Confused!!! Do I have it or not!?

by La
(Ireland)

I wrote a post a couple of weeks ago because my doctor diagnosed me with Crohn's disease. I have been having problems with severe bleeding, diarrhoea, terrible cramps. So my doctor ordered a colonoscopy, but it came back clear. Then he ordered a small bowel follow-thru with barium. It was when I had this follow-thru that they told me I had Crohn's. I always kind of wondered if I had it since my father has it and I had so many of the symptoms, but it still upset me when they told me I had it. Well, since then, they have sent me to a specialist at a different hospital. The specialist has given me two full colonoscopies now and taken multiple biopsies (I had one done just this morning.) But he is saying the colonoscopies aren't showing anything, and the biopsies are coming back normal. He tells me I'm in muddy water, that Crohn's is hard to detect and I'm having all of the symptoms (Bleeding, diarrhoea, horrible cramps) but the colonoscopies are coming back clear. He put me on steroids a few weeks back and has now told me that they are not helping so I should wean myself off of them. I'm just up in the air right now. They said I don't have any haemorrhoids, or any ulcers, so they aren't explaining the blood. And it's not just a small amount of blood, but a lot, dark blood with clots.

So basically, I've had one hospital tell me that I had a "classic case of Crohn's," he even went as far as saying that he could use my barium x-rays in medical school because it was so typical and easy to spot. He even showed me what he said was a fistula on the x-rays. And now I have another specialist telling me he isn't sure. That I have all of the signs, but he just isn't seeing it.
My anxiety and depression is on a roller coaster, it is one thing to know what is wrong with you and another thing to be left hanging. How can my colonoscopies come back clear if I have Crohn's? If it's not crohn's then why did my doctor tell me it was and what is it if it isn't crohn's? Any advise? I'm sorry for ranting, I am just so confused right now.

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Confused!! NEW
by: Annette Young

Hi there,

I am so sorry to hear your turmoil. I really understand how you feel. The trouble with Crohn's is that it is difficult to diagnose completely and this is why so many mis-diagnosis are made.

You mentioned fistula, and this is where ulcers have extended through the wall of the intestines. If you have this, it should be monitored because there can be complications so don't be afraid to go back and keep pursuing this. In some cases, not all, fistulas can make food bypass those areas of the bowel which are used for absorption of nutrients, so you can see why it is important.

I was doing research on Crohn's symptoms one day and associating dental problems and it seems that mouth ulcers/sores are often present in the mouth up to twelve months before Crohn's is diagnosed. Now if you do not have sores in the mouth, this doesn't mean you don't have Crohn's but it does seem an early indicator in some.

If you are losing blood, then you have every reason to be concerned. Dark blood usually comes from the upper GI tract and is associated with:

A bleeding ulcer in the stomach region
A tear in the esophagus - this could be through vomiting profusely
Inflammation of the lining of the stomach etc

It is certainly important to continue to seek advice and to be honest, there is a good chance that it is Crohn's disease but it may take some months before a full diagnosis is made. I would keep a food journal right now and collate evidence of this condition as this will help the doctor to re-evaluate.

Here's some more information for you:

http://www.nlm.nih.gov/medlineplus/ency/article/003130.htm

I do hope this helps.

Annette



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