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Returning Crohn's

Past Member
Posted by Past Member, on Tue Apr 16, 2013 3:55 pm
Hi Everyone Im am due for reversal soon. I Have to stop taking the Azathioprine for six weeks before the operation.
Im a bit worried that my Crohns will return before or after the operation and i will be back to square one again.
I was diagnosed with Crohns 3 years ago it all its never really been that bad until the last time when i had a 26cm of terminal ileum removed.
I know everyone that has Crohns suffers in different ways but i would like to other peoples stories and how often it effects them.
I just really dont know whats going to happen in the future.
I have heard of people having the operation and never getting Crohns again but i know other people that suffer all their lives?
Is there A pattern are there answers?
Thank you.
Samuel.
Past Member
Reply by Past Member, on Wed Apr 17, 2013 8:41 am
Unfortunately there is no guarantee.

best of luck and speedy recovery.
Reply by kulkitty, on Wed Apr 17, 2013 5:33 pm
Hi Samuel,
I was diagnosed with Crohns when I was 13 and it was awful.  Had to have a colostomy at 25 years old and then an ileostomy at the age of 29 due to the Crohns becoming active again.  Since that last surgery, I have not had any bouts of Crohns.  
Everyone is different and like you stated it affects everyone differently.   Hoping your surgery goes well and keep a positve attitude.  It will take you a long way.

Kulkitty Smile
Reply by MissMeganM, on Sat Apr 20, 2013 9:12 pm
So true, based on what I know some people go through the rest of their lives fine and some don't.  I've only had mine 6 months and it's not a permanent one, but I am making the decision to not have reversal surgery personally.  Based on what I've read, and based on the fact my own disease was severe and advanced by the time I had the surgery, an outcome for me seems dismal at best.  The doctors are willing to put me back together if I want them to, but I don't want to take the risks that were explained to me.  Plus, I was also told that Crohn's can flare badly again should I do it, and I remember very very well how sick I was before I had this surgery.  I feel now like I did when I was 23, the year before any of this crap started happening to me.  But you're still really young, so I'd take the advice of your doctor and do your research, and make your decision based on that.  Good luck!!!
Past Member
Reply by Past Member, on Sat Apr 20, 2013 9:53 pm
Yeah i have been to see the crohns doctor the other day and all the answers to my questions were "its all just theory"  and "we just don't know"  
But at the same time it might be ok ill so im probably going to do it..... but i still have to think about it.
I saw my blood results and they have stayed the same for nearly a year now.
So im hoping the small dose of Azathioprine has been doing its job... or the crohns just has not come back.
Either way i am much fitter and active now and not in any pain so i might stay this way but i would like to try gong back to being a "normy" as i think the phrase goes.
Reply by MissMeganM, on Sun Apr 21, 2013 2:27 pm
LOL yeah I don't blame you.  If things looked better for me or if I was younger, I might do it too.  I'm only 6 months out and my disease was REALLY severe -- I just went too long without a diagnosis and treatment, and by the time it was caught it was too late.  If they do try me on medications, it will be low grade chemo drugs or stuff they use to treat HIV, or possibly infusions of the others - Remicade, Humira, etc.  Sounds like a chemical shitstorm I'd rather stay away from, lol.  Look at it this way, you can at least try it - now you know what life's like from both sides of the coin, so if you need an ostomy again in the future you know you can handle it.  I wish you the best of luck!
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