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Moderate to Severe Crohn's symptoms question

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Posted 10/20/2010 1:04 AM (GMT 0)
I was told I had moderate to severe Crohn's and was put on Humira as my first medication. I was shocked because I thought I had it mild. My symptoms are/have been perianal abscesses and fistulas( have had 3 of each), fissures, epigastric pain, fatigue,blood and mucus in stool, and I go 3-4 times a day. But I was under the impression to have moderate to severe Crohn's you had to have diarrhea and go many times a day. And I never have diarrhea or dehydration. Is this normal in Crohnies? If you don't mind me asking what were your symptoms w/o meds?
Posted 10/20/2010 1:10 AM (GMT 0)
Lovely, you'll find that quite often doctors use a diagnostic tool called the Crohn's Disease Activity Index to determine how severe a patient's symptoms are. You can read more about it by Googling - Wikipedia has quite a good outline of it.

Anyway, the number of times you use the toilet is just one of many criteria used to determine the severity of your Crohn's. The abscesses and fistulae automatically bump up your score by quite a lot, and that may be why you've been started on the "big guns" so quickly.

I hope this helps.

Ivy.
Posted 10/20/2010 1:37 AM (GMT 0)
That's not my idea of mild :|

Diarrhoea is common in Crohn's, but not everybody goes 20x a day. Certainly, if you do go 20x a day that would be considered a severe flare-up. But there's other ways for Crohn's to be bad without going a million times a day.

PS: My symptoms - with or without meds - have always included diarrhoea, but not that many times a day. It's varied, but I have gone as little as 1x a day (still liquid, mind) and as frequently as 10x a day. The average over the last five years has probably been about 5x a day, however.
Posted 10/20/2010 2:10 AM (GMT 0)
I have moderate to severe Crohn's and rarely have prolonged diarrhea unless I have a blockage. I don't think severe diarrhea is the only criteria used for figuring out the severity of Crohn's. I am just as likely to suffer from constipation as from diarrhea. Also, I think the presence or absence of diarrhea can have a lot to do with where your Crohn's is active.
Posted 10/20/2010 5:15 AM (GMT 0)
I have mod to severe and usually suffer with C - D too at times but usually C. Plus yours doesn't sound mild, esp with the fistuals etc.

B
Posted 10/20/2010 12:31 PM (GMT 0)
Just before my husband was hospitalized for perforation, fistuals, abcess, and partial obstruction, he was still only going 1-2x per day. He was diagnosed with SEVERE Crohn's.
Posted 10/20/2010 2:16 PM (GMT 0)
I had the exact same experience as you when I was diagnosed, Lonely. My doctor told me I had moderate to severe Crohns and started me on Humira. I was also wondering how I could possibly have moderate to severe Crohn's when I don't go to the bathroom as often as a lot of the people on this board, but like Ivy said, the presence of abscesses and fistula really bumps you up on that scale. A few months after starting Humira my fistulas (fistulae?) all cleared up, and except for a few rough patches I am mostly leading a normal life again. :)
Posted 10/20/2010 2:51 PM (GMT 0)
I've learned that Crohn's is different for everyone. My "mild" case resulted in a stricture and then a resection that took out about 20cm of small intestine.

Never under estimate your crohn's! Too many times I thought I was doing well and my blood tests showed otherwise.

I've realized you have to maintain a “Constant vigilance” (Alastor "Mad Eye" Moody from HP) when living with Crohn's.

To answer your question though... my symptoms before diagnosis were diareah, and vomiting.  I had no pain until after diagnosis when my strictures were becoming so severe.

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