Crohn’s disease is a chronic illness, which means it will come and go throughout my life, although I can’t remember the last time I was in remission, or if I ever was. When the symptoms get really bad, this is called a flare. I have had lots of flares since I was diagnosed in 2000. Some pass within a couple of days, while others last months and I have to try different treatments to bring things back “under control” (inverted commas because I’ve never felt my disease was under control...instead it has controlled me, for most of my life).
I’ve tried all sorts of treatments, the most recent in 2017. I was on a medication that has never really done much for me after I reacted to Infliximab (the one treatment that actually WORKED) so I was looking for something else. I was having a flare in May, when my inflammatory markers were in the thousands and I was told I needed to choose between two treatment options: one very toxic and used to treat cancer and the other very new with little data on long term effects. The alternative was surgery, which would involve me having a stoma bag for a little while. I told them that surgery (and especially a stoma bag) would always be my last resort so I chose the new treatment, Vedolizumab. Like with Infliximab, I would go to hospital every 4-6 weeks for an infusion in the hope that I would finally find out what remission felt like.
Fast forward to the end of June and I went in for my first infusion. I was in a room with maybe 6 others, who were all having different infusions. I’d had lots of infusions before, so I knew how it all worked. Within 5 minutes of the infusion starting, I started to feel light headed and dizzy and my ears started ringing. My head felt really heavy, almost like I couldn’t hold it up and my vision went funny. I tried to put my arm up to tell the nurse but I think another patient called her for me. The next thing I remember is waking up in a hospital bed. They said I had a reaction to the infusion and they wouldn’t restart it even though I wanted them to (silly...but desperate). They told my consultant about my reaction and said I would need to speak to him before I could try again.
I don’t remember if I saw my consultant again before October 2018. I saw his registrar then which frustrated me because it was clear my disease wasn’t under control and hadn’t been for a while. I wanted to be seen by somebody who knew me and was familiar with my history. I’m not sure quite how or why but we agreed I would go back on my old treatment (which wasn’t controlling my disease) and she would see me in 12 months. I wish I’d done more at this appointment to push for a different treatment or an earlier follow up and perhaps things might have been different. This is one of my biggest regrets because I knew there were still other options open to me (that weren’t surgery or a stoma bag) but we didn’t pursue them and the reason why is still unclear to me.
So, onto summer 2019...and my biggest flare. I had just left a job I loved and I was on holiday with Adam in Rhodes when I came down with what we thought was food poisoning. Adam was ill after me so that convinced us we had caught something there. A part of me wondered if it was a bad flare triggered by the unease of leaving my job but we'll never know. After our holiday, I never really recovered. Over the summer months, my symptoms got worse and I became more poorly than I could ever remember. I had more pain, more urgency and I felt really run down. I told my consultant I didn’t think I could wait until October for my appointment so it was brought forward to August. When I went in, I saw the registrar again and she referred me for an urgent colonoscopy (a camera test with sedation) which I had on 21 October.
I remember the colonoscopy like it was yesterday because it was the point where everything got so much worse for me. When they started, I knew it was more painful than it usually was. After about 10 minutes they stopped because they said I had a stricture (a narrowing) in my sigmoid colon and they couldn’t get the scope through. They abandoned the test and gave me the report. When I saw the pictures of my bowel, I understood why I had been struggling all those months. I was amazed it was still working when it looked like a war zone. The ulcers had caused it to close up almost completely. I don’t remember when I was supposed to see my consultant again but what happened next meant it didn’t matter anyway.
After the colonoscopy, my pain and urgency got so much worse. One day in mid-November, I was in work bent over in pain, with a bin next to me in case I was sick. The pain would come and go in waves every few minutes. I hadn’t had a flare so bad before and I was scared of what would happen to me next. The following day, I went into work and I met Ellie, one of my besties, for lunch. I couldn’t really eat anything, I think I ate half a lemon muffin (if you know me...you know I love my food!!) and she said I looked grey and really unwell. She made me agree that I would go to A&E, although I resisted and said I had to go to a work dinner the following night...but then I would go. After everything that happened, I realise now how naive I was to prioritise my work over my health and I have promised myself that I will never do that again.
That night, I was in so much pain that I couldn’t sleep and I spent most of it on the toilet, curled up in pain. In the early hours, I surrendered and said to Adam I wanted to go into hospital. Everything I had resisted for didn’t seem important anymore. We packed a hospital bag and ordered an Uber (our car was in the garage...of all the weeks!). I couldn’t quite believe I was taking myself to hospital and in the back of my mind I was still doubting myself...was I overreacting?
When we got to the hospital, I was taken through A&E really quickly and to my relief they took me really seriously. I had a emergency CT scan and after that they told me that I had a perforated bowel, where the stricture was. They said I would need to be admitted so they could decide what to do next. I knew in the back of my mind that I would be admitted because I hadn’t felt so ill in all my life and I’d been admitted for less. Looking back, I can’t believe that I almost didn’t go in that day. Who knows what would have happened if I didn’t. I think I resisted partly because I got used to living with fatigue and pain and pushing through so that I didn’t miss out. So even when things got much worse, I had built up this resilience to push through and carry on. I think another part of it was that I knew I would be admitted if I went to hospital and I wasn’t ready for what was to come.
Love Me &
My Friend Wendy.
Comments