Does anybody have Crohn's disease?

Who told you that? What tests have you had?

IBD for 39 years. UC from 1987-1996, jpouch - large colon removed in 1996, Crohns from 2002-present. Horribly sick the first 9 years, since jpouch surgery I have had no hospital stays, and only mild or remission with meds. I am currently transitioning to Tremfya while still on my oral meds - azathioprine, & a cipro/flagyl rotation, I also take loperamide, metamucil powder, wafers or capsules to thicken up bm's.

Hi @janspons - how is your medication routine including the guselkumab (Tremfaya) going for you?

I have Crohn’s Disease along with really bad case of diverticulosis. Right now I’m off of biologics due to having too much illness—Influenza A, bibasilar pneumonia, and pneumonia in the right base— within about 18 months. Entyvio worked well for about 5 years. Then I went on Stelara which almost did me in. My main complaints now are pain in lower left quadrant almost everyday, chronic constipation, and chronic fatigue. My GI doctor put me on Trulance, but its action is unpredictable. I really don’t know where to turn to next. My GI doctor doesn’t seem to be impressed at all, but I know I felt great when I was on Entyvio. It’s very frustrating. I would love to travel again.

@lisalucier Thanks for asking, I really don't notice much difference between the Tremfya and my previous azathioprine & antibiotics, but I had been on that regimen for probably 15+ years. My Dr thought maybe this would help heal any inflammation that may contribute to my nightly fecal incontinence, but I am still having issues nightly. I go back to Mayo in April for another pouch scope, possible CT scan & PFT. I had 3 procedures in Aug and they found my sphincter muscles are weak and there is atrophy in the cuff area, not sure if it can be saved. I am keeping my fingers crossed that something can be done other than returning to a bag. It is what it is, my pouch is almost 30 years old, I just need to weigh the options of either.

Hi, @skypledger - You'd mentioned before in talking about your Crohn's and diverticulosis that you would love to travel again. That sounds really nice. Are you envisioning a time right now where your body would be up to that?

Hi, @janspons - sorry to hear you are still having fecal incontinence issues nightly. I had that happen twice during my time taking semaglutide with terrible diarrhea that got so bad it ended up in my bed. I found this pretty humiliating and hard to deal with psychologically. I finally had to get some bed pads so I didn't have terrible anxiety about it happening again when I fell asleep.

How are you doing psychologically with the fecal incontinence continuing to bother you?

@lisalucier it is very frustrating & depressing, I've had this going on almost nightly for over 2 years now. I wear pantiliners everyday "just in case". Usually some sort of incontinence underwear at night. I have anywhere from 1 - 4 accidents per night, usually not a lot but any is too many. I am kinda starting to weigh my options, continue this way or maybe go the ileostomy route. They want me to try pelvic floor therapy first & a CT scan i think was also ordered.