I'm Dave and I have had Crohn's disease for 7 years now. I have started this blog for a couple of reasons:
1) To keep my family and friends updated on my condition (not that I don't like speaking to them about it - it can just get a little tiresome to repeat information. More importantly I always seem to worry that I'm boring them when I talk about it in my dull tones)
2) To provide an account of my upcoming Ileostomy surgery. Maybe this can help someone in future who's going to have to go through life changing stoma surgery.
I hope this blog turns out to be informative and helpful, maybe even witty at times - if even one person finds it to be any of these then maybe that means it's worthwhile. Whilst I am not generally the type of person to go on and on about life's problems, perhaps this is a good way to jot down my experiences and to get things 'out in the open'.
Crohn's disease is an auto-immune disorder affecting something like 150,000 people in the UK. The condition causes inflammation in the gastrointestinal tract causing swelling and pain. This can occur at any location within the tract between the mouth and anus. I, myself, only experience inflammation in my large intestine (the colon) and therefore I have what's known as 'Crohn's colitis'.
There are several symptoms which are typical of Crohn's disease which include (but are not limited to):
- Chronic diarrhoea
- Severe abdominal cramps
- Blood and/or mucus in the stool
- Weight loss
I have suffered all of these from time-to-time and it has become normal for me to expect some or all of these symptoms when I'm in a 'flare'.
Crohn's disease is one of two conditions which come under the bracket of Inflammatory Bowel Disease (IBD), the other being Ulcerative Colitis - an entirely different condition which presents very similar symptoms to Crohn's.
More information on Crohn's can be found in this very informative booklet from the Crohn's and Colitis UK.
About me (bear with me here!):
As I said before I have been diagnosed for nearly 7 years now and in that time I have, like most other 'Crohnies' had my fair share of ups and downs.
Pre-diagnosis I was suffering most of the above symptoms and I have to say that at the time my GP was very slow in identifying that I might have IBD. It took something like 2-3 months to get to the point of receiving my appointment to receive a camera up the back passage (a 'colonoscopy'), after which the diagnosis was clear. In the mean time I was having 10-15 liquid bowel movements per day, my weight had plummeted (I was thin to start with), I felt knackered all the time and I was scared. I lived on my own although I had been going out with a lovely young girl named Sam for about 7 months - she was very supportive and (not just for this reason) I promised myself I'd marry her one day, if she'd have me.
Once I had been diagnosed I started taking some medications to attempt to put my Crohn's into remission. It took about 3 months to establish any meaningful control but in the end a good blast of steroids was the order of the day (they make you feel GREAT!) followed by a longer term (3 years or so) treatment of another drug (known as '5-ASA'). During this time I would say that I never got rid of the Crohn's symptoms completely - but life was much much better than when I was flaring. In this time I left my job, went back to University for a year and became a structural engineer in the Oil and Gas industry. This would mean spending around 12 weeks per year on offshore oil rigs listening to and looking at wobbly pipework.
Then, about 3 years ago, my Crohn's took a turn for the worse. My medications didn't seem to be working reliably and I had to re-establish regular contact at the GI clinic. My specialist decided that I needed to try some different drug treatments - and so began the mother of all experiments to find something (other than the seemingly lovely, but otherwise dreaded steroids) that would re-establish a remission. At this point I could go into great detail about the hierarchy of drugs available to the GI specialist, some of which are very expensive (I'm talking £20-30k per year here), some of which are infused intra-venously and some of which you have to inject into your leg or belly tissue yourself at home. Alas, I'll spare you the details, but I tried them all and after 3 years I find myself at a point where I'm done with drugs. I'm done with the anxiety which comes with having to wait months to decipher whether or not they're going to work.
I am lucky. With this option of undergoing the Ileostomy comes a real chance that I can obtain a permanent remission. Not everyone undergoing this has such an "assurance". This said I must accept the fact that the Crohn's may return affecting me elsewhere in my GI tract in future (fingers crossed though - I am told this is unlikely for me).
I think that's enough for one blog post for now. Join me next time where I may just delve into some of the details of the ostomy surgery...
Thank you for reading my first post as I embark on this journey. And finally, I'd love it if you'd leave any comments you have about the blog or just to contact me about anything really. Just use the option below this post to get in touch.