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

Welcome to the new support group dedicated to inflammatory bowel disease. To get the new IBD support group started, I'm tagging @casscond @patsyd @npleyland @catherine1290 @jer22 @jvitanza1 @sassgardian21 @genabarrick @tirelands @suetex @irisjolie @wrmhrtd714 @alesya @peni @catherine1290 @apilizota @champ100 @1000riverrat @sophlem @lucismith @ihm @gshlager @jcarndt @burningbelly @dg0797 @guyb @nannoaz @szelisk @gmaof3 @graceym1 @msmelnik @supercalifragilistic @artist01 @janspons @kayabbott @rnpalarino1 @rfaz1989 @denisestlouie @doorgirl624 @npleyland @hammock117 @jmac84 @astaingegerdm @thankful @elained @dallatu59 @mountainoceangirl @tazo @pamyrose @camprunamuck @jerr51498 @sharleneh @jrayk @maslowth @reno10 @macombs, since you've all mentioned an inflammatory bowel disease or complication before in Connect discussions.

How are you or your loved one doing with your IBD? If you or someone you know has a diagnosed IBD, what treatments have you or they had? Do you have any suggestions for new members or pitfalls you'd encourage them to watch out for?

Just diagnosed with colitis

Referred for colonoscopy

Welcome to Mayo Clinic Connect, @bettysmmktsm.

Confirming you mean ulcerative colitis? If so, here is some information you may find useful:

- Ulcerative colitis https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326

How are you feeling about this diagnosis and your upcoming colonoscopy, bettysmmktsm?

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!

Still don't know if I have it, or Crohn's, they said "more investigation required". Still having a variety of issues now every day. However, I do have been diagnosed malrotated intestines, so maybe that's the issue, or maybe it's both. Not sure if I'll be of any use to this group.

Critical to IBDs and IBSs is managing stress; I try to do that by meditating, exercising, hobbies, getting enough sleep/naps, occasionally screaming into pillows, and finding fun things to look forward to. Also critical is avoiding all NSAIDs (aspirin, etc) and checking to make sure you are not sensitive to meds or foods. Keeping a food journal is recommended. I was diagnosed with collagenous colitis (cc) 8 years ago (celiac for 16 years). The initial comment on this string has microscopic, collagenous, and lymphocytic as separate autoimmune IBDs, they are not. Microscopic colitis is named such because it is only diagnosed through microscopic examination of biopsy samples; earlier stage evidences as lymphocytic while the later collagenous stage has a thickened layer of collagen that slows absorption of water. When I get a flare my colon turns into a water balloon and I have several minutes to find a bathroom. My cc was under control for 7 years, until I got covid followed 8 mo later by (evil) norovirus. The norovirus damaged my kidneys and caused cc flares, so now I use the usual controls but also am on a maintenance dose of 3 mg Budesonide/day; it is a designer corticosteroid that has minimal side effects and mostly calms down the colon.

For some reason Dr cannot tell me what is wrong. I have diarrhea numerous times on a daily basis. Cant go anywhere that is far from a restroom. I've had numerous tests, stool, breath tests, bloodwork, colonoscopy and endoscopy. Tried metameucil and pro and prebiotics. My calprotectin was slightly elevated but doc didn't think that was causing issue. I've tried non dairy diet, bland diet nothing changed. Been having this issue since Oct 2024. Doc now wants me to try Colestipol which was $165 not sustainable for me as I'm retired on a fixed income also the side effects of that are kind of scary. Right now if I want to go on a day trip with husband I take an Imodium in the morning which helps but doc did say this should not be a long term answer.

@valarino - that sounds frustrating that the doctor cannot tell you what is wrong and you have diarrhea numerous times on a daily basis. Sounds challenging to manage, especially with going out of the house.

What do you see as the diagnostic possibilities for yourself from any research you've done? Are you wondering if you might have an inflammatory bowel disease such as Crohn's disease or ulcerative colitis?

Dr said she is leaning toward irritable bowel or crohn's but I dont think Colestipol is used for that. Not sure though. I am scheduled to see her again November 14th. I am following his discussion to see if anyone else has the same problem and maybe get some ideas what to ask Doc at next visit.