IBD, not IBD, who else has been there, done that?

[buttER]

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:

 

[alice75]

I can so relate. I had a biopsy come back Crohn's over a decade ago and was put on Asacol which helped. I stopped seeing a Dr for many years but couldn't take my symptoms, mainly frequency and urgency any longer so I went to a GI who started me back on Asacol and then did a colonoscopy which looked good and was kind of pissy about but kept me on Asacol then he left that practice and a totally awesome supportive GI took over my colonoscopies still looked good but she listened to me and treated me then she left. My current GI doctor said after my last colonoscopy that he questioned my original diagnosis with but kept me on Asacol
Presentley I am sitting in a bathtub in pain after having a fistulomy. The surgeon said it doesn't look like it was from active Crohn's. I don't want to have Crohn's but no one has any other answers as to why I go to the bathroom 5-10 times a day much much more without Asacol and I have a chronic fissure then developed a rectal abscess then fistula.

 

[tots]

Oh boy have I been there done that!

Not fun- thought I was going to go crazy. My CD only shows with a small bowel series.

It's been frustrating, embarrassing and miserable.


I am sorry your having such a hard time



Lauren

 

[buttER]

Oh boy have I been there done that!

Not fun- thought I was going to go crazy. My CD only shows with a small bowel series.

It's been frustrating, embarrassing and miserable.


I am sorry your having such a hard time



Lauren

Hi Lauren
What showed up in a small bowel series? Just curious.
Thanks for posting.

 

[JenS]

Yup! Me too. I've had five or six Gastro doctors in the last 22 years. Two said Crohns, two say IBS the other and insure. Every time I do a colonoscopy I get different results. So frustrating.

 

[buttER]

Yup! Me too. I've had five or six Gastro doctors in the last 22 years. Two said Crohns, two say IBS the other and insure. Every time I do a colonoscopy I get different results. So frustrating.

Hi JenS
Now I really wonder how the doctors decided if you had Crohns or not. What was the evidence for the diagnosis of Crohns? And was that evidence missing when they said IBS or not sure?

Thanks, I am trying to understand how this all works. It seems like a lottery.

 

[JenS]

I can't figure it out either! Recently, I had some bleeding for a week and the doctor said, "IBS, not IBD". Well I was always told IBS involved no bleeding!?!