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sfgiantsjo
It's been awhile since I've visited! I have had several bouts of extreme lower back pain in the last 6 months or so. (My jpouch is about 5 years old.)

At first I thought it was just "normal" back pain, but after repeated episodes, and no "injuries" I can think of, I am beginningto fear it may be something pouch related.

It is very very low back pain that feels very tight and hot. It is so low, it sometimes feels like it is butt muscles, and not back. I start to feel so locked up and tight it's like my low back and glutes are completely clenched. Does this sound like it could be Pouch related? After searching on here, it seems like there are issues that could be related? What does AS feel like? Or pouchitis? (I don't seem to have any potty issues.)
I am so tired of the pain, and although my doc has prescribed Naproxen and Norco (for what he presumes is "regular" low back pain - we haven't discussed anything else), those pills do NOTHING to help.

Thoughts?

Thanks in advance - you guys are the best!

Replies sorted oldest to newest

SpookySpookyMember
Sorry you are having trouble. It is possible this could be pouchitis. The reason I say this, is that I had very low back ache when I had pouchitis, almost like dull menstrual cramps, radiating around the upper buttock/tailbone area. Sometimes pouchitis symptoms can be quite vague. Maybe pay closer attention to your bms and see if you've had even a small change. Have your stools been more watery than usual? Also, even mildly increased frequency could be the early signs of pouchitis. It can brew for a long time before you have full blown symptoms.

As for AS, I suppose this could be a possibility too, though I don't know very much about that condition and would defer to others.

Hope you can get this sorted soon!
Spooky
Jan DollarJan DollarModerator, RN, retired
If you rule out pouchitis, with no other pouchitis symptoms, it could be enteropathic arthritis, which is related to ankylosing spondylitis. My initial symptoms (other than the random tendonitis I would have here and there) was upper buttock pain. This pain was not injury related either, and was worse with inactivity (like at night or resting in a chair), and improved with activity, like walking.

At first I thought it was just age catching up with me, but when it went on for months and months, my primary MD sent me to a rheumatologist, who diagnosed me. That was in 2005. I went from needing a cane to being quite functional. The solution was beginning biologic treatment (Enbrel, then Humira, and now Simponi).

Jan Smiler
Jan Dollar
skn69skn69Member
I second Jan but might add that if it is radiating from your buttocks downward towards your leg or you are also getting knee pain or aches it might be sciatic nerve pain...sometimes you end up with both...I have severe sacroilitis with a hint of sciatica for the fun of it (do not make me bend and lift or I will scream!) and my only relief is mega doses of anti-inflamatories during a flare along with muscle relaxants and a lot of walking...the more I move the better I am...plus regular adjustmets from the Chiro and/or yoga or Pilates to keep things limber in there.
The huge Swiss ball goes a long way to keep me from sobbing in pain...I drap my back over it and gently push/stretch until I have worked out some of the pain, usually before bedtime so that I can get some sleep.
Sharon
skn69

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