There are no guarantees, but having this surgery was one of the best decisions I've made in my life.

I had my pouch 3 1/2 years and then opted for a perm ileo due to chronic pouchitis. EVen with all I went through, I'd take the failed pouch and ileo over UC any day of the week. Very happy now with my perm ileo and great health.

I fought surgery for over a year. Just celebrated 12 years with my jpouch and it's been the best years of my life. Yes, there are compromises, but for me they have been worth it. I can backpack, hike, and travel abroad without the fear of a flare...or the fear of cancelling an international trip due to UC (yes, that happened). No regrets here.

Sue

quote:

if you had it to do again....would you opt for the surgery with the experiences (butt burn, pouchitis, bowel obstructions, leakage, 10 b,s a day, pain, etc) you've had or try to hold out for another medication or even continue with medication if it is working.

You do realize that this is a support board where most of the posters have problem pouches, correct? And that you are not getting a representative universe of those who have had surgery?

To answer your question: I have had every single one of the issues you listed, and still have chronic but treatable pouchitis, but if I had to do it all over again, I would have had surgery about 5 years sooner. I was lucky that they had just started doing the J Pouch surgery around that time.

My doctor at that time told me that if you have had UC 20 years and evidence low grade dysplasia, which I did at the time, the cancer risk is through the roof, so for me it was a complete no brainer. You have not mentioned how long you have had UC and/or whether you have LGD, which are or should be huge factors in whatever your decision is.

Me, personally? Yeah, I'd do it again in a heartbeat. But, not because a j-pouch is perfect or even cured me of all my problems (it didn't). It is because my colon and rectum had to go and it was a choice of ileostomy or j-pouch. Even without my final flare that was resistant to steroids, I was planning on colectomy because my cancer risk was very high after nearly 25 years post pancolitis diagnosis.

I can truthfully say my j-pouch brought predictability to my life, and I am happy with my function.

The fact that your symptoms do not reflect the actual state of your colon is troubling, as that is when perforation can occur unexpectedly, and that can be a disaster. Also, when there is constant inflammation, dysplasia and cancer can go undetected more easily.

And, to help give you some perspective that is more unbiased, here is a link to an abstract of a newly published quality of life study done on over 3000 patients at Cleveland Clinic (mostly for UC). The results show that j-pouch function is good to excellent for 95% of the patients, only about 5% experience failure, and less than 4% wind up with pouch removal.

http://www.ncbi.nlm.nih.gov/pubmed/23299522

Good luck with your choice.

Jan

For some of us the decision was taken out of our hands and brains. My colon perforated so it was either have the surgery right now or die. Not having to make the decision to have a colectomy is sort of a blessing. I think that most members here tried just about everything and put off surgery for as long as they could. Many of them have also said that they wish they hadn't waited so long. And quite a few have said that when the woke up after surgery they immediately felt much better.

However, if the decision IS taken out of your hands and you end up with emergency surgery, the recovery is much more difficult and there are decisions that you won't be able to make regarding how the surgery is performed. Since mine was emergency surgery, I had to have a 3-step. Since I am not a fan of surgery and if I'd had a choice, I would have gone with a 1-step procedure if possible. And laparoscopically.

I know this is a very, very difficult decision and it would be nice if you had a crystal ball so you could see how life with j-pouch would be treating you. You will know when it's time to schedule surgery. And also realize that you may be one of those who never experience any of the problems that can occur.

kathy

Gigi, the surgery saved my life...I posted this under Success stories pls for SandyK:
"I consider myself a success...my surgery (31 years ago) was experimental and no one was totally sure what would happen. With the exceptions of catching stomach bugs (they really suck) and only one case of pouchitis, am doing well. I still have bad nights and sometimes days where for seemingly no reason things decide to act up, but the good ones more than make up for it. When I consider where i was at 15, anorexic thin, no face color and too much prednisone, and now, I am grateful to those 2 surgeons and my folks who decided i was worth the risk. I might not be here today. I have a beautiful 11 year old daughter I am so proud of and thank God every day I am here with her. My folks are still healthy and around which makes it even better...i know they aged a ton when I was so sick with UC. Each day is a gift...and with all of us, we take them one day at a time. I have found over the years that my cooking is way better for me than eating out...too many chemicals in the stuff and no idea who is preparing it and how clean they are. My only 2 concessions are Whataburger (here in TX and mexican food--major burn but oh my i love that stuff). Plus a friend of ours owns a lebanese restaurant and no issues with their food. As you feel better, you can expand and figure out what works for you...each of us could give you ten different answers but it all boils down to what you can and cannot tolerate. It does take time and patience but is so worth it in the end. Keep that hope shining brightly and some faith to go with it".
The first 3 months - 1 year was a challenge but I got thru it, with a lot of faith and strength from my family. Back then we didn't have the forums and help from other folks with same issues to provide lots of encouragement as we have in this group. I just found these folks a few days ago and they have made me feel better about myself than i have in a long while. So to answer you, I would do this again in a heartbeat.

Gigi,
For a lot of us it was a 'non-choice' and for others it was not even a discussion...They woke up with 1 less colon and 1 new apparatus...others were given meds, drugs, options and choices...
I was halfway in the middle...I tried every med out there, lived off of immodium, gravol, opiates etc from 9-18 and finally after all sorts of alternative treatments (no, chiropractors cannot cure us, nor can 30 days fasts, 3xs daily enimas with various juices in them, epsom salt lavage etc), I did every Other surgery out there too, cutting, snipping, tightening, shortening etc my guts and their surrounding tissues...in the end, I lost 10yrs, hundereds of thousands of dollars for my parents, the health care system and myself and still ended up Gutless, pouched and if not totally normal or happy at least healthier, freer, more independant, and take a whole lot less drugs than before...Some of us need to travel the 'tried it all' route before we are able to choose...others not...But the essential thing is that you never, ever put your life in danger, your futur in peril or hurt your body irrepairably...
I regret wasting all of that time but that is me...And my family needed to suffer to come to the same conclusion that could have saved me a lot of pain and suffering...
Hope that your decision is less painful and a lot easier...
Sharon

It really wouldn't have been a choice for me at the time I had the colectomy and J pouch in 1990. No medications available at the time were working and I was down to 89 pounds.

I still feel fortunate, though, bc the J pouch surgery was an option for me. Since I was so young, I was glad I wouldn't have a permanent ostomy.

I have had complications but I would still do it over again. I waited 5 years before I was willing to go through with the surgery. I was so young and afraid. I would have suffered less if I was willing to do it sooner, but I just wasn't ready yet.

If you have time on your side, you can wait until you are at peace with the choice. However, like the others posted, you do need to seriously keep in mind the risks of doing nothing, as well.