So.....
I haven't got anyone I can talk to about this and I was so mixed up this evening so I need to let it out. I am so glad this forum is here!
2 weeks ago I had a colonoscopy. The doctor told me afterwards I had very mild inflammation in the left side of the large colon and in the ileum. (3 years ago I had moderate inflammation with ulceration in the left side of the colon, suspected Crohns).
Now the doctor called me today to say the biopsies came back normal and that everything looks good. He wanted me to start tapering the Asacol tablets.
I reminded him that he saw mild inflammation in half of my colon. And that I still have - very mild but still there - symptoms.
I didn't tell him I already tried to taper once because the joint pain was getting bad, and the gastrointestinal symptoms increased so I had to up to the dose again. The whole time I have been on a higher dose than the normal mainenance dose.
***I am thinking that if the Asacol is working then he should not see anything abnormal in the biopsies?*** I did not think about that when I was talking to him.
Anyway, I did manage to get my points across about how much this has affected the last 4 years of my life so now he wants to see me again in his office for a full patient history. I am allowed to keep taking the tablets at least. I know I could voluntarily make myself very ill again by stopping the tablets and eating certain foods, but I am not courageous enough to do that.
I hope he will take it seriously and try and find out what is wrong. I don't mind if it is not IBD in the end (if there is a treatment for it), but what the hell is it??! What else can cause chronic diarrhea/nausea with severe weight loss, fatigue and fever? Is there something else? I know all the usual parastie and bacteria tests were made. I have had ultrasounds galore. The only unusual thing that came out of blood tests was a very low vitamin D.
And please please please do not withhold treatment just because the biopsy does not show anything.
Now I need to phone my Mum and see how much she can remember from my childhood. I seem to remember seeing a few doctors although I don't think I ever saw a GI.
It doesnt help that the colonoscopy seems to have aggrevated me, I have child who is potty training but really does not seem to care if she wets her pants and choses to do her business under the dining table, and the piece we are singing in choir (my effort to join the world again) is pretty depressing.
Spring is in the air but winter is in my heart at the moment.
I hope I feel more optimistic tomorrow. Ug, got a dentist appointment in the morning, that might be two of us looking down in the mouth!
Thanks guys, have a good night/day.
:hug:
I haven't got anyone I can talk to about this and I was so mixed up this evening so I need to let it out. I am so glad this forum is here!
2 weeks ago I had a colonoscopy. The doctor told me afterwards I had very mild inflammation in the left side of the large colon and in the ileum. (3 years ago I had moderate inflammation with ulceration in the left side of the colon, suspected Crohns).
Now the doctor called me today to say the biopsies came back normal and that everything looks good. He wanted me to start tapering the Asacol tablets.
I reminded him that he saw mild inflammation in half of my colon. And that I still have - very mild but still there - symptoms.
I didn't tell him I already tried to taper once because the joint pain was getting bad, and the gastrointestinal symptoms increased so I had to up to the dose again. The whole time I have been on a higher dose than the normal mainenance dose.
***I am thinking that if the Asacol is working then he should not see anything abnormal in the biopsies?*** I did not think about that when I was talking to him.
Anyway, I did manage to get my points across about how much this has affected the last 4 years of my life so now he wants to see me again in his office for a full patient history. I am allowed to keep taking the tablets at least. I know I could voluntarily make myself very ill again by stopping the tablets and eating certain foods, but I am not courageous enough to do that.
I hope he will take it seriously and try and find out what is wrong. I don't mind if it is not IBD in the end (if there is a treatment for it), but what the hell is it??! What else can cause chronic diarrhea/nausea with severe weight loss, fatigue and fever? Is there something else? I know all the usual parastie and bacteria tests were made. I have had ultrasounds galore. The only unusual thing that came out of blood tests was a very low vitamin D.
And please please please do not withhold treatment just because the biopsy does not show anything.
Now I need to phone my Mum and see how much she can remember from my childhood. I seem to remember seeing a few doctors although I don't think I ever saw a GI.
It doesnt help that the colonoscopy seems to have aggrevated me, I have child who is potty training but really does not seem to care if she wets her pants and choses to do her business under the dining table, and the piece we are singing in choir (my effort to join the world again) is pretty depressing.
Spring is in the air but winter is in my heart at the moment.
I hope I feel more optimistic tomorrow. Ug, got a dentist appointment in the morning, that might be two of us looking down in the mouth!
Thanks guys, have a good night/day.
:hug:
