First signs of a flare
After returning to school and being back on a relatively normal diet, I was starting to think that things were back on track for me. I had this whole Crohn’s thing under control. But in March 2013 my symptoms began to creep back in. First the cramps, then the nausea, then the diarrhoea. And to make matter worse, my erythema was coming back with a vengeance. By May, we had contacted my hospital to tell them about my decline, and they gave me two weeks to show an improvement by increasing my dose of Modulen again or I would have to go on the dreaded steroids, despite my parents’ disapproval. Sure enough, the improvements with the Modulen were not quick enough and I was put on a full dose (8 tablets a day) of Prednisolone.
Steroids
I knew that steroids were not a long-term solution, but I hoped that they would put things back on track in the short term. I have since been far less lucky with steroids, but at the time, that’s exactly what they did. I couldn’t believe how fast they kicked in! Within a few days I began to feel so much better. I gained my appetite back and my erythema lightened up enough for me to walk short distances with only some pain. I also didn’t really experience the dreaded “moon face” associated with steroids, I just looked healthier having put some weight back on. But within a couple of weeks I had a set-back, I developed (yes, another) rash- but this time on my neck. Thanks to the steroids, my immune system was weak, and the “rash” soon transpired to be shingles. As shingles are contagious, I was quarantined by the GP to the confines of my house for 1-2 weeks. Great, no school for me yet again. Things spiralled from there. The effects of the steroids began to wear off as the dose reduced (I had to drop it by one tablet per week) and my symptoms came back yet again. After a failed attempt at re-increasing the dose, it was time to go back to the hospital. I was gutted, I thought things were getting better. That’s when I learned how unpredictable living with Crohn’s really is. You can take one step forward, only to then take 3 steps back.
Nightmare holiday
On 2nd August 2013 I was admitted to hospital for another series of tests, which only confirmed what we already knew: my inflammation had got significantly worse. But this time, the worst culprit was my rectum, so they sent me away with something called Salofalk foam. At this point my mum decided that I needed a break and declared that the family would spend a week away in our UK holiday home. So, after recovering from the anaesthetic of my colonoscopy and being discharged from hospital, I somehow managed to sit in the car for 4 ½ hours to get there, new medicine in tow. I had no idea what this new medicine was, I guess I just thought it was some kind of new tablet or solution I had to drink. Not pleasant, but I’d been through worse. This would be a piece of cake. I couldn’t have been more wrong.
When we arrived and I was due my first dose, I found out that I had to squirt the foam directly into my rectum. Now, for a 14-year-old girl that was not only embarrassing, but very scary. I had no clue what I was doing and was terrified I’d mess it up. (DISCLOSURE: The next part is rather graphic, so skip ahead if you’re squeamish!) You essentially have to put a long nozzle onto a canister, shake it to charge it up, insert the nozzle into you-know-where whilst holding down a button and then slowly release the button and with it, the foam. Sound simple enough right? Wrong. So wrong. Because of all my inflammation, it was agony even inserting the nozzle and my anxiety frequently made me release the button too quickly and the foam just squirted everywhere. Even when I managed to get the foam in, it stung so much internally that I frequently had to use the toilet seconds after doing it, which completely defeated the point. It sounds ridiculous, but I almost felt like a failure, like my body just wouldn’t cooperate. I’d done so well for weeks on the liquid diet and now I couldn’t even administer this stupid foam properly. Not to mention the foamy mess that my mum had to clean up in our chalet bathroom…
That experience is not one I wish to repeat. Ever. My self-esteem was so low, and my parents were even conscious about putting the packaging for the foam in our outside bin in case any of our beach hut neighbours saw. I felt strangely ashamed. And that holiday only got worse. A couple of days in we got a call about the results of the blood tests I’d had done at the hospital that week and apparently I had some weird and potentially dangerous bacterial infection and needed urgent antibiotics. So instead of relaxing on the beach, it was off to the local hospital for a bunch of stressful phone calls to try and arrange how to get me the medicine I needed when I wasn’t registered there.
Azathioprine
I did eventually get the antibiotics and started them immediately, at which point it was time for us to come home from our holiday. So that was worthwhile… The hospital then called me in for another MRI to track my inflammation, the poor results of which lead me to be put back on a high dose of steroids, along with a heftier treatment than I was used to: azathioprine. For those of you who don’t know, azathioprine is a kind of immunosuppressant which aims to reduce the number of white blood cells in the body. In doing so, it interrupts the body’s immune system, thereby preventing it from attacking the digestive system and causing the inflammation associated with Crohn’s Disease. Azathioprine can take several months to work, so unfortunately it was a waiting game. But as I was constantly having blood tests for monitoring my CRP (inflammation marker) and various other things, it became apparent that the azathioprine was beginning to cause my liver function to decrease. The doctors were concerned and decided I should stop taking it to see if my liver function would go back to normal. Great, more experimenting. My liver function did improve, and by March 2014 I was back on azathioprine. But soon enough it was clear that something wasn’t right. My symptoms had not only gotten worse but had also changed. Now I couldn’t tolerate food and threw up simultaneously every time I went to the bathroom, which was a hell of a lot, and the stomach contractions were unbearable. The doctors concluded after several more tests that I was in fact intolerant to azathioprine and I stopped taking it again. They also told me that I may as well stop taking Pentasa (a slow release medicine I’d been taking from day 1) as they didn’t think it actually did anything!? At this point I was not only fed up, but also confused. I’d been on and off various medications for months and nothing seemed to be getting better. The doctors knew this as well as I did, that’s when it was first mentioned that I may have to go on a biological drug as I wasn’t responding well to other treatments.
Looking back
This first relapse was a major milestone in my Crohn’s journey. I’d never felt perfect since becoming ill in the first place, but at least with the liquid diet I got some of my old life back. Now it felt like I was back to square one and for the first time I really started to realise that this was forever, I would always have to deal with these ups and downs in my health. I also learned that not every drug is going to work for me. When I was younger I just assumed that a treatment was a treatment for a reason and I’d never even considered the possibility that a drug wouldn’t work, or that I wouldn’t be able to tolerate it. Now I know that Crohn’s is such a personal illness and there is no “one size fits all” solution. And most importantly, I know that, however frustrating it may be, this is the kind of illness that requires a significant amount of patience. You have to wait, experiment, and wait some more and you may still come out unsuccessful. But that’s life in general. You just have to keep plodding and find joy in the small things. Plus, the more experiences you have that make you uncomfortable at first, the more you grow as a person and the less things eventually faze you. That’s one thing I am grateful to Crohn’s for: resilience.
Me and My Crohn's 