#WorldIBDDay: Alyssa’s story

My name is Alyssa and I was diagnosed with Crohn’s Disease a week after my 22nd birthday in 2016. My IBD journey actually started when I was 17, though. I was in year 12 in school and at the time, I thought the stress of exams and planning my future was responsible for the terrible stomach cramps I’d started to get. I thought once I’d finished all my exams and the stress was over, I would feel so much better. I got through it, started my gap year job and discovered that I was still experiencing the cramps. I was spending more and more time in the bathroom and had for no apparent reason become really deficient in iron and vitamin D, which meant I was really tired all the time. I had iron infusions to help but I couldn’t seem to keep it in my body.

When I got to uni, my stomach cramps got worse. I was spending more time sick than in class and I started to get really anxious every time I had to leave the safety of my apartment. By the last year of my degree, things had started to go really downhill. I went on a holiday to Europe in the middle of the year and found myself getting so unwell that I couldn’t bear the thought of eating. I spent three weeks surviving on lemonade alone because every time I tried to eat, I’d be sick immediately. I didn’t know it then, but I was in my first really bad Crohn’s flare. I lost crazy amounts of weight really rapidly and I could barely drag myself out of the hotel bed. I made it home, but my symptoms started to get worse and worse. My joints were aching so badly that I was wearing compression bandages around my knees, ankles and elbows at all times. I had developed huge red lumps on my legs (called Erythema Nodosum). The doctors at the campus medical centre had never seen those before. I had got down to around 55kg (a good 10-15 under where I should have been) and I wasn’t eating. The blood tests showed that my inflammatory markers were off the chart – but they couldn’t tell me where the problem was. I ended up having to be carried around my apartment and helped to shower because I couldn’t do it myself. I was so weak and underweight that I honestly thought I wouldn’t make it to Christmas. I was 21 and I was terrified.

Due to my arthritis-like symptoms, I was sent first to a rheumatologist. He was lovely but quite quickly told me that the joint pain I was experiencing wasn’t real arthritis. It was another inflammatory response to whatever was going so wrong in my body. I then went to a hematologist. After looking at my blood tests, he informed me that in his opinion, I either had IBD or lymphoma, which was pretty scary. He decided it was more likely to be IBD, so I ended up at the gastroenterologist. I did a PET scan to find the source of my inflammation and my guts lit up like a Christmas tree. They did a scope to confirm what they thought and I woke up to pamphlets about IBD on my table. I was a classic case of Crohn’s Disease and they couldn’t understand how it had taken me so long to find the gastro department and get a diagnosis.

I was started on corticosteroids, which at first I thought were amazing because all my joint pain had suddenly disappeared! I was gaining weight because I was eating enough for 10 people. I was going for runs because it felt so amazing to have the use of my legs back and I had so much energy. I felt almost alive again.

A month after my diagnosis, I was back in hospital. This time, with abscesses. I had developed perianal disease and had a really angry fistula to deal with. I had seton drains put in to keep the wounds open. If they closed, they would get infected again and I’d be back on the surgeon’s table before I knew it.  I had four surgeries in 2016 and another one last year for the same issue. It took a long time for me to recover both physically and mentally from all of that, especially because it felt like it had happened so quickly.

Over the last few years, I have been on four different medications, each with varying success. I’m now on Remicade infusions, which I have at the hospital every 6 weeks. I’ve been very fortunate in that my Crohn’s has now settled and I’m in “remission”. I’m doing my best to keep active and trying to do all the things I wanted to do before I got sick. I think that’s one of the hardest things about this disease – adapting to your new image of yourself and what you’re now capable of. I have got a job that I really enjoy, I volunteer on the weekends to spread joy and I live with my amazingly supportive boyfriend. It might take me a bit longer than I first thought, but I will follow my dreams.

Alyssa Shapland lives in Perth, Western Australia. She graduated with a Bachelor of Arts from the University of Western Australia, majoring in Italian and Archaeology. She is a Crohn’s warrior, writer, volunteering wizard, and jigsaw puzzle enthusiast.