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6 replies

Can pouchitis spasms be do severe that they bring you to your knees in pain???

M MaryMomof3Member
Hi. I had a colectomy, j pouch formation, & loop ileostomy 7/15/14. For 2 months after surgery I had a lot of pain. It finally stopped(! Smiler) in late September. I had 9 AWESOME pain free days. Then my surgeon did a flex sig with me under complete sedation & the pain for 2-3 weeks after was so insane. Lots of spasms that would bring me to my knees, crippling pain that at time made it difficult to walk...it seemed to be a combo of possibly a pouch infection & sciatica...Then it finally went away for the last 4 days. Again AWESOME! But these crazy spasms are back all of a sudden. Can pouchitis spasms be so severe they bring you to your knees in pain, breathless, & nauseous- literally moaning (trying to stop yourself from screaming?). I really need answers. I am so confused. ! I have been on cipro 1 1/2 days & no relief as of yet ...
What is the BEST test to reveal pouchitis? I have had several cat scans which don't show it! My surgeon doesn't seem to be able to tell me what's causing this pain. My reattatchment date is 12/1/14. Should I get a second opinion before takedown to determine what's causing this pain???
I really need advice! I just finished my period which always seems to trigger pouchitis- if that's what it is...also I think I am getting a yeast infection....
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L LjzMember
Hi Mary, I'm not an expert by far, had my take down in March, and while I've had lots butt burn, have not had other "pain". I would want to determine cause of pain and would think your Gastro doctor would be the one to do scope of pouch, like colonoscopy but just pouch. Assuming, but not sure, they can do it if you're hooked up and ready for takedown. My surgeon's nurse, who is my contact person for follow up, referred me back to my GI for my scope to determine if I had Pouchitis. I do not know how often severe pain accompanies pouchitis. Hopefully someone else will jump in here. Laurie
J JJAMember
I have had pouchitis on and off for about 17 years until I developed chronic pouchitis over the last 4 or so. I have never experienced and "spasms" with my pouch or really any kind of "pain" related to my pouchitis.

My biggest pouchitis symptoms have been very watery stools, incontinence (especially at night), and a feeling of rectal pressure.

The best way to determine if someone has pouchitis is typically to do a scope. You seem to indicate you were scoped a couple weeks ago-what did they see? Was there any evidence of inflammation?

"pouchitis" can be caused by different things and can be experienced differently by different people, but from being on these boards for awhile, I don't think pain and spasms tends to be a "typical" pouchitis symptom.

I'm sorry you are going through this and I hope you find relief soon-
Jan DollarJan DollarModerator, RN, retired
I don't know about pouchitis caused pain itself, but spasms/cramping pain from gut distension can most definitely cause severe pain that takes your breath away and cause a grown man to cry. As a post-op nurse, I have seen it. Anal pain can be some of the most intolerable.

But, I just can't say it is consistent with pouchitis. I've never had it, and I am no stranger to pain.

Jan Smiler
GinLynGinLynMember
I have had pouchitis one time during which the spasms and pain were just as you describe. It was excess gas being caused by the infection, and Jan is 100% right about what that can do to a person. The good news is that once the docs figured out it was pouchitis and got me the appropriate meds (in my case, by IV), I was significantly better within just a day or two.

I hope you get answers soon!

Gin

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