Tuesday, September 24, 2013

Defecation Syncope with Crohn's, Dicyolmine Stopped, and Possible Humira Dosage Cutback

So on Monday September 23 I was on the toilet around 10:30 A.M. and noticed a cramp in my stomach and all of the sudden passed out while on the toilet (I didn't fall off or hit anything). However, I remember getting a flush feeling spacing out and then gradually coming back to my senses. I was probably out for a minute or two at most. It was a very odd experience. When I had a bowel movement tonight I was worried I would pass out but I was fine.

It was nice because later in the same day I went to a GI who said it was defecation syncope. He said it can actually happen to patients while coughing or urinating. Although, he said it was pretty rare which worried me a little bit. I did some research and it can happen although isn't life threatening even though I read you can die from it within 2 years due to underlying conditions (the underlying conditions are life threatening themselves).

My GI told me to stop dicylomine yesterday (I believe this might have caused the defecation syncope). Dicylomine just treats the cramping. Also I have been feeling very good (100% in fact) and asked if we could scale back the Humira from every week to every 10 days or every other week. My GI mentioned that he wanted to see me on a Thursday (I usually do my Humira shot on a Friday night) to do a blood test and see how much Humira is in my blood.  Depending on the blood test my Humira might be cut back.

Today I saw my regular doctor to follow up with the defecation synscope and a blood test was done along with an EKG (just to make sure there are no heart issues. My doctor mentioned that since I am on such odd drugs it wouldn't hurt to do such tests. I seem to be more proactive with my health these days because it seems like you get one thing and realize it lead to something else or be something else (initially a resident believed I had celieac disease, while my father after much research thought it was c difficile, while my doctor said he wouldn't be surprised if it wasn't an infection (meaning c difficle). What was interesting is my doctor use to work with a GI who saw plenty of Crohn's patients (300 actually). What this doctor noticed was that after everything was tried sometimes Flagyl would help patients. However, no one knew why this worked. This came from experience and couldn't be explained by any evidence at the time. These days more researchers are studying why this actually works.

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