Has anyone been required to have a sphincter repair before having the take down done? For me it was due to episiotomy tear during giving birth to my second child. My concern is that the muscle will still not function adequately considering the type of stools produced with a j-pouch. Too afraid to schedule take down because of this. All stories and any advice is greatly appreciated!

Hi Kelly,
My sphincter was sliced through when they did my first surgery at age 2...from then on things got worse and by 10 I had pretty much no control (not fun)...they did 2 gracillis muscle flaps on me. One took for 2 yrs and the 2nd not at all...both ended up snapping (even less fun) and I had to have a K pouch due to full blown incontinence (+IBD!!!)...there are not a lot of techniques to rebuild a sphincter, they either use silicon implants (I believe one of our Austrailian memebers had it done and it did not end up very well) and the gracillis flaps which are very painful and also used to close recot/anal fistulas (I believe)...I am not sure what they are proposing for your repair but I do know that it is a very delicate surgery...make sure that you have good, open lines of communication with your doc before having anything done.
Sharon

I had sphincter repair before my j-pouch surgery, but it was not related in any way. Eight years before my colectomy, I had a vaginal birth of my nearly 10 pound son. This was an outlet forceps delivery that resulted in 4th degree lacerations (completely through the rectum beyond the episiotomy). I must of healed up fine because it has been more than 16 years since my j-pouch surgery and I still have good continence, at age 56. I haven't had to have further repairs...yet. Time will tell what the future decades will bring, though. But, I don't worry about it.

Since you already had the repair, there is only one way to see if it was successful- take-down. I presume they've done manometry?

Jan

Thank you Sharon and Jan for sharing your experiences.

Doctors have not done manometry. Pretty much just a digital rectal examine and asked to squeeze. As far as the repair went, they just overlapped the ends where the sphincter had been cut instead of stitching it end to end. I was told this would produce a stronger muscle. Of course I have been told to exercise the muscle to improve it strength, but I still just have too much leaking of clear fluids and muscus at this time. Is this normal with a strong sphincter until you have the take down?

I did cancel my January appointment to discuss the take down, but have rescheduled it for mid February. I'll try not to chicken out again!

One other question...in comparison to the standard ileostomy bag, does the typical J-Pouch hold the same, more or less stool? Another fear I have is that it will hold a lot less and I will be running to the restroom 10-15+ times even if I do gain good sphincter control. I take 40mg of Prilosec twice a day, along with 2 immodium tablets 3 times a day. Even with this routine its never consistantly thick and I can empty bag anywhere from 6 to 10 times a day. Dairy seems to be a problem also. Produces burning acid to the stoma (not the skin, generally have great seal with the wafer)and causes watery stool. Have pretty much given up on having dairy anymore.

I did not have to have a repair before takedown, but 7 years after takedown my sphincters were damaged during my fistula surgery. The repair (same as you described) was performed. It improved my continence, but not completely. The muscle is completely intact, and without defect after the overlap/tightening repair, but the muscle tone is very low.

Before you do takedown, they should be able to do manometry to see what kind of tone you have going on. Even with my very poor muscle tone in my spincter, as long as I used thickening agents such as lots of immodium, metamucil, and either paragoric or codeine, I was able to maintain pretty decent continence for 12 years. Unfortunately I recently developed chronic pouchitus, which causes watery stools, so I am back to having more difficulties with continence than i would like. I am actually pursuing a new treatment that was FDA approved last spring, that involves a sacral nerve stimulator. (They said they wouldn't consider a muscle flap for me, and I don't have enough rectal cuff to try an artificial one)

If I were in your shoes I would do biofeedback training and then have manometry and if those numbers looked pretty decent, I'd go for takedown. There are several strategies for thickening, and if in the end, nothing else works, you know you can go back to the bag. For me, since my repair, even with the pouchitis, I still have fewer hassles with the incontinence than I did with the ostomy, but of course I am just one person, who really doesn't want to go back to the ostomy unless it is my absolute last resort.

First, the function you have now is not necessarily indicative of your function after takedown. Part of that is because of the increased small bowel length after takedown (improving fluid absorption).

Yes, you may continue to have issues with dairy. It happens.

The j-pouch may or may not be comparable to your ileostomy pouch. At first you will be running to the pot frequently, but this should improve time. Only time will tell.

Jan

The leaking is normal at this point, even with a non-injured sphincter. You can wait to practice kegels after your reversal surgery but I recommend you go ahead and start now. I had a traumatized sphincter due to surgery and ended up in the rectal physical therapist's office. She was able to identify which part of my sphincter was weak and assign exercises to strengthen it. Worked like a charm. The sphincter is a muscle and like any other muscle it needs exercise. You may have to do occasional kegels for life to keep it toned.

Sue

JJA - I waiting to hear from my doctors office about getting the sacral nerve stimular surgery. It nice to hear another j-poucher is considering it. My doc said it's not been done on j-poucher.

I failed the manometry last Wednesday, the next step is getting pre-approval from my insurance company.

Thanks to you all! I truly appreciate all the feedback. I'm feeling not so nervous and better prepared for my next appointment. Nice to know that some of things that I'm experiencing are typical for where I am at this stage of it all. I am doing the kegels now in hopes that this will make the take down more successful. Also, think I'm going to go ahead and make VSL#3 part of my weekly routine to help avoid pouchitis. Thanks again! Appointment is middle of February. Hopefully the take down will follow short after. Wish me luck!