Hey everyone. I had a defecography test 10 days ago and just received results online in MyChart. I expect my doctor will call this week, but I'm curious if anyone here has thoughts on my report. The reason the test was ordered is because I don't empty fully and therefore have high frequency (8x -10x plus in 24 hrs), and usually experience anal pain/burning during and after defecation, and occasional bleeding. I had a gastrograffin test in January which came back normal, and have had pelvic floor physical therapy. I've had my pouch since Nov 2017 and have never felt "good." I had hoped it would not be the constant focus in my life that it has become.

Here are the defecography results from the radiologist:

IMPRESSION:
1. Postsurgical changes of colectomy with ileoanal pull through.
2. Appropriate function of the pelvic floor musculature.
3. Somewhat delayed and incomplete emptying of the neorectum with moderate post-evacuation residual.
 
Again, just curious if anyone has thoughts on my symptoms and test results  before I have the consultation with my doctor.
Thanks!
John
Original Post

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.

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!

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