My j-pouch leaked.

This message has been edited. Last edited by: TAL,

Terry I'm so sorry for you having to go through this. I had my first TD in August of 05. 8 days later I too had a leak. It was a fistula that was down at the bottom of the pouch close to anus. They operated on me right away and gave me a new illeostomy. It was very tough. I also had problems with all the new staples and stoma location. Then I developed a fistula around my stoma. Stuff would leak out of there too and made my life hell. I had a hard time avoiding leakages. Also because of the surgeries being so close together the surgeon had a hard time seeing what he was doing becuase of all the adhesions. As a result he pulled the stoma from a bad location, causing me to have short bowel syndrome. Basically there just wasn't enough bowel between the stomach and the stoma opening. This also was hell. This needed to be fixed. But, I thought I would ride it out and just hope that the fistula by the jpouch would heal and then I could just have another TD. It wasn't healing so we finally had to go in and do a illeostomy revision. Long story short, it all healed up and I finally had my second TD in March of 07. I am 10 months out from having TD and enjoying life.

Things take time. In my case of going through so much in 2 years, it all worked out. Hopefully it will for you too. Stay strong and do what you have to do. It's not fun, but that's the crappy cards we were dealt. Stay positive!(i know that's easier said than done)

HI Terry Anne,

I'm so sorry you're suffering through so many surgeries and apparent failures. Justin's advice is right on. I am not such a success story in that my pouch failures after multiple revisions and 6 belly surgeries in five years resulted in a permanent ileostomy. On the other hand, I have my life back and feel infinitely better than I had suffering through one failure after another. Understanding what it's like to hold to the hope of it all working, and fully agreeing with Justin that it may well, I also understand how difficult it is to give up the hope that you'll be "normal" with a J pouch. It's a huge decision to begin with, so of course we are all very invested in the outcome. There's the rub: for the outcome to be positive, we've already defined that as having a working J, but if you can take a step back, remaining hopeful and strong, and take the longer view - that the objective is your LIFE working - it might be a little easier on you. I have no regret that I made the initial surgical choices I did as I went along, but after a couple of years of struggle, I could have saved myself a lot of time if I'd not been quite so aversive to a permanent ileostomy. I guess what I'm saying is just try to remain open to what may come your way. It's very early, even though you've had a lot of difficulty. A permanent ileostomy is very different from a loop - my loops were uneven, messy, and leaked often. The skin was so eroded I was in constant pain. But the loop is no measure of how a permanent ileo might work for you if that's where you ultimately have to go. Again, it's early to make any decisions, so you're doing the right thing by asking questions here where the support is wonderful.

I also wonder whether it might be time to consider another institution and another surgeon. Has the same surgeon done all your work? Had she or he had lots of experience with j's? My first surgeon had done enough of the new pouch design he was promoting, but he had NO experience dealing with failures of the scope of mine and could not deal with them adequately (wrong equipment, lack of response/contact after being very responsive initially, and I think a significant ego involvement in his way being right). The second pouch, done two hours away, ultimately failed, too, but that was due to adhesions rather than to the surgeon, who was terrific. My ileostomy was done at yet another institution because I was short-bowel-ish (not quite there by measurement, but certainly by symptoms) and had many complications, so a research-orinted med school and a surgeon with vast experience was a real boon.

Of course you wonder whether it will all work,are exhausted dealing with the pain and difficulties,and still hoping for it all to work. I, too, was very depressed as there seemed to be no way out. My primary care doc prescribed antidepressants, but I refused to take them as it seemed to be treating symptoms: the cause was clearly physical (as though no other causes of depression are real!). In retrospect, I might have made better decisions with the support of antidepressants. What you're dealing with is OVERWHELMING, so you need and deserve whatever support you are offered.

Please send me a p.m. if I can somehow be of help to you. I admire your courage and persistence, and while I don't know quite how it is for you, your language is surely familiar ground. Stay steady and return here for support.

Barbara

Terry Anne,

What are you eating? Probiotics? I did have good response as I changed my diet,but I also suffered from dizziness, liquid output, and failure to gain weight. I have some of those symptoms now as I am dealing with adrenal problems. My endocrinologist sez that those three symptoms are related to blood volume and electrolyte imbalances. How much fluid do you drink per day? (More water is not necessarily the answer - you may have dilution problems, too.) A powder brought the yeast infection under control quickly for me....can't remember now what it was,but I'm sure you must have had advice about it.

Barbara

I feel terrible for you and hope things get better very soon, but you must be patient. Soon you will be on your way to full recovery and all of this will be behind you.

Hi Terry...

So sorry to read this. No advice, just best wishes, and I'll keep you in my prayers. Take care, keep us informed.

Terry Anne,
I am one that had a ton of problems for a couple of years and now I'm okay. I had emergency colectomy since my colon ruptured and in a course of two years I had 11 surgeries. I thought the rest of my life was going to be spent as a "sick" person. But they finally fixed the fistula and got a J-pouch that works.
I still have the usual J-pouch problems but all in all I have a healthy life.
I'm not saying you should put up with a terrible qualitiy of life but I'm saying it can and sometimes does get better.
Take care,
Lori

Where in NC are you at?

Sorry for your troubles.....

I had a bad start as well. Abscesses, pelvic infections, chronic pouchitis, blockages, 7 surgeries in a year-a horrible redo surgery, an ileostomy for a year. That was 7 years ago and I am now a sucess story. Some of us take longer than others.
Hang in there-it will get better.
PS Don't be afraid to take anything for depression-it will help you get thru this ordeal.
Susan

If your interested, I know of some great Docs in the Charlotte area! (They are my doctors, GI and Surgeon and they are BOTH super!)

Hit me up with a PM if you'd like to know more info.