Hi there!
I've had my j-pouch for 25 years now, with relatively few complications until recently when I began having difficulty emptying completely, even with watery output. It's led to 2 blockages this year - both resolved without surgery, but one with 4 days in the hospital with ileus afterward.
I'm on Cipro daily for chronic pouchitis now, and have a history of occasional fissures (maybe 1-2 per year, with one abscessed and repaired surgically about 6 yrs ago). I've also had 4 dilations of scar tissue at the anastomosis site this past year, with no relief of emptying troubles. Straining (bad, I know) has caused a growing diverticula in the pouch, and hiatal hernia.
I've recently seen a motility specialist, who ran defecography and anal manometry tests, and said it doesn't seem to be a sphincter muscle problem - it's a narrowing/stricture issue. But my gastro (after a recent scope) says the stricture is open now, and feels that it really IS a muscle coordination issue. I saw a colorectal surgeon today, who did an exam, looked at my tests, and thinks that although the manometry was perfectly normal, there was something on the defecography that suggests it *could* be a muscle issue.
SO, she's recommending 6-8 wks of biofeedback and Botox injections, with the warning that the Botox could cause incontinence for the 3 months it's active, especially for pouch people. I'm wondering:
--since they ran the manometry test twice and all was normal, isn't this the same thing they target with biofeedback? If my 'relaxation skills' were normal during this test (with electrodes, and having you push, relax, repeat, etc.), what would biofeedback do differently?
--Botox - is this helpful for anyone on the boards? I searched here and found some comments on incontinence and failures of Botox, but nothing positive thus far.
--which leads me to the question for the pharmaceutically minded: would it be possible to try a topical paralytic like nifedipine cream or maybe the belladonna and opium suppositories to see if the sphincter paralysis helps with emptying, before jumping to a 3 month commitment with Botox? Is there a topical drug that would come closest to Botox's effects? I'm seeing my gastro's PA next week and will ask for something like this, if so.
--OR should I just skip all of this and make an appt with Dr. Shen? I feel like I'm 'tested out' at this point, with too many conflicting answers from the docs, and wondering if this could be something altogether different than what they're discussing.
Sorry for the length! Any advice is appreciated!
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