In 2008 Jack Carr heard two words that would change his life drastically. Words that until that point didn’t mean much to him as a 14-year-old boy.
Crohn’s disease. Two words that probably mean very little to a lot of people, but words that Jack and many charities feel there should be more awareness about.
Now 20, Jack says he remembers the weeks leading up his diagnosis of the disease, which causes inflammation of the lining of the digestive system. Back then he was a pupil at Mackie Academy in Stonehaven and began to feel ill after catching what he thought was a cold after going scuba diving.
But his symptoms were not your average cold-related ones. In just eight weeks his weight dropped more than a stone and he was racked with intense stomach pains, diarrhoea and heavy bleeding.
“We started getting very worried, and we saw the GP. This was clearly no ordinary cold,” Jack said.
“I was referred to hospital and seen the following day in Dundee, where they started testing me. A day later, in Aberdeen, I was admitted to the children’s ward and began fasting for a colonoscopy and endoscopy, and the following day under general anaesthetic I had the procedure.
“I received my diagnosis the following day. It was incredibly fast, but then I had been sinking fast. I was told I had Crohn’s disease, an incurable condition that, they told me, was relatively easy to manage.”
After that Jack was put on a range of medication but they would only work for a few months before his condition started to deteriorate again.
However by the time he went to university, and was on a round of injections of Adalimumab, his health was “remarkably tolerable”.
“Don’t get me wrong and think it was all sunshine and rainbows but, for the first time, my symptoms were manageable,” he said.
“I was able to go out and drink with my friends, with no thought to my body. I could do literally anything a normal student could and it was brilliant. I went on trips with my friends, I got involved in more things than I could keep track of and I even hitchhiked across Europe for charity. I came off all the medications and for the first time in forever, I was in remission.”
Unfortunately Jack’s good health didn’t last and last summer his condition hit an all-time low. By Christmas he was admitted to hospital and tried a new course of drugs hoping this would turn things around.
In January he was back in hospital where he was treated with IV steroids for a week before being released on a liquid diet. He was told however that surgery was probably inevitable.
“About five weeks later, on March 7, I had to go in again. I was on IV steroids and to me, it felt like things were easing up, even as my consultant told me that my blood results were getting worse and I was holding myself away from surgery by the very tips of my fingernails.
“On the Wednesday after admission, I was warned I was entering dangerous ground. Should my bowel perforate, I would probably die but I still couldn’t choose surgery. Things felt like they were getting better and I was too scared to enter the unknown.
“On the Thursday, I explained this to my parents. I was still feeling better, I can’t choose surgery.
“On the Friday, I woke up with an acute pain in my left side. After an X-ray during which I’d broken down in tears as I personally accepted the situation, my consultant came in for his morning round and his demeanour was different.
“After a week of laughing and joking around, all the doctors looked sombre. The situation was now at a critical point and should I not elect for surgery they couldn’t guarantee I’d see Monday.”
Jack eventually decided to go through with the operation to have his large bowel removed. It was a decision that he did not find easy to make.
“The reality of living with a condition like Crohn’s is it doesn’t go away, and when nothing ever works to relieve it, it becomes very easy to lose hope.
“Choosing between life and death seems easy in retrospect for me, and for anyone looking in, it must look like the height of melodrama.
“It’s hard to convey the fact that, to my evidently seriously depressed mind at the time, I had just been offered a way out. Life with an ileostomy is not a bad life at all, but it doesn’t seem that way until you’ve had it.”
It has been two months since Jack had his operation and is at present symptom-free, a condition that could last the rest of his life. He attributes this to the fantastic work of his medical and surgical teams, whom he says he will always be indebted to. But his life has drastically changed since he first became ill and he feels like a very different person.
Due to his illness, Jack had to leave university, although he plans to return in September, and he lost an opportunity to take up a job offer that could have helped his future prospects in his specialised field.
“I’m trying to not lose sight of the positives,” he added.
“I have been given me-time for the first occasion in years. I’ve always been too ill to do everything I wanted, and for the first time since I was about 14 I’m genuinely free to use my time as I see fit. . I’ve passed my driving test at last, started a successful blog and I’ve had a lot of time to explore my own interests.
“Crohn’s is a condition that affect a significant percentage of people in the UK, yet it is an illness that appears to be chronically misunderstood. I think the charities do a lot to raise awareness but I think more could be done to make people understand it more.”