Wednesday, 25 April 2012

{Crohn's Disease}

For those of you that have seen the move Bridesmaids, you'll remember the hilarious scene where Lillian and the girls get food poisoning and they all literally poop their pants. I too have been there *hangs head in shame* and it really wasn't that funny! The reason was not food poisoning, it was because of the chronic condition that I have, Crohn's Disease...... 


For those of you that haven't heard of it before, Crohn's Disease and Ulcerative Colitis are inflammatory bowel diseases. They can occur at any age and there is no known cure. I've had a quick look at some statistics on the National Association for Colitis and Crohn's Disease website (NACC) and it turns out that ulcerative colitis affects approximately 1 person in every 500 in the UK and Crohn's Disease is about 1 person in every 1000. The symptoms of the conditions tend to be bloody diarrhoea, pain, tiredness and loss of weight but the severity fluctuates so patients are likely to have periods of remission as well as periods of flare-ups.

It annoys me when someone finds out I have Crohn's Disease or IBD and then they mention that they too have irritable bowels or IBS. It's totally different and not the same at all. IBS isn't a dangerous condition, there's no obvious abnormality and it's really common. IBS can sometimes be relieved with diet and lifestyle changes whereas I'm having to take potent immunosuppressant tablets every day. (Sorry, bit of a rant I know, but it really is rather annoying!).

Anyway, I thought I'd share my story here in the hope that it might help somebody out there...

I was 21 years old when I was diagnosed with IBD. I was working in Edinburgh at the time doing a year's work placement and life was a bit stressful. My mum had recently passed away, I was living away from home for the first time and was struggling financially. For a couple of days I'd had a really dodgy tummy, and I couldn't think of anything that I'd eaten that would have caused it. I put it to the back of my mind and carried on as normal. However, a few months later, I had the same symptoms again. I went to the doctor and he asked me to hand back in a stool sample. It came back negative and I think then the next time I got the symptoms the GP did a blood test to check my thyroid, which also came back normal. By this point I was getting the symptoms frequently. I was exhausted, starting to lose weight, and no joke - I was probably going to the toilet about 40 times a day. I didn't like going to new places as I was always concerned that I wouldn't be able to find the bathroom. I was sent home from work a couple of times, I nearly fainted a few times, and once I was bleeding a lot from my bum which was really scary. The urgency that was associated with going to the toilet was awful... hence the mention of the Bridesmaids scene above. Thankfully, this didn't happen to me when I was out in public... I was in my own home in my pyjamas, but still, not nice!

I was finally referred to the hospital gastroenterology department and after a quick examination it was decided I needed further investigation. I then had a colonoscopy done. I'm not going to lie - it was not pleasant. They didn't manage to get round my colon very far with the tube as I was so badly inflamed at the time. I was informed that I had an inflammatory bowel disease and given a prescription for steroid tablets. At the time, they were unable to distinguish between Crohn's and Colitis and still to this day I don't know which one it is that I have, but the treatment tends to be the same.


The steroids were horrible, and I was on them for about 11 months. I wasn't sleeping, I was eating loads.... I got the typical steroid 'moon face'... and when I look back at photos I just look horrendous (I tried to find some photos of me to show you, but don't have any digitally and my scanner isn't working - not an excuse, honest!). It was a a difficult time, but eventually the consultants did manage to get my symptoms under control, and touch wood, I've been relatively healthy since with no major flare-ups. I was put onto a few different maintenance tablets (steroids are a quick fix and they aren't for long-term treatment), but was found to be allergic to them.

We finally found a treatment that worked for me and I've now been on azathioprine for what must be nearly 8 years. I continued to take the tablets whilst I was pregnant with both of my children, and I think this may be the cause of the obstetric cholestasis I experienced. To the outside world I look healthy, but I think I'll probably be taking these tablets for the rest of my life in order to manage the symptoms of the disease.

May 2012 is Crohn's and Colitis Month. This year the topic is Sport & Fitness. Thankfully, despite having Crohn's Disease, I've been able to get in shape and will be participating in a half marathon during the month of May (I'm raising money for Macmillan Cancer Support with my sister in memory of our mum). There are a lot of people with Crohn's Disease and Ulcerative Colitis who suffer terribly. I'm one of the lucky ones. The disease hasn't impacted on my life in a dramatic way and it hasn't stopped me from doing anything. I hope I continue to stay healthy...


12 comments:

  1. An old housemate of mine suffered from Crohns, it is a horrid illness and until she was diangosed and treated very debilitating. I'm glad you have it under control. I have done some work in the disease area as well on the different treatments for Crohns and some of them have unplesant side effects.

    On a different note, I do empathsize with the hanging your head in shame bit, apart from mine was something I had eaten, it took me by complete surprise while on a train to London to catch a flight to canada, and I was working on my laptop when I was suddenly gripped with crippling cramps. needless to say I didnt make the toilet quick enough. I ended up doing the rest of the journey knicker-less and despite the fact my jeans didnt seem affected, I rinsed the seat of them out in the train toilet wash basin and put them back on (I only had business clothes in my small suitcase) and once in vancouver found the nearest Mall and bought a new pair of jeans as I was so paranoid! It was a horrendous experience but one mu husband found hilarious and my brother once my husband decided to share it.

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    1. Oh no! I'm so lucky that I've never had it happen in public. I can laugh about my episode now, but at the time it was not nice and I felt horrendous.

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  2. I'd never even heard of Crohns disease until I started reading your blog. It sounds as though that early period of suffering was awful for you. It must have been really tough, especially dealing with it on top of the loss of your mother. Am glad you've got it under control now, and good on you for speaking out too, and raising awareness.

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    1. Thanks for your comment. It has been rather tough... I would appear to have gone through a lot in my little life! Here's hoping life is on the up!

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  3. My friend has really bad crohns, so much so she looks like a skeleton right now, heartbreaking to see and definitely not IBS. I have another friend I went to school with with ulcerated colitis. She has it under control but not after a long time of operations and medication. It is a hard disease and I admire anyone who lives with this. Hugs x

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    1. I really have been so lucky. I just hope I can continue to stay healthy. I'm back on healthy eating and am taking my meds regularly. I really should be looking after myself better. Silly me.

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  4. It's such a terrible disease. I can't imagine what it's like to deal with this on a daily basis and still function. I take my hat off to you.

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    1. Thank you. I'm lucky in that it doesn't really affect me day-to-day other than the meds I take.

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  5. I was diagnosed with UC in 1998, and it is an exceptionally debilitating disease. I self-manage all my medication now and am doing well. This is the first blog I have come across that deals with this issue, so thank you for informing people.

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    1. That's great that you are doing well. I must admit I've not had a look to see if there are other IBD blogs... my blog is a mix of allsorts, but IBD is part of me and so I felt that it was relevant to include it here. I hope you continue to stay healthy.

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  6. My Dad's partner has Crohn's and I'll never forget them coming to visit us after the birth of my first son. She was crying her eyes out one morning and couldn't look me in the face - it turned out she'd soiled the sheets in our spare bed. She was mortified, and also very scared as she still hadn't been diagnosed, and had no idea what was wrong with her. She lost so much weight, it was frightening for us all to see the change in her. So glad you can live a healthy life.

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    1. I think I was really lucky that I was diagnosed pretty quickly before I became very ill. I knew that something wasn't right and straightaway was at my doctor. I did lose some weight, but put it back on again (& some) after a year of being on steroids. I remember in the early days pre-diagnosis making sure that I knew where a toilet was at all times and I rarely went to new places.

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