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Crohn's Disease Forum » Your Story » Diagnosed in April


06-29-2013, 05:10 PM   #1
whatface
 
Join Date: Jun 2013
Location: London, United Kingdom
Diagnosed in April

Hi All!

Just wanted to pop in and share my story as I have been browsing the forum for a little while now since I was diagnosed in April and it has really helped me understand things a little better.

Having been discharged from the NHS hospitals on two occasions, after they kept me in insisting on checking for appendictis or gynae problems and refusing to believe me that it was definitely a stomach/gut problem (I was having intermittent, really severe cramps for about 3 weeks before I went to the doc), I went back to my parents abroad to rest as I had convinced myself it was all stress related. Things flared up worse when I got there, my legs swelled up, I couldn't walk, I had no appetite. This is when I went for my colonoscopy and it was the worst thing I have ever experienced (not to mention that drink was disgusting). It took an hour and a half because I was in such severe pain. Fast forward to 2 weeks later and I had a miraculous 'recovery' after even a few days on steroids. I was gaining back all the weight I'd lost, eating and visiting the toilet less and less.

Since then, I have come back to the UK and I am struggling to come to terms with everything. I am back at my flat, alone, and the steroids are not helping my moods and anxiety. I have been to see a gastro specialist back here now I'm back in London but everytime I asked a question, he just queried why I was asking but am hoping the next time I see him, after the MRI he's scheduling me, it will be a more pleasant experience.

On a side note, my specialist abroad sent my UK specialist the funniest email, comprising of my notes basically in 3 mixed up languages. Cheered me right up!

Anyway, that's my little story and I hope to get to know you all a little bit better because I think this place is so friendly and reassuring and great to be a part of!

Bethany
06-29-2013, 10:48 PM   #2
Traumanurse
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Join Date: May 2013
Location: Colorado

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Welcome what!

This is an amazing place for tons of info and support. It's been a great help to me, even having Crohns for 15 years.

Glad you decided to post today. So you were diagnosed with Crohns? Wasn't sure with your message. Sounds like you went through a lot in order to even be diagnosed.

What treatment are they going to try? Not just steroids sine those are usually short term.

Let us know how you're doing!
06-30-2013, 02:47 AM   #3
Honey
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Join Date: Mar 2013
Location: United Kingdom
Hi there, and welcome,
It takes time to diagnose and find the correct meds that work for you. It took a year before I was put on Infliximab infusions for Crohns as I reacted badly to other medication. Steroids do help and make you feel better but they are not meant to be long term. I hope all goes well for you in your next follow up. Let me know how you are. I found this forum helpful , only finding it by chance!! I am sure it will help you too as people do not always understand what you are going through ! We do.
06-30-2013, 06:43 AM   #4
whatface
 
Join Date: Jun 2013
Location: London, United Kingdom
Traumanurse, yes, sorry, diagnosed with crohns! I've been put on steroids on the short term but as I was changing countries for treatment, waiting for the UK one to decide but slowly weening myself off the steroids, thankfully. The puffy face is not my friend!

Thanks for your reply Honey, will keep updated with how everything goes. It really just helps to have somewhere to vent!
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