My husband had UC that flared and never went into remission. After trying everything he could and once he got off prednisone he stayed off it and would not go back on it due to steroid dependency and the gamut of side effects that were life altering.
The pain became unbearable and he would not consider surgery. Was not ready for it. His local GI was very sympathetic and did prescribe pain medication but it got to the point she referred him to a pain management specialist he saw every month. He was monitored and the type of meds could only be prescribed on a month to month basis. There was random testing done while he was under this program and he had to promise that this doctor would DEFINITELY be the only doctor he would get pain medications from.
This pain regimine worked to keep him somewhat comfortable and that lasted for awhile (about 2 yrs) and then that even changed. He thought it was a way to deal with it, cope with it but honestly it wasn't. He would be somewhat functional here and there and accepted this as his new normal. However there was not much I could do but support him and how he chose to deal with things. Surgery had to be something he wanted to do and not be pressured into it by me or anyone else.
Fortunately he realized he could not keep going like this and agreed to surgery. Within 2 months after his surgery he was totally tapered and off all pain meds which was a great thing.
I am detailing this as I honestly don't understand your exact condition but if you have a doctor who will not prescribe pain medication as many of them do not want to do this for a lot of reasons (Fed regulations are getting stricter) then maybe you might want to ask about a pain management specialist and how that will help you.
I know there are 2 schools of thought on pain medications but I honestly hate to see people in pain and endure pain if there is something that can help them. But again long term brings its own set of other issues too.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free