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J - POUCH for Ulcerative Colitis

My GI doctor is recommending I get this surgery done soon. I am 32 years old, struggled with remission for over 8 years +. The only thing that works is Prednisone and I HATE being on it.

Has anyone here had this surgery done? If so, why did you need to get it done? What has been your experience with this? How was life with just a bag? How is exercising? Partner intimacy? Eating "normally"? Any complications? I have loads of questions.

  1. These are great questions and I am sure you will hear from our community soon. I haven't had surgery so I can't offer any insight but I just wanted to respond and let you know that you are being heard. I hope you are feeling okay today. Big hugs, Elizabeth (team member)

    1. I have a j-pouch! I was also 32 when I found out I needed it. I have occasional bouts of "pouchitis" but other than that I've been pretty good. I was actually feeling pretty good when I went in for a routine colonoscopy and they discovered low-grade dysplasia, which advanced to high-grade within three months. I think it was 2-3 months after that when I had my initial surgery, and my colon was on the tipping point of Stage 1, so even though I was angry about it at the time I'm glad it was caught and came out when it did! The bag took a little adjusting, of course, but thanks to a great ostomy nurse and support from the VNA I got used to it pretty quickly. I wound up making a lot of art about it and was almost sad when it was time for the second surgery to reverse it. I got really used to not having to poop 😀

      I do think I am prone to adhesions near where my stoma was, and am careful now about eating things like clams, mussels, seedy vegetables, etc. I've had a few obstructions, but only one that needed my doc to go in and fix in a quick outpatient procedure that was basically a colonoscopy. I also never eat spicy stuff because if it goes in hot it comes out hot but I never liked hot stuff anyway. I do occasionally drink carbonated stuff and use a straw, which I was advised against because it can create excess gas. I occasionally have bouts of pouchitis but find keeping my iron and vitamin D levels up helps. I can occasionally avoid treatment with Cipro by taking cortifoam instead, but sometimes I have to bite the antibiotic bullet. Others have claimed VSL-5, a potent and expensive probiotic, helps prevent pouchitis but I haven't personally benefit from probiotics.

      I've never been huge on exercising, but I try to walk and do yoga and I know other folks with j-pouches are very active. Just go slow with things like weight lifting or anything strenuous for a while - check in with your surgeon as you advance. As for intimacy, I do find as a woman there are certain positions that can be uncomfortable if my pouch is inflamed. Overall, though, it hasn't been a huge problem. I'd say my #1 annoyance is that it's way louder when I poop now. I definitely found it super helpful to talk to other folks who have had the surgery, so let me know if you have more Qs or want to connect privately - I am new here though, so not sure how it all works quite yet. 😀

      1. I had a J-pouch created in 2008, and connected in 2009. I have it excised in 2018 due to chronic pouchitis.
        The pouch itself also "malfunctioned" in 2014, and I had a temp stoma for while then - the intestine leading up to it had twisted.
        Much like everything IBD, there are no concrete answers. Some people have a J-pouch and live happily ever after. Some don't. The important thing to remember is that social media often presents a skewed view because people who are well are out living life. They are not online, in Facebook groups or on forums. The people online are often the ones that are struggling and looking for support.
        I can't tell you whether YOUR J-pouch will be fantastic. I can't tell you how long YOUR recovery will take, or how long you will be able to hold faeces for, or what food/drink you will be able to tolerate. We're all different.
        So, to answer your specific Qs from my personal experience.
        I had a J-pouch created a year after I had emergency surgery to remove my colon, after a super quick diagnosis of UC.
        My experience was a lot of pouchitis and cycling through treatments (Ciprofloxacin, Metronidazole, VSL#3, oral Pred, Pred enemas, Mesalazine enemas, suppositories, Azathioprine, Infliximab).
        Life with a bag for me is obviously preferable to life with UC and J-pouch.
        Exercising was fine when I was well, but difficult when I had Pouchitis/Cuffitis (the J-pouch version of Proctitis) because of the frequency, urgency, and because the inflammation made it very uncomfortable.
        When I had my J-pouch connected the second time, after the temp ileostomy, I had nighttime incontinence. This was embarrassing when sleeping next to my partner. I also found it painful to have sex when my pouch had inflammation in it, and the accompanying fatigue and mental health decline didn't help.
        I didn't really have issues with any particular food, but my J-pouch didn't like any type of alcohol. That would contribute to Pouchitis flare. Some people have discomfort when passing things such as nuts and popcorn.
        Sorry my response is all doom and gloom! As I said, there are lots of people living great lives with a J-pouch. They're just less available online!
        ~ Sahara (team member)

        1. Good information from both sides. I had surgery in November and have a few more months living with a ileostomy to decide wether to keep it or do a J pouch at the next surgery. So thank you guys for this! I am thinking I am going to keep the ileostomy.

          1. you're welcome! It's good to be able to hear from others before heading into surgery. I wish I'd had the opportunity to! It was 2007 when I had my J-pouch, and all I had was a booklet given to me by the surgeon. I didn't have the internet at home. No social media sites and communities to chat to. I feel like I might have made a different decision myself had I had the opportunities available these days!
            - Sahara (team member)

          2. oh no! It was 2007 when I had my colon removed, and 2008 when I had my J-pouch built!

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