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Read this letter from my doctor

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Crohn's Disease
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Posted 10/11/2007 4:08 AM (GMT 0)
 

Just when I was starting to accept my Crohn's diagnosis, I receive a letter from a panel of GI doctors who agreed to study my "inconclusive" case. This is 7 years after my original diagnosis. What am I supposed to think now? I want to be happy... but I don't believe it!!

Dear _______,

          I have reviewed your medical records in detail and spoken with several other doctors in my office as well. I have also read over all of the information that you provided to this office.

        I was impressed on examining you and reviewing the records that the evidence for Crohn's Disease is certainly very tenuous. The biopsies that have previously been obtained are quite nonspecific. Based on your current symptoms and examination if one were to calculate a Crohn's Disease Activity Index for you (whether or not you actually have Crohn's Disease this can be done). The numbers arrived at would be extremely low, probably in the 150 range or less. Patients with CDAI of this level are not candidates for advanced therapy such as bioligic terapies, immune modulators, and so forth. In other words, we consider patients with CDAI of this level as being either under total excellent control, in remission, or asymptomatic.

I reviewed the assays that were done by Prometheus Laboratories. The most recent assay does include two markers, which were slightly elevated and these are often seen in patients with Crohn's disease. I will point out, however, that information about how these markers react to other inflammatory conditions such as sinusitis are unknown. I would like to raise the possibility that these markers might be related to your severe sinusitis and may not have any real meaning with regard to your gastrointestinal complaints.

I believe you have been studied adequately from the point of view of colonoscopies and probably do not need another examination at this point in time.

If one reviews your symptoms they are classic for irritable bowel syndrome. My own suggestions at this point woul be to concentrate on treatment for IBS and maximizing management of your symptoms. I would be very reluctant to apply a label of Crohn's disease to you at this point in time and I certainly would not recommend that you be treated actively for a diagnosis of Crohn's disease based on our current findings.

Posted 10/11/2007 4:10 AM (GMT 0)
By the way, another doctor is ready to put me on Imuran :)
Posted 10/11/2007 4:23 AM (GMT 0)
So frustrating... has a crohns treatment worked for you yet or have you yet to try one?? I was very inconclusive like you but my promesthus was off the charts. I have ulcerations in the intestines but my biopsies were inconclusive. Other tests looked fine. But, my crohns medication has worked GREAT. On that alone, I cling to my diagnosis and want to stay the course. I personally don't doubt that I have crohns disease but every time I see my doctor he has to remind me that I do not have a clear cut case. I just wanted to share that I understand your frustrations. Does anyone know if you had food poisening like e-coli or something if it could cause your markers to be super elevated?
Posted 10/11/2007 4:28 AM (GMT 0)
Crazy, I've personally never been an easy case either. I do have visible ulcerations and inflammation in my TI, but the biopsies came back inconclusive. My blood tests (CRP and SED rate) never come back elevated. I've taken the CDAI as well on my own, and it's always come back relatively low. However, biologic therapies like Remicade and Humira have been the only medications to keep me under control for any period of time. This disease is so individualized that it's insane for a doctor to flat out say, "Well, your CDAI would come back low, so you're not eligible for higher therapies."
Posted 10/11/2007 4:38 AM (GMT 0)
I'm famous for reading things wrong but here it goes...

It's as if they're saying you do have crohns but it's in remission and you're currently experiancing IBS symptoms.

My GI suspects I have both crohns and IBS as well.

:)
Posted 10/11/2007 4:41 AM (GMT 0)
Ok good. I thought I was starting to lose my mind. Thanks for yalls responses. Regardless of what my CDAI is, I'm in a lot of pain everyday.

I am currently on entocort. It hasn't done a darn bit of good. Prednisone doesn't seem to help very much either unless I'm having severe diarhea. But then hyosciamine also does the trick there too :) What the heck. The pain is always there.

Do you think its crazy for me to try imuran?
Posted 10/11/2007 4:43 AM (GMT 0)
Could someone help me understand what a nonspecific biopsy is?
Posted 10/11/2007 9:19 AM (GMT 0)
Styxs,
Sorry about all the doctor crap. I have gone thru the same thing with my daughter. If she is feeling good it is IBS but when she is having a flare it is Crohn's. Do you have joint pain? My daughter takes Pentasa and that seems to help( for the bowel not the joint). What is the lialda? Been gone for awhile haven't kept up with forum.
Ivy's mom
Posted 10/11/2007 1:24 PM (GMT 0)
Hi Styxs:

That letter could have been written to me by my last gi doctor, except for the sinusitis part. I haven't seen this new gi doctor since he put me on pentasa. Its being monitored by the gi NP, so that kind of tells you that they are taking this seriously. When I asked her "So, what is it?" she looked as if she was thinking "no one told you yet?" *However* when I asked her if they use the immune system modifiers etc. in this situation she said "No, we probably would not." I've been going through this long enough to know that things change over time, sometimes rapidly.

My advice would be to find another gi doctor. (sounds like you have another one?) I would not hang around someone anymore if I didn't agree with his treatment plan. Did that way too long.

As far as trying Imuran, the opinion from someone in a very similar position is that I would have to decide how bad my current situation was, how it affected my daily life and then decide if the consequences could be worse than what I am experiencing and if they were permanent. My answer to that right now would be "sign me up". Yes, pentasa is working great on my gut but I know it is still not normal and it hasn't done anything for the joint pain.

What is the criteria for the CDAI?
Posted 10/11/2007 1:48 PM (GMT 0)
I think a non-specific biopsy is one that does not have the granulomas that are indicative of crohns. However, only a small percentage of people with crohns actually have the granulomas but some doctors seem to not want to diagnose without it. This is just my opinion and I could be wrong.
Posted 10/11/2007 2:43 PM (GMT 0)
It may be that your biopsies and tests only show inflammation, which has many causes, but lots of doctors call CD (after all the disease is an inflammatory bowel diseas). Why don't you call or write this doctor for more specifics?

Here is a great site for a description of CD and what happens in the bowel:
http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease1&organ=6&disease=21&lang_id=1
Posted 10/11/2007 3:00 PM (GMT 0)
I specifically asked the gi NP if there was any other condition that would have responded to pentasa the way mine has and she said "not really, it (pentasa) is quite specific for this problem" I was thinking of other inflammatory conditions but this practice must feel that any inflammation is IBD. That is why they are calling mine indeterminate. It's probably in the small intestine by the reaction to asacol vs. pentasa but they can't say for sure. If it is in the colon they may have missed it with the biopsies they did. or it could be all over, here and there. Asacol took care of one part of it, pentasa all of it. (as far as pain goes)

It could be that "Crohn's Disease" was just the type that Dr. Crohn saw and the name stuck. There could be dozens of types of "Crohn's Disease" all of which have inflammation. I read on here that someone's doctor told them there is "stricturing" disease, "fistulizing" disease, etc etc.

I would be suspicious of a doctor that said "it has to have such and such to be crohn's" i.e. granulomas. Even the capsule won't show every surface area of the small intestine.
Posted 10/11/2007 3:34 PM (GMT 0)
My last GI was also like this. However, my Promethus came back pretty high for IBD..
Juswt want to point out that Textbook CD is ALMOST a myth around here. LOL.

Matthew
Posted 10/11/2007 9:03 PM (GMT 0)
Styx,

I'm not very familiar with your history.  Can you answer some questions in detail?

1) How were you first diagnosed with Crohn's? What was seen on colonoscopy, CT scans, etc, that made the doctors think you might have Crohn's?

2) What exactly were your Prometheus results?  (By that I mean give me the levels measured.)  Have you taken the test multiple times?  If so, can you share all your results?

3) Can you describe in detail what you mean by "horrible sinusitis?"  What do CT scans show?  Have you had sinus surgery?  If so what did they do in the surgery?  How many infections have you had?  How many courses of antibiotics?

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