J pouch deterioration

I realise somebody has recently posted about j - pouch removal, but I was after some advice if anybody is willing to share.

My j-pouch hasn’t been the success story I anticipated, I suffer from chronic pouchitis, antibiotics have little effect and I am in a constant struggle.

My surgeon has given me 2 options regarding removal.

1. Leave the pouch in and have the ostomy slightly higher up which would mean looser stool and the risk of tumours in the remaining pouch.

2. Remove the pouch totally and have a better stool output but potentially effect sexual and bladder nerves.

Has anyone had this done, or given those options. Really don’t know what to do.

Thank you in advance

 

Original Post

I don't understand why the ileo would be higher up.  Is he talking about a temporary ileo if he leaves your j-pouch in?  I was diverted to a permanent ileostomy first.  When my j-pouch didn't heal up I had it removed 6 months later The permanent ileostomy stayed in the same location.  This is much better than the temporary ileo I had in-between my j-pouch surgeries. It was higher.

Maybe in the U.K. being diverted to a permanent ileo isn't an option.

I have had my large intestine removed totally, so it would be a permanent illeo. Not sure, he just said my options are an ostomy higher up with looser stool, but would avoid the potential to nick sexual and bladder nerves.

 

Is the normal procedure to just have the j pouch removed? DO you (or anyone else) know the chances of potentially hitting these nerve functions?

In my case, ED resulted from my original j pouch surgery.  The use of a medication (Viagra) has produced satisfactory results for me.  Removal of my J pouch many years later produced no additional nerve damage, although the surgery was challenging.  At the time my J pouch was removed, my surgeon in Florida created a BCIR (similar to a K pouch).  I strongly did not want a permanent ileostomy with its associated issues, particularly relating to intimacy.  The surgery went very well and I now enjoy a very good quality of life.  The button-hole size stoma is located below the belt line and no external bag is required.  I mention these options as something you may want to consider, but selection of a procedure is a personal matter best made after doing your research and consulting with your doctor.

The BCIR procedure was recently approved in the UK and is being performed by Dr. Ed Westcott in London.  He was trained by my surgeon, Dr. Ernest Rehnke in St. Petersburg, Florida, who has done well over 1,000 of these procedures.

Bill

I tried leaving the pouch in, it didnt work for me. The stoma was an end illeo but the tension on it from the remaining pouch pulled it, so it was near flush, hard to pouch well. Could probably have lived with that but I started getting lots of secretions, what they call diversion colitis, in/from the abandoned J pouch which got worse and worse so I ended up removing the  pouch, but we left the anus (not rectum  which was gone) intact and didnt get the barbie butt, less surgery. It has worked out well for me.  The do a 2 minute scope every two years to see if anything is going on in my tiny 2-3 inch back pasage. Typically, but not always they remove everything in this surgery, I am the only such case my GI has

There is some risk of sexual disfunction and peeing issues from pouch removal. You need a good surgeon experienced in pouch removal. As I recall the % of issues is quite low for pee problems but higher with sexual disfunctions.  Every surgery is significant, I would recomend just removal get it done and make sure you get a good stoma with the opening 3/4" + above the skin surface. Good luck

Richard-

Antibiotics currently work very well for me, though I had to step up to combination therapy (Cipro + Flagyl) a few years ago to keep them working. If that failed I’d try a biologic medication before considering retiring (removing) my pouch. Plenty of people get good results with biologics for chronic antibiotic-resistant pouchitis. If your surgeon hasn’t suggested this then IMO you need to consult a knowledgeable gastroenterologist familiar with the *medical* management of difficult J-pouches. Heck, if you haven’t tried combination antibiotics then this may be a failure of your surgeon’s knowledge rather than a pouch failure. If the right gastroenterologist isn’t available locally then you could consider scheduling a consultation with Bo Shen at the Cleveland Clinic. I don’t know if Shen could do some or all of this remotely, and I don’t know if your circumstances permit it, but that’s what I would do. Good luck!

If you are in the UK (name suggests this) have you been referred to St. Marks Hospital? They are the centre of excellence for bowel issues and also pouch surgery, they specialise in problem pouches. They are in NW London attached to Northwick Park Hospital. My experience is that they are beyond brilliant. I would advise getting your surgeon to refer you for a second opinion before you make ANY decisions. Good Luck!!

Only thing I can say is my surgeon would not give me an end ileo without removing it. She said it will cause problems if it remained. So out it came. She left my rectum in place if I wanted another pouch down the road at some time. No thanks. I'm doing fine with the bag.  I'm glad it's gone. I felt better the day she removed it. 

Long story short. 

Richard.

P. S. 

No problems on the dysfunction part. And she was in there four times! 

I second a referral to St Marks Hospital, London (Harrow)

The surgeons reference to "being higher up"  I believe it's higher up of the intestinal tract and the Stoma will exit at the same place on the abdomen as any previous Stoma.

A section of the small intestine was used to create the J pouch;  so the surgeon has no choice but create a new Stoma in a higher section of the remaining small intestine.

 

TE Marie posted:

My 2nd ileo is a perm one on the left side of my abdomen whereas the temp one was on the right. They didn't put them in the same location.

I guess my understanding is wrong, although I only reiterate what I believed was explained to myself, as the expression was mentioned often prior to the creation of my J pouch and in reference to my Temp Loop ileostomy; it was initially described in such a manner, I actually believed I would have two stomas, one being higher up, so I specifically asked.

Maybe in your case, so much of your small intestine was used to create the J pouch or maybe a longer length was severely  ulcerated and removed and what remained wasn't long enough to reach the old Stoma site.  

I didn't need any extra small intestine for my j-pouch creation nor did I have ulcerated and removed small intestine either.  My j-pouch problems were mainly at the base although I had  chronic pouchitis. I also requested that the perm stoma location be lower in my abdomen than up by the waist line.  My perm is a little lower in my abdomen than my temp ileo was and on the other side.   I'm not sure were I've read about this at but believe it is the case for other's that have needed to have their j-pouches removed. It's a good question for people to ask their surgeons.

TE Marie posted:

I didn't need any extra small intestine for my j-pouch creation nor did I have ulcerated and removed small intestine either.  My j-pouch problems were mainly at the base although I had  chronic pouchitis. I also requested that the perm stoma location be lower in my abdomen than up by the waist line.  My perm is a little lower in my abdomen than my temp ileo was and on the other side.   I'm not sure were I've read about this at but believe it is the case for other's that have needed to have their j-pouches removed. It's a good question for people to ask their surgeons.

I wasn't questioning or contradicting whatever procedures you've endured; after all, I'm just a patient and my somewhat little knowledge of such procedures has only been amassed from web forums such as this or my own experience,

However, I would of thought that when the J pouch is removed a stoma can protrode from a point close to the old stoma site and if positioned on the opposite side of the abdomen, then maybe what remains of the small intestine is not long enough to reach the old site,

Prior to my J pouch, it was often mentioned that my stoma for the loop ileostomy would be higher up. which would result in watery stools and effectively, I would have two stomas; on hearing this, I imagined the worse, until my surgeon explained that I'll still only have the one stoma site but with two openings, although it would be " higher up" within the digestive tract as the 12" below would be formed to create my J pouch.

I have had my j pouch removed. The end ileo is in approximately the same location as my loop was. The location is not usually related to how much small bowel remains. The bowel is not gravity powered. It goes down up and around. ileos are usually on the right side, but not always.

I wanted the stoma to be some lower than I got, as it would make consealment easier. The stoma nurse felt it would would be less prone to leaking if we located where it was originally, so I went with her suggestion. It works well, though a bit hard to conseal in swimming trunks as I knew it would be, so I typically wear a swimming shirt. The main thing is you want a stoma that has an opening that is about 3/4 inch or perhaps more above the skin for easy pouching.

 

Very interesting Ciromancer. On the way to j-pouch removal I elected to be diverted to a perm ileo first.  I was hoping my j-pouch would get better.  I should have listened to my surgeon as had the j-pouch removed 6 months later. These surgeries were at the Mayo clinic and the ileo stayed in the same place both times - on the left. When I had my meeting with the stoma nurse she just marked locations on my left side. My perm ileo works a lot better than my temp one did and I was thinking that is because it is further down the stream, intestines, than the temp one was.  

I guess it really doesn't make a difference which side as long as it works. I agree that further down the abdomen is best. 

So there you go Strange - it can end up on either side 😎

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