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Hello everyone,

I've had my pouch for just over a year and still suffer from frequency, urgency, leaking, dietary restrictions, a lack of mobility (gotta be near a bathroom at all times) and the occasional accident. A pouchoscopy revealed no inflammation and I've tried several medications to lessen my frequency, to no avail. Apparently a speedy transit time is to blame for most of my woes.

I'm very unhappy with this pouch and believe I'd do better with a permanent ileostomy (I did very well with the temp ileo). Today I went to my surgeon to discuss options and, frankly, I'm scared out of my wits. It's major surgery, obviously, but my surgeon claimed there's a 20-30% chance I'll develop either impotence or retrograde ejaculation (I'd believed it was more like 5%). He also mentioned there was a small but real chance of developing bladder incontinence. When I asked him how many pouch to end ileo conversions he'd done, he said of 150+ pouches he's created, he's only had to remove 5 (yep, just five). He also removes and seals the rectum, which I've read is quite painful (I'm okay with abdominal pain, but not with butt pain). Since I'm with Kaiser, I can't just shop around for surgeons, and Kaiser's other local colo-rectal surgeons have less experience than mine. I'm angry with myself for not researching how arduous and risky it was to remove the pouch; if I'd known it was this bad I'd have gone straight to an end ileo!

Two questions for anyone who's gone through the pouch-->end ileo conversion:
1) Did you have any problems with your bladder or reproductive organs?
2) Had your surgeon performed many conversions before doing yours?
3) If your rectum was removed, how bad was the pain and how did you cope?

Thanks!

Replies sorted oldest to newest

fqfqMember
yeah, you definitely want to make sure the surgeon is very experienced at REMOVING pouches (not just creating them)..... sounds like you have tried a lot of things already. out of curiosity, have you tried anti-spasmodics, opium, codeine or pain killers to reduce transit time, narcotics (I know, no one likes to be on these...), dietary modifications (annoying to limit diet, but i'm talking more like increasing the carbs or cutting back on sugar and juice)? some people say it could take 2 years before things settle down. have you gone to another surgeon for a second opinion to see if maybe there are structural issues with the pouch itself? have you considered leaving the j-pouch in, and getting a loop or even end ileo, but still leaving the j-pouch inside (this is safer, since it is not deep pelvic surgery with much higher risks). if your pouch isn't inflammed, it is a good option to consider. the pouch will just be left inside, but won't be used. the surgery is much less invasive and a smaller surgery. this one is probably easier for your surgeon at Kaiser to perform. for the complete pouch removal, you definitely want to go to a 'big guns' surgeon!!

i had an ostomy for 3 years, and did very well with it too. if i was really miserable after a year or so, i would opt for the less invasive surgery (unless there was something really wrong with the pouch, like chronic pouchitis, that could still cause issues).
fq
fqfqMember
wonderful that surgery went well.... but unfortunately that is not the norm for this type of surgery. removing the pouch is bigger and more complex than creating the j-pouch, requiring careful handling of nerves down there. i suggest, as previously, to consider getting a loop/end ostomy while leaving the pouch in, or consulting with a surgeon who has more experience in removing the entire pouch (if possible with Kaiser). My friends work for Kaiser, and I understand it can be limiting, especially for those with complex surgeries and medical history. A good surgeon is key here to having an 'easier than expected' time from pouch removal. This is of course assuming you have exhausted or don't want to try any further meds or options to salvage your pouch. best of luck to you in whatever decision you make.
fq
I ISeeUCMember
FQ- I've tried bentyl, an antispasmodic, which had no effect. Increasing carbs and reducing sugars doesn't seem to do anything for me either. Tincture of Opium works for 3 hours, but I'm not to take it more than 4x per day, which only covers me for 12 hours; the rest of the time I'm poopin' like a madman. I haven't tried codeine or other pain relievers.

Itsnotsherry- I'm so glad (and relieved!) to hear your surgery went well. It gives me hope that this surgery may not be as hairy as I fear. I hear you about the importance of having an experienced surgeon work on me.

I'm really conflicted about this, but may just wait another year or two to see if this pouch starts to behave a little better, or if I can switch to an insurance provider with access to a more-experienced pouch surgeon. In the meantime I'll ask Kaiser if they'll refer me to a more experienced out-of-network surgeon (doubtful, but it won't hurt to ask).

Thank you so much for your replies!
I
J JillMMember
I too found the removal surgery much easier and faster to recover from than I was lead to believe. Yes the surgeons experience is important, but as you found out, five is probably considered pretty experienced (ESP if the dr has only done 150 pouches total). However, I believe the key for me is that the pouch was making me sick. Once my body was rid of it, I rebounded fast. Really fast. As in I did a seven mile round trip hike to Ramona falls at mt hood just four months after surgery. Even more remarkable since I hate the outdoors and have never been a hiker. But once that pouch came out I felt I could do anything.

I'm female so can't speak to the specific reproductive concerns you have, but I did conceive three times post pouch removal (through IVf) and carried two pregnancies full term - now my 6 1/2 year old son and 4 year old daughter.

I don't mean to minimize the seriousness of the surgery, but I know several people with experiences like mine - quick healing when pouch gone because pouch truly was the problem.

Good luck making this decision. I know how tough it is. Let me know if you have questions.
J
fqfqMember
That's exactly my point. even though there are some positive jpouch removal stories, they had a good surgeon, which increased the likelihood of success. If your own surgeon is giving you horror stories, that is not a good sign and it is time to see another opinion!! If my surgeon said that and I was hellbent on getting the pouch out, I would have the surgery done by a surgeon who instilled more confidence in the outcome. Also since your pouch isn't diseased or inflamed or whatever I still don't know why he didn't offer the option of just disconnecting the pouch (giving a loop or end ostomy while leaving the pouch in). This is a much simpler procedure. Again nothing against Kaiser, my friends are there, but I might check elsewhere if possible. The jpouch has frustrating moments, and it's good to know the ostomy option exists still. Think long and hard if u want to make the Ostomy permanent or just disconnect it, especially since it's not diseased. The reason I say this is NOT because I am against a perm ostomy (I lived with one for 3 years and LIKED it), but because the much less invasive surgery might work out for you and one day you just MIGHT want to go back (or not). This is advice I am giving based on your situation and the same advice I would give a family member, and I am not biased by a either a horrible or wonderful j-pouch experience. Best to you.
fq
I ISeeUCMember
fq- My surgeon explained that the pouch withers without stool going through it, which makes it difficult if not impossible to scope if something (Chron's, cancer, pouchitis, etc.) should go wrong with it down the line. So, best to remove it now for the future health of the patient. Once the pouch is gone I'll gladly boogie out the rest of my days with an ostomy. It's the complications from the conversion surgery I have to get my head around.

It's a difficult surgery no matter who performs it. I believe my surgeon was giving me the same speech any surgeon would've given me, I just wish he'd let me know this before I decided to get the pouch (maybe he did and I ignored him). We live and learn.
I
fqfqMember
yeah i hear ya. no one really goes into details of what it would mean to remove a j-pouch. in fact, my surgeon sorta glossed over complications involved to just BUILD a j-pouch. i guess they think these things are relatively rare and why scare the patient when there is a low probability of major complications and/or removing the pouch.

i've never heard of the pouch "withering" away or being hard to scope if it is left disconnected. i think the intestines do generally like a stool supply going through it, but people live with disconnected pouches/loop ostomies indefinitely without issues. if it was diseased, i understand how it could cause problems. but, one of the top california surgeons i consulted with said that they hardly remove the pouch unless there is disease/crohn's or good reason to, because most people can live without issues with a "disconnected" j-pouch, and that is what he would prefer if i wanted to go back to the ostomy. but i can see the other view of just taking everything out and sewing it up. i personally just find that surgery to be so huge and the sewing up of the anus makes me nervous (not because of its permanency, but because of its slow healing). guess that's why getting a few opinions helps. but you ask 10 different doctors, you get 10 different opinions! you know what they say... opinions are like a**holes...everyone has one Wink
fq
kathy smithkathy smithMember
You could try an 'permanent' end ileostomy without resorting to Ken Butt surgery. There are quite a few people who have gone to an end ileostomy without having their j-pouch removed and having their anus sewn shut. You may do fine with that option. If that doesn't work you can make a decision about how to move forward from there.

Oh, and the disconnect surgery is fairly simple compared to pouch removal surgery.

katby Big Grin
kathy smith
C chiromancerMember
Our situations our similar I am also in Kaiser.Where I live there are two surgeons that do this type of surgery. Fortunately they are both good and experienced. I think that almost no one realizes or is told how big the J pouch removal surgery is if you have a pouch failure. Pretty much all on this site will tell you to "try the J pouch you can always go back to an ileostomy if it doesn't work out", true but it will require several additional surgeries (as opposed to just going with the ileo to begin with). That said hind sight is 20 20, so we just need to go forward.

I concluded that my pouch was never going to satisfactory for me and after about 20 months had it disconnected. I gave my surgeon the OK to remove it, if it was going to be simple (some are easier then others to take out)naturally mine was not easy to remove so it was left to be removed another day. At the time I did not want a big surgery. So I have an end ileo and disconnected pouch. This worked great for about a month but the secretions have increased and are now a hassle. The damn pouch thinks it is still connected. It likely will atrophy after a time but shows no sign of doing so.The secretions cant seem to be controlled. I am likely going to have it removed but do not want the sewed up butt (Ken), anal removal surgery though this is generally done, it is not always done. I too am, as is my GF concerned about the sexual dis-function issue though I didnt know it was that large a % so this is something I need to discuss with my surgeon and I appreciate you bringing it up.
C
I ISeeUCMember
Kathy-
I originally intended to have the pouch removed so I wouldn't have to worry about it in future, but given the complications I'm now considering leaving it in.

Chiromancer-
I'm sorry to hear you're having problems with your disconnected pouch--pouches can be ornery little cusses, can't they? If you're going to Kaiser San Francisco, we have the same surgeons. May I ask if they were able to save the intestine above the pouch? That's another thing about the conversion that worries me--losing another length of small bowel. Feel free to PM me if you'd like to compare notes.
I
I ISeeUCMember
Quick update: I had my j-pouch removed just after the New Year and feel a world better than when I had it. Turns out I had a fistula and abcess that, along with incontinence due to nerve damage from the first surgery, were making life miserable. My wounds are healing well, my energy level's good, my bladder and "naughty bits" still work like they're supposed to, and I am extremely glad I had this surgery done.
I
Jan DollarJan DollarModerator, RN, retired
Good news indeed! Sometimes the toughest thing is deciding when to give up and take a new path. Scary to think you have to start from scratch and what you thought you "knew" really was not true for you.

But, how great is it that you made that journey and feel so good now! Thank you for coming back to tell us how happy endings do happen!

Jan Smiler
Jan Dollar

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