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I'm 54 years old and I've had my j pouch now for about 2 years. Recently I've been experiencing great difficulty in emptying my pouch. My anus feels like it's shut tight and although I have a tremendous urge to go and know that it's time to, it won't relax to allow me to empty. I land up having to really strain- it feels sometimes like I'm trying to pass a golf ball! As a result, I get bleeding from peri anal tearing and a very sore butt hole. Often its agonising. I've been back to my surgeon who has examined me under an anaesthetic and he says that the pouch is great with no signs of inflammation or pouchitis. He also says that there is no stricture at the pouch anastomosis but that's not what I feel. I've drastically cut down on my sugar consumption, not that it was high anyway ( I'm a dentist so let's hope not!!) as I read somewhere that it can irritate the pouch and have stopped taking loperamide. I'm avoiding all veg and fibrous foods as I'm terrified of these things getting stuck.Does anyone out there have any experiences of this sort of problem? Any advice or feedback would be much appreciated.

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Did the surgeon offer you any treatment at all? If not, shame on him.

 

The pain from anal fissures can cause spasm of the anal sphincter, leading to a vicious cycle of misery. If that's what's going on, there are some treatments for anal fissures, though they aren't perfect.  Sitz baths, nitroglycerine, and nifedipine are most often mentioned here, but I wonder if a local anesthetic might enable the muscles to relax (and thus let the fissures heal). Even Botox injections can be used when nothing else works. There are other possible causes of sphincter spasm, but you need to find a doctor who will let go of the scope long enough to take care of you. This should be slightly easier to figure out since the pouch now has a clean bill of health. Do you have a gastroenterologist?

Last edited by Scott F

Thanks for your reply,Scott.The surgeon has put me on flagyl for a fortnight and given me diltiazem cream to apply. I already have some local anaesthetic gel which I can apply after I've been to the toilet to help with the after pain..It doesn't do much for the pain when applied beforehand as it feels like it comes from higher up than I can reach with it. He has suggested I see a specialist nurse who deals with pouchers who perhaps can offer advice on pouch emptying, toilet techniques and positions etc and also diet advice so I'll give her a go. I do have a gastro doc but he wasn't a great deal of help and asked me if I regretted having the pouch and would I prefer to go back to the ileostomy!! My wife is a Botox practitioner(also a dentist) but I fear it could be a marriage breaker if I asked her to inject it into my asshole!!!

I had j pouch surgery 20 years ago and have been generally doing well since then (but have had numerous unrelated illnesses since then unfortuneately).  

 

My anal sphincter has been tightening over the last 5-10 years, which was initally presented itself during my annual checkups with my gastroenterologist.  A few years ago, I had treatement with a pelvic floor physical therapist.  We made a lot of progress but I had to stop because I had such tender skin in my perianal area (I've since been diagnosed with multiple allergies which were causing the skin problems and much of the skin issues have been resolved).  

 

Several months ago, the tightness was back to an extreme.  I was in severe pain and was hospitalized (while out of town on vacation!).  

 

I've been back in physical therapy with the same specialist (I live in Chicago).  In addtion to seeing her once a week, she has me using dilators at home to help stretch the sphincter.  It has helped tremendously.

 

Best of luck to you.  It's an awful awful disease.

 

Hi Mary,
I'm curious as to how you were diagnosed with skin allergies. I have never considered this with the anal pain also what does a Pelvic floor specialist  do.?  Is your GI aware of the self dilation ? I plan on talking to mine next week about the specialist and dilation.  to see if both could help me   I was in so much discomfort the other night I probably should have gone to the hospital.
My skin was highly inflamed for a really long time (years). I saw several doctors about it (GI, GYN, and internist). They tried various medications but none really helped. Finally, one of them referred me to a dermatologist who had a specialty in the vulva area. I saw her for almost a year with some progress. She eventually referred me to another dermatologist who did patch testing for skin allergies. The results were enlightening, to say the least. I found out that I am allergic to a lot of stuff ... things that are contained in almost everything on the market, including some of the topical medication that I've used and nearly every other product I used (i.e., soap, detergents, makeup, etc). I now have a "safe" list of products to choose from. I'm seeing the vulva dermatologist again and we are still trying to find the right balance of topical drugs; things have improved tremendously though since I began using products from the "safe" list. My gastroenterologist was the one who referred me to the physical therapist who specializes in the pelvic floor. I was so constricted, none of the dilators would have worked a few months ago. Things are much better now. I haven't seen the GI since she referred me to the physical therapist but I know the physical therapist sends her regular updates on my progress so I assume the GI is aware of the dilator use through those reports.

One thing that helped me was Proctofoam - a steroid foam that was inserted into the anus. There is another cortisone foam that is 10% steroid - can't remember the name. It is a prescription but helped with the spasms as it was an anti-inflammatory. This is a local treatment. I also would have to take Cipro at times to help decrease the inflammation which would then release the spasms.

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