Waiting to be diagnosed......any advice appreciated. Help!

[Suzyxniv]

Hi everyone,

So happy to have found this site and would love if any of you would be able to share your thoughts on my story. Maybe we share similar experiences.

For me it all started in 1999 when I was aged 15. I had a year of chronic diarrhea and lost around 3 stone. Back then I had a colonoscopy which showed some mild non specific inflammation. Further tests did not conclude anything. After a year my symptoms suddenly stopped. The hospital asked to perform another colonoscopy but, being a teenager who was feeling extremely embarrassed by this all, I discharged myself. Over the next 15 years I had some flares, lasting anywhere between a few days to a few months. Except from the first flare, no other flare has led to much weight loss.

In November 2014 I was referred back to the GI at my own request because I was flaring more often and struggling to cope with the symptoms and holding a full time job. My job requires me to spend a lot of time in the community and this proves very difficulty when I can't trust my bowel.

I had a colonoscopy in May 2015 which showed nothing. Calprotectin test was over 600. Bloods were normal. In October during a symptom free period my Calprotectin was repeated and was normal. My latest flare started in November last year and I have not had a diarrhea free day since. Calprotectin results in Dec was over 200.

My GI seems to keep mentioning ibs but I have never known it to be so severe. He told me in December that if my Calprotectin was raised again he wanted to do an mri of small bowel as I have Crohn's in my family. I am waiting now for the mri and am currently off work again due to the amount of diarrhea I have and associated anxiety.

Symptoms:

Diarrhea up to 10 times daily. Occasionally at night but not often.
Nausea and occasional vomiting.
Abdominal cramps that can be severe (relieved with bowel movement) and a more persistent dull ache that's there all the time.
Fatigue
Passing a lot of undigested food.
Occasional incontinence.

Sorry for the long thread but I'm at my wits end with this!

Any thoughts?

 

[DJW]

Hi and welcome.

I'm glad to hear you've pushed to get more testing.

Has the doctor run blood tests to check iron, B12, vitamin D, and inflammation markers?

When I was first diagnosed I had many of those same symptoms.

My recommendation is to keep a journal of symptoms, food eaten and questions you have. (Not that food causes Crohn's)

Sending you my support.

 

[scottsma]

Hi and welcome.I agree with DJW,I would also make a list of symptoms to take to your next GI appt.,because it's easy to become overwhelmed by it all and forget things that may be important.As DJW said,food doesn't cause crohns or IBS,but some foods can aggravate it so it's worth keeping a food diary.Please don't let embarrassment get in the way of a diagnosis.We've all been there,and the medical team more than anybody.

 

[Suzyxniv]

Thank you both for the reply.

I have had bloods taken a few times but the only thing I know they tested is CRP whigh was normal. I had my crp and calprotectin done on the same day. Funnily my crp was normal and the calprotectin was raised.

I was asked to take diaries before and the Dr said the he didn't think it was food related. I will start documenting symptoms though.....good idea.

DJW....was your colonoscopy also clear?

Scottsma... thanks. I'm less embarrassed now that I'm older. Wish I had just persisted with the testing as a teen though and may I wouldn't still be undiagnosed 16 years later.

 

[DJW]

I was actually diagnosed with a sigmoidoscopy and biopsies. Further investigation revealed a lot more disease activity .

 

[Suzyxniv]

OK thanks. I'm hoping my mri will show something. I couldn't believe my colonoscopy was normal....I don't feel normal.

 

[DJW]

Crohn's can effect any area of the digestive system from mouth to anus. Just because a colonoscopy is clear doesn't mean it's not farther up your GI tract.

 

[Suzyxniv]

Fingers crossed then. Not that I want to be diagnosed with Crohn's or anything but I just want answers you know.

 

[ronroush7]

You need some type of answer. Hoping you get answers soon.