Defecography results

John,

The doctors at Mayo Clinic in Rochester did a similar test on me last fall.  They say my pouch is not emptying properly and the residual is what is making me miserable.  My pouch acts like I still have chronic pouchitis, but other tests  indicated I have "no active disease", evidently because of the Entyvio infusions I'm getting every 6 weeks. 

They say what I have is Non-Relaxing Pelvic Floor Dysfunction, and I am scheduled for a 2 week therapy session at Mayo in August to retrain my pelvic floor muscles.  Evidently my muscles are squeezing instead of relaxing when I try to "go".  They say this condition is more common when there are complications in the take-down surgery, of which I had way more than my share.

Sounds like you may have already had a similar therapy.  I am not overly confident the therapy will help me, but this seems to be my only hope for improvement.  I'm having 12-14 BM's a day and almost constant pouch discomfort and sense of urgency for the last 3 years :-(. My pouch is 18 years old and I've had chronic antibiotic resistant pouchitis since day 1.

I hate my pouch, but hated the ostomy I had for 6 weeks before my takedown even more.

I hope you are getting some relief.

Thanks CG, appreciate your response. I still haven’t heard from my doc post-defecography test which is annoying. I started using Canasa (generic) suppositories that I had on hand since I’ve been experiencing a bad flare-up of anal pain and discomfort.  Maybe it’s all related to what you’ve suggested—the non-relaxing pelvic floor dysfunction, although the radiologist casually said my pelvic floor looked “ok” to him right after the test - however he also reported I hadn't fully emptied. I’m finding that if I shift around on the toilet seat or do a kegel squeeze or two, that helps stimulate more stool to drop. But if I push just a little too much—and in my mind it’s slight (no grunting or hard strain, just taking deep breaths) I can bleed a little and get an anal pain that lasts for days or even longer. I don’t think it’s a fissure because it aches and is very uncomfortable when my pouch needs to be empty. In other words, when I sit for a short period of time, my bottom aches when I stand up until I empty.  Is that from the pelvic floor muscle? I don’t know! Maybe it’s cuffitis. I’ve always burned somewhat when defecating - not like a cut - and have to use iLex skin barrier afterwards, which I have had to use ever since take down 2 1/2 years ago.  Anyway, that’s why I’m back to using the suppositories. I’ll post again when and if my doc calls me this week with his thoughts. 

I have similar issues.  This won't solve your issues but are you using a Squatty Potty?  Raising my legs helps me, although it definitely isn't a cure.

BTW, have you looked at another post this week titled "Pelvic Floor Therapy"?  You may find it helpful.

Hi Mary O, yes I purchased a squatty potty but it wasn't much help and was clunky and in the way (small bathroom where it was located). I also checked out the PF therapy thread you pointed me to. Thanks!

@Jfill21 I am experiencing a similar issue. Have you found any solace? What did you do at the physio?

@coloradoguy have you started at the Mayo yet? I would love to go to something like that but it’s so expensive (I’m Canadian so it’s all out of pocket, I don’t live within driving distance, and the exchange rate is brutal.) 

Thanks for the reply. I wish I could do them Mayo program but it costs so much. I called about it and got all the details about assessments you need prior, waiting lists, costs, results. I could try to take out a loan. Or something. If it was near guaranteed to help. I do multiple warm water enemas a day with little relief. I am trying lots of dietary changes but so far, no dice.

Any chance you could go to a local physical therapist who specializes in or has experience with PF? I finally found a therapist 2 hours away and went 2x a week for four months. It was helpful but not for the inhibited. 

I do see one skilled in pelvic floor but started to doubt her experience in anorectal disorders versus vaginal/urinary. I did find a new one — 90 minutes away — that does balloon work and biofeedback. I feel that will be a better fit. Did you see great improvement or not much, considering your interest in Mayo? What did you do in and between sessions? Twice a week would be hard for me financially, but I feel like I will do anything at this point.

It did help as I had a lot of recital pain and burning. My therapist used biofeedback which I found fascinating—although I disliked the whole experience. Having sensors placed up near your anal canal and elsewhere and then trying not to release stool (although I was told don’t worry about it) was difficult.  But I did learn techniques to help me not strain which resolved much of the rectal pain I had been experiencing. In between sessions I had a list of pelvic muscle exercises and stretches, which I still try to do on a regular basis. I mentioned interest in Mayo only because my GI said he thinks I am still experiencing PF dysfunction and may need more therapy.

Thanks for the reply. I am seeing a PT right now but it's hard to do internal stuff as I sort of have to go to the bathroom in small amounts all day. I would do anything to feel better at this point. I'm bed bound most of the time.

I've been in pelvic floor physical therapy for years.  The single biggest thing that has helped me with this issue is PF dry needling.  I've seen a few pelvic floor therapists over the last year that do it.  I was living in London and found a woman there that was outstanding.  I'm back home in Chicago now and have a good person here (a man!).  I saw a couple of women therapists who did it too but they weren't outstanding.  

The next biggest thing that has helped me is CBD. I've just been using it for about a month. Neither fixes me but allows me to lead a relatively "normal" life (whatever that is when you don't have a colon and have a myriad of other health problems).