Re: Saw the surgeon today regarding adhesions-Chris

From: Christine M. Smith (
Thu Sep 2 07:51:17 1999

At Wed, 1 Sep 1999, Ginny King wrote: >
>I'm sorry if you have already answered this but I get confused and want
>to understand. The Celebrex is helping your SI pain, but you still have
>the other pain in the LRQ? I think I told you this before as well but
>one of my worse pain incidents happened after I had been very sick and
>had stayed in bed for a long time. When I tried to get up my legs would
>not work at all and the pain running down the sciatic (sp) nerve was
>incredible. Once I forced myself up I was able to get around. It was
>at this time that they did the xray and came back with the diagnosis of
>arthritis in the sacrum. It took two years to link this to Crohn's. And
>your right, the pain from aerobics hits me 24 hours later as well. I am
>sorry to hear about your mouth ulcer, it sounds painful. Can't Crohn's
>cause ulcers in the mouth as well? I'm glad I have not had this problem
>and hope I don't start. I'll try to find the toothpaste or use the
>other kind you suggested to see if it helps the burning. The medication
>my GI gave me has helped with the burning in my eyes, but not the mouth,
>so maybe it is the SLS. Off the subject, do you have any good advice
>for handling the emotional side of the pain? I am really struggling with
>this as I hate to be out of control. Where I find myself now is angry
>all the time and I hate it. I don't know how to tell others that want
>to help how, as I don't know myself. Thanks again. Ginny

Hi Ginny: Don't apologize for being confused. The doctors are confused too. I'm sure part of the problem is me in that I don't communicate very well about the pain. I have it all analyzed and compartmentalized in my head but for some reason can't get this across to them. (in the 15 minutes you get with them) The best I could do was with the pain doctor when I told him I was obsessed with the pain and it was ruining my life. So what does he conclude- "definitely some degree of depression here." UGH. What did he expect me to say "Golly gee, this pain is a nuisance but hey, no problem, I can handle it." My only hope is my long term relationship with my pcp coupled with my persistance or else a severe flare that the doctors can't ignore. What the celebrex seems to have done is separate the different pains from one another. It's hard to do that when you have pain from different sources. Celebrex has helped the deep, aching, boring pain on the right side (which is what was really getting to me) plus the pain in the back rt SI joint. What I am left with is some residual burning type pain on the right side, just enough to remind me that my problem is not solved, only covered up. I have no idea what this is (it could be something else like the adhesions, or the bowel, or it could be breakthrough pain from what I think is the SI pain) but I can function with it. It's hard to discuss with the doctors what this is when they haven't yet agreed what the problem is! That's interesting about your pain from prolonged lying in bed being relieved (somewhat) when you got up and around. You always think of bed rest for back problems, but my pcp did say that what you and I experienced pointed towards a lumbar-sacral problem. That really surprised me. As far as handling the emotional side of pain, I'm no help there. I have held out with my normal routine for as long as I possibly can but am starting to give in a little. Yesterday my husband remarked I had quite a puss on and so I just said "well, you have to understand I am in considerable pain." (from the mouth ulcer)but I haven't been very open with people outside my family. Maybe the anger etc. is something you just work through as time goes on. You are one step ahead in that now your problem has a name and doctors can deal with that. I think that I would be more willing to open up with others if I had a label to put on it. Every aspect of chronic illness is very frustrating.


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