My story

by Melanie
(UK)

Hi,

Sorry to bore everyone with another story but i feel like i need to talk about it as i have never even heard of someone else with the same thing as me!

I was diagnosed with crohns when i was about 16ish but have had it since i was 14. My GP refered me to a specialist when i was about 14 but every time i went in he said i had something different and was giving me all these drugs with no affect at all. I am now 20 and have had no remission period really it just gets better then worse again. I have felt like the only one with chrohns for so long. Only recently when i have asked for help from a dietrition has it been offered to me but i have had nothing from it yet. I live a relitively normal life as i am currently at uni doing dance, i dance constantly actaully and i have a part time job but i feel tired a lot of the time. I have also had a cough that came about the same time and i have never been able to get rid of regardless of the hundreds of times i have been to the doctors. I have never been given any help for my illness, i have just been told i have it, given drugs and told to get on with it.

I was wondering if anyone could give me any advice as i am stuggling with the fact that i am constantly ill at the moment and everytime i go to my specialist the news keeps gettin worse really!

Thank you everyone as this website has been really good.

^_^

Comments for My story

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Coping with Crohn's NEW
by: Annette

Hello,

Thank you for sharing your story. I am sorry that you are experiencing such a horrible time with this disease.

Crohn's disease is a chronic condition that can become extremely aggressive and can impact areas of your life for days, weeks or months on end. Sometimes it can seem as if your life is an uphill struggle.

I can state however that many people find that the disease seems to let up for periods of time. During these times, their health seems to get better and they feel normal. It is common for flare-ups to occur so expect that as part and parcel of the disease.

There are lots that you can do to try to improve your own personal situation and this means understanding the disease and how it affects you personally.

I understand that you are feeling fatigued and this is a very common side-effect of Crohn's so it's worth taking a look at the following:

It's worth assessing anemia. A simple blood test can determine this. Usually supplements are all that is required but for some sufferers, transfusions can be required. Multi-vitamins are good too, especially if your diet is not as good as it should be.

Keep taking your medication. If you find that you feel worse after taking medication then go back to the doctors and see if there is an alternative treatment for you. Fatigue can actually be a side-effect of your medication too. Don't just come off of them though, always do so under your doctors supervision.

You need to be able to manage your sleep levels too. This can be difficult but try to learn some relaxation techniques which can also help to boost your feelings of wellness. If you need to sleep through the day, then do so. Learn to work with your body and not against it.

Stress and Crohn's go hand in hand. Too much stress and you are likely to experience a flare-up. Try to reduce the stress in your life as much as possible.

Learning what works for you is the most important aspect of getting better or getting on with your life. No cure means you have to learn to manage this disease as best as you can.

Speak to a counselor, join various forums, find other Crohn's sufferers. There will be good days as well as some that are bad but once you understand how it affects you more, you may experience some light at the end of the tunnel.

Best of luck.



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