Not sure if I belong here yet...confused

[tammy20]

Hi everyone

I've been following the forum for a couple of months now and have finally plucked up the courage to say hello today.

I have been suffering with symptoms for about 15 months now - frequent diarrhea, nausea, abdominal pain, dizziness, tiredness, headaches etc. One thing that I will say though is that I haven't lost weight - maybe the opposite actually since I now seem to live off things like white bread, potatoes, rice etc which have always made me put on weight and as I can't tolerate fruit and veg I don't have too many other options availlable to me.

I have had many tests done but only one has shown possible signs of Crohn's, this being a small bowel follow through. Other tests such as colonoscopy, ct scan and white blood cell scan have not shown any signs. The only other thing that possibly backs up Crohn's is the fact that I have now become anaemic.

In January I fell really ill and my doctor prescribed me pentasa and an 8 week course of prednisolone. After a few days on the pred I felt much better and continued to feel nearly 'normal' again until a few weeks after I came off the pred - suppose looking back I was gradually going down hill once I had tapered down to a 15mg dose.

Just recently I have been started on budesonide 3mg three times a day and still take the pentasa. Again, after about 4 - 5 days on budesonide I started feeling better again although not quite to the extent which I did with the prednisolone.

The problem which I am facing is that I have still not been formerly diagnosed as having crohn's and I'm starting to wonder myself now after all the other tests have come back negative. It's really starting to get me down.

Has anyone else experienced similar - I am aware that it is a difficult thing to diagnose in some people.

Thanks

Tammy20

 

[misscris]

Hey Tammy. :welcome:

You'll find on this forum that everybody has different stories of how they got diagnosed and what their symptoms are. Several people in here have had tests come back negative over and over again. Some people in here were diagnosed after years of testing ... and some very quickly. Everybody is different, and it seems to be a very confusing and annoying disease. There's also people like me who didn't have any symptoms to talk about .. but then ended up in surgery for an unplanned resection and diagnosis when I woke up. Everybody is different, and I haven't lost weight with Crohn's either.

 

[Nik2925]

I am also having difficulty getting a definitive diagnosis. I have been seeing doctors for my problems for about 8 months now. My doctor found inflammation in the illeum on my colonoscopy & small bowel follow through, but I was told that without a biopsy, they couldn't be 100% certain. The doctor went ahead and started me on medications, though. I recently underwent a capsule endoscopy (yesterday) for the doctor to get a better look at what is going on in my small bowel. Since they did not find anything on your colonoscopy, maybe you are having issues in the small intestine...you could consider asking your doctor about the capsule endoscopy.

I am having symptoms similar to yours. My diet sounds very similar to yours as well. I know it is tough to deal with, but try to hang in there. Hopefully you will get some answers soon.

 

[JillianB82]

Hi Tammy!!! Welcome to CF!!!!

Everyone's CD is different. We all have different signs, symptoms etc. Sometimes CD is just hard to find for certain people. It took me over a year for them to piece everything together for me.

As for the "not loosing weight," again, it is different for all of us. I gained almost 20lbs while on Entocort b/c I was actually able to eat & not going to the bathroom every 30mins.

We're glad you're here!

 

[farm]

Before I got dx 15 years ago I lost a bunch of weight, however every flare since then I have not lost any weight and while on pred. I have gained 27 pounds (this last time).
Normally during a flare I don't loose weight, like you I eat junk that I can tolerate and forego the fruits, vegies, and healthy food because it tears my stomach up; therefore I gain weight during my flares.
Sometimes it takes a while to be dx with crohns so stick in there. Hopefully you can find some answers soon.

 

[gscottyg]

You don't need a biopsy to confirm crohn's. The most common area is at the end of the small intestine (terminal ileum) If they see that is "funky" and you have "common" symptoms then most likely it is crohn's. If they biopsy an area that is not inflamed/scarred etc then it will be negative. Even if it was in the small intestine. Remember crohn's can attack any part of the digestive tract. So anything is game sadfully. When I was diagnosed the biopsy was negative because they biopsied the large intestine and my t. ileum was involved.




~Medical student