Crohn's disease, my story...
Please beware this is a graphic story of my experience after a Panproctocolectomy (the removal of the large bowel, rectum and anus).
My story so far…
I first started with Crohn’s disease when I was sixteen. It started just as I was taking my GCSEs at school. I found this really hard and was off school most days with crippling pain. I was losing vast amounts of blood every time I passed a motion. I’d get cramps and bowel spasms all day long and was going to the toilet around twenty times a day. Sometimes I’d get caught short and mess myself. It completely cut me off from my social life. I didn’t go out anymore and thought of any excuse to avoid my friends.
I went into hospital when I was sixteen for five weeks to have intensive steroid treatment along side TPN (Total Parental Nutrition, feeding through a vein directly into the body).
I lost weight rapidly. I went from a healthy eleven stone to seven within weeks. Weight loss was really hard for me to deal with as I hated being skinny and weedy. I looked like a skeleton, just skin and bones.
The next few years were the same, a period of being well followed by a period of being unwell. The doctors tried everything from Immunosuppressants, steroids and Infliximab to specialist diet plans.
In March 2006 whilst out of remission I was told by my consultant that nothing more could be done for the part of my bowel that was inflamed with Crohn’s disease. No amount of steroids or Immunosuppressants could heal it. There was no other choice but surgery.
At twenty three the idea of surgery scared me. It was suggested that I’d have part of my bowel removed and a temporary illeostomy. After further investigations I was told I’d actually need permanent surgery. I’d need to have my large bowel, rectum and anus permanently removed and an illeostomy formed. From being told this to actually having it done was just three weeks. I don’t think it really hit me until after surgery just what a big change it would make to my life.
After surgery I was in chronic pain. Throughout the night I lost pint after pint of blood. A nurse spotted the drainage bottles beside my bed were filling up rapidly. She alerted the doctors and they confirmed I’d gone into tachycardia. I didn’t have enough blood in my body to pump around all the organs. The doctors gave me five bags of blood over the next hour and a half. It helped and seemed to get me back on track. The same nurse contacted my father and told him I was critically ill. He came into hospital immediately and sat by my side. I don’t remember much of that night, apart from seeing my dad crying in the chair beside me, holding my hand and telling me he loved me. It’s something you wouldn’t wish upon anyone.
The next day I felt shooting pains all the way down my spine. I’d had an epidural put in place during my operation and it was in the wrong place so wasn’t as effective as they’d thought. The second was placed too high and had to be taken out because it started to affect my breathing. It took them four more attempts to get one in place that worked.
Whilst the operation was successful there were many hurdles ahead. Four weeks after surgery as I was due to come home my stitches broke down and the contents of my bowel started spilling through. I had several fistulas that had worked their way to the surface. I had to stay in hospital for an extra month whilst they slowly healed themselves.
Whilst all this was happening foul smelling blood started leaking from my back passage. I had a slow internal bleed and for some reason it wasn’t clotting and stopping. A sack of mucus was also pressing on the nerves at the bottom of my spine. I’ve never felt pain like it. Every time I stood up old stale blood would come pouring out down my legs. The only way to correct this was with another operation. This would involve undoing the stitches to my anus, cleaning out my insides then inserting a tube to drain away any excess fluid.
I was put onto a PCA (patient controlled analgesia) pump. This administered a small dose of morphine every time I pressed a button. This seemed to be a lot more effective than the epidural in controlling my pain.
Throughout this my fiancé stood by me and visited me everyday. She was my rock and without her I’m not so sure I’d have had such a positive outcome. For months she came home after work, got a tram, a train, a bus and a taxi just to visit me. I had my own room in hospital and every time she came thought the door I lit up inside. Just to see her face, her smile meant the world to me. Many times I asked myself if I should leave her as I knew deep down her deserved so much more. She stood by me through my darkest moments and that’s something I will never forget.
Slowly everything healed up. I spent a total of five and a half months in hospital throughout 2006.
Just before Christmas 2007 I was rushed back into hospital with gastroenteritis. I spent another two weeks in hospital on antibiotics and steroids. Just after Christmas I was rushed back in with gastroenteritis again, spending another few weeks in hospital.
Currently my Crohn’s has flared up again and it’s making me really nauseous. Last week I had an Infliximab infusion and I’m also taking a course of steroids. I really hope this settles it.
I understand Crohn’s is for life and I’ll always have to live with it. It can affect any part of the digestive tract, from your mouth to your anus. I think having a positive outlook helps and I couldn’t be luckier to have my fiancé and understanding family and friends. Also I must praise all the health care professionals that have helped me along the way, from the doctors and consultants to the stoma care team and nurses. Every one of them has made a massive impact on my life. Having Crohn’s has defiantly made me a stronger person and I value my health more now than ever. I don’t know what the future holds but I can be safe in saying I’ll tackle it head on with everything I’ve got.
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