My story...

CICRA is a charity that supports children and young adults who suffer with Inflammatory Bowel Disease. Crohns disease and Ulcerative Colitis are a type autoimmune disease that affects the digestive system but can also manifest itself elsewhere in the body. The immune system over compensates causing extensive damage to the digestive tract. At the moment there is still there is no cure and disease activity is managed with diet medication and surgery depending on a person’s symptoms. No two people are exactly the same and what works for one person may not work for another. It's not only the symptoms of these illnesses that are difficult to live with it is also the side effects of medication used to treat them.

 

Someone once told me what makes you different is what makes you beautiful. I was told I had Crohns disease when I was 12 years old - but I do remember having symptoms years before. My earliest memory was the agonising pain and I can remember staring into the toilet terrified at all the blood. At 12 years old I could not comprehend living with a chronic illness. I thought I would take some tablets for a few weeks and be fixed. I had no idea of the physical and physcological challenges ahead.

 

I was treated with high doses of steroids which initially made me feel much better but as soon as I tried to reduce them I just got ill again. This went on for years and the side effects took their toll - not only on me but my family too. I was bullied at school for the moon face (which I am still paranoid about to this day) and weight the steroids caused me to gain and my personality could change dramatically from one moment to the next. I felt like I had no idea who I was and I hated the person I was becoming.

 

Back then Crohns and colitis was still very rare in childhood and treatments were not like they are today. Treatment through diet for crohns was not seen as a first line treatment like it is now and I had to push the doctors to try it. I was so desperate to get off the steroids I begged them to let me try the elemental diet. Thank goodness they did because it worked and I'm still on it today! The elemental diet means not eating any "real food" and is nutritionally complete. It is in an easily absorbed state and helps by having an effect of basically making the digestive system think it doesn’t have to do any work.

 

I was taught to put a nasogastric tube in myself. This meant feeding a tube up my nose down the back of my throat and swallowing it into my stomach. I was then attached to a machine which pumped all the food into me. It was very tough having a tube on the side of your face especially at school - but I felt so well it was worth it and I learnt to embrace it as a part of me. After that I was also put on newer treatment of drugs called immunosuppressant’s. I continued to be tube fed throughout my teens and even worked part time and went to college with my tube in attached to my feeding machine. It wasn’t easy though and I still found myself in and out of hospital for weeks needing intravenous steroids but overall I was still much better on the diet.

 

I had once told one of my doctors I would love to become a paramedic and she laughed in my face and told me not to be so ridiculous. She may have been right but if I didn't at least try - I knew I would always feel Id let myself down and as they say shoot for the moon if you miss at least you will land in the stars - I was determined not to let this monster inside of me steal my dreams and aspirations too.

 

So I began to set myself small goals. I joined the gym, I then became a volunteer community first responder with the ambulance service and I decided to finish my duke of Ed gold award. I had started it when I was at school but because of my lengthy hospital stays and time off I had fallen behind everyone else.

 

I suppose I could have quite easily chosen the easy route to complete my award but those of you who know me - me being me with my all or nothing personality I probably chose the one of the most difficult. I travelled to Kenya with complete strangers to work with a charity looking after street children and then I achieved my goal by climbed Mount Kenya! Looking back now I don’t think I truly realised what I was doing until I got on that flight - I hadn't even been out of the country before!

 

When I got to the top of that mountain something clicked inside my head - no-one could stop me from achieving anything I put my mind too now. If I could climb Mt Kenya despite being in constant agony - and the small matter of being a VERY girly girl then I could become a paramedic. Though I initially divided opinion as being quoted "Too blonde and PINK for the ambulance service!!" Honestly I have no idea what they mean?! I’m proud to say I've proved everyone wrong and I love my job.

 

Over the years I have learnt to accept my condition rather than fight against it. I have had to accept I have to listen to my body and look after myself as best as I can. I have had to learn to do things in a different way and at my own pace and I have had to accept that living with this illness is an unpredictable journey where taking one day at a time or even an hour at a time is sometimes the only way through the storm.

 

Like most people with any autoimmune condition I often look really healthy even though I might be feeling awful inside. The constant exhaustion and pain is difficult even when I’m at my best. Any added complication such as a simple cold or infection can cause my immune system to overact making everything else much worse. Its a delicate balancing act. The side effects of the steroids have left me with brittle bones and I now have a type of inflammatory arthritis affecting the majority of my joints and because of the chronic pain it is causing my bladder to spasm and I now have to self catheterise too. Due to malabsorbtion I still often get dangerously low potassium levels and have to go into hospital for IV's.  Believe it or not - this all comes from having Crohns disease and I really am still one of the lucky ones! So Crohns and Colitis isn’t just a tummy ache. These invisible conditions can affect every bit of your body and your life and everyone else around you.

 

Before I accepted my condition I'm so ashamed to admit that I used to wish my life away and feel sorry for myself. Now I try to stand up tall and remember how lucky I am because I want to make my difference to the world. I have learned everything in life that is deemed as a negative also has so many positives. Somehow you have to try to make the most of difficult situations and never lose hope. But the most precious gift my illness has given me is to value all the little things in life and most of all my friends and family. I just wish there was a way to make you realise how much you help make every day easier just by being you. I would be nowhere without you.

 

So once again thank you to every one of you for your support.

 

Clairey