NSSG: Let me be clear, Jpouch life (except for the first three weeks after takedown... that was unspeakably bad) is much better than UC. Uncontrolled UC does not merely mess up your quality of life, but will have long-term health consequences. If you cannot control your UC with meds/diet/etc. colectomy is the right choice medically and personally. What I urge you is to look into ostomies. Consider a three stage procedure, letting you try an end ileostomy, which you may keep if you wish.
I say this because while jpouch success is good, ileostomy success is... definite. I am taking 8x immodium, metamucil/questran sometimes (I don't think it does much for me), VSL#3DS, using a bidet, wet wipes, calmoseptine ointment, Balneol for the anal canal, HC suppositories (while my cuffitis appears to have been mostly diversionary, maybe not all of it was), and the occasional painkiller/sleep med. I am highly proactive in doing my best with pouch symptoms (I'd go crazy if I didn't).
What is so difficult emotionally is that with my ostomy.......... I didn't have to do any of that. I didn't have to think about any of this stuff. There is no risk of pouchitis, cuffitis, no anastomotic strictures, no continence outcomes, no nothing. There is less surgery done on your body. I wouldn't be waiting months, up to years, to find out if I'm going to have an acceptable quality of life. With my ostomy, once I recovered from the surgery itself, my quality of life was normal. With my ostomy, there were challenges, but I was able to resolve them by being creative with my hardware. No pills, just a different kind of tape or bag.
I'm not able to eat the paleo diet that I love (instead eating bland junk like pasta and rice), I'm having to work so hard to get good sleep, going out of the house is a challenge, and I have not been the same mentally/emotionally since takedown.
I went through with takedown because I already had my jpouch and I didn't want to either recklessly do pouch excision or just leave a disconnected pouch in place (not good either). My plan is to be patient and (hopefully) reach the expectations my surgeon set for my jpouch. I remember my surgeon saying "you should have no urgency, no discomfort, no bleeding, and 4-6 BM daily with one at night. Most people do not have any complications."
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs not successful
Antibiotics help a lot, Low Dose Naltrexone, CBD oil, Fish oil, Turmeric, occasional Vit D
SCD probiotic yogurt
FMT 11/2014 w/ antibiotics & antibiofilms, aborted after 6 days worsening symptoms
Nothing worked. 12/2014 Proctocolectomy with ileal pouch anal anastomosis