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.

aldiaz | @aldiaz | Feb 25 12:57pm

Where can I find a good Doctor for my ibs I live here in
Mesa, Az

Lisa Lucier, Moderator | @lisalucier | Feb 25 1:35pm

In reply to @aldiaz "Where can I find a good Doctor for my ibs I live here in Mesa, Az" + (show)

@aldiaz - if you would be interested in requesting an appointment at Mayo Clinic in Arizona http://mayocl.in/1mtmR63, you might want to consider it.

schloss64 | @schloss64 | Apr 14 7:48am

In reply to @lisalucier "Welcome to the new support group dedicated to inflammatory bowel disease. To get the new IBD..." + (show)

@lisalucier
Recently diagnosed even though I’ve had this problem for years. Now, I’m taking Linzess 145. So far it’s doing nothing. I’m also getting conflicting information from my primary care provider and nurse practitioners at the gastrointestinal clinic.

jeannie85 | @jeannie85 | Apr 16 12:54pm

In reply to @valarino "For some reason Dr cannot tell me what is wrong. I have diarrhea numerous times on..." + (show)

@valarino I went through that for years. I didn't dare to go out of the house because I couldn't control my bowels. I had violent cramping that made me feel nauseous and that I might pass out. I tried Metamucil. I went to a gastro dr., he ran some tests, said there was no blockage and I should take gas pills and don't take Metamucil. Shortly after I ended up in the hospital with a small bowel obstruction. Two years later I was back with another obstruction. The surgeon came to visit me in the hospital and told me the next time I came in I would be facing surgery. The nurses in the hospital talked to me about a lo fiber diet. I followed it to the letter. losing weight all the while. ( not a bad thing). Went to a different Gastro dr. He told me to take Miralax every day explained that diarrhea is part of constipation. He said it doesn't matter what type of diet I am on It will come back. I DON'T WANT SURGERY. I stick to my lo fiber diet, take 1 teaspoon of Miralax every single night and I have been living the most normal life I have lived in years. Yes I am always waiting for the next shoe to fall and notice that any stress sets me off again but only for a day. One day at a time.

suetex | @suetex | Apr 18 4:13pm

I will suggest to anyone with diarrhea to take a look at the internet info about Low Dose Naltrexone. I take 2 mg and have for 8 years.

jeannie85 | @jeannie85 | 6 days ago

In reply to @schloss64 "@lisalucier Recently diagnosed even though I’ve had this problem for years. Now, I’m taking Linzess 145...." + (show)

@schloss64 I think that IBS is one of those things that effects everybody differently and doctors have no pat answer for. I have had to learn through trial and error what works best for me and stick with it to the letter. Stress is definitely a factor so I have to control that first. Bottom line...we all have to be our own advocate. If you have more than one issue to deal with, it becomes a constant juggling act.

h2m | @h2m | 6 days ago

I have had IBS-D for a # of years and gastrologists continue to read off the same "script" with high fiber diet, etc. , so I have stopped going. Agree stress is one factor which is, frankly, hard to control. For me, caffeine is a trigger if taken in the afternoon. Has anyone tried being hypnotized?

suetex | @suetex | 6 days ago

My neurologist said that Sjogren's Disease has the same affect on the GI tract as IBS. Which is of course, an autoimmune disease. Just a thought to put in the mix.