My Crohn's luck

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Regular Member

Date Joined Jun 2006
Total Posts : 229
   Posted 12/22/2009 3:53 PM (GMT -6)   
Just had to share my Crohn's story of the week.  I've been trying to get an appointment with my GI for a few months now.  I've seen his PA, but I had more questions for the GI before I started taking the Imuran he prescribed.  I have also been battling an enterocutaneous fistula for the last 6 weeks.   Anyway, finally got an appointment scheduled for Dec 21 at 1pm (yesterday).  Mind you, my fistula has been draining like crazy and I was too the point of being fed up and am considering a second opinion.  Anyway, over the weekend the drainage was less than it has been for the entire 6 weeks.  On Sunday (the day before my appointment), the whole in my abdomen actually closed up.  So, yesterday, I go to see the GI and my fistula is closed up and has had not drainage for 24 hours... Low and behold, I get up this morning and the darn thing has reopened and is now starting to drain again.  I swear it's always the way things work when I have an appointment with the surgeon or GI... I can be absolutely miserable days prior to my appointment and then the day of all of my symptoms miraculously disappear. 
Does this happen with anyone else?  I just have to laugh, because otherwise I would cry.
I'm having a colonoscopy next Wednesday to see how the anastomosis is doing, and if my Crohn's is active I will start Humira instead of the Imuran.

Veteran Member

Date Joined Jul 2008
Total Posts : 674
   Posted 12/22/2009 5:40 PM (GMT -6)   
Why did your fistula close? Are you packing it with gauze? I don't know how big yours is but mine was the diameter of a pencil, and would drain a ton, I had to use those long q-tips to pack the very small amount of gauze that it would fit. You should never, never let it close like that because it will do just what it did, fill up and re-open...and if it does end up closing and not opening on its own it will turn into an abscess, which is NOT fun, and can be very dangerous!

Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 12/23/2009 1:08 AM (GMT -6)   
Aronk, yes, it happens all the time it seems like. There is something about the doctor's office and feeling better at times when you really need for them to see what is wrong. Is there any way that you could speak with the nurse to see if you could be examined a little bit sooner??
Diagnosed with Crohn's in May of 2008.
Currently taking for Crohn's: Pentasa, omeprazole, Loestrin birth control, and Align probiotics.
Also taking Elmiron and RE Methylphen for Interstitial Cystitis.
"He who has a why to live for can bear with almost any how."

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