Crohn's Disease Forum » Your Story » New to the site, but had Crohn's since I was 9

10-30-2017, 03:11 PM   #1
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New to the site, but had Crohn's since I was 9

Hi. I'm new to this site and obviously to this group. I thought I'd join to meet people who are going through similar things as me.

So I basically I was diagnosed with Crohn's Disesase when I was 9 (I'm 21 now). After two months of loosing 2 stone and having severe diarrhoea and refererred between three hospitals, I was finally given the diagnosis in December 2005. I struggled a lot when I was a child. When I was first diagnosed, I missed the first half of my school year and that time I had just moved schools, and the same again the year after as I was still new to the disease. I was quite an active young girl and to have this disease, changed my life. I went from playing football and hockey, to practically being bed ridden.

I tried all medication. I was on mesalazine, azathioprine, prednisone, the liquid diet and then finally remicade. My childhood and my teenage years were quite difficult. I still somehow managed to finish school despite missing thre majority of it with being hospital.

That was until 2014 (I was 18) when I took a turn for the worse. I had many relapses throughout my life, but it was never like this. I was on all the medication that I mentioned above and I had just started remicade. It was making me tired and I wasn't responding to it. I was in my first year of college and I was just about to finish for summer when I was suddenly admitted to hospital. They did scans, colonoscopies and all sorts of tests and all the doctors came up with was "we can only give you prednisone at the moment". A week later I was back in hospital and they put me on the liquid diet. I was off for 7 weeks in total from college.

Later that year, in October, I had another relapse. It was a Sunday even ending, I was at home and I suddenly collapsed from the pain and I was rushed into hospital. Over the next few days they did the same tests and then on the Thursday that week, the doctors came up to me and said "Im sorry. There's nothing more we can do other than perform surgery." A total colectomy at that time sounded so scary and I was an 18 year old girl who was about to have life changing surgery. That afternoon, the surgeon then explained the procedure and said that he wants do the surgery the next day as I was deteriorating quite rapidly. I had 4 hours to decide whether to have the surgery or not and in the end I went through with it.

It was a long road to recovery. I was in hospital 2 weeks and then another 3 at home before I went back to college part time. It took time to adjust to having a Stoma and colectomy bag and I had to have help from my mum for the first few months.

I am better now, although I was due to have surgery this year to join everything up, but they did some tests and I am unhealthy to have it as I am having flare ups. They started me on Vedomuzimab and have been on it for three months and I have noticed a difference, however I do still tend to relapse.

Sorry for the long rant lol

Last edited by Nadia96; 10-31-2017 at 09:36 AM.
10-31-2017, 09:18 AM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome. I hope you feel better soon.
11-01-2017, 03:07 PM   #3
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Join Date: Jun 2011
Location: East Midlands

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Hello, sounds like you've had a very rough time with your Crohns, especially from such a early age. There are other people on this forum who've also had it for most of their lives. Though I've always had a delicate gut, I've only had serious IBD since my mid-fifties and it's hard to imagine how anyone copes with it when they're so young.

Crohn's Disease Forum » Your Story » New to the site, but had Crohn's since I was 9
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