Since I'm fast approaching the 1 yr anniversary of my J-Pouch (reversal aka ileo-anal pouch) surgery, I thought I'd post an update to let you know my experience thus far, especially for those interested in getting this operation.
My background: I’m a 31 yr old guy from Canada. I had 4 yrs of severe UC (2002 - 2006); nothing could tame it and my life was in shambles. I got a colectomy with ileostomy in Aug 2006 - this surgery turned my life around and was well worth it. I highly recommend this procedure to someone who is at their wits end with UC. But 2 yrs + with the ostomy was enough, so I opted for the J-Pouch in Nov 2008.
The first few months after my J-Pouch surgery were difficult. I suffered from all the typical post-op problems: abdominal pain, bloating, excessive BMs, urgency, butt burn, loss of appetite, weight loss, I even had a hellish intestinal bacterial infection for two weeks (which antibiotics cleared up pretty quickly)...During my first months post op I frequently asked: will this ever end? Or, did I make the wrong choice - should I have kept the ostomy? Sometimes it felt like I had UC again. Unlike my prior surgery, where I had nowhere to go but up, it was tough to go from a relatively healthy state with the ostomy to feeling so terrible again. My recovery was at times frustrating and depressing.
But, I learned that patience, LOTS and LOTS of patience, was needed. The body needs time to recover from such a traumatic experience; what's more, the pouch needs time to expand and adapt. Eventually, most of the problems I described above practically disappeared or were greatly reduced. Things also could have been worse; thankfully I have not suffered from pouchitis, leakages, blockages, hernias, or erectile disfunction; I know that some J-Pouchers have experienced these issues.
A year post-op, thanks to God and my friends/family/doctors, my quality of life is pretty good. I can go to work, go on road trips, play sports, go to parties, eat almost anything I want, have relationships with the opposite sex etc...pretty much like a "normal", healthy person. Just four months after my surgery I went on a 7 day ski trip with my buds in British Columbia. We're all pretty hardcore into the backcountry terrain, so I was nervous that I wouldn't be able to keep up, my newly healed abdominals would give way, or I'd have to take numerous poops in 10 ft of snow (ever try to do #2 in deep snow in -30 C? I do not recommend it! ), but I was amazed and thankful that I made it through the trip like I was almost 100% - my friends were amazed. Soon they forgot I even just had surgery and wouldn't cut me any slack That experience was a real breakthrough for me - it gave me a lot of confidence and put some of my irrational fears and anxiety into perspective.
But the J-Pouch is far from perfect. I still have 10+ BMs a day (I know it sounds like a lot, but it's actually not THAT bad - because unlike UC, you can usually control when you go). That being said, sometimes I have a minor feeling of urgency and have to find a bathroom quick. Gas can be a real problem, especially when I have carbonated drinks like beer. I have to watch what I eat, or pay the price later on - spicy food is a real no-no for me. They say I should intake a lot of water because my body is less efficient at absorbing it, and I do feel frequently thirsty, but the more fluids I have the more watery the stool is - so it's kind of a Catch 22. And, because the pouch never stops functioning, I have to wake up at least twice a night to go to the can. This can leave me really exhausted in the morning. Any J-Pouchers out there with tips on how to get a better sleep? I'd love to hear from you.
I don't take any meds now. Just a multi-vitamin and Metamucil twice daily to thicken things (1 tbsp before breakfast, 1 tbsp before dinner - took me a long time to get the dosage right for me).
It's been, and continues to be, a challenging experience, but overall I'm happy with my decision to get the J-Pouch. No matter what treatment route we decide, life will never be the way it was before IBD for any of us. But in my experience, the J-Pouch may be the closest I get to normal. I've read that 90% of people are satisfied with the J Pouch surgery - I would count myself as one of those.