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Jpouch, PSC, and pouchitis

My name is Megan and I am 24! I was diagnosed with ulcerative colitis when I was 13 after I was on blood thinners for a clot and noticed blood in the toilet. I tried several medications with no response to any of them. I became increasingly anemic and needed several blood transfusions. Finally, on my last medication Humira, my body decided it wanted to develop antibodies. So my next step was a steroid and antibiotics (which I’ve had horrible reactions to steroids) and I decided that I would rather have a total colectomy. When I was doing some routine check ins before surgery they noticed my liver numbers acting a little strange, and then I was diagnosed with primary sclerosing cholangitis. I did my entire surgery and was put on probiotics and some antibiotics to get everything going. Unfortunately the probiotics didn’t take for me and I developed Pouchitis which is similar to colitis for me except way less painful, but my bowel moments increased with it. I am currently on Flagyl 500mg 2x daily. It’s helped me tremendously, except during pms and my actual menstrual cycle. I also get blockages in the area that my ileostomy was at every now and then. I’ve been hospitalized twice for it and oh boy this last time took so much out of me. I had to get an NG tube that was just awful. Anyway, that’s some of my story. I’ve never met anyone who has ibd let alone colitis or jpouch. I’ve read a few articles from people who have a jpouch and every time I saw something that I experience I said “THATS NORMAL FOR YOU TOO!” Lol. Anyway if anyone wants to chat, ask questions, or exchange stories I am here! 😀

  1. Hey there . We know how valuable it can be to realize that there are others out there who actually understand what you have/are going through, we're glad that our community was able to offer you that comfort. We really appreciate you taking the time to share parts of your story here with us too. It sounds like you've been through a lot in regards to your UC, especially having been living with it since you were 13! We're glad that Flagyl is able to offer you some relief right now, and we hope that continues. Looking forward to hearing more from you and getting to know you more. Best, Ashley (Team Member)

    1. Hi .
      Thanks for sharing some of your story with us! I had a Jpouch for a while too, but I have a perm stoma now. I had chronic pouchitis so after years of trying different treatments and a couple more surgeries in between, it was removed.

      I also experienced blockages where my intestine had been connected too. It's something I don't think we are warned about often enough pre-surgery! You are definitely not alone <3

      - Sahara (team member)

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