Thursday, 26 May 2011

'I have Crohn's Disease' 'What's that?'

I think this is going to be a long post! But it is important!

Biological: Crohn's Disease is an auto immune disorder. This means my body doesn't realise my digestive system is part of my body, so it tries to get rid of it. (I have had someone laugh at this point, It is not funny!) This causes inflamation. This can occur anywhere along the digestive tract, from the mouth to the anus. It is catagorised as a type of Inflammatory Bowel Disease (IBD, Not to be confused with IBS).

Symptoms: Diarrhoea, which is frequent and recurring. It can often contain blood and/or mucus. Abdominal pain and cramping which is usually worse after eating. Fatigue, weight loss, malnutrition, aneamia, nausia, vomiting, joint pain, inflammation and irritation of the eyes, skin rashes, mouth ulcers, abscesses and fistulas. These can occur in any combination.

Question's I am often asked: Is it contagous? No, don't worry you wont catch it. But I'll try not to breathe on you if it makes you feel any better.
Is it fatal? No. well actually there is a posibility I could die, but it wouldnt be sudden, you would have been aware of me being unwell for a very long time before it got to that point.

I got my first symptoms in about July 2007. Started off with a lot of mouth ulcers. By Christmas, I had frequent diarrhoea, with blood, stomach pain, which would come in short bursts regularly, I could not eat, I was 5 and a half stone, I was aneamic, I got night sweats. We were constantly at the doctors, a couple of times each week trying to get them to do something. I was at first told to 'eat more lunch' but eventually they realised there was something very wrong and I got referred to a specialist in Jan 2008.

Diagnosis: I had frequent blood tests, an ultrasound, a barium follow through (Where I drank barium and they watched it pass through my digestive system on an x-ray) and a colonoscopy.
I was diagnosed with Crohn's Disease in March 2008.  I was lucky I could use privet health care with my dad's work which got me through diagnosis quickly.

Treatment: I started off on sterioids. They are horrible. People always make the joke about getting muscles and being like a body builder. No, they are anabolic steroids, they are illegal and not prescribed to anyone. These are cortico steroids which are used a lot in medicine. They are like a wonder drug. When you have been so so ill they make you feel alive! They give you energy, an apetite and a normal life again. They also give you osteoporosis, a fat face, mood changes, mania, and a weak immune system. Your body becomes dependant on them so you have to reduce the dose slowely, which means you are on them for months at a time, and I believe I have suffered from withdrawral symptoms once off them, like being sick.
I have also been put on Azathioprine which is an immunosuppressant. The idea is to weaken the immune system to stop it from getting me! I have had issues with this drug. At first I couldnt take the full dose due to a lack of an enzyme in my body, making me again lose my apetite. I have to have regular blood tests (At the moment every other week) to make sure it is not effecting my liver or my blood counts. In the past it has, which has ment I have had to come off it for a while.
Another drug which I have taken a lot of is Pentasa, or mesalazine. I love this drug. Its an anti inflammatory. I came off it for a while when I was doing well. But went back on it when I came of Azathioprine. I don't think it gives me any negative side effects.
There are many other drugs out there, and finding the right treatment can be difficult. I was lucky I found something that worked so well.
Often people need to have operations. This can mean removing part of the digestive system. My biggest fear is to have a colostomy. Where they take out your colon and leave you with a stoma, which is a bit of intestine they re-direct out of your abdomen wall. Although I know this is a last resort, and if it got to the point where I needed one it would improve my quality of life.

There is no cure for Crohn's Disease, I will have this for the rest of my life. I will go through periods of remission, where I have no symptoms. But that does not mean I am better at all. I will still be taking medication, which if I stop will make my symptoms re-occur. This disease is unpredictable. I might be well for several months and then suddenly feel really bad. I might be feeling fine all day, and then suddenly have a stomach pain so bad it is hard to stand up, and consequently have diarrhoea, then be ok again.

I now don't find it strange to have diarrhoea, I know it means things are not right but if it is my only symptom it doesnt bother me. I find it strange that most people don't get it very often!
I have had some people seem quite outraged that my doctors ask me about my poo! Well how else would they know how things are?? Yes it is not a nice thing for a young girl to talk about but this is not a nice illness!

Hearing people's reaction to what I have is the worst thing... This is my life. This is what I go through all the time, and some people would rather I didnt talk about it! Well I am sorry to offend anyone!
People need to know, becuase the more people that don't makes it harder for people with crohn's to live with it.

I have to see my gastroenterologist regularly so they can keep track of my progress. If I am well my disease does not effect me too much. I get very tired, and I often have stomach pain, but that does not stop me doing anything. I know I just need a lot of sleep. And there isnt anything I can do about the pain. I don't take pain killers for it, even when I am at my worst because otherwise how do I keep track of how well I am?

Ok, I've spoken a lot now so I think I will leave it... I hope I have helped you to understand Crohn's Disease and how it effects me. If you want to find out more is a good place to go. Also talks about Ulcerative colitis which is another type of IBD.

Thanks for reading this post, it is quite personal but I believe it is better to talk about it so people understand. :) x x x

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