I had my surgeries in 2007, with complications including obstructions and a pelvic abscess. I suffered with the painful, burning multiple bowel movements for 6 or 8 months. I tried Lomotil but it gave me gas, which meant more trips to the bathroom since I couldn't pass gas without passing liquid stool.
At some point, I was prescribed some oxycodone 5mg for pain and I noticed that it also slowed my gut down and reduced the frequency of BMs without giving me gas. After much testing by various GI specialists, with no conclusions or recommendations other than going back to the ostomy, I went to a rheumatologist. Not unusual, as they are experts in autoimmune disease. He immediately prescribed oxycodone up to 4 times per day, and a fentanyl patch to provide continuity. This reduced my BMs to a more manageable 12 to 14 times per 24 hours. By increasing the time food stays in my system, it reduced the undigested food and stomach acids coming out, which reduced the pain and irritation in the pouch and cuff. I continued to apply Calmoseptine after BMs for years, to reduce the burning sensation after a BM.
This allowed me to return to work (I was a nurse). It wasn't perfect; the oxycodone blood level goes up and down over 3 to 4 hours, but it was a vast improvement in both comfort and health.
I never had any problem obtaining these narcotics. My rheumatologist does not prescribe Oxycontin because he thinks it's too addictive, but he never questioned my use of what he prescribed. Over the years, as tolerance built, we would increase the dose slowly, but I never took large amounts. I don't even like the "high" effect of narcotics. By the time I retired, I was using a 25mg Fentanyl patch every 2 days and oxycodone 5mg about 4 times per day. Slowly, over the years, my body adjusted and I could do away with the Calmoseptine. I was generally more comfortable. Many foods that never bothered me before the surgery had to be eliminated, but I think everyone has different food sensitivities and you'll figure out yours.
I also started taking Metamucil twice a day in as little water as possible after breakfast and dinner. That helped to slow transit time and firm up the stool a little bit.
After I retired, I decided to see if I could get by without the narcotics. I slowly reduced them over about 3 or 4 months. It was unpleasant but bearable. After a few days without any narcotics, my bowel function settled down to about 10 bowel movements per 24 hours, with no more dysfunction than when I was on the narcotics.
This is my first time on this blog and I haven't seen any other posts about using narcotics to control bowel function after colectomy with J-pouch. My experience is that it allowed me to continue to work, gave me a reasonable quality of life, and allowed my digestive system the relief it needed to slowly adjust over a long period of time. Clearly, I was not an addict since I never liked the feeling when we initially increased my dose, and I got off of them as soon as I was physically able. I think any provider who does not consider opiates, with their profound "side-effect" of slowing bowel motility, as a feasible treatment option for patients with extreme discomfort and dysfunction due to J-pouch surgery is failing as a medical provider.
I am 64 years old and 10 years since surgery.