Albannach said...
Absolutely. I love my j-pouch. I've had it for 3.5 months now. I would class my overall quality of life as excellent (i.e. normal!) - and far better than he life I had with UC.
I empty my pouch 4-5 times every 24 hours. I have no urgency at all. I never pass blood or mucus. If it's not convenient to get to a bathroom I can hold on comfortably for hours (I did this in a long work meeting a couple of weeks ago, and it was fine). I don't take any medication, though I do take psyllium husk (a natural dietary supplement that helps thicken watery stool).
Pre-UC, I would use the bathroom 4-5 times a day anyway (usually twice for a BM, and three times to empty my bladder), so the quality of life I have now isn't really any worse than back then - it's just that I empty my pouch each time, which takes a matter of seconds. My stool isn't as formed as it was pre-UC (most of the time it's like nuggets), but I really don't care. I usually sleep through the night. I can pass gas while sitting or lying down.
I work full time, I'm married with four kids, I go to the gym, I travel, I eat an unrestricted diet, I drink coffee and alcohol (in moderation). If you met me and didn't know I was a j-poucher, I don't think you would ever know if I didn't tell you.
Life with an ileostomy was also great and so liberating - but I'm really glad to have a j-pouch. Overall it seems like there's less maintenance involved (in that I don't need supplies). With hindsight I wish I could have gone for surgery much sooner after diagnosis, rather than spend four years trying out medications and being ill... but that's life. The experience of illness was also helpful in many ways, and made me see life (and other people) very differently.
Negatives so far: they are big surgeries, though thankfully I recovered quickly. It would be nice to be able to pass gas quietly while standing, but that's not a big deal. When I empty my j-pouch, it can sometimes be noisy (as there's usually some gas in the pouch). I have mastered turning on the hand drier (very loud) while using the toilet at work though.
Pre-surgery, I was just like you are now: infliximab not really working, so much urgency and so many BMs. It was a nightmare. I also weighed up whether it would be worth continuing to struggle on, in the hope that one day a new drug would appear. In the end, I decided to cut my losses and get my life back - and I'm glad I did.
Hi! wow that all sounds really great. And you have 4 kids while dealing with all that? your amazing! I love hearing you can travel especially because I always dream about
that but it seemed unrealistic for me. So happy the surgery worked out for you and your living ur best life. And I agree with you 100% on the experiences with UC helping me look at life and other people very differently. I feel likeI have a newfound compassion and understanding for people as well as my outlook on life is much simpler. Thank you so much for answering my post! I really appreciate it