Please help (those that know me)

OK! Last week I posted that I have finally come to accept that I have this disease and I have been trying to have a change in my thinking which has really been working well for me. Today I got a call from the Austin GI doctor's nurse about my colonoscopy. She said there was no signs of Crohn's in my colon and that I could taper off the pred. That he wanted to see me in a month if I needed pain meds see my PCP and have a colonoscopy every 10 years. I hung up going WHAT? After thinking about it for a half hour I got the distinct impression they were telling me there was nothing wrong with me. I had told them since I went that my pain was more around the umbilical area and upper R and L quad. So after thinking about it my understanding is that Crohn's can affect any part of the digestive system and just because it is not found in one part does not mean that it is not in another part. Please if this is wrong let me know. So anyway I called backed and asked them about that thinking and they said that is why the doctor wants to see me in a month to talk about that. I asked could it not be in my small intestine or stomach? Thinking that the asacol which is made for the colon might not do it's job higher up. Then I also questioned why when they took me off the Librax the cramps came back. I saw a doc here in Temple who I told the doc gave us the impression that the colonoscopy looked good and that would be a sign that the asacol was working and that increasing the imuran might help with other locations. So I don't know what to think. Maybe it was C-diff and the meds are keeping me feeling bad. I just don't know what to think! I know I have not been able to get off the pred since May cause once it gets down to 10mg/day I get d back but could that just be a side effect of coming off of it and will go away. I would love to get off all this stuff and go back to being normal. I need to know what you experienced people think. Can it be affecting my small intestine or stomach without affecting my colon at the same time? Could I try getting off all the meds without putting myself in danger to see what happens?  PLEASE LET ME KNOW WHAT YOU THINK!!!!!

Thanks in advance.

I agree with Navy about the pill cam and also think you should get a 2nd opinion.

I was diagnosed in Boston but when I moved back home to upstate NY, 3 different Drs. told me I did not have CD. One of the Drs. even diagnosed me and undiagnosed me within a year. He took me off of all my meds and I got rectal abscesses every 4-6 weeks. I am finally taking remicade-not sure if it's helping yet but I am hopeful.

Best of luck and keep us posted!

Ginger

Hi,
Even if I don't know you I hope it's ok if I answer you. I have got Crohns in my upper R og L quadrant, my pain is also more around the umbilical area and upper R-L quadrant. 5 % of all Crohnies got their disease in the duodenal and jejunal area, which causes pain like yours. I have a narrowing in the upper intestines, which leads to pain, cramps and nausea. Now and then I got partial obstructions which makes me vomit and then I get a severe pain. Since I have this narrowing the hospital won't let me do the pill cam examination, but they gave me an x-ray with barium contrast instead. This examination was nothing to worry about. When it comes to food I have to avoid fibers that's in some fruits and vegetables. If I eat this food, I will have pain and swelling for the entire afternoon. If I avoid stuff like this, I feel much better. I am now on prednisone since the middle of july, and my pain has dissapeared. But of course I react if I eat veg's and fruits, as usual with gaz, swelling and bloating. I have also had a colonoscopy. Nothing found there.
The best of luck
From Ingrid

Post Edited (Skjura) : 9/1/2007 6:39:45 AM (GMT-6)

Hi Nana so glad to hear your scope was good if you need the small intestine checked go for it. You could have narrowing that still causes you some problems but it is great that at least your large intestine looks good. It could be going off the pred causes you symn. I know as I lower I get a little D for a few days but seem to regulate a little the Rem was doubbled and that made a difference air flowing good and good BM's.I was DX with CD in both large and small so for me one test would not tell me everything that is going on inside there.So glad your change of thinking is doing you some good and let us know if we can help. lol gail

If you feel better on the meds and you are not having side effects then I don't see why you can't stay on them. As far as coming off pred, I have never taken it but when I came off my entocort my withdrawal including severe stomach pain and D which passed after a few days and led me to remission. So your D could be from a withdrawal. I hate how doctors undiagnose us all the time. I like to think that things look better b/c the meds are working. Im sorry you are in this situation. The bottom line is, it isn't your diagnosis that matters, but how you feel every day.

You can also ask for a Prometheus test to see if you have the markers for IBD.