Any IBD sufferers on here?

[nbelcik]

Not sure if this is the right part of the forum, but I was wondering if there are any other people on here who suffer from Crohn's disease or ulcerative colitis. I was diagnosed with UC a year and a half ago during the end of my senior year of high school and finally decided to get surgery over winter break after failing Remicade, Humira, and Vedolizumab and being unable to go off steroids without getting sick. I now have a temporary ileostomy and plan on getting a J pouch when school ends in June. Anyone else have any experience with IBD?


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[BGD75]

I don't have it myself, but my (then 26 yo) brother has been diagnosed with Crohn's about 6 years ago. We didn't know he had it until he ended up in the emergency with excruciating stomack pain. he had loads of infection and part of his small intestine was removed. He didn't do well with pills ....Humira has improved his condition a great deal. After taking it 1 every 2 weeks for about 2 years, he needs it only about once every 6 weeks now (just to maintain the good bacteria levels and prevent any further inflammation). He is however, stricktly following what he can / can not eat. Hopefully you were given the list of foods that were to be avoided...

 

[nbelcik]

I tried adjusting my diet but it never worked. Pot helped a lot for pain relief and for managing symptoms, so I used a lot of edibles before I would go to sleep during the summer, but as an RA during the school year I couldn't risk getting fired for using drugs. What's nice is that with UC, getting my colon removed means I'm cured, since unlike Crohn's, the disease only affects the large intestine.


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[DaveC]

I don't have it but I have a cousin who has had Crohn's ever since we were kids (20+ years). He and his family lived in a town about an hour's drive away and had to repeatedly travel back and forth for hospital visits, etc as the hospital in his small town could not effectively treat him and he had to travel to the children's hospital in Halifax for most of his treatment or whenever he was having troubles. I remember him having at least half a dozen different hospital stays when I was a kid of a week or more, those are only the ones that I can remember physically being there to visit him and I know there were definitely more stays. He was in a lot of pain but as far as I'm aware he is able to manage it a lot better now that he is older. He lives on the other side of the country now so the only times I've seen him since we were teenagers has been at family funerals and I haven't thought to ask him how he's been doing.

Glad to hear that you may have some relief ahead of you. Seeing what Blake has been through, it's not something I would wish upon anybody. Best of luck.

 

[nbelcik]

Before I got the surgery, I had to have 4 separate hospital visits over the course of a year and a half. My disease wasn't that bad when I was diagnosed but the summer before my freshman year of college it got really bad and I had to go to the hospital 3 times. Then about a year later (this September) I had to go to the hospital again for a week. I still never fully recovered after being put on Humira and Vedolizumab, so I decided to get surgery.


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