Hello all. First thanks to everyone on here who participate and are a source of support. I am 48 years, male, 6’4” 185. Diagnosed with UC in 1997. Tried all kinds of combinations of prednisone and asacol and/or 6MP or Humira or methotrexate, you get the drift. I never could really stop prednisone for any length of time and was pretty much on it for 13+ years. I had a 2-step J pouch procedure, starting with 1st surgery Dec 2013. There were immediate complications with emptying via the ostomy. Did go home pretty quick, but kept having trouble emptying and ended up nauseated and vomiting and back to the hospital. Around 30 days there total (had an NG tube at times) before we finally arrived at the solution of leaving a rubber catheter tube inserted in the stoma, so that whatever kink was just inside the stoma would stay open, and that actually did work for many months until I was finally ready for the step 2 surgery. Step 2 in 2014 went fine and I recovered well. I had pretty good luck emptying the J-pouch and feeling empty. Part of my success did involve manually pressing on my belly when needed to expel gas/waste on the commode. I couldn’t fart standing up, and would lie on my back and press my lower abdomen to pass gas. I discovered that technique early on and it remained a way for me to empty. Over 10 years I fared ok. I had a couple of bowel obstructions that required hospitalization, but those cleared on their own after fluids and lots of breathing and stretching. My GI discovered inflammation (rectal cuff I think?) at some point, changed my diagnosis to Crohn’s and started me on Stelara, which I am still taking. There has been no evidence of inflammation since. I’ve had 3 or 4 pouchoscopies with a dilation of the anastomosis, to help me empty better. The first dilation was done by my GI, and the anastomosis site bled so much I was in the hospital for a week and had 2 blood transfusions. The other dilations were done by my surgeon, with no complications. The first dilations did seem to improve overall pouch performance. The last couple of dilations I’ve had didn’t really seem to do much to improve things. This year I have had more issues emptying and it’s as bad now as it’s ever been. Feels like a lot more waste is in me at all times and can’t empty very well. It feels like food is staying “high” and I’m struggling to get waste to go “low” so I can empty it. Like the food is sitting right below my stomach and won’t move. Currently having a lot of reflux. I’ve been modifying my diet, and have been strictly low-residue diet for at least a week. Doing normal doses of miralax daily, combined with extra sport drink and other fluids, almost no solid food, just to keep the reflux somewhat tamped down and to avoid abdominal discomfort and/or another possible obstruction. I am taking 1 daily Protonix and 1 daily Pepcid AC for that.
My surgeon’s advice after the last pouchoscopy was to return to an ostomy. My GI has since echoed that advice, although I do wonder if GI is simply agreeing with the surgeon, or if she would have come to this conclusion independently of his analysis. I have had two defacographies in the last two years, both were negative for issues. My GI is scheduling me for my first anorectal manometry. Due to the current bowel discomfort and reflux issues, I am pressing my GI to schedule a lower GI CT scan with contrast dye. My hope is something can be identified as the current problem, that isn’t a reason to return to the ostomy.
I am able to accept returning to an ostomy, but of course it’s scary and has me grasping for alternatives. Since I’m in crisis right now, I am desperate for relief, yet I don’t want to feel like I’ve rushed into it if another solution could get me through. My doctors would probably say “well you’ve been having trouble with it for a while now” and they wouldn’t be wrong. Still I am asking them questions and also wanted to ask the same questions here, in case someone here has any tips.
1. Is there no minor surgery or “tuneup” to be done on an existing J-Pouch? Resection or something? Are they just “use once and throw away?”
2. Do any diet changes come to mind? Supplements?
3. My surgeon isn’t offering any less drastic surgical options, but I am wondering if other surgeons might offer that. What do know about people who lost the J-pouch but didn’t go to an ostomy?
Thank you in advance for any information and support. - Brett
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