Skip to main content

Replies sorted oldest to newest

Lots of people here with successful j-pouches. Of course, everyone has a different idea about what is successful. While you wait for a dialog with someone here, have you had a consult with a surgeon? If not, that might be a first stop, so you can ask lots of technical questions. Plus, most surgeons have a list of their patients who are willing to talk with prospective patients. This can be especially helpful, because they have experience with your particular surgeon.

 

Believe me, post op care can vary a lot between surgeons, as they have different philosophies on how to handle things.

 

Jan

Jan Dollar

I had my Jpouch surgery just over 8 years go. I don't regret having the surgery. I felt amazing at my first check in. Yes, I get pouchitis and I found out today via a scope, which oh so not fun, that there are ulcers on the my pouch and that is why I am having my current issues. But honestly life is better with the pouch. I just take the good with the bad and compare it to life before the surgery.

 

I do recommend you talking to a GI surgeon and your GI doctor. And do your research. It helped me a lot with what to expect, etc. 

 

 

C

Posted on your other thread first. 

 

I consider mine a success. I had zero issues for 21 years, then developed an abscess/fistula. However, my pouch itself is still looking good.  The bottom anastomosis narrows at times, necessitating dilations in the past 2 years, but overall, again, the pouch itself has always looked pretty good and functioned quite well.  For twenty years, I was the poster child for excellence after J pouch surgery. 

 

rachelraven

Jeremiah, 

 

3 years out and no problems other than living the life.  I'm a pre-med, division 1 college athlete, who honestly had no life during UC when I was 15-18.  Surgery is a scary thing but its also not the end.  I had minimal problems(blockage after surgery) which were easily fixed.  Take  your time finding the right doctor.  Search for somehow who feels right and has EXPERIENCE.  I went from WV to NY for my surgery and it was a great decision after meeting many doctors.  If you have any other concerns or questions about life after J-pouch do not hesitate to ask!

S

I've had my jpouch 22 years, and would say I've had mixed results, but I've been in the "successful" category for the last few years.  I spent a number of years with problems that weren't addressed aggressively enough by my surgeon (moral of story - find out ahead of time who will be treating you afterwards, and how, if problems do arise).  I also developed a fistula about 16 years into the jpouch, which is holding steady.  While I still have cuffitis, it's under control with suppositories.  I think about how OUT of control it would be if I still had my entire colon - that is, if I'd still even be alive....

 

I couldn't even say how many times I go to the bathroom during the day, I don't really keep track.  Maybe 4-6 on a good day.  Usually if I have to pee, I figure I might as well empty the jpouch as well, so I don't know if those count.  There's rarely urgency, I can "hold" it for quite a while.  I occasionally have to get up during the night to empty, and still have the occasional "accident" during the night.

 

While I don't participate in contact sports (not because of the jpouch, tho!), I do serious yardwork and gardening which involves lifting, 4-5 mile daily walks, and light weights - no problems.

n/a

Yes you will be able to do anything, within reason that is.  I play soccer at my university where we practice every day for 2 hours and weightlift HEAVY 3 times a week.  With that being said make sure you are healed and take things slow before you do any of that.  I took 6 months off before I eased into rehab with light weights and eventually heavier weights.  Running was not an issue once I felt up to it and my scars had healed.

S

I had my first and only UC flair that led to a ruptured bowel last Feb.  Emergency surgery for that, and then a J-Pouch created in July, followed by takedown at the end of last October.

 

It's almost five months since takedown, I feel pretty good and for the last few months I've been able to workout.  I lost nearly 50 pounds during my first hospital stay (probably could've afforded to lose 20), and the whole process was tough, but I feel pretty great today and, in my early 40s, am probably in better shape than I have been since college, and am at a healthy weight for my body type.

 

I'm still relatively early in the process, and generally only take a multivitamin, a probiotic and a gas pill, with the occasional Imodium for those times when a bathroom is inconvenient (long flights, weddings, kayak outings, etc).  Right now, I'm using the bathroom between 6-10 times a day, depending on diet, and I'm hopeful that this will drop to the 4-6 times magic number over time.

 

Generally, I sleep through the night until about 6:30 or 7:30 am, and go again around 8 or 9 and a third time after breakfast.  If I could somehow limit these trips, I'd be golden.

 

Usually, I'll have 1-2 bathroom trips during the workday (once around lunch, and/or once in the late afternoon) and once after dinner and once before bed. 

 

High fiber foods tend to make for greater frequency, but it's a trade I'm willing to make for leafy greens on days when I know a bathroom is easy to reach.

 

Gas is probably my biggest issue; some of my trips are light on stool and heavy on the gas, but I haven't yet passed gas without passing stool, and don't know that I ever will be able to do so.

 

Exercise seems to lower frequency for me, which is a nice side benefit to working out, and I'm hoping to get into an adult soccer league soon.

 

ATXGuy
Originally Posted by jeremiah johnson:

i have had uc for 3 years and am thinking about getting the j pouch. i am wondering if someone with a successful surgery that has had there j pouch for a while would talk to me. i would appreciate your time very much

I am a little over 4 months takedown and it has been a rollercoaster ride but it is a very personal decision (one I am glad I made) but it is not easy in the beginning

 

 

MelissaCompton

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×