine cancer through a DAT scan, but later the inflammation was diagnosed as Crohn’s disease. Budesonide helped me function until I was put on Humira and then a bio similar, which put me into remission until I built antibodies to it. I went 5 months on Imuran which didn’t work (but had to be used to comply with insurance) until I was eventually prescribed Yesintek. My last colonoscopy (this week) indicated that I have inactive Ulcerative Colitis and I am now in remission! Now I’m at a point where I can prove my worth to my employer (they have been patient and somewhat understanding) and hopefully live a normal life until I am able to retire in 5 years! I’m enjoying that I’m in REMISSION!
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4 Reactions@1000riverrat Whoop!! Whoop!!
I've been on Humira for 10 years and it's the healthiest I've been since I was diagnosed with IBD 1981.
Congratulations!
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3 ReactionsI was diagnosed with EPI in early 2022 after having digestive issues for years, including IBS in my 20s that went away (mostly) by the time I was 30, with occasional random flare-ups.
SIBO developed, seemingly as a result of my pancreatic issues. I am mostly OK, but I juggle constipation, dehydration, and nausea with overflow urgency issues at times. My energy gets impacted a great deal by this, which is the hardest part for me at this point.
My bowel problems started with constipation in August 2025, followed by unusual stools in September. My primary physician ordered a stool calprotectin test, which showed calprotectin at 1800. He referred me to an inflammatory bowel specialist, who diagnosed my condition as inflammatory bowel disease. In November, after taking Mesalamine tablets, I became extremely ill for six days, so I could no longer take that drug. In January 2026 I began receiving infusions of Entyvio. By then the diagnosis was ulcerative colitis. I have been helped by drinking Kombucha, 8 oz. per day. @naomi666.
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1 ReactionHi, @naomi666 - welcome to Mayo Clinic Connect. Thanks for sharing some of your experience with constipation, IBD and finally a diagnosis of ulcerative colitis.
You mentioned that drinking fermented tea has helped you. Will you share more about how it's helped you?
Drinking fermented tea, Kombucha, has allowed me to avoid symptoms of discomfort I had previously, such as urgency and a general feeling of needing to go but could not. I realized that I had probably contracted colitis from taking antibiotics for a dental problem in May 2025, and I started looking for fermented foods that could replace the digestive elements that I had lost. Kombucha turned out to be better than yoghurt.