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

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

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!

My name is Ken. I was diagnosed with Crohn's disease about 4 and 1/2 years ago. I've had to quit my job, get on disability, and have spent weeks of my life in and out of the hospital and doctor's appointments. I can't go anywhere during the first half of my day due to my bathroom trips. And flare up still happen although I'm on a regimen of medications that seem to be helping me a little bit. I've had to have one fistulotomy surgery at the beginning so far not another one yet. It definitely has changed my entire life I can't do anything I used to do. It's so isolating.

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

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.

@peaches8616 - just wanted to check in and see how you are doing? How are things going with your sleep and diarrhea?

@valarino - just wondering if you've seen any resolution with the diarrhea you were experiencing?

Well it's very strange. Went on an all day trip with hubby. Took two Imodium after I went in the morning. I had no diarrhea for 5 weeks everything was normal. Ate out no issues went on short day trips no problem. Went once a day sometimes even skipped a day. Now it's back again. Gastroenterologist doc said the Immodium was a crutch that reset my mind from worry. She feels I think and worry making it a reality.