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Crohn's Disease Forum

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Joined
Jul 3, 2014
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Hi all,

New here and via google I came across this forum and thought maybe it would be a good place to find out what sort of tests people went through - he is a short story as to what has been happening.

For years and years (since I was about 11/12, now nearly 27) I have been living with either Diarrhea or constipation.

The Diarrhea is sudden, and there is not rhyme or reason to what causes it food wise, I could eat the same food all week and then eat it again and within 10 mins I am rushing to the toilet with the runs. Sometimes it can be something as simple as a glass of water - and water surely shouldn’t give me Diarrhea within 5-10 mins!

Sometimes, the toilet bowel is just filled with blood, and sometimes I also get the feeling that I need to poop - but when I go, all that is there to come out is blood. I have seen so many GP's who just don’t listen to me, or don’t take me seriously.

In July 2012 I became very sick and had a Perineum abscess, which was drained. At this point they asked if I wanted to have my haemorrhoids dealt with later on and I agreed yes - as I had had them such a long time, were external and just plain horrible and could become very painful when inflamed.

In April 2013 I had my haemorrhoidectomy - but turned out they weren’t haemorrhoids and were 'skin tags' they were removed, but came back within months.

Other than upset stomachs, and the uncertainty of if this meal will make me sick I have been relatively healthy. Then this May I got another abscess - I had surgery again and said that I had a fistula in my anus, and left a draining seton in - a piece of plastic string that comes out my bum and then goes back inside between by bum and bits, and is tied together.

The doctor who performed the surgery said that there was a lot of inflammation that she could see and that I was to have a colonoscopy as she suspected I have Crohn's.

Well yesterday I had the colonoscopy and the results were all normal - apart from two large skin tags inside near my anus, everything is healthy and as it should be.

The guy who did the colonoscopy took a few samples as he said that my surgeon wouldn’t believe him when the notes say everything is normal.

The nurse in recovery couldn’t tell me if they would be doing further tests - I still have the drain thing in, and my surgeon had said that it wouldn’t be coming out until 'optimal treatment' had occurred - does having a normal colon mean I don’t have Crohn's?
Has anyone else had a normal colon, had furhter tests and then been diagnosed with Crohn's?

I’m just confused as to what happens next, if that’s it and they remove the drain and see what happens, or if they will investigate more?

Thanks!
 
Hi and welcome.

Crohn's can effect people anywhere from the mouth to the anus. The colon can be fine but be present in the small intestine. The GI specialist can check the small intestine. Tests can include fecal calprotectin, blood work, endoscopy and MRI or MRE(?).

I hope you get answers. Sending you my support.
 
Visibly normal colon can still have inflammation at the microscopic level. Wait for biopsies to come back before you assume all was normal.

Further testing should include MRE of abdomen to check for inflammation in the small intestines. STandard lab work may not reveal inflammation - many people with CD have normal labs but severe inflammation.

Your symptoms are highly suspicious of CD in my non-doctor opinion. Make sure they do the MRE.
 

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