My life with Crohns Disease

Since 16th December 2010, I have been fighting against an auto-immune disease called Crohns Disease.

It's been an incredibly long journey, and one that hasn't necessarily been the nicest for me to experience. However, I have experienced it, and continue to do so every day, and I think it's only right that I write about my history in the hope that it might shed some light or hope on a situation for someone else.

When I became ill, I had no idea what was going on or why I suddenly couldn't stay out of the bathroom or eat anything. It was a really stressful time for me, and I look back on it now in wonderment of how I went so long without speaking to a medical professional.

I'm going to try and give a quick run down of the most important milestone in the last six or so years, so forgive me for the whistle stop tour.

  • I saw 11 doctors and 3 specialists from December 2010 - August 2011 whilst trying to find a diagnosis for what I was experiencing.
  • During those 11 months, it was suggested I could have liver cancer, leukaemia, and IBS amongst other things.
  • I was diagnosed the day before my sister's wedding via a Colonoscopy - a long camera whilst traverses your large and small intestine via your rectum.
  • Once diagnosed, I was put onto a near year long course of steroids and anti-inflammatories. Some worked, some didn't.
  • In April 2013 aged 20, I was rushed into emergency surgery for what the surgeon thought was appendicitis. I came out 5.5 hours later with an ileostomy because my large intestine has collapsed, and I ended up losing over a foot of my large intestine. An 'ileostomy' is where your small intestine is on the outside of your body, protected by a bag. I had a 'double ileostomy' so I had both the end of my small and large intestine stapled to my stomach. Your intestine isn't connected to your anus anymore and then all solid bathroom trips happen in the bag. It was horrific.
  • 12 days later I was allowed out of hospital to spend 51 weeks with my ileostomy. It gave me my life back. I was able to do everything I hadn't been able to do because I was housebound during the worst periods of my illness.
  • In November 2013, I was given the opportunity to reverse my bag. I declined, because I wasn't mentally ready for the surgery again, and I had only just made it back into the workplace.
  • In March 2014, I finally made the decision to reverse. It was a really tough decision, but my Crohns Disease was under control, I wasn't on any medication, and all the signs suggested it was the perfect time to put me back together.
  • I spent 5 months recovering from the reversal surgery, and had multiple hospital stays within those 5 months. I flared, and was badly ill again and ended up getting put onto medication called Humira. Again, this saved my life.
  • Now, I only visit the hospital for quarterly check ups and use the Humira injections bi-weekly. I haven't been in hospital for any length of stay since June 2014 and I thank my lucky stars.
I said it was going to be a whistle stop tour....sorry!

I sometimes find it difficult to speak about my Crohns disease, because in some ways I feel a little bit like a cheat. I feel as though since I've been on the medication, I don't qualify to complain because so, so many more people are struggling to get the medication, or get the help in general.

Did you know in third world countries, there are men and women with ilestomies who have to use a tin can to collect their waste product, and stop infection?! How can I complain when things like this are happening to my fellow humans?

I have been incredibly lucky in the fact that the United Kingdom has the NHS. Without it, I have no idea where I would be because the medication itself is expensive, without the visits to the specialists and blood tests and scopes and dieticians.....the list continues. Each of my injections costs the NHS £500. That's £1,000 most months, and so closer to £13,000 per year just on my injections. I will never stop being grateful for the incredible thing that is the NHS. I know some may say it would have taken a far shorter time to get diagnosed if I had 'gone private', but quite frankly, I'm not sure if the care would have been any better?

I remember going to Prague in July 2013, only a few months after I had the initial surgery and taking enough bags with me for the 5 day trip. Unfortunately for me, every single bag failed and by Day 2 I was bound to the hotel room, terrified of the bag slipping or breaking whilst I was exploring. Thanks to the power of TWITTER - I was able to get a box of bags and supplies couriered to me in less than 24 hours. The power of social media is incredible, and the fact that the support network for things such as this is so strong, I was able to continue on my holiday with no damage. Pelican, the company who supplied me whilst I was out there, will never stop hearing my praises.

In my time with Crohns, coming up for the seven year mark (wow!) I have experienced some really good times and some really bad times. I mean, having an ileostomy really really, did not stop me doing anything. I had boyfriends, I went dancing with friends, on holiday, go karting and abseiling. I wore jeans and tight tops, I took photos and stayed over friends.

"What doesn't kill you, makes you stronger."

Cliche, but true. I maaaaay have died after both surgeries technically, but I am still here and I am still fighting. The Humira isn't the best of medications, it's painful and causes some side effects, and the long term use statistics aren't fantastic but I want to fight one beast at a time. My current beast is being well enough to go to work every day, look after the house, and be a normal 24 year old. My beast in the future may be different, and so that's when Sam and I start looking into different options.

The disease is mine, and only mine, but that doesn't mean it only affects me. There are times when Sam has had to carry me to bed because I am too fatigued to move. There are times when my parents have had to pick me up off the shower floor because I was too weak to stand, or hold my hair back when I was sick on the first meal I'd eaten in months. It can be difficult to remember that something like Crohns affects everyone around you; your boss who worries if you're well enough to work, your friends who haven't heard from you in weeks because you're asleep all the time. It's exhausting and all-consuming for everyone, for a period.

I want everyone to know, whether you suffer from Inflammatory Bowel Disease, or sore knees, or migraines, or anything (!!) that there is always a light at the end of the tunnel. You might not see or feel it yet, but there is hope and you will learn to cope.

There were times when I was sleeping or 21 hours a day, and not able to speak that I wondered if I was ever going to live a normal life again. I'd missed applying to university, I'd basically flunked all my grades and I was stuck in bed constantly thinking about my future. Did I even have a future? Then, by pure luck, an opportunity for an apprenticeship in a local council opened up. I got the position, and then was scouted to work for the county Police without an interview. Now, I own my own home and manually renovate it, I work out and cook and see friends and drive again.

I sometimes look back and struggle to remember what the bad times were, which I think is a really good thing.

If you have any questions, please don't hesitates to ask me, but I don't think I can write anymore on this topic at the moment! Sorry for the essay, if you made it this far, you're pretty rad xo

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