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Crohn's Disease Forum » Your Story » My experience with crohns


06-24-2013, 06:40 AM   #1
really_worried
 
Join Date: Jun 2013
Location: melbourne, Victoria, Australia
My experience with crohns

Hello all
so im a 24 yr old female who was diagnosed with crohns at 19.... I have been through such a rollercoaster..last year in july I had 40cm of my ileum removed and I had a perianal abscess which required surgery to put a seton in... I had a little drainage happening but I was manageable but I was secretely loathing the thing as no one wants some piece of plastic hanging from their ass it feels domaralising and unnatural... maybe a month ago the seton came out by itself... and iv started to notice a foul smelling discharge now coming from my vagina... at first I thought it was thrush as I have had re-occurring problems with this for a year now but now im starting to think its a rectovaginal fistula... im almost at breaking point im so over this im already on infliximan/remicade... all the other drugs didn't do anything and im just not dealing well at all im isolating myself at home I don't want to go to school or go anywhere... I have read posts and its just seems that drugs and surgery are not helping many people and if they are its only short term I want a cure I don't want short term solutions which are causing more side effects and I don't even know what the long term effect of taking infliximab is but supressing the immune system permanently sounds Ludacris to me... just needed to get this out as if anyone will understand its the people on this site... cheers
06-26-2013, 12:01 AM   #2
rygon
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Join Date: Jan 2010
Location: Grimsby, United Kingdom

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Hey and welcome to the forum. Im sorry to hear you are having such a rough time.

How long have you been on remicade? The way I see it, if your immune system is in overdrive, you really have to suppress it to get it to what it should be like. It has helped me so much that I wouldnt want to go back to how it was.

Have you looked into the diet side of crohns? Many people swear by Paleo or SCD (amongst others) and although I havent tried either I do find that cutting out certain foods has help immensly
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Current Meds:
2x 1200mg Mezavant, 3x50mg Azathioprine, Infliximab (6 weekly)
06-27-2013, 09:32 PM   #3
David
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Join Date: Feb 2006
Location: Naples, Florida
Greetings and welcome to the community.

I'm so sorry to hear about everything you're going through. My heart goes out to you.

Have you told your doctor about your worries regarding the new potential fistula? Like rygon, I'm curious how long you've been on Remicade?

All my best to you.
06-27-2013, 10:04 PM   #4
nogutsnoglory
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Join Date: Sep 2009
Location: New York

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Welcome to the forum. I'm sorry for all of your hardship. I am also curious how long you have been on Remicade? I hope that it will kick in and work for you.
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