Still have not been diagnosed.... Need advice!

Hi all,

I discovered this website on my attempt to make sense of all that is going on with my body right now. Everyone on here is so helpful so i thought i would share my story in hopes of making sense of things..:

I am a 23 year old healthy female. The pain began two months ago, I had red blood in my stool and could barely hold my bowels. I was constantly running to the bathroom- especially after I ate. I had severe burming in my stomach area and had a lingering pain right above my belly button. After I ate I had sharp pain.

One month later, I went to the walk in clinic to be diagnosed with ulcers and was given a referral to a GI.. I got a SEPTEMBER appointment. He also put me on Pantoprazole 40mg. At that point I was only able to eat  bananas, greek yogurt, cucomber,watermelon with a couple boost/ ensure with extra protein a day.

A week or so after that, I went to emerg and thankfully had the whole workup.. Blood tests (came back normal), ultra sound (..normal), CT scan (..normal), scope down the throat (normal) and colonoscopy (yep.. normal). My GI has referred me to a different hospital here in Montreal to have the capsule endoscopy. He also put me on 10mg Bentylol 1x per day. He thought it was ulcerative colitis until he did the colonoscopy which came back negative so now thinks it is crohns.

Now: I cannot eat anything except for the foods listed above- I have tried and I get more pain and I have to run to the bathroom.

- I am nauseous before and after I eat.

- I vomit usually at the end of the day.

-Although the Pantoprazole helped, I still get bad burning

- Bentylol barely works.

- I AM SO TIRED and grumpy (lack of nutrients i suppose).

- I still have red blood in my stool.

- Waiting for my biopsy results and for the capsule endoscopy.

Although it is manageable now that I barely eat, I have lost 15lbs, I`m tired and fed up. Does anyone have any recommendation for a multivitamin, maybe for more energy? Or foods that werent as bad on the stomach?

The waiting and not knowing has definitely been hard. Thanking you all in advance.

Melissa

Hi Melgriffin,
I'm so sorry that you still don't know what is going on. Sometimes biopsy results show what the doc can't see with the naked eye. The pill cam is a good idea. You didn't mention that the doc tested your stools...you may have a bacterial infection. Even if your stool was tested, you should ask to have it repeated as sometimes infections like salmonella, e.coli and c. difficile may not show up on every sample. When I feel really bad, I go to low fiber and what I call my "white diet"...white toast, potatoes, white rice, etc. I try to add a hard boiled egg for protein if I can stand it. Certainly the nutritional supplements like boost are an option, but they always make me feel worse. Chicken broth is another possibility, or turkey breast....(more white) I hope you figure out what is going on and feel better soon!!

When you get a stool sample done, request a faecal calprotectin test as well. Abnormally high levels (ie anything over 100) usually indicate IBD. False negatives/positives are possible, but relatively rare.

Good luck.