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Living With Crohn’s Disease
April 3, 2014
I was 19 years old, taking a gap year before starting university, and about two weeks away from going on a lad’s holiday to Magaluf. You can imagine what my intentions there were, but if not, then just watch Sun Sea & Suspicious Parents to find out. I had a gap year job working in market research and was really excited about what the next few years had to offer: three years of endless partying, basically…and that’s where my life was turned upside down.
The turning point
Out of nowhere I started shedding weight, and I don’t mean I stopped eating; I’ve always eaten healthily (volume, not always content) but it just dropped off. I’m talking going from 10 stone down to 8 in under a month. You know something’s wrong when everyone at work is asking if you’re ok. I also started getting agonising cramps in my abdomen, sort of like being stabbed repeatedly with a blunt object. I was starting to look emaciated, and a friend even described me as looking like “a hardened drug addict”.
I’ve never been actually stabbed with a blunt object, thankfully, but when something can put you on the floor in the foetal position, I’d say it’s a fair comparison. To top it all off, there was the blood….. My mum, no messing around, rushed me to see the GP and fortunately, because he was so fantastic, he recognised the issue straight away and referred me to a specialist bowel clinic, St Marks Hospital in Northwick Park, who are a world leader in the treatment of chronic bowel conditions.
I was very quickly diagnosed with Crohn’s disease. To put it briefly, it’s an auto-immune disease, where your body thinks that part of your bowel or digestive tract (this goes from your throat, right through to the back-end) is not actually part of your body, so sends in your immune system to attack itself. All of the above makes it sound like a terrible affliction, but in truth, if you manage it properly then you can live relatively problem free…well in my experience so far. That’s not to say it’s been a picnic…
I’ve put a link below for full information on it, but want to keep this more about my personal experience.
Needless to say I cancelled my lad’s holiday and continued down a slightly different path. I did try to go to university, but I only lasted one term. It was extremely difficult meeting new people having lost so much weight, feeling tired all the time and couldn’t stomach any alcohol…or food. My self-confidence had been shot and I really didn’t feel like socialising; hardly the perfect recipe for starting university. I just wanted to be somewhere where I felt comfortable, and that was at home with my family, which is quite funny considering only a few months before I couldn’t wait to see the back of them (in a rebellious teen kind of way – I love them dearly!).
In all it probably took me about five years or so to really recover from that first bout, and is probably responsible for my persistent immaturity (not the worst side-effect) and also a possible reason for my stubbornness. Since being diagnosed I’ve had to push through pain on a daily basis, so building a certain resilience to things I guess has been natural. It tends to be quite difficult to sway me from doing what I want, and my friends all now joke about how stubborn I am. I still maintain that Shami, my good friend and Co-founder of Grub is more stubborn though…
Friends and support
Talking of friends, they were great when I first got diagnosed (and still are), and it’s important to have a support network, no matter how small or big. They were always around keeping me company. Sometimes I do wonder if they really understand what I have to deal with on an ongoing basis though. I don’t blame them; it’s very difficult to understand if it’s not actually happening to you personally.
I didn’t want to come across too needy, and I had this great sense of not wanting to be treated any differently just because my body had decided to screw me over. From the ages of about 21 through to 26 I didn’t look really look ill, still underweight (I can’t bear to see pictures of me at that age), but underneath I was still in pain on a daily basis. Sometimes it would take me hours to get to sleep just because I couldn’t find a comfortable position, and then just when I did…stab. Just little things like eating vegetables was a problem because of the fibrous nature, so I had to develop a diet that consisted of mostly rice and chicken, with smoothies. If I’d have known about insects at the time, they would have definitely been on the list. I’m not endorsing them as any kind of cure or treatment but their nutritional content is, however, astounding and certainly worth pursuing by medical nutritionists.
The road to remission
I have been in remission for about a year now, but only after what I can only describe as the worst year of my life. After getting an infection in my hip (Psoas abscess) due to a perforated bowel, I was back in hospital on a serious course of anti-biotics. I can only describe the pain – staying with the weapon analogy – as having a grenade inside my body at the moment of detonation, with time slowed down…it was that bad. I ended up having two major operations in a year to remove the diseased bowel, as well as a stoma bag fitted to allow healing; I can’t even begin to describe how awful it was at the start, but at least I was pain free.
The year felt like forever at this point, and I didn’t tell many people about it. In fact I kept it so quiet that at a friend’s leaving drinks (actually when Shami went travelling to investigate insects as a food source) I protected my stomach as someone gave me a hug goodbye and they jokingly said: “what’s up, you got a colostomy bag or something?” “Yes, I do actually” is what I should have said but, instead, I awkwardly laughed it off.
By the end of that year, I almost (only almost) wanted to keep the bag; I couldn’t remember feeling so well, ever, and I was nervous in the lead up to the reversal operation. I think I associated it to my current health, which was partially true as it gave my bowel the time to properly heal.
Fast forward to today, after several checkups and tests, I currently have zero signs of Crohn’s…for now. I’m fully aware that it will most likely come back, but I’m just enjoying being able to eat everything without worrying about repercussions, with energy levels I haven’t felt in a long while!
Life is about doing things, and in some ways I’ve seen Crohn’s as a blessing, because as soon as I’m feeling well, I’m off doing things, making sure I make the best of my time. Perhaps without this smaller window of opportunity I may not have this viewpoint. Grub is the perfect outlet for my renewed energy and health, but also in my pursuit of a nutritious diet that is crucial to Crohn’s sufferers like myself.