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Hi all,

I've had my J-pouch for 17 years. In August the bm frequency and leaking got very bad and Cipro didn't help this time. I was considering J-pouch removal and went to talk to my surgeon. 

He suggested that I first try stretching the anastomosis, first with a procedure under sedation, and since then manually every month or 2 in his office. It is very painful and doesn't seem to help with the problems. he insists that it does help and hasn't answered my latest email asking how. i don't want to alienate this guy.

I'm thinking about cancelling my next appointment with him. I have found relief using Flagyl for now. What do you folks think. Is this painful stretching worthwhile?

thanks,

Dan

 

 

 

 

Replies sorted oldest to newest

I have had this done several times under anesthesia. It lasts for a a very short time and now I have additional scarring as a result. I too get anal relief from cipro but hate the drug. 

I should have had surgery for this a couple of years ago as now  I also have anal ulcers/fissures due to the stricture and scarring  in anal canal. 

Im on my way right now to meet with DR Remzi to set up a surgery date. Not sure he can save my pouch. 

I would suggest another consult with a reputable jpouch surgeon who has a lot of jpouch surgery expetience. Anal dilation is not for the faint of heart  you could have a stricture 

 

 

 

 

 

J
Last edited by jeane

Dan-

Your surgeon sounds like a fool. You are the expert in whether his treatments are helping with the symptoms you’re having. You’ve observed that the treatments don’t help, and his contradiction of that is simply astonishing. Even worse, you are getting the risks of these dilations without any benefit. It’s possible that you have a stricture that’s just very stubborn, but the fact that Flagyl is helping makes that unlikely, too, or at least not the cause of your problem. This sounds like garden-variety pouchitis with the complications of a now-ineffective treatment, and a stubborn, unhelpful surgeon.

A single antibiotic has the risk of becoming ineffective over time. Cipro stopped working for me. If Flagyl alone had worked I would have happily switched to that, but in my case I needed a combination of the two.

Do you have a gastroenterologist? I think you really need one who is knowledgeable about J-pouches. Flagyl sounds like a perfectly good choice for you right now, though I can’t tell whether you got it from your surgeon or not.

Scott F

A stricture is simply a narrowing around the circumference of the affected area, almost like a rubber band were wrapped around it. It can be caused by thickened, fibrous scar tissue or other things. If it isn’t causing your symptoms, though, a more thoughtful conversation about treatment is critical. It’s hard to tell if it’s been dilated enough, for example, if your condition doesn’t change after treatment, and you certainly deserve a different explanation for why treatment might be necessary anyway.

SInce you seem to have pouchitis right now, your gastroenterologist is likely to be the better advisor, IMO.

Scott F

So .much for the benefits of electronic communication with Medical Providers. My surgeon called me back this morning. I think the problem is he's just not a computer person, hence the short answers and in this case no answer. He was very accommodating and understanding and agreed that we should stop the manual stretching. I'm relieved because I've always liked this guy and I believe he is at the top of his game in case I ever need him again.

With the help of Flagyl and Cipro combined I'm down to 8 to 12 bms a day, and that is immensely livable to me. Well see what happens when I stop the antibiotics in a couple of days.

Thanks for all the replies.

 

Dan

 

N

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