Hello,

I am now a 40 yr old male, Dad of 2 - sole bread winner. Takedown was in December 2004. I did not have a J-pouch because during previous surgery to create J-pouch there were not enough blood vessels to create a J pouch. I received a straight connection. I have been working at home and still have POOR CONTROL despite high meds ( opium tincture, lomotil, fiber, and Imodium) to control output.; the bowel movements have diminished but I have both daytime and nighttime incontinence. Despite incontinence I am healthy.

A recent look inside of my connection, by a GI, shows very little adaptation / reservoir capacity.

My original surgeon kept advising me to wait wait wait as the straight connection (with new rectum also) will adapt to work like a functioning J pouch. It is now 32 months later. Anal Mamomatry shows that my Sphincter muscles are good and strong.

Basically my discussions with another surgeon and my original surgeon are that I have 2 choices for surgery. It must be noted that both surgeons are not sure if reservoir capacity is reason for my incontinence. It can possibly be caused by motility causes spasm and pushes stool out, poor h2o absorption and other medical reasons.

My 2 choices for surgery are:

First - Just get an ileostomy.

Or

Second - Try a two stage J pouch surgery (if can be created - 50 % chance if not then will do ileostomy and I will not be aware until I wake up from surgery)

Each stage will be approx 10 weeks apart. Once connected will need to see if I am continent. Neither surgeon can give me odds on whether a j pouch will work for me.

If J pouch fails then 6 -8 months later I would have to have an ileostomy.

I need to decide quickly because of several reasons including work issues.

Any insight by anyone who went through this or knows about this please let me know.

Thanks.


Thanks

Shooskie,
You did not say why you needed surgery so I will assume it was UC. If that is the case, keeping your rectum means you still may have active disease in your rectum, which could certainly be causing all your problems. Before further surgery, you could try some medications for this. (you mention lots of meds but no UC meds which may be what you need)

I had a straight hookup with rectum for 14+ years. While I wouldn't say I had incontinence, I did have some night time leakage. I had high frequency and generally just always felt uncomfortable (crampy, like I could go). I used Rowasa then Canasa suppositories the entire time to fight the inflamation.

I finally got sick of all that and had 2 step J-pouch surgery in Oct 05 and Jan 07. Thus I spent over a year (by choice) with my temp ileo. I will tell you that life with the ileo was a ton better than with the straight hookup for me. So good, I almost didn't have takedown. But guess what! The j-pouch, so far, is even better.

If it wasn't physically possible for you to have a j-pouch before, I'm not sure what would have changed, but if it is an option for you, I say go for it. But the ileo is still a good option that will provide you much relief if the j-pouch isn't going to work out.

Good luck,
Kenadi

Would you be eligible for a K-pouch? If they couldn't create a J I don't know if the same reasons would prevent a K, but with a K you wouldn't have to worry about incontinence issues.

I see that your rectum has been removed, so that is not your problem.

The main reason that the ileoanal anastomosis without a resevoir was virtually abandoned about three decades ago was because of a pretty terrible satisfaction rate, particularly among adults. For some reason, children seem to adapt better, but even for them it is generally quite unsatisfactory.

I am unclear why you may have the mesenteric reach now when you clearly did not at the time of your original surgery. I do know that some surgeons will attempt a sort of "iffy" j-pouch anastomosis, where there is minor strain on the connection and hope that during the period with the diverting ileostomy, the connection will heal strongly and not develop problems such as leaks or ischemia (poor blood supply to the tissues). I imagine that they have become more skilled in freeing up the mesentery than they were in years past, so even though you have not changed your anatomy, perhaps technical advancement in skills have caught up with you. Sometimes they do an s-pouch for those with a short mesentery.

Being in New York, you are close to several doctors who do perform continent ileostomies (Kock pouches) and you may want to confer with one of them before you go forward. If you choose a surgeon with that skill, you can have that option available if the j-pouch is a no-go, without having to have a separate surgery. Check out the K-pouch Korner forum and there is a list of surgeons there.

Jan

It sounded to me like he still had his rectum, although I did wonder how he got a "new rectum". No one offered me one of those

It is great to have feedback from people who understand.

I did have my rectum replaced to eliminate UC during surgery in 2004.

The reason that a j pouch may be possible is that second surgeon has different technique. Also the straight connect, as per surgeon, may have stretched the mesenteric reach.

If I go J-pouch Route, what is the shortest amount of time recommended between first surgery and 2nd surgery (takedown)? How common is one step? (As I said I am having work issues). Also do you think my incontinence is related to limited reservoir capacity i.e. will j pouch solve incontinence?


As far as k-pouch all my Doctors did not recommend this route. However, I will research this.

The advice has been really helpful.

Also.. Is a K pouch a one step surgery?

I see that you are in NY. I dont know who you surgeons are but may I suggest Dr. Milsom for another opinion. He is very skilled in the problem areas.

I will see a K pouch doctor.

Any advice?

I have a J pouch instead of a K pouch. I definitely recommend that you try the J pouch, or K pouch if that works best for you.

Dr. Milsom does K's