I’ve looked back on my page and although I’ve spoken a lot about Crohn’s, and posted links to leaflets and so on I’ve not actually written much explaining what it is. So time to put that right! Here’s my understanding of what it is.
Crohn’s is an Inflammatory Bowel Disease (IBD), which as the name suggests is a disease of the gut, where parts of it become inflamed, so if you look at a cross section of the affected part, the gut its self is fatter than it should be, meaning that the inside where the food passes is thinner than it should be. These narrowed areas are normally referred to as a “narrowing” or “stricture” in the digestive tract. As well as this its common to get ulcers on the inside lining which can be really sensitive and painful for food to pass over. These ulcers can also rupture and bleed, leaving behind smooth scar tissue instead of active, working gut. With Crohn’s, the inflammation and ulcers can occur at any point; I’ve had it in the large and small intestine as well as the colon. This was all removed last year in my operation, however I have new areas of active Crohn’s in the large intestine show up since then.
It’s a disease which is not static; what I mean with that is that it goes through stages of being really active where you get a lot of inflammation, ulcers, and therefore lots of symptoms. These periods are referred to flair ups. Then you get periods of remission where everything calms down, you get less inflammation, less ulcers and less symptoms. I like to think of the different periods as the good, the bad, and the ugly. The good times where you are in remission, bad times where you have a flair up and the ugly times where things just get scary.
I’ve had a few ugly times over the years; the first one being in 2009 when I wasn’t feeling right so I went to bed early one evening. I got up a few times to go to the toilet to find I was passing blood. Stupidly I under estimated the amount I was loosing and decided on just going to the doctors in the morning. This turned out to be a really bad idea; a couple of hours later I made it as far as the bathroom door before passing out, my head taking a large chunk of the sink with me on the way down. Fortunately I was at home with family, who called an ambulance. It was suspected that some of the ulcers in the gut had ruptured which was causing the heavy internal bleeding, and that I passed out due to blood loss. I was taken to hospital, where I was given two blood transfusions and a dose of steroids to help get me back on my feet.
The symptoms that are common when you are going through a Crohn’s flare up include: really bad abdominal pain, extreme fatigue, weight loss, diarrhoea, and can cause problems with joint and back pain thanks to the inflammation in the body. All of these except for the joint pain I’ve had on a very regular basis during flairs. I’ve been through stages where I’ve had the really bad abdominal pains every single meal time for weeks on end. I’ve had periods where I’ve barely been able to drag myself out of bed, where doing the simplest easiest things have completely wiped me out. I’ve had years where I’ve had to plan every single day out on where I’ll be able to make a quick dash to the toilet. It’s a disease which really does have a massive impact on your whole life.
There are some forms of medication that can be used to manage the Crohn’s and help to keep it under some level of control, however there is no way of curing the disease. I have been on a couple of types of medication over the years to manage it, and as you will know from this blog I have been through surgery to remove affected bowel. Despite this surgery I still have Crohn’s and once again have active inflammation in the gut. Newer forms of medication are being researched, and more funding is being generated by brilliant charities such as Crohn’s and Colitis UK, who also support people with Crohn’s, Colitis and other forms of IBD. I’ve done a few events in the past to raise some money towards this charity and have more things lined up for the future.
As well as this fundraising there are some amazing groups that have been set up to provide support for people with these disease. Groups such as #GetYourBellyOut have really done a huge amount to support people with Crohn’s and Colitis, to help people connect to ask advice, to share problems and to support each other, as well as helping to raise an amazing amount of money towards Crohns and Colitis UK.
Well that was a very brief overview of what the disease is, I probably should have done this a while ago! But there we go, now I’ve finally written this I hope it was useful. If you’ve read that and would like to know a little more about anything I’ve touched on then do feel free to leave a comment or get in touch.
Thanks for reading, have a great day.