This week is Crohn’s & Colitis Awareness Week so I’m going to be doing something a little different on my blog today. I don’t talk about personal things much on here, but I’m hoping by sharing my experiences of living with Crohn’s Disease it will help raise awareness.
There are a range of symptoms and not everyone’s experience of Crohn’s Disease is the same. This post will be explaining a bit about Crohn’s Disease and what my personal experience of the condition has been.
Most people I meet have never heard of Crohn’s Disease. According to Crohn’s & Colitis UK, it’s estimated that one in every 650 people in the UK are affected by Crohn’s Disease. But sadly it’s a misunderstood and often stigmatised condition.
Crohn’s Disease and Ulcerative Colitis are the two main forms of Inflammatory Bowel Disease (IBD). They are chronic conditions that can be managed through various treatment options, including medication and surgery.
Crohn’s Disease causes inflammation of the digestive system or gut. Symptoms vary from person to person, but include diarrhoea, abdominal pain, nausea, vomiting, fatigue, mouth ulcers, weight loss, anaemia, joint pain, as well as wider health complications. I’ve experienced all of these symptoms at various points in the last 15 years. You can find more detailed information about Crohn’s Disease on the Crohn’s & Colitis UK website.
Management of diet is also important for coping with Crohn’s Disease day-to-day for many people, although the extent food affects people seems to vary, and everyone has different foods they can and cannot tolerate. I can’t eat any whole grains or oats at all. While there are some foods I can eat in moderation with careful planning, for example cheese and chocolate.
I was diagnosed with Crohn’s Disease at the age of 9 and to be honest, I don’t really remember a time when I wasn’t ill. People are diagnosed at all stages of life, some in childhood, some in their teens, some in early adulthood, some later in life.
The condition is life-long, although there can be periods of relative wellness interspersed with flare ups. For me it’s been an endless cycle. I’ll be very unwell, then have a few months or years of being fairly well, and then have another flare up, over and over again in a cycle. Stress can be a trigger for flares, which has happened to me a couple of times. It’s important to remember that Crohn’s Disease doesn’t go away during those ‘good’ periods. I still suffer from bad fatigue, still have to be careful to avoid trigger foods, and sometimes still get symptoms.
After my diagnoses, I was treated with medication for a few years, including steroids for a short time, which they usually avoid giving to children as it can stop you from growing. I stopped growing for around a year at the beginning of high school due to the medication. At hospital appointments they would take my height and weight and I would be so excited if I’d grown, even if it was only by a few millimetres.
It was decided that medication wasn’t enough and at the age of 13 I had a major operation to remove 20cm of inflamed bowel, which is called a resection. The days I spent in hospital were quite stressful and distressing.
After a couple of years of being not too bad, I had a major flare up when I started my A-levels. I became very unwell and struggled to cope with school work. I was going to the toilet with diarrhoea around 3-6 times a night, meaning I was hardly sleeping and very quickly became underweight. Following another batch of steroids however, I was back on the mend. I made it through my A-levels and was accepted into my first choice of university. Being ill made me even more determined and I didn’t want to get behind. While this condition has brought with it so much pain and horrible experiences, it has made me the determined, driven person I am.
During my first year of university, I was the most well I had been since my diagnosis. Unfortunately, my final year brought extra stress, and I began to have another flare up. My consultant transferred me to a stronger medication. Adalimumab is a biologic drug which I have to self-inject at home once every two weeks. I saw almost immediate positive effects. I have been taking it for three and a half years now and still doing okay. I was only supposed to be taking it for a year to settle things, but my consultant decided I was at too high risk of needing another operation, and that I should stay on it indefinitely.
Unfortunately, biologics can start to lose their effect, and at some point in the future I may need to try different medications. It’s also highly likely I’ll have to have more operations at some point.
Many medications to treat these conditions are immunosuppressants, meaning the immune system is suppressed and cannot fight off illness and infections. If I get ill with an infection I get ill very quickly and take longer than other people to recover. Because of this I also have to have blood tests every 3 months. Blood tests don’t faze me anymore, I’m so used to them!
Being immunosuppressed has brought extra challenges this year, as it means I’m at risk of becoming seriously ill if I catch coronavirus. I’ve spent most of this year stuck at home, which has been rough.
Crohn’s Disease affects me every day. Even in ‘well’ periods. While most of my symptoms are under control, the one thing I can never shake is fatigue. I feel tired almost every day. Some days I struggle to get through a whole day at work, never mind a whole week. I also have to think about what I’m eating every day and plan meals ahead. If I’m going out for lunch or dinner (in a non-pandemic year!), I know I have to be careful what I eat for the week leading up to it to give me the best chance of ‘surviving’ that meal.
The emotional and psychological effect of this condition is also underestimated. It’s tiring having to plan out your days. It’s tiring every time somebody suggests going out, having to mentally go through my head what else is happening that week, to work out if I’ll have the energy. People think I’m hesitating, that I don’t want to say yes, but that’s not the case at all. I’m just working out if I can physically cope.
As an invisible illness, people look at you and have no idea you’re living with a debilitating chronic illness. Just because somebody looks okay, doesn’t mean they are.
I know this has been a super long post but I hope you have learnt a bit about Crohn’s Disease. I’m happy to talk about the condition and my experiences, so if you have any questions do feel free to ask in the comments. I may write another post in future about the difficulties of having Crohn’s Disease, such as stigma and mental health.