I felt like I needed a place to vent and share some frustration, so thank you for giving me the space on this forum! Definitely TLDR...
One year ago today I was in the hospital, recovering from step 3 of my J Pouch procedure and looking ahead to what I hoped would be a brighter, less chronically poopy and fatigued future. My first surgery had gone perfectly, in and out of the hospital in a few days, but my second surgery resulted in an ileus, NG tube, and ten days of groggy hell, and my third surgery hadn't gone great either. In retrospect, we rushed it a bit because the placement of my stoma was causing me so much skin burn and pain, but I just wanted it to be gone. After five days in the hospital, I was sore, tired, and unsure of what was next, but within a few days I would be home and ready to regain my life. We had a one-year old, I was working full-time and finishing graduate school, and I felt like I knew I could conquer this obstacle -- heck, what was the alternative?
Prior to my surgery, I suffered with ulcerative colitis (initially diagnosed as Crohn's, then indeterminative colitis, and finally ulcerative colitis) for 8 years, from 2013-2020. Although I never suffered weight loss or countless surgeries like many of you, at my peak I would have 20-25 bloody bowel movements/day, with no control and almost no ability to leave the house. If I had a nickel for every alleyway, bush, or private restroom I snuck into, I'd at least be able to afford a McDonald's Happy Meal, if not every item on the dollar menu. I tried every biologic on the book - sometimes I'd get a brief response, but I never really worked my way into remission. I even tried doing a temporary ostomy in 2014/2015 to give my bowels time to rest and heal before going on Vedoluzimab, but it ended up being the same story as the other biologics. At least, I told myself, I'd know what an ostomy would feel like if I ever needed to have one for the rest of my life. The only thing that really helped during those years was prednisone, but I was on steroids so long that at age 25 I had to have cataract surgery -- bye-bye perfect vison, hello cat's eye.
My 20's weren't easy, but they were also some of the happiest times of my life. I met my wife; worked a demanding and fulfilling job; developed some lifelong friendships; pursued my passions; and I entered my 30's about to welcome our first child into the family.
About that time, with the onset of the pandemic and my son entering the world, my ulcerative colitis stopped responding to steroids, the one thing that had always managed to trigger some kind of response. After much consultation and soul-searching, I decided to go for the J-Pouch. I spoke with a number of folks who had J-pouches, including some people on this forum, and heard stories of success and stories of long-term challenges. My surgeon thought I would be a success story, and I hoped so.
So, here we are, one year out, and I don't feel particularly successful. Last night, like most nights in the last month, I woke up 2-3 times to poop, struggling to sleep after. I'm tired all the time. I try to go to bed early, but it takes me at least an hour to finish pooping in the evening. I poop at least 10+ times/day. Most days I have to use ilex after every bowel movement because of the burning. There are times when the searing pain of raw skin and dripping stool brings tears to my eyes. My surgeon and GI doc did a scope two weeks ago to see if there was anything that looked wrong, but nothing was off. No pouchitis, no issues. I guess that's good?
They recommended that I start pelvic floor physical therapy, which I will, but I feel so deflated. I thought that one year in, I would be doing better than this. I hoped for it, prayed for it. We're expecting our second child in a few months and I just wish I were healthier for her. No one needs a sick, frustrated Dad who can't stop pooping.
I'm open to any advice, I just don't know what to do anymore. Thanks for reading, much love to you all.