Steroids
So, by Easter 2018 it was clear that my journey with infliximab was over and my doctors decided that whilst they figured out the next step, I should go back on steroids. I started on a lower dose than I had previously taken, but this had next to no effect and my symptoms were getting pretty unmanageable. So, it was quickly decided that I would have to go back on a full dose of prednisolone. I wasn’t exactly thrilled with this decision; although I never had the obvious “moon face” style side effect from steroids, the other effects certainly weren’t ideal and my last experience with steroids hadn’t been as successful as my doctors had hoped. But at this point I just wanted to try and stop things from getting any worse, so I agreed to take the standard 8 tablets a day before weaning myself off them. But this didn’t seem to be working. Not only were my physical symptoms barely any better than before, but I was also experiencing arguably the worst side effects that steroids had ever given me.
I just didn’t feel like myself at all. I felt detached from everything, I didn’t enjoy the things I used to, and I found it really hard to engage in any work from university or even something as simple as watching a film. I then became really withdrawn, to the point where I temporarily moved out of my parents’ house into my grandparents’ old bungalow on my own- much to everyone’s concern at the time! In my mind, I thought I would prefer to deal with things on my own and I wanted more privacy and freedom (plus having my own bathroom was pretty necessary at this point). Since starting the steroids, I also had the worst insomnia I had experienced for some time and I thought that being alone in a house would make it easier for me to sleep. So, I spent a good couple of weeks futilely trying to entertain myself with work, films or books (with little or no success) and failing that, I just tried to spend the whole day sleeping to forget about how awful I felt. At this point I knew I was in a rut and something clearly needed to be done; I had to stop taking the steroids.
Liquid diet
After I told my doctors that I wanted to stop the prednisolone, they ran some more tests and concluded that I had become steroid resistant after being exposed to them many times in the past- that’s why they weren’t controlling my Crohn’s flare. They then agreed that I could cease taking them and suggested that while they figured out what to do next (you’ll notice there is a lot of this waiting around for doctors to decide what to do in my journey with Crohn’s over the years), I should consider doing another liquid diet- that old crutch.
So, I reluctantly got myself a prescription and started yet another liquid diet. I must say though, I was pleasantly surprised that, as opposed to the Modulen which I had previously been on, I now was offered Fresubin- an alternative in lesser quantities. These were pre-made drinks in a range of flavours (something I wasn’t used to with the Modulen). Because of this, although it was still as difficult as doing a liquid diet always is, I found it easier to stomach than I previously had. It was 6 weeks of vanilla, strawberry, chocolate and banana supplement drinks for me now.
Adalimumab
By June, my hospital had finally decided that the next step for me would be to try adalimumab- a biologic similar to infliximab, which I had previously responded to. Soon I was back up in London for my first dose; this time in the form of several injections. At first I was definitely sceptical about this format; I had only ever had infusions of infliximab through an IV. Plus, although by this point I was MORE than used to being used as a make-shift pin cushion, there was something which really made me cringe about having to inject myself. I had also read so many horror stories about how painful Humira injections were because of the citric acid used in the syringe, but I was pleasantly surprised to find that this had been changed to an epi-pen style dispenser. The injections themselves were done in my thighs and were relatively simple and painless; the nurse did the first one, I did the second. I did get a slight local reaction (i.e. a bit of a rash), but the nurse ensured me that this wasn’t anything serious. I was then given the details of the drug company my hospital was partnered with and told how to order stock that I could keep in my fridge at home. Once I got over the weirdness of injecting myself (relatively quickly actually), I was excited by the prospect of not having to drive 2 hours to London and 2 hours back every 8 weeks for an infusion as well as clinic appointments in between.
When I started adalimumab, I had been on the liquid diet for about 3 weeks, which meant that my symptoms were already improving massively as my bowel was resting. I was managing to do some exercise and have a few days out, but mostly I spent my summer revising tirelessly hard because, having left university at Easter and missing my first year exams, I was granted mitigating circumstances for my health and told that I could sit my exams at the end of the summer holiday instead and, presuming I passed, I could then return to university in September 2018 as a second year as I otherwise would have. I was relieved; I could continue my degree at the same pace as my friends, I just needed to sacrifice one summer and work hard. After a few more weeks I was feeling better still and even though I was still on the liquid diet, my doctors were convinced that the adalimumab was helping. Sure enough, I was able to sit my exams at the beginning of September, which I passed with flying colours (thank you). At this point I had just come to the end of the liquid diet and had started eating again without any immediate problems. To celebrate my mum took me to Sicily for a week, which was incredible!
But, even though I was as sensible as humanly possible (we self-catered and ate more or less exactly what I would have eaten at home as well as drinking only bottled water), towards the end of the week I started to get some mild symptoms again, but we just put this down to the change of scene – and climate; it was scorching weather and I really don’t do well in the heat! After returning home from a much-needed holiday, it was time to pack my things for my second year of study and, toxic waste bin and Humira injections in hand, I prepared to go back to university.
Looking back
Going on steroids on this occasion really taught me an important lesson: if a medicine is giving you unliveable side-effects, for goodness sake tell your doctors that you want to stop taking it. The side-effects would have been enough to put me off had the prednisolone been effective with regards to my Crohn’s symptoms, but the fact that it was ineffective AND causing me to feel terrible in other departments meant that for the first time, I had to make a case for going against what my doctors had suggested.
Prior to this, I would have simply gone along with it, but I knew my body, and the steroids just weren’t doing it for me at all. Its important to remember that as a patient, you shouldn’t sit quietly in the corner if you’re experiencing bad side-effects. At the end of the day, these drugs are supposed to enhance your quality of life, not hinder it. And, although I wouldn’t always recommend going against doctor’s advice, even gastroenterologists don’t know everything about Crohn’s- otherwise there’d be a cure by now and I wouldn’t be sitting here writing this blog! Its about communicating with your team and letting them know how you feel- physically, emotionally and mentally. For the best quality of care, your relationship with your doctors should be a two-way street- their theoretical knowledge of the disease and your practical experience of living with it.
As for self-injecting, that was a real first for me! It really showed me how adaptable people with chronic illnesses are. I suppose it’s a question of “needs must” and all that, but I remember a time when I was 10 or 11 (just before my Crohn’s journey kicked off) and I was adamant that I would never be pricked by a needle- be it for an injection, blood test or otherwise! I imagined it to be entirely traumatic, and even for the first few months of tests on my way to being diagnosed, I still professed to be scared on needles. If you’d have told an 11-year-old me that a few years down the line I would be injecting myself, I would probably have passed out. But there you go, having a chronic illness really teaches you how to adapt and get on with things without a fuss!
Me and My Crohn's 