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6 Years remission

Hi There :)
I am pretty new to this forum though I have been on similar ones in the past.
I'm 21 years old and have had crohns since I was 11.
Had a pretty rough time of it all through high school with a good 5 years without remission. I was averaging 25 trips to the loo a day and throwing up at the same time. The pain was unexplainable, there were times where all I could do was curl up in a foetal position and cry. At my worst I was 15 and 4 and a half stone. Treatments included; steroids, NG feeds, MAP bug therapy, pentasa, metronidazole (long term), Helicobacter treatments etc etc.... In the end my colon perforated during a routine colonoscopy aged 15 and I woke up with an ileostomy :) It was quite honestly the best thing that ever happened to me, it gave me my life back and I was able to get on with my education and teenage life as normal.
A year and a half later, aged 16, I had the stoma reversed and a straight ileo-anal anastomsis.
I have remained well since (touch wood). I managed to complete my A levels and a three year degree in Dental hygiene and Therapy and I am just about to start working :)
I am on no medication apart from loperamide, though my consultant and IBD nurse aren't too happy with this. I have been warned that being on no medication is not wise and I run the risk of toxic megacolon. But i've had years of punishing my body and liver with multitudes of medications that aren't even proven to work. So it's a risk i'm taking for now.
Thats about it. Obviously the story is a lot more complex that that brief outline but I could go on forever!
Myself and a friend also run a support group for young people and their families who have stomas :) we meet up and do activities such as canoeing and team building in an enviroment where stomas are the norm :) We are based in Manchester/Bolton but we have people coming from other parts of the country to take part in the weekends :) It's just nice to help give the support that I really couldn't find when i was younger!
Anyway, I'd love to hear from anyone with similar stories!
 
I too went medication free for almost 7 years but in the end I paid for it dearly. Good luck to you. It's a very great risk you're taking.

Glad that you're feeling well, though. I would have been quite upset to wake up minus a bit of my insides. SURPRISE! Bah.
 

xJillx

Your Story Forum Monitor
Hi and welcome! Congratulations on feeling so well and earning your degree in Dental hygiene and Therapy. You are a Crohn's success story!

I hope you continue to always feel so good!
 
HI and welcome to the crohn's forum i hope you continue to do well and stay in remission for a long long time to come. Stick to your medication that works for you best. only you know your own body and if it's working well stick to your guns no matter what any one says. best wishes.

scott
 

rygon

Moderator
Hi No: , was reading your post on Sophies thread. Im on infliximab (Remi) and find it amazing. Was finding life pretty much unbearable beforehand (quite a bit of pain plus going to the toilet all the time). Toilet stops have decreased by half and virtually no pain at all.

Also you said you didnt have an MRI due to hearing bad things about it? what are they?
 

rygon

Moderator
oops sorry being stupid, you didnt mean the big magnet thing, more manchester hospital lol
 
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