Skip to main content

Hi guys, I've just had what I was hoping would be really good appoinent, the first appoinent to discuss the start of j pouch surgery but after the consultant examined me he said my muscles are so bad that they are no longer a ring but a u shape! And that I have no muscle control and that he would be very reluctant to do the surgery, what should I do, has anyone experienced this?

Please help

Replies sorted oldest to newest

Hi Sally,
Yes, not having strong sphincter muscles could be a real problem for a j pouch. You need good control of those muscles, especially in the begining.
Although J pouches were not available when I had my surgery done (back in 1979) I would not have been a candidate anyway because I had practically no sphincter left. (reconstructive surgery got the best of me). So they offered me the k pouch, the same idea but with a continent reservoir and an abdominal stoma about the size of a dime.
They place it low on abdomen around where your apendix is (or was?) and you empty your pouch with a small tube that you push into the stoma...you then cover the stoma with a large bandaid or kleenex.
The surgery is more or less the same except that they need to build a one-way valve which is the hard part.
Recovery is the same too but you do not have the problem with incontinence and runny stools. You have full control.
When the do the procto-collectomy they then close your bottom up so that this is a one-way-no-return kind of surgery.
The weak points are the delicateness of the valve and the need to be really experienced when building one.
You can look it up on the net and check out the k pouch section of this site and look up the surgeons who do them in your region.
One last thing....k pouches are good for UC or other such illnesses but can be off the table for Crohns disease in some cases.
Hope that this helps you.
Good luck
Sharon
skn69
Thanks for the help guys I really appreciate it, I just feel so low I didn't even think the surgeon might say that it might not happen, I think the only thing that helped me deal with having the ileostomy for the last 2 years was thinking I couldn't have the reversal eventually and now everything just seems so bleak...so for being so miserable, think I have to get my head around it all, at the moment the consultant has sent me for another endoscopy, then a test to check the muscles using ultrasound, and then some therapy to see if that helps the muscles :/ so far not so good Frowner all of this is just made so much worse because me and my husband are arguing way to much on top of it all Frowner
S
Yes, I would think that it means that there is a wedge of sphincter (approximately 1/3) that is either nonfunctioning, or functioning incorrectly (such as contracting when it should be relaxing). The position is between 10 o'clock and 2 o'clock. None of this is telling in regard to whether this is temporary from trauma to the nerves, spasm, or permanent damage. I'd call your doc to explain the relevance of it all, and to find out if pelvic physiotherapy or biofeedback would be useful.

I believe that only the external sphincter is under conscious control, so I would think that kegels would only be partially effective (but worth pursuing!). Pelvic physiotherapy is mainly for pelvic floor dysfunction, where the muscles are in spasm or working in a counterproductive way. If there is an actual defect within the sphincter itself, there is a more difficult problem, and may require surgery or other invasive options.

I don't mean to reduce your hope, but just let you know that this may be more involved than you might think. Hopefully, it is just a temporary blip.

Jan Smiler
Jan Dollar
Thanks everyone, really helps being here Smiler has anyone ever had the anal manometry test done? And does anyone know the numbers they got? I've bought the biofeedback machine and it wasn't cheap! I had to literally beg steal and borrow, (without the stealing!) I really really want the j pouch op I'm only 28 and I've had the ileostomy since I was 25 I've had 2 sons, and as bad as it sounds I havnt even been able to wholeheartedly enjoy the whole time.

When I use the machine it gives me a top reading of around 40 Frowner apparently a reading of 100-150 is good and 250 is excellent :/ can't see myself getting there! Has anyone or is anyone going through a similar situation???

Sally xxx
S
I commented on your other thread, but I had my sphincter damagerd during surgery for an anal fistula. I was able to have a sphincter repair surgery to tighten the sphincters. (Basically they cut out the weak defect part and then take the good ends, overlap them a bit and sew tight). It helped greatly, although did not solve the problem entirely, although it helped enough that I was able to "manage" living with the incontinence.

I assume they would first complete the tests you mention-I have had them all-not the most comfortable, but doable, but so long ago I can't recall any of my #s-sorry. If they determine your defect is a good candidate for surgery you would probably have that repaired first, then do more biofeedback to get it as strengthened as possible, and then move to the jpouch surgery if they think you are a good candidate.
J

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×