Hi Kiwi,
Yup, I hear you and understand...I have had sacroilitis for so many years that I can no longer remember what it feels like not to feel that pain...and it is funny what you said about post op...The pain dissapears for a few months and then slowly creaps back until it is in full flare again...I alternate between over the counter anti-inflamatories and Tylenol 3 months of each and prescription strength anti-inflamatories during severe flares (+ omopral for the stomach lining) but my GP no longer wants me on any anti-inflamatories because he is afraid for my kidneys...He recently prescribed something much stronger in pain meds but I refused (they scare me to death and I have a very addictive personality) so I take 1000mg of paracetobol 3xs a day...funny but what actually help is walking...with inflamation it reduces the pain but you need to take it very slowly at first and work your way up...I did it for years, an hour every morning up until last month when the pain got so bad that I couldn't any longer...I miss it because it did give me a about 4hours + of relief...
I see a good Chiropractor about 1-2xs a week depending on how bad I am...She doesn't just crack things but massages them and does deep tissue massages...heat also helps and hot baths are fabulous (I sleep in the tub sometimes because floating releases the pain)...Hubby has promised to get me a good quality jaccuzi bath this year if all goes well...
For Chronic pain there is no cure but you can treat it as much as possible...I also sleep with 3 pillows, one is a long body pillow that I 'hug' when I sleep and throw 1 leg over it to release the pressure on the sacrum...
Hope that some of this helps
Sharon

Thanks Sharon, Glad (but not for you!) that I am not the only one. I was so relived when it had gone as it way way more crippling than the UC itself.

Do you see a Rheumatologist? I was prior to Sugery, but with my GI decided I didn't need to see her anymore as the pain had gone. Do you have any signs of anylosing spondialitis?

Interestingly, the flare ups have coincided with developing Pouchitis, so I am wondering if the whole autoimmune system is switching on too much in response. What do you think?

Now a spa bath sounds perfect, shame Father Christmas has just been!! Heat helps me, it is summer here and hot but I have been lying on my electric blanket which has been driving my Partner mad. Trouble for me with massage etc is that even the slighted touch in that area is agony. Just in the sacroiliiac joints at the moment, hoping it doesn't return to the pelvis and hips.

I am taking paracetamol, tramadol 100mg 3 x a day, with 10mg oxynorm for breakthrough. This is way less than before (daily 400mg tramadol, 160mg oxycontin plus oxynorm). Annoying as I was down to parcetamol and occasional tramadol. I am lucky thatI had absolutely no withdrawl problems and actually have never experienced a high feeling even on the high does, but I do not want to get on that tolerance ladder again.

Thanks
Caroline