Hello and seeking advice

Hi everyone - I'm new to this discussion group, but wondering what opinions any of you good folks might have on my condition. I was diagnosed with Crohn's 3.5 years ago and I've been fairly stable on Asacol ever since, though I still had occasional bouts of nausea and stomach pains. A few months ago, I started feeling sicker again, and coincidentally had an appointment with my Dr. He told me it was time for another colonoscopy, which I did a few weeks later. My Dr. told me that my Crohn's had progressed from a 1 (on a scale of 1 to 10) to a 5, and suggested that I go on 6-MP. I'm really worried about this drug, and I don't want to take it if I don't have to, so I decided it was time to go for a 2nd opinion.

I went to see another Dr. and showed him my records. He actually thought my condition didn't look as bad as the first Dr. thought, and suggested holding off on the 6-MP for the moment. He ordered some blood tests, of which I just got the results:

"Hct 38, WBC 4600, 41 polys, 45 lymphs, B12 486, sed rate 19, CRP
22. The IgA is low at 68 making the TTG of 2 uninterpretable.
You will need a small bowel biopsy to rule out celiac disease.
The elevated CRP does speak to inflammation, so Crohn's is not
ruled out."

I don't really know what all this means. Of course I already put in a call to him to discuss these results, but I thought it best to reach out and see if anyone else has any advice or opinions.

Thanks in advance,
-Jean

Normal CRP is less than 1, but yours is 22. That's not the highest CRP I've seen, but it means you do indeed have inflammation.

You can find out more about your labs by checking www.labtestsonline.org

If you do have Crohn's, then the Asacol is not effective enough. Has anybody told you why you have nausea? Sometimes, this can be a sign of a stricture - did the colonoscopy show a stricture? Ulceration? Granuloma? 

Hi and welcome. Sorry you're feeling lousy.

Please keep in mind that I am not a doctor. But, since you asked, I think you should go with the first doctor's recommendation and start 6-MP right away. You may want to see the posts of other folks on the board who have used this med with no problems for 20+ years if you need reassurance about it's safety and whether it works well.

It takes up to 4 months before you know if 6-MP is going to work so it's best not to delay starting it if you are having active symptoms now.

If you have progressed from a 1 to a 5 in 3.5 years how far will you have progressed in another 3.5 years? Emergency surgery due to bowel obstruction or perforation are not uncommon even with ongoing maintenance medications. The likelihood of serious complications is pretty significant and grows the longer the inflammation goes unchecked.

If you haven't been very sick so far, it can be hard to take CD seriously and understand the need for more aggressive treatment than has worked for you in the past. But it is typical for the course of the disease to worsen over time. Sometimes it gets a LOT worse with very little warning.

It's hard to interpret lab values without the corresponding normal ranges listed. These values vary from lab to lab so you can't usually make a blanket assumption about what's a "normal" value and what's not. For example, CrP is one test that has 2 different versions that are measured in different units and have very different normal ranges.

If you'd like to post more info about the tests you listed I'd be happy to try to help you understand the results.

Celiac disease - the gold standard for this is endoscopic biopsies. It sounds like the blood test to rule this out could not be interpreted due to a low IgA level. Thus the comment that you need a small bowel biopsy to rule it out. I'd be interested in knowing why your IgA is low and just how low it is. Did the doctor run any other IgG levels or sub-factor tests? They 'd all start with Ig + a letter of the alphabet for the main ones.

Finally, not all GI's are well-informed or have much experience treating IBD patients. If you are seeing a general GI doc and want a 2nd opinion it's a good idea to go to an IBD clinic at a major teaching hospital or center where they have a lot of experience treating IBD patients. A community GI may only see 5 or 10 IBD patients a year and just doesn't have time to keep up with the latest treatment standards. An IBD clinic doc may see 100 - 500 IBD patients a year and is most likely to provide a reliable expert 2nd opinion.

Patricia

Thanks so much for all of the information and encouragement.  I haven't had a chance to touch base with my doctor to get more information about the blood test results but that's maybe a good thing because I have a little bit more information for my conversation with him thanks to your replies.  For years I was under the apprehension that there was a large area of inflammation in the ileum, but when the 2nd doctor looked at the pictures from the first doc's colonoscopy, he said it only looked like an area of inflammation about the size of his thumbnail.  I'm a little confused about how I could be in so much discomfort over such a small area of inflammation.  I'm thinking maybe there were more areas of inflammation than were represented on the pictures.

Anyway, I think I'd be happy if it were "only" Celiac's disease (and I don't mean to minimize it for those who suffer from Celiac's).  My husband is gluten intolerant already, so I know avoiding gluten is difficult but not the end of the world.  I guess I have to have the biopsy to rule it out.

Regarding nausea though... is it really true that nausea is NOT common with CD?  All along I had thought nausea was par for the course, but it sounds like maybe that's not right.  I have mentioned nausea to both docs, and neither of them really commented on it.

Anyway, thanks again for the info!

Nausea for me usually meant signs of narrowing or a stricture. You could have an inflammed area of your intestines that has narrowed due to the inflammation. I think you really need to think about stronger meds. You don't want the damage to continue. Hugs!