I have found that on these groups people only talk about the bad and the problems they have which of course is normal and the people who are happy and healthy are too busy enjoying their lives to come on here and post. Just wondered if anyone could post some positives about the j pouch. I would like to see happy stories to put my mind at ease. X x x
This is a support board primarily for those with J Pouch issues that need support, but if you are looking for positives try the 30 year poucher thread:
You are correct that this is not the place where people with happy outcomes typically visit. However, I see you have J Pouch surgery upcoming from your profile and regardless of what your long term outcome is, you will need support after you have surgery, and you will find it here. Good luck Ms. Scottish Cutie.
It's true that those who feel great don't post here. I have been feeling really great but just popped on to see if there was anything about butt burn that might be helpful for me.
I'm very, very happy with the pouch. Quality of life is great compared with having UC. I feel normal and healthy. Only when I have to go to the bathroom a few times in the evening do I think about having a pouch.
Most people don't have the issues you see here. I think they are just concentrated here. My doctor told me that most of her pouch patients check in once a year and don't have issues.
I agree with all the above. It is awesome to know that people had their J-Pouch 30 +. I am only in my 5th year. My quality of life is what it is. It's my new normal. I rarely feel normal. It's a life changing decision and I know I only chose this route because the doctors couldn't do anymore for me with medicine. For me it is so much better than a bag and so happy I had the option for the pouch. So that is the happy news!!
I have had my pouch for just under two years and have had no real issues with it. I eat pretty much what I want to and have not experienced any adverse problems. I am over 60 and recently climbed the Mount Washington Summit. It took 5 hours and I did not need to empty my pouch until the end. I also ate and drank along the way. I did take two Lomotil just prior to hiking and made sure I emptied before I started. I would say that the only real problem I sometimes encounter is not being able to empty completely at times and leakage if I can't get to the bathroom right away. Other than that, I have no complaints. It is all individual, but most people do pretty well with their pouches. I consider any issues I might have as minor inconveniences.
I had 15 good years with my j-pouch (the first year of recovery was a little rocky of course). I could eat what I wanted, except for very high fibre items, but I did have to avoid alcohol because it made me extremely dehydrated. I had mild pouchitis a couple of times a year – maybe a day off work. I also had to take Metamucil before every meal, but I worked out a system and carried supplies with me.
Providing I stuck to my diet and medication regime, I felt fine. I worked full time, did yoga, ate lots of curry with friends, travelled to Japan, finished a certificate course.
The only thing I couldn't do was "be far from a toilet", so no camping or hiking. However, more intrepid outdoors types manage pretty well, from what I hear. And I rarely camped or hiked before the op anyway, so didn't feel I was missing out too much.
(This isn't a "happily ever after" story – after those 15 good years I'm afraid my pouch stopped working properly.)
Hubby has had his for close to 24 years. Lets just say he is healthier than when he had colitis. Knock on wood.
I have had my pouch for 19 years and live a pretty normal life. 2 kids, SO, work two jobs, travel, hiked, cycled. I have the occasion minor issues, very occasional night leaks usually because of something I ate or drank.
I did develop Enteropathic Arthritis last year but currently managing it with Sulfasalazine.