Inflammatory bowel disease (IBD) support group: Let’s connect

Posted by Lisa Lucier, Moderator @lisalucier, Aug 27, 2025

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?

Interested in more discussions like this? Go to the Inflammatory Bowel Disease (IBD) Support Group.

Lisa Lucier, Moderator | @lisalucier | Aug 12 9:06am

In reply to @gingermeggs "I have chronic radiation Proctitis since 2015 with 39 days under radiation therapy , it’s much..." + (show)

@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?

gingermeggs | @gingermeggs | Aug 12 10:20am

In reply to @lisalucier "@gingermeggs - here's a Mayo Clinic Connect discussion on chronic radiation proctitis that may be useful:..." + (show)

@lisalucier prostate cancer

janspons | @janspons | Aug 20 11:21am

I 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.