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7 months for a diagnosis - 3 weeks later in hospital!

Hi,
I am new to this forum so am a bit anxious about what to write!!
Since last August I was very lethargic, no energy etc. My GP put me through various blood tests and scans for months before I was referred to a haemotology department in fear I had lymphoma. Luckily this was not the case but after a colonoscopy it was discovered I had Crohn's. I only got this diagnosis at the beginning of March and 3 weeks later I ended up in hospital with a flare up! I was in for 6 days. I found it very odd having a flare up so soon after being diagnosed. I am only 21 and am finding the diagnosis very difficult as I feel like it's already controlling my life. Any advice on coming to terms with the disease would be appreciated.
 
Hi!

It's difficult coming to terms with a Crohn's diagnosis and everything that comes with it, especially when you are very young as you are. I was diagnosed at 17 (in 1996!!) and remember feeling very frustrated that just when I felt like I was at the beginning of everything - leaving school, wanting to go off travelling around the world - I was suddenly lumbered with this chronic illness that I would be dealing with for my whole life and all these pills to take. It's not easy but mostly you do come to terms with a lot of it and it's really good to have people to talk to on the forum who have been through similar things.

Know that you aren't alone and there are lots of people here who want to support you. And don't worry at all about what to write in posts - there's no tmi here or worries about venting about your feelings and frustrations. We all get it. :)
 
Hi,
Thank you so much for your quick reply!
This is exactly how I feel - being diagnosed so young means all this is just the beginning!! :( I have been signed off work since August! I have just started another course of prednisolone, 40mg for 2 weeks then reducing 1 tablet per week. I gained a stone on my last course of steroids so am also worried about gaining even more this time round!!
 
Yes, pred can be a nightmare for some of us...maybe quite a lot of us. If you struggle with steroids (I did and the mood swings and depression were a deal breaker for me) then it's good to know that in the majority of people a course of Exclusive Enteral Nutrition (drinking complete nutrition shake-like drinks for 6-8 weeks instead of normal food) is a similarly effective option - and without the side effects. It's actually better at achieving mucosal healing...which leads to a better long term outcome :)

Definitely talk to your doctor about it. They can prescribe a variety of different formulas - Modulen is often used for IBD but something like Fortisip will do the job just as well for most people (and tastes a bit better too though I think Modulen is just fine)

Has your doctor talked maintenance treatment options yet? A lot of people need a maintenance med to succesfully get off steroids and to reduce the likelihood of recurrence - usually an immunomodulator (like azathioprine, 6mp or methotrexate) or a biologic (like infliximab or adalimumab)

You've been thrown in at the deep end with a hospital admission and two rounds of pred...it's a lot to deal with. And very hard too having to be off work and have your normal life taken away from you. It's not always easy talking about this disease to friends or even family but it certainly helps if they begin to understand a little bit. And it's great to have somewhere like this forum where people can share their experiences and make it a little less lonely.

Hopefully you and your GI together will find the right treatment for you soon so that you can get back to doing normal things. Never feel bad about asking lots of questions and getting your doctors to clarify or go over things until it's clear what they mean.

You really need a doctor who listens to you and all of your concerns and works with you. Sometimes it can become clear that a doctor isn't doing that and I think it's important to ask to see another doctor, whether at the same hospital or to get your GP to refer you to a new hospital, so that you can find someone who will allow you to work as part of a team.
 
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