1. < Inflammatory Bowel Disease (IBD)
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Inflammatory bowel disease (IBD) support group: Let’s connect

Posted by Lisa Lucier, Moderator @lisalucier, Aug 27 10:18am

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.

Profile picture for Lisa Lucier, Moderator
Moderator
Lisa Lucier, Moderator | @lisalucier | Nov 4 8:20am
In reply to @fibrowoman "I’m grateful to see an IBS section. I am 76 years old and have had IBS..." + (show)
Profile picture for fibrowoman @fibrowoman

I’m grateful to see an IBS section. I am 76 years old and have had IBS for three years. It started when I was diagnosed with fibromyalgia and I understand that sometimes the diseases go hand-in-hand. I’m not have any luck with the gastroenterologist because she gave me Linzess when I was suffering from over two weeks of constipation. right after taking it I started suffering from diarrhea for a few days. Of course I immediately stopped the lenses and now I hesitate to go back to the gastroenterologist. I welcome any suggestions

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Hi @fibrowoman - welcome to this group. If you have IBS, rather than IBD, you may find these discussions even more attuned to your situation:

- IBS Challenges https://connect.mayoclinic.org/discussion/ibs-1/

- IBS: How to get rid of or ease the symptoms? https://connect.mayoclinic.org/discussion/ibs-2f2508/

It's super common on Mayo Clinic Connect that members cross up IBS and IBD, cause they are both digestive issues and both sound so similar. This article and video are helpful: What is the difference between IBD and IBS? https://mcpress.mayoclinic.org/healthygut/what-is-the-difference-between-ibd-and-ibs/

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mustlovedogs89 | @mustlovedogs89 | Nov 9 10:17pm
In reply to @gmaof3 "I’ve had Crohn’s since 1985. I had a resection then with ileocecal valve removal. It’s been..." + (show)
Profile picture for gmaof3 @gmaof3

I’ve had Crohn’s since 1985. I had a resection then with ileocecal valve removal. It’s been a wild ride lately. Through my colonoscopy last year, I found out I had an active flare in my small intestine. No symptoms though. There was evidence of scarring from another unknown flare. No fevers or bleeding. I personally think the scarring was from C-Diff that stuck around for close to a year. It was evil and the worst part happened in October when the hurricane came through and knocked out our power for close to a week.
For my Crohn’s flare, I started on Skyrizi in February and three days later, C-Diff was back or maybe it never left.
I finished treatment for that in May while continuing my monthly infusions of Skyrizi. I’m getting ready to take my third maintenance dose of Skrizi. I’m praying that it helps me feel better.

This is just a snippet of my story. If you hung in to the end, you did good!

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@gmaof3

I've had U.C. since 2020, and it has been a rough five years, but I am taking it strides. I am going to try a new infusion medication this month hopefully can better treat my constant flare-ups. I always look forward to infusion appointments, I have a designated snuggly blanket that I always bring and my backpack filled with yummy snacks and activities to keep me busy.

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peaches8616 | @peaches8616 | Nov 10 6:31am

It took my doctor's years to finally diagnose me with IBS. Ive been dealing with these symptoms for over 10 years. Lately they are getting worse. Imodium use to work, now I have to take 2 pills per day just to get through the day without urgent diarrhea flare ups. I don't sleep well and fruits and vegetables are triggers for my flare ups. I was told that I have a lot of pockets in my intestines. Wondering if surgery can help. Help

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