How many of you screened for Crohns/UC?

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How many of you screened for Crohns/UC?

Postby Manitourose » 04 Mar 2016, 17:02

Curious as to how many people here have had a colonoscopy to rule in or out an IBD of something like Crohn's or UC because they had a fistula and/or fissure?

Thanks... My worried head is getting ahead of me.
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Re: How many of you screened for Crohns/UC?

Postby Savaici » 15 Mar 2016, 14:15

Nope! Never had a colonoscopy, only a sigmoidoscopy.

Sorry about the somewhat :groan: late response.
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Re: How many of you screened for Crohns/UC?

Postby DNA » 20 Mar 2016, 15:50

I didn't have a colonoscopy, but rather my uncle (who's a retired Gastroenterologist) recommended that I get blood work suck as:
-CMP,
-CBC,
-Serum Test- which tests for Crohn's & UC that would be consistent with IBD,
-CRP- "C-reactive protein" for inflammation
-ESR- also for inflammation

He also said that he would recommend getting a stool blood test kit from a pharmacy and check it myself. You do need to remove all red meats for 5-7 days prior to testing though. Hope that helps ya!
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Re: How many of you screened for Crohns/UC?

Postby Manitourose » 20 Mar 2016, 17:07

Thank DNA! Very useful info. I've had most of the blood work done. My doctor said the inflammation markers may not say a lot for me since I have celiac disease that was recently diagnosed and it would definitely show inflammation. Have my colonoscopy April 1st and so terrified... Just of the answers it will bring.

Great having an uncle who was a GI! Very useful. :)
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Re: How many of you screened for Crohns/UC?

Postby DNA » 21 Mar 2016, 16:04

LOL! It does have it's perks at times.

Gluten's in everything now days so I feel for ya! There's an excellent book out there that everyone should have if you have this disease IMO. It's called, "The Plan D Diet". Great book and the best part is in the back of it. It's filled with lots of recipes that are gluten free. To boot, they're VERY tasty! The Mrs. uses it all the time cuz she's gluten intolerant rather than allergic to it. The first 3-4 chapters are for those who may have weight issues, but the rest, IMO, is eye opening and unbelievable!

Also, have you ever done any antigen testing for food sensitivity? Just curious cuz that may help your situation tremendously. If I recall there's one out East called Al Cat. They specifically test the antigen responses (inflammation)to a whole host of foods. Tells ya what you should or shouldn't eat. Good luck and hang in there!
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Re: How many of you screened for Crohns/UC?

Postby NickF » 17 May 2017, 17:37

Ive had a strange and non healing fissure for 1.5 years and I was tested in so many ways for Crohns and all came back negative until finally my current GI doctor diagnosed Crohns. It is so important to make sure you push for all possible tests. I had several doctors categorically tell me that I did not have Crohns.
I had:

Sigmoidoscopy with biopsies: negative. Normal rectal mucosa
Colonoscopy: Found inflammation in rectum but all biopsies came back normal
CT scan: Found extra lymph nodes but not indicative of Crohns yet.
Fecal Calprotectin: No signs of inflammation
CBC: normal
C reactive protein: normal

Very recently I had a few weeks of abdominal cramping and pain, fatigue and loss of appetite. My doctor ordered a specialised IBD blood test - Prometheus IDB sgi diagnostic. This is how it was finally diagnosed.

Crohns is hard to diagnose so make sure you are tested in every way possible.
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Re: How many of you screened for Crohns/UC?

Postby dmcff » 18 May 2017, 03:02

What country are you in, Nick?
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays, severe pain until August, then moderate to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
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Re: How many of you screened for Crohns/UC?

Postby NickF » 18 May 2017, 10:46

Hi dmcff,

Most of the tests I had done were in the UK. I had several specialists in the U.K. rule out crohns. I moved to the USA 6 weeks ago and both my GI and CRS insisted that I had more testing done here. I got diagnosed with Crohns 2 days ago here in LA.

If you are in the U.K. I would strongly recommend that you do not accept a sigmoidoscopy with biopsies as proof of no Crohns. Push for a colonoscopy. And push for the Prometheus blood test. Even the colonoscopy wasn't enough to conclusively fine crohns for me. The NHS may not cover the Prometheus IBD blood test. If they don't, pay the $800 to have it done privately in a US Lab if you can afford it.

Let me know if you have any questions

Nick
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Re: How many of you screened for Crohns/UC?

Postby dmcff » 18 May 2017, 11:04

Thank you for the information and the advice, Nick. I will need to discuss the options with my GP, I guess.

I've had no abdominal pain, no diarrhea and no visible bleeding, and I haven't noticed much in the way of loss of appetite or excessive tiredness (though I did lose some weight while in hospital two years ago, I have subsequently regained it). But over the 2+ years with AF I have had a lot of rectal pain and discomfort, and don't seem to have done much healing.

David
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays, severe pain until August, then moderate to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
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