I’m moving away from Castles once again to quickly talk about Crohns disease, ahead of World IBD awareness day on Monday. I will be back to talk about undermining fortifications during siege warfare, after you’ve indulged me in this.
In 2008, I was diagnosed with Crohn’s Disease. I remember the weeks running up to my diagnosis quite vividly. Our school held ‘Activities Days’ at the end of the academic year for first, second and third years, and I had been scuba diving in the swimming pool at school. Yes, that is as pathetic as it sounds, but following my diving I developed a cold. Over the following weeks, my weight plummeted to around 40kg and I became racked with intense stomach pains, diarrhoea (a word I’m so familiar with I no longer need a dictionary,) and rather heavy bleeding. We started getting very worried, and we saw the GP. This was clearly no ordinary cold.
Digestive System according to Crohns and Colitus UK.
I’d prefer each label to just say “This doesn’t work”
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, where they put cameras up your bum and down your throat respectively, and the following day under general anaesthetic I had the procedure.
I feel this is a good point to say they don’t do me that kindness anymore. For the most recent colonoscopy, I had to use the grin and bear it method. For any of you snarky enough to suggest I do that normally, I’ve never encountered one of those that can go around bends that far inside.
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 and not at all fatal.
Remember this for later, as my whole understanding of my condition came from these words.
I was put on immunosuppressants, called Aziothiaprine, and the Steroid Prednisolone. Prednisolone is the devil’s drug. It might work in that it can reduce inflammation quite remarkably, but it’s list of side effects takes up several pages and there’s not much you can do to prevent them. When I was this age, I only suffered a few of the lesser side effects, namely terrible acne and a swollen face.
I didn’t know whether I’d upload this photo.
It’s the only one I have dating from 2009 and it’s from when we repainted my walls. The baggy clothes hide a lot so look at my arms, and of course you can see just how the steroids affected my face. I don’t bring this one out for visitors, anyway.
When I was on them for the final time this year, I had been on them for 5 months at the maximum dose, and they messed with my head. I was bad-tempered, paranoid, and would quite easily have massive panic attacks at the drop of the hat. Also, they didn’t heal the inflammation that final time, so I’m a little annoyed with them. All the bad, none of the good.
Every drug I ever tried, and there were a lot of them, would only work for a few months at most and then the sh*t would hit the fan again. Liquid diets, biological immunosuppressants that I had to self-inject, infusions which I would have to sit in the hospital to receive over a period of several hours, supplements for the nutrients I just couldn’t absorb were all taken, and all failed eventually. I was proving to be quite a resistant case.
2010, a better year.
One of the most effective treatments in the early years was a liquid diet, which I had to take through a naso-gastric tube. There are definitely no pictures of this; I remember running to my guidance teacher the day I found out it was School Picture day to refuse to be involved in any way. On the first day of my 6 week stint of having a bogey-yellow tube sticking out my nose, I stood before my English class to give an assessed talk. Discarding my original (crap) speech about some holiday, I spontaneously spoke about my Crohn’s at some length. Top marks for the talk, but who knows if my teacher just pitied me! However, that was probably the first time that I realised I couldn’t keep my illness totally to myself. Unless I was prepared to explain what I was going through to others, I couldn’t expect them to understand. A first year once asked me in the corridors if I was getting cocaine through the tube. I couldn’t contain my laughter.
In my Undergraduate Gown 2011
However, then I went to university, and it was amazing thanks to the injections of Adalimumab I had to give myself. My health for my first two years 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. 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. That would be out of the question now! I came off all the medications and for the first time in forever, I was in remission.
In Montpellier, heading towards Barcelona in early 2012
However, it didn’t last. Things like that rarely do, it seems.
Last summer, things began to get worse. A potent combinations of stresses and strains hit me hard and my health began to swiftly decline. My return to University in September was not hailed by the drunken debauchery of fresher’s week, instead I had to enjoy life as a teetotaller, drinking cranberry juice in the union as it was one of the few non-fizzy-not-water solutions to my alcoholic avoidance.
I was worst in the mornings, and of course that is when all my classes were. By the end of the semester, I had missed one too many and I was called in to see the Director of Teaching. I had received notice that I had failed a module due to my non-participation, and not even the support of the disability team, the Pro-Dean and the tutor and module coordinator whose classes I had missed was enough to prevent me having to go through the appeal system. Though it was eventually lifted after I had travelled north to get an up-to-date doctor’s letter, the damage was done. Crohn’s responds to stress, and dear God was I stressed.
I was admitted to hospital before Christmas, and it was decided that I wasn’t all that bad though things were definitely going downhill. I was given a new course of drugs and told hopefully this will work. I declined further. It was at this stage that my days started to begin at 4am every day, with my symptoms progressively easing back off towards lunchtime. Ever spent three hours on the toilet? It stops being comfortable after the first 10 minutes and no amount of books can quell the boredom.
I was then admitted a second time, in the final week of January just as classes began to start. I was rushed back up North by my mother and my ex, I’d spent the previous day trapped in my bed unable to move due to muscles pulled in my back from strain. Is it too much info to say I put my back out on the toilet? Probably. Now you know.
I had just had an MRI on the monday and somehow the laxatives I had to take to get a clear picture of my bowels had manage to seriously irritated them. That week was quite easily the worst experience I ever had with my Crohns. Having to choose between intense back pain and making a mess of the bed is not an easy choice to make. (Always the back pain, I hasten to add.)
They treated me with IV steroids for a week and I was released on a liquid diet, a new immunosuppressant called Aziothiaprine (which takes 6-12 weeks to kick in,) my injections and the steroids. I was on literally every drug they could possibly give me at the same time. I was told surgery would probably be inevitable, but I would hopefully be able to stall it with the potent cocktail of drugs I was on.
Still Smiling, but Getting more unwell in February 2014
About five weeks later, on the 7th of March, I had to go in again. I will spare you a day by day account of what happened. 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.e. explode) I would probably die. I still couldn’t choose surgery though, things felt like they were getting better. On the Thursday, I explained this to my parents. As long I was still feeling like I was getting better, I can’t choose surgery. Also, Crohn’s is manageable, it doesn’t need surgery. Crohn’s is not fatal, it won’t kill me. Also one of my drugs hasn’t kicked in, it could be the miracle that I need.
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. All the doctors looked somber. One of the ladies actually looked like she was about to cry (and thanks for that, it really helped ME hold myself together, not.) The situation was now at a critical point and should I not elect for surgery they couldn’t guarantee I’d see Monday.
It wasn’t much of a choice for me as both seemed frankly rather awful, but one result was infinitely preferable to those who would be left behind, so I had an ileostomy the following day after my grandparents rushed up to see me. I was quite weak by this point, with no guarantees, so I spent the Friday afternoon gleefully planning my funeral. I’m not kidding, the mind does funny things when it’s under that kind of strain. I actually found this incredibly enjoyable much to the horror of everyone around me.
I would like to take this opportunity to point out the reality of living with a condition like Crohns. 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.
The weeks following my operation have been hard. We have just passed the second month anniversary of the operation. I have had serious complications, including a partial obstruction that for a week had me in more pain than the surgery itself. I had to withdraw from university, losing all the work I had done for courses I seriously cared about, and I lost a job opportunity that would have given me a bit of a leg-up in my field. 4 weeks ago, I separated from my ex-partner, and I lost my best friend.
However, let’s not lose sight of the positives. 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. This blog, which I neglected for three months before picking it back up last week, is one of the results of that, and it has seen moderate success. Who would ever have thought 7000 people would be interested in the development of a church on an island? I passed my driving theory test, and I am booked on a course which should have me driving properly by the end of June. I have started my work as History President, and I’m hoping that I will go far with that. Also, as everyone knows, I’m never, ever going to get fat. Ha!
With our Sand Dunnottar Castle in St Andrews last Thursday
For the past two weeks, would you believe I’ve actually been quite happy? I can go home to the most beautiful town in Scotland and play in the sand, drink cider in the sun, even watch the occasional tornado spin on by, and who’s going to stop me? It’s certainly not going to be my Crohn’s.
I wasn’t kidding about the Tornado. St Andrews on Wednesday. RUINED our trip to the beach.