Hi there, well where do I start. Last year I had my Proctocolectomy because of Ulcerative Colitis. Since then, I have had on going troubles with my J pouch. I currently have a temp loop ileo after going through my takedown and not having a great result with my pouch. Anyways, I'm looking at having my J pouch removed as I am still have issues. I have very severe cramping in my bum and tailbone area andI'm constantly going to the toilet to empty my bum. Mainly, I have had enough of the pain. So what I was wondering, is who has had there pouch removed? could you please tell me your experiences, what happened, the surgery, everything. Thankyou.
Replies sorted oldest to newest
Will post more later (Have to go play dollhouse with my 4 almost 5 year old!) but I had mine out and it was the best decision ever. No GI issues since 2001.
I had my j-pouch made in 1987. Over the next 3.5 years I had constant battles with pouchitis and rectal abscesses so I gave up. Had a total of 14 surgeries, which includes the two step j-pouch surgery. Seemed like every time I had problems I had to have a temp ileostomy made to allow things to heal, then the takedown. After the takedown I'd go months without any problems but then they'd start all over again. Final straw was when after my third attempt (had two prior j-pouches removed and started from scratch) all the problems came back within one month.
The reason we kept trying is that the problems could have been caused by the disease still being in the stump of rectum that was left behind. Well, 23 years later after having a permanent ileostomy made, I get diagnosed with Crohns disease just inside my stoma. So, I was one of those people (a very small percentage of us) that were originally diagnosed with UC but actually had Crohns Colitis. The unfortunate side is that if Crohns Colitis had been diagnosed originally (which can be impossible to do, as I and others are living examples of) then I would have gone straight to the ileostomy back then- surgeons, especially back then, would not have made a j-pouch when it's Crohns).
That's the tricky part- finding out why you have problems. I gave up after giving it more than f air shot and am very glad I did. I had over 25 years of remission with no meds until the Crohns diagnosis last year. But I also have a friend who had the same diagnosis issues as me, yet she is able to keep her j-pouch for now. She had lots of problems early, but not pouchitis or other issues like fistuals which can be due to the disease. Her problems were all fixed, but she spent MONTHS in the hospital getting to that point. Her remicade keeps the disease in check for now which is why she can keep her pouch.
Once I had my permanent ileostomy made it was amazing how quickly my body recovered. Kind of the same feeling when you get four new tires on your car at the same time. Talking with your surgeon and doctor about when to consider giving up on the j-pouch I always encourage people to ask earlier rather than later. Not to jinx anyone, but there are some doctors out there who will not recommend an ileostomy unless you ask for one, and I don't think that's a great approach. You never really know what can happen but not all problems mean you need to give up on the pouch. That's why I think it's important to have that discussion with a doctor early.
The reason we kept trying is that the problems could have been caused by the disease still being in the stump of rectum that was left behind. Well, 23 years later after having a permanent ileostomy made, I get diagnosed with Crohns disease just inside my stoma. So, I was one of those people (a very small percentage of us) that were originally diagnosed with UC but actually had Crohns Colitis. The unfortunate side is that if Crohns Colitis had been diagnosed originally (which can be impossible to do, as I and others are living examples of) then I would have gone straight to the ileostomy back then- surgeons, especially back then, would not have made a j-pouch when it's Crohns).
That's the tricky part- finding out why you have problems. I gave up after giving it more than f air shot and am very glad I did. I had over 25 years of remission with no meds until the Crohns diagnosis last year. But I also have a friend who had the same diagnosis issues as me, yet she is able to keep her j-pouch for now. She had lots of problems early, but not pouchitis or other issues like fistuals which can be due to the disease. Her problems were all fixed, but she spent MONTHS in the hospital getting to that point. Her remicade keeps the disease in check for now which is why she can keep her pouch.
Once I had my permanent ileostomy made it was amazing how quickly my body recovered. Kind of the same feeling when you get four new tires on your car at the same time. Talking with your surgeon and doctor about when to consider giving up on the j-pouch I always encourage people to ask earlier rather than later. Not to jinx anyone, but there are some doctors out there who will not recommend an ileostomy unless you ask for one, and I don't think that's a great approach. You never really know what can happen but not all problems mean you need to give up on the pouch. That's why I think it's important to have that discussion with a doctor early.
wow Hobbes650, 1987, that's a while back. Jees 14surgeries, I don't know how you went through all the takedowns. I've only had 4 surgeries all up, removing the pouch will be the 5th. So far, my diagnosis is still Ulcerative Colitis, but I guess I will never really know what I have unless Crohns appears. I have been having troubles ever since having my j pouch made. I keep getting infections and I have always had a collection build up. I'm quite happy with the bag, so I know I will be happy with a permanent one. But with all the pain I am still having in my back area, I know it's gotta be the pouch causing it, that's why I want it removed. My surgeon and I have already spoke about it. But I just want to hear other patients experiences on the whole deal as I know it is a huge surgery.
So, I had my pouch done in two steps in 1998 after a 6 month course with UC. Had chronic pouchitis almost from day one. Tried all kinds of things - traditional medicine and holistic - nothing worked. ONly taking 1000mg or more of Cipro helped and that didn't help that much. I still went 12 times a day, had to modify my diet, couldn't eat after 6pm, and was tired all the time.
So I decided to have the pouch out. Surgeon convinced me to just disconnect, which I did but it didn't help and actually made things worse - I developed some neurological symptoms and still had to take Cipro several times in 18 months. So I found a different surgeon and had the pouch out. Best thing I ever did.
I recovered from this surgery better and quicker than any other - I believe because it was the pouch making me sick and once it came out my body bounced back remarkably well. Hardest part for me was the tush stitches. ONce they came out I was fine. I was walking 1 mile on my own within a few weeks. Four months later I hiked 7 miles at Mt Hood. Eight months later I kayaked 5 hours in Central Florida. I've had two babies, and lived the life I want since the removal.
I take no drugs - except Immodium when I remember. I sleep through the night if my kids do. I eat what I want. I have been very happy with my decision and have never regretted it.
Let me know if you have questions!
So I decided to have the pouch out. Surgeon convinced me to just disconnect, which I did but it didn't help and actually made things worse - I developed some neurological symptoms and still had to take Cipro several times in 18 months. So I found a different surgeon and had the pouch out. Best thing I ever did.
I recovered from this surgery better and quicker than any other - I believe because it was the pouch making me sick and once it came out my body bounced back remarkably well. Hardest part for me was the tush stitches. ONce they came out I was fine. I was walking 1 mile on my own within a few weeks. Four months later I hiked 7 miles at Mt Hood. Eight months later I kayaked 5 hours in Central Florida. I've had two babies, and lived the life I want since the removal.
I take no drugs - except Immodium when I remember. I sleep through the night if my kids do. I eat what I want. I have been very happy with my decision and have never regretted it.
Let me know if you have questions!
Had mine removed just over one year ago. Had it disconnected first as my surgeon said I was too sick to do the full removal surgery. Had significant issues just with it disconnected - pain, going to toilet 15-20xtimes, malaise, joint issues. So about 18months later, had it all removed.
Big, huge surgery. You want the best surgeon you can find on it. You want a surgeon who has done this surgery many times before. And you also want it done in a facility where there are experts in affiliated areas - like urology, infectious disease, etc.. just in case of complications.
I had many complications which resulted in a month long hospital stay. And I am still dealing with wound healing problems from the jpouch removal and have had to undergo additional surgeries.
However, I am still extremely pleased that I removed that jpouch. I can eat almost anything I want, have put weight back on, and am in far less pain. I too think that "mutant organ" was making my entire body ill.
Big, huge surgery. You want the best surgeon you can find on it. You want a surgeon who has done this surgery many times before. And you also want it done in a facility where there are experts in affiliated areas - like urology, infectious disease, etc.. just in case of complications.
I had many complications which resulted in a month long hospital stay. And I am still dealing with wound healing problems from the jpouch removal and have had to undergo additional surgeries.
However, I am still extremely pleased that I removed that jpouch. I can eat almost anything I want, have put weight back on, and am in far less pain. I too think that "mutant organ" was making my entire body ill.
Had my take down in mid Oct 2010 and my J pouch removed in mid Dec 2012. My removal surgery was done laparoscopically, lots of adhesions, 4 or 5 hour surgery, 5 days in hospital. I did not have anus removed. Doing well, pretty much no restrictions on what I do or eat very happy with the decision. Would not recommend disconnect and leaving J pouch in place works for some but didnt work for me and many others who have tried it