I had UC and a J pouch in 1990. I have never been impressed with my doctor experiences during UC and post surgery. Thank goodness for the internet now! I can't believe it took me this long to hunt online for help. 
I have been reading a lot of posts this morning and I am relieved to find there are reasons for a lot of what I am struggling with, but I am also overwhelmed by all the information. Plus I know this is going to be a trial and error process.
My situation: I am 43, UC for 5 years, J Pouch in 1990 with hernia post surgery, adhesions removed around 1992. I gave vaginal birth in 1999 and tore terribly. Prior to the tear I had trouble passing stool and gas. That stopped after the tear, but I have had day time and night time incontinence ever since.
My temporary ostomy was a nightmare due to large volumes of water output. It continually filled like a balloon and even fell off sometimes bc it would get full/heavy quickly. I still deal with daily dehydration, nausia, watery bowl movements. My skin is regularly irritated and it hurts to sit many times. I regulary "over heat" and take gabapentin for hot flashes (not related to menopause). I am unable to exercise due to the incontinence, except for biking (sitting). My energy has always been low, but has severely plummeted in the last 2 years. I have battled depression since the beginning of my illness but only realized in the last 10 years it was largely due to my illness. I have been on many antidepressants over time.
I have tried a variety of things through my own trial and error. I'll be honest and say I haven't been consistent with most of it because I've had limited success. I have tried drinking more, Imodium, Gas X, Vitamin B and a multivitamin, elimination of carbs. All of these have been helpful (esp elimination of carbs), but the incontinence continues.
My last visit to a specialist was about a year ago. I avoided docs for years bc of bad prior experiences related to UC. The visit a year ago was no better, though she was supposed to be on the cutting edge for people dealing with incontinence. She put a probe in the rectum and it hurt terribly due to irritation so that she couldn't complete the testing. I was given suggestions about how to heal the irritation and was told to take 2 tsp Fiber One/day for two weeks. It was a nightmare with even more frequent BM's and irritation. I called about it and was told to give it more time but that it was important to continue with the Fiber One. I stuck with it until I just couldn't take it anymore. The urgency, increased # of BM's and irritation were intollerable. I never went back to her bc she had no other suggestions to offer.
I just want my life back. I am at a point where I have no energy, have difficulty working and focusing, I am short tempered due to pain and lack of sleep and I still battle depression.
I don't know that I have pouchitis....From what I've read it involves bleeding as a common symptom. I have never had that.
Sorry this is so long. Any suggestions on how to sort all this out would be greatly appreciated.
I have been reading a lot of posts this morning and I am relieved to find there are reasons for a lot of what I am struggling with, but I am also overwhelmed by all the information. Plus I know this is going to be a trial and error process.
My situation: I am 43, UC for 5 years, J Pouch in 1990 with hernia post surgery, adhesions removed around 1992. I gave vaginal birth in 1999 and tore terribly. Prior to the tear I had trouble passing stool and gas. That stopped after the tear, but I have had day time and night time incontinence ever since.
My temporary ostomy was a nightmare due to large volumes of water output. It continually filled like a balloon and even fell off sometimes bc it would get full/heavy quickly. I still deal with daily dehydration, nausia, watery bowl movements. My skin is regularly irritated and it hurts to sit many times. I regulary "over heat" and take gabapentin for hot flashes (not related to menopause). I am unable to exercise due to the incontinence, except for biking (sitting). My energy has always been low, but has severely plummeted in the last 2 years. I have battled depression since the beginning of my illness but only realized in the last 10 years it was largely due to my illness. I have been on many antidepressants over time.
I have tried a variety of things through my own trial and error. I'll be honest and say I haven't been consistent with most of it because I've had limited success. I have tried drinking more, Imodium, Gas X, Vitamin B and a multivitamin, elimination of carbs. All of these have been helpful (esp elimination of carbs), but the incontinence continues.
My last visit to a specialist was about a year ago. I avoided docs for years bc of bad prior experiences related to UC. The visit a year ago was no better, though she was supposed to be on the cutting edge for people dealing with incontinence. She put a probe in the rectum and it hurt terribly due to irritation so that she couldn't complete the testing. I was given suggestions about how to heal the irritation and was told to take 2 tsp Fiber One/day for two weeks. It was a nightmare with even more frequent BM's and irritation. I called about it and was told to give it more time but that it was important to continue with the Fiber One. I stuck with it until I just couldn't take it anymore. The urgency, increased # of BM's and irritation were intollerable. I never went back to her bc she had no other suggestions to offer.
I just want my life back. I am at a point where I have no energy, have difficulty working and focusing, I am short tempered due to pain and lack of sleep and I still battle depression.
I don't know that I have pouchitis....From what I've read it involves bleeding as a common symptom. I have never had that.
Sorry this is so long. Any suggestions on how to sort all this out would be greatly appreciated.
))...