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I wanted to just thank everyone on this forum for all of the knowledge and support shared. This forum has been such a wonderful resource for me as I navigated my surgeries. I was diagnosed with moderate UC in August 2019, had my first flare up in April 2020 and never recovered. The regular meds stopped working so I was put on biologics which did nothing. Prior to UC I was a 23 year old male, 6'0 and 180lbs. After UC, and right before the big flare, I was 160lbs. I lost so much weight throughout the flare and had a bloodclot happen in the middle of it (talk about a kick in the pants). I was too fragile to go into surgery, as I weighed a mere 110lbs, I was placed on TPN and put on a liquid diet for a little over a month. I was so tired and after working, I would fall asleep on the couch almost immediately. I had no spirit and wondered how this could happen to someone in the "prime" of their life. The only thing getting me by was the support of my parents, siblings, and a few close friends who knew of the situation.

I had my first of three surgeries for my ostomy in May of 2020 and literally the day after I felt a lot better. As days progressed they quickly ramped up my diet and by the time I was released (5 days) I was feeling like a million bucks. My appetite was literally ravenous, I was eating everything in sight from tacos to buffalo chicken pizza - and never experienced a problem besides maybe having to empty the bag more often (it was worth it). I ended up getting to 153lbs in about 3 months. I was back working my desk job within a few days of being released and did well. 3 months later I had the second surgery which followed the same recovery pattern as the first, and then in January of 2021 I had my reversal. Now, this recovery is different than the others. I don't have much of an appetite and have to remind myself to eat, especially when I'm busy and stressed with work. I have good days and I have bad days and sometimes wonder if I made the right choice. I'm looking forward to things improving with time and try to remind myself that my pouch is still relatively new and has to learn how to adapt. I get up often to go to the bathroom at night, but don't go very much during the day - not a terrible tradeoff, but I hope this gets better. I'm learning which foods work best for me and which ones I have to consider worthwhile (8/10 times I'll say yes and deal with the minor consequences - after living in such bad shape for a few months, I like to be able to treat myself). After over a year of not seeing a lot of friends, I saw them a few weekends back and all of us rejoiced, it got a little emotional at some points, but that's how you know people really care about your wellbeing. I'm looking forward to being a stronger person and I'm ready to take life by the horns.

We've all been through this rough journey and it's only made us stronger. This community is extremely supportive and I find all of the advice useful. While I may not post much, I'll be around.

Best wishes,


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Thanks for sharing your story. One thing I do to shift pouch activity to non-sleeping hours is take Lomotil at bedtime (some folks prefer Imodium), but typically not during the day. Your pouch is still young, of course, as is your experience with it, but over time you will likely get to the point where a non-urgent sensation at night seems less threatening, and thus less likely to wake you up. When you do wake up, take a moment to consider whether you really need to go to the bathroom (yes, I know that can be risky) vs. just having the unfamiliar sensation of an incompletely full pouch. A small fatty meal at bedtime (e.g. a spoonful of peanut butter) can also slow down the gut a bit. Your appetite may have calmed down partly because you are no longer starving.

Food choices seem like an obvious thing to focus on, but for lots of folks it doesn’t make much of a difference. I’m not suggesting that you ignore signs of a food sensitivity, but rather that you consider the possibility that you might not have any.

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