Crohn's Disease Forum » Support Forum » Undiagnosed Club » My bowels are off to the races...

10-08-2011, 06:05 AM   #1
New Member
Join Date: Oct 2011
My bowels are off to the races...

Hi everyone! I'm new here and was invited to join you all on this forum when I posted in the "My Story" forum.

Today is not off to the best start.
It's 6:30 am right now, and I've been up since 4:30. Yesterday it was 2:30...I sure could use some rest.
I just took Emetrol for the nausea I have this morning. I've been making a mad dash to the toilet every few minutes with diarrhea. My head hurts because I need food (and because of the lack of sleep)...and as I'm writing this...I'm pausing to heave. I just want to cry or scream.

This is my story:

Right now, the doctors don't know what's wrong with me. In the past 18 months, I've had 2 colonoscopies, 1 sigmoidoscopy, been admitted to the hospital 4 times, been to the ER 6 times, had 2 upper endoscopies, and seen 4 different gastros.

I'm currently in what I call a "flare"...although technically, I haven't been dx. with Crohn's or UC.

My symptoms are: chronic diarrhea (4-20+ times a day), extreme weight loss, dehydration, gas, bloating, chronic stomach cramps, rectal abscess, extreme urgency, hemorroids, ulcers, mucous, nausea, fatigue, and incontinence. And because of the illness, I weigh less than 110 pounds (I'm 5'8").

I was put on Lialda, but I stopped taking it b/c it wasn't helping. I have also been on prednisone (pill and IV). Right now, I'm taking lomotil (Rx for diarrhea) and I'm trying to change my diet too.

The doctors tested my blood and said I'm negative for an IBD. They all agree that I have colitis, but they don't know why my symptoms are so out of proportion to the amount of inflammation (my colon's only moderately inflamed). The most recent GI told me that he wasn't willing to rule out Crohn's just it's wait and see for now. All I know is that I am sick and need some help.

I'm so glad I found you all! Have a great day.

Last edited by georgiabird; 10-08-2011 at 07:54 AM.
10-08-2011, 06:34 AM   #2
StarGirrrrl's Avatar
Join Date: Sep 2010

My Support Groups:
Welcome georgia, and i'm sorry you've had to join the club

Looks like you have a good GI who is willing to do more than fob you off with IBS.

I would just say though that many on here with raging (confirmed) IBD have 100% normal blood tests so I wouldn't take much notice of what the Drs said about that. Also you haven't mentioned if you've had any scans, such as a CT, or a barium follow through (x-ray)? Or maybe a Pill Cam to visualise the entire small intestine (although it can be hard to get funding).
2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
10-08-2011, 08:06 AM   #3
New Member
Join Date: Oct 2011
Thank you for the welcome!

Yes, I really liked my GI...unfortunately, he's leaving the hospital/clinic I use and moving out of state. My case is now with a colleague; I'm meeting her for the first time this coming week. *Fingers crossed that she takes me seriously*

Regarding the tests, I have had a CT w/contrast, but I don't believe I've had a barium swallow x-ray in years. And I know that I've never had a pill cam. I am unable to have an MRI b/c of some issues with metal in my body.

Again, thank you for your reply...and I agree, I'm sorry all of us have to join this club. Have a good day!
10-14-2011, 04:12 PM   #4
New Member
Join Date: Oct 2011
isnt Colitis an IBD? Why did the docs say you were negative then agree you had Colitis?

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