The doctor doesnt know what is wrong with me!

[Rebecca29]

I have been on this forum for many years. I don't spend a lot of time on here chatting with others, but this forum has been a huge help in reading everyone's stories along with side effects for new medications.

I wanted to share my continued story. In January of 2011 I had a colonoscopy and was diagnosed with Crohns Disease. The doctor (experienced 30+ years) told me he was 99.9% sure that I had CD. Ive tried multiple medications that had some side effects, but no help with the bathroom problem (diarrhea 10-20 times a day). I finally told him in February of this year that I have had enough, and something else needed to be done.

So the doctor recommended Endoscopy, Enterography (CT scan of small intestines), blood work to test liver, pancreas, thyroid, Crohns and Colitis and a 72 hour fat fecal test to show intestinal absorption of fat.

I received the last of the results today and EVERYTHING came back normal (negative).

My brain is running a mile a minute. I am thankful for the results but worried that the doctor does NOT know what is wrong with me. My doctor retired April 1st, and new ones moved into his office. My first visit with the new doctor isn't until April 24th. I am looking forward to a second opinion, but still wondering.... What is wrong with me??...

Any advice, ideas or words of wisdom would be appreciated.

 

[Tuff]

Hi Rebecca. I'm sorry you've had such a hard time. That's way too long to suffer without any improvement. Definitely get a second opinion. Have you ever had allergy testing, or the test for celiac disease? Those can cause diarrhea too. You've had no other symptoms all this time?

 

[Rebecca29]

@Tuff ... Thank you for your reply... I have NOT had an allergy test. (good thought though). I have been tested for celiac disease back in February and it came back negative. No other symptoms, other than the occasional nausea and tenderness of the abdomen. Second opinion is scheduled for next week and I am anxious for that to near.

 

[David]

Hi there Rebecca. Through this, have you tried doing exclusive enteral nutrition for a week to see what happens? It could be as simple as going to walmart and getting some Boost or Ensure and just having that for a week.

Also, do you have any symptoms besides the diarrhea? ANYTHING at all.

 

[D Bergy]

Celiac and gluten intolerance are two different things. You could just eliminate gluten from your diet and see if you get any results.

The next thing would be a dairy elimination diet. My wife developed a dairy intolerance after decades of no problems with it.

Finding out what is wrong often involves eliminating what is not wrong. Then you can narrow your possibilities.

Hope you get it figured out soon.

Dan

 

[afidz]

Do you know where they said your Crohn's was? Did you have a colonscopy in that round of tests? ( I didn't see it mentioned)
Can you list the meds that you have tried?
And like David, I was wondering what your other symptoms are

 

[Rebecca29]

Thank you all for the suggestions. @David @D Bergy @afidz

@Tuff had mentioned to me to see an allergist. Would that determine if dairy or gluten is causing the problem??

I have tried a gluten free diet. I did NOT last very long, due to I am a very picky eater. So for the week that I was on that diet, I saw no results.

I have been on Pentasa, Apriso, and steroids. None of them helped. The doctor wanted further tests done before he prescribed Humira.

I did have a colonoscopy 3 years ago, and that's when the doctor diagnosed me. He said it was in my ileum (small intestine).

I have diarrhea with no other symptoms, other than urgency, quite frequently, and the occasional nausea.

I have since been to see the new doctor (second opinion) and he is clueless. I felt horrible because it was the first time meeting this new doctor and I sat there and cried when he couldn't give me answers. I am again thankful for no cancer, but this is all still so frustrating!! He prescribed Colestid for my symptoms.

So... My thyroid (T4) levels came back high and he recommended that I speak to my primary about that (or even a endocrinologist)... So off to a whole new list of things to figure out.