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Crohn's Disease Forum » Your Story » Success Stories » My ongoing journey with Crohn's Disease.


01-04-2013, 07:56 AM   #1
Miss Sammy
 
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Join Date: Jan 2013
Location: London, United Kingdom
My ongoing journey with Crohn's Disease.

Hi all!
I'm new to the forum but have had Crohn's Disease for almost 6 years now. At age 16 I was severely bullied by so called friends, I started college and got hassled by gangs, needles to say I left that college 2 months after joining. I also had problems at home because of friends and moved out for almost 8 months. During this time my dress size went from a UK 12 down to a UK 6-8 because most days I forgot to eat or was too stressed to eat.

I resolved things with my mum and was able to move back home when I was 17, but the bullying continued, this time the police had to get involved which made things turn for the worst. I had diarrhoea for 1 year straight, but because I was so stressed I just brushed it off and thought it would subside when I started to eat again. However, when I told my mum she sent me straight to the doctors, who ordered blood tests etc. It took about 8 months to get a solid diagnosis, and even then they told me, it was either Crohn's Disease or Ulcerative Colitis.

As I have no family history of Crohn's, you can imagine how devastated I was, especially being told that I would need to be admitted into hospital for at least two week to get the steroids Intravenously. Also, I was more devastated because I had started a new college, with new friends and was scared to tell them about my illness for fear of rejection (silly i know, but that is how I felt).

Fast forward a few years, I managed to finish college and get into University to study English Lit. I had a flare up in every year of my degree and in the final year it was so bad that my course leader told me to defer graduating and focus on getting better. Reluctantly I did, and now I'm in the last 3 months of uni and have never felt better. They trialled me with corticosteroids and anibiotics that caused other complications but made me balloon to a size 18. However, they didn't work so they changed the meds to Prednisolone 40mg, Omeprazole, Asacol 800mg, Azathioprine 50mg (Mercaptopurine 100mg before but they made me extremely physically sick!).

I've gone around the world to say, I am now beginning the new year, in remission, and am focusing on my own diet plan that will keep CD at bay. I think the last flare up was so bad, and I felt like I had very little support from GPs that I want to reach out to any other CD, UC or IBD patient just to let them know, you are NOT alone! I am in the researching stages of developing a business for people like us that need to be reminded we can have the same quality of life on and off of medication; not to mention there will be unlimited access to toilets (as I know how it feels to go out and not know where the nearest loo is). Everyone deserves that fun day out or to be pampered so that's what I will focus on, giving patients the right to experience the best of life.

Hope everyone stays strong during their flare ups and triumph when in remission!
01-04-2013, 08:05 AM   #2
Angrybird
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Join Date: Nov 2011
Location: Cambridge, United Kingdom

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Hello and welcome to the forum, I am pleased you have decided to join

It is wonderful to hear that after all you have had to go through you have been able to reach remission. Just to confirm what meds are you now still on? Do you know if the docs have every checked your vitamin levels? If not it is worth asking them to check these on a regular basis as deficiences in this area is common with crohn's. We do also have a diet and sups forum that is worth having a look at for some further info in this area: http://www.crohnsforum.com/forumdisplay.php?f=17.

Wishing you continued success with the tum and your new endevour.

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
01-04-2013, 10:54 AM   #3
Miss Sammy
 
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Join Date: Jan 2013
Location: London, United Kingdom
Hi AngryBird

I'm on asacol 800mg and azathioprine 25mg. They usually check my bloods for white blood cell count but I will ask for vitamin levels.

Many thanks
Sam
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