I would suggest you contact Dr Bo Shen at Columbia Pres.  he is doing video visits.  I sent an email last Thursday and had an appointment on Monday.  He knows more than anyone in the US regarding pouch issues and thinks out of the box.  bs3270@cumc.edu. 

I saw Dr Bo Shen years ago when he was at the Cleveleand Clinic, is he now in New York City?  Willow, the problem I now have has nothing to do with the pouch, my pouch is okay, but the muscles in my bottom have stopped working, thus making it almost impossible to move my bowels with some type of product like Miralax.  I have a video visit with a doctor from NYU who specializes in this, although I don't know if they can or for that matter anyone can help me.  I cannot  have a pouch again, at the end I became very allergic to it and was rushed to the hospital several times, it would get puss that formed where the bag was and would just fall off, one of the worst things I had to go through. Thank you so much for your advice, it is very appreciated.

I experienced extreme rectal pain when I would go to the bathroom. It was related to exerting too much force and in turn I would have muscle spasms. I wound up doing pelvic floor physical therapy. This was suggested by Dr. Shen as an alternative to having surgery, although he noted it was a long shot. However, it did provide me enough relief to continue on without surgery. You pretty much learn how to better control the muscles in that region and more effectively use them. It may be worth a shot?

What can happen is that the cuff can restrict over a period of years due to scar tissue, even more so if any pouchitis is present in the area. In the UK slight dilatation is carried out You may notice that your index finger will only just pass through the cuff, ( connective tissue between the pouch and the outlet) if that it the case then dilation may be required. I myself am struggling with a similar problem. 

MS Shampan and Orphius 77-Thank you so much, this week I am getting physical therapy  via skype by a Dr who will try to help me, I hope to God I can get help.

Stay well and God Bless

I 100% agree with getting pelvic floor physical therapy.  Over the years, I’ve seen specialists in Chicago and London and am now living in Chicago again.  For me, finding a pelvic floor therapist that also has a speciality in Dry Needling was an absolute game changer.  While I don’t find it to cure me, it improves my situation greatly and I can go longer periods of time without problems.

Thank you Mary O., however don't know what dry needling means? Is pelvic floor  therapy a series of physical therapy?  Thanks again, going through so much.

Dry needling Is performed by physical therapists. It looks similar to acupuncture although the technique is different. It is very effective around the whole body and there are physical therapists that have a specialty of dry needling the pelvic floor. They insert the needles in your hips and butt. It is somewhat uncomfortable but gives amazing relief. They are also specialized in performing manual internal work rectally (and vaginally, for women).  The therapist can help retrain the pelvic floor to react properly.  

Hope that’s helpful. There is loads of info online too.  once you read up on it, google “pelvic floor dry needling” and your city. There aren’t tons of p/t’s that do it but it’s out there.

Good luck. 

Mary O- Thank you very much. GOD BLESS AND TAKE GOOD CARE.

Michael

Sorry. Deleted my to start its own post rather than hijack this one. 

Did you see that there is a new thread about this subject?  Some helpful tips were discussed, including an interesting program at the Mayo Clinic.

Mary O.- Thank you so much.  I am going to NYU who also have a program, I am doing it with a pT specialist via skype, just started.