Hi UC wife....basically the same thing that Aquafly just posted is where we are at. Hubby was in the most extreme pain and discomfort for a month before I finally could not take it any longer and insisted he go to the hospital. That was mid may - started on the Imuran along with 40 mg of prednisone. 3 1/2 months later he is tapering and now on 20 mg of prednisone. We will taper now at 2 1/2 mg intervals every 10 days. Not sure what we will be doing at the 10mg dose - if it will still be 10 days reducing by 2 1/2 mgs or possibly one mg at a time as some have mentioned on the board here. So far so good - I think the Imuran is taking over however he is so so tired. He does still need the pain meds which concerns me but it is the only way he can be functional.
To our friends and family with his not so good days they think it is not good....however in comparison to where he was even on his current lousy days it is so much better than where he was at mid May.
Hopefully the tapering can continue and the Imuran will work more and more. The colocourt enemas also seemed to make a difference in his feeling better.
I know exactly what you mean. He does not go on the computer and I am the one like yourself who prints off stuff for him to read, I relate various things to him and I take notes like mad from all the great voices of experience here and sort through and make my notes to discuss with the doctor and him. He actually doesn't mind - he tells me to share info with others since everyone is so
open and he knows how much this has helped me too.
I got the packet from Mayo Clinic and started filling out all the forms tonight...some of the questions I need to go in "the way back machine" to find the answers. Too tired and set it aside to finish tomorrow or the weekend - need to go through his medical records. I WILL make a copy and put it somewhere so I'll have all the info if and when needed again....and again....lol.
Sometimes I get a little aggravated as it is all left up to me - I'm the secretary. But it wouldn't get done properly if he had to do it himself and it's partly my fault - I've spoiled him for 39 years so I don't think I can teach that old dog new tricks right now....
It's a good thing he's a good man and has been a good partner all these years or I would probably be very resentful. (I wouldn't be honest if I didn't admit I do get resentful at times at the disease and what it has done to him. We all have our moments - our "pity parties" as someone called it...human nature for sure.)
Honestly though his hands are too shaky, the fatigue and discomfort makes it such that he couldn't focus and concentrate even if he wanted to do it. I am amazed at all the people who have to "do it all" and dig down and find a way regardless and don't have someone to pick up the slack for them. That is without a doubt very difficult. My husband comments and is quite impressed at the stories I tell him and doesn't know how people do it and also be able to be at the computer helping others and looking for ways and info to maybe help themselves too. He just can't sit at the computer for any length of time - uncomfortable as well as the attention span part of it. So when he does get on the computer he has other things to tend to.
So UC wife just hang in there with the rest of us and hopefully there will be some info you will get from here to help hubby out.
60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07 July 07 good days & bad days 75mg Imuran 40 mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg