I’ve had bowel problems since I can remember, but I always thought I just had a sensitive tummy. When I was 23 I started feeling fatigued and had regular bouts of diarrhoea, and a bit of blood in the toilet bowl. But it wasn’t until I started getting heart palpitations that I became concerned. I started iron supplements — however, my iron levels would drop back down as soon as I went off these I was referred to a gastroenterologist who performed a colonoscopy and found I had Crohn’s disease.
Once I had been diagnosed, I started taking steroids only made my condition worse. I became constipated, bloated and gained weight. Because I failed conventional treatments, I started a drug called Remicade, which is delivered by regular IV infusions at the hospital. When combined with the immunosuppressants, the Remicade put me into remission after only a few weeks. I was so happy and relieved to be ‘going’ just twice a day with toothpaste consistency — a desired texture for bowel movements. Since then, my Crohn’s has been controlled excellently with the drugs, but I’ve also been diagnosed with IBS (irritable Bowel Syndrome) — really common among IBD patients!
I’ve been on such a journey with my diet since I was diagnosed. Because my symptoms swung between diarrhoea and constipation, I worked with a dietitian to learn what to eat according to my symptoms at the time. once my Crohn’s was under control, the focus was to have a healthy diet full of foods to boost my immune system, due to it being immunosuppressed. Now that I have also been diagnosed with IBS, I am following a restricted low-FODMAPS diet to keep the symptoms at bay.
I have to make everything from scratch so that I know exactly what is in my food. Breakfast is usually eggs on low-FODMAPS bread. lunch might be wheat-free pasta with chicken and vegetables. For dinner, I often have savoury mince made with vegetables, soy sauce and turmeric. I have a sweet tooth but I have to keep my treats limited. Sesame snaps are definitely the best low-FODMAPS treat.
Eating out can be difficult. For example, onion and garlic are high in FODMAPS and they turn up in everything. If I eat out, I stick to bacon and eggs (no bread) or sashimi and edamame because I know they haven’t been cooked in any sauces. in every person, it felt amazing to talk to people who felt the same frustrations as me. We are also great at lightening the mood with a poo joke or two!
The hardest part about having Crohn’s is the invisibility of the disease. I may look healthy, but on the inside I’m far from fine. People don’t realise how debilitating it can be to be stuck on the toilet and not able to leave the house when you are having a flare-up. It’s also really difficult to tell people what’s wrong. Bowel movements are just not openly discussed.
I’m really passionate about making poo chat normal. Perhaps if I’d spoken about my condition sooner, would have been diagnosed earlier. I’ve had to keep poo diaries and describe my bowel movements in great detail to doctors. However, people just don’t discuss these things and don’t know what is normal or not.
My disease doesn’t define me, but it’s definitely made me who I am. My advice for anyone with the condition would be to talk to other people with IBD. When I was diagnosed, spoke to a psychologist, but I just couldn’t connect with them. I came across a support group instead, and after my first session I cried with relief. While IBD presents itself differently in every person, it felt amazing to talk to people who felt the same frustrations as me. We are also great at lightening the mood with a poo joke or two!