Lots of people have been getting in touch recently asking for Crohn’s or IBD advice after being first diagnosed and I suddenly thought it would benefit others to write down my entire Crohn’s story – warts and all, from start to finish (well, to present!), for World IBD Day today. I was diagnosed at the age of four, and now at the age of 25, I’ve experienced A WHOLE BUNCH OF STUFF, including lots of abdominal surgery (yes, I’ve had a ileostomy) and medication. I sincerely hope that documenting some of my experiences may help others suffering from IBD, those who have just been diagnosed or just want to understand more about the illness. It’s a confusing and ever changing illness and I must stress that every single person with IBD is individual. What works for one person won’t work for another – there is no IBD ‘path’ – you just have to carve your own story! (So basically, don’t freak out if you’re newly diagnosed and reading this!)
So let’s start with diagnosis, and to be honest, I can keep this pretty brief, seeing as I was four years old and I really don’t remember much! I was on holiday with my family in Wales, when my parents noticed I was getting extremely pale, not eating, losing weight and going to the bathroom A LOT. On one horrible morning when my mum asked me how I was feeling, I told her I was losing blood. I went straight to a hospital in Wales, where I was admitted and quickly transferred over to an expert gastro unit in Oxford, where I was diagnosed with Crohn’s Disease. And that was the start of my IBD journey! I should add here that Crohn’s Disease is an autoimmune disease – it is your immune system malfunctioning.
In simple terms, the body eats away at the digestive system, causing inflammation, ulcers and bleeding anywhere along the digestive tract. I was at my sickest as a child; I remember countless birthdays and Easters spent in hospital. My first treatment was steroids, which sent me completely bonkers and made me put on weight faster than an inflating balloon. My disease was ravaging my large intestine, and although the steroids worked for a short time, as soon as my dose was reduced, I would start to flare again – big time. I went through cycles of mesalazine, azathioprine and infliximab, but nothing would calm my angry insides.
When I was coming up to about ten years old, I went on my first liquid diet. By this point, the conversations about having to remove my large intestine had been floating around for some months now. It was pretty clear that the disease was extremely resistant– it wasn’t responding to any medication. The liquid diet consisted of drinking cartons of Elemental 028, a nutritional drink designed to be absorbed instantly into the body, with your gut having to do absolutely zero work. As I was about to enter puberty,
I was required to consume even more of the liquid to ensure my growth wasn’t stunted. It was physically impossible to drink the required amount, and so I would sleep with a tube that went up my nose and into my stomach and the rest of the liquid would be pumped into my body. In the very early days of the liquid diet, it was so traumatising having the tube passed up my nose that I didn’t want to take it out – so I went to school with it. The psychological battle was immense, but the liquid diet was my most effective treatment yet.
Alas, a few weeks after I started eating again, the Crohn’s returned with vengeance and at the age of twelve, I had an ileostomy formed. By this point I was practically begging them to take my large intestine out – I was tired of being constantly sick and living this half life in and out of hospital. Still being so young, they were reluctant to actually remove it all, and hoped that bypassing it via the ileostomy would help it heal. It did not. Nine months later I was back under anaesthetic and had my entire large intestine removed – with the exception of a tiny bit at the rectum. This tiny bit of intestine turned out to be my saving grace. Due to the mechanics of the colon, because I still had that little bit left, there was a chance they could reconnect my small intestine with the end of my large intestine and a chance I could be bag free in the future. To be honest, I think this is what got me through. Although I was desperate to feel better, nothing could prepare me for the emotional and psychological difficulties of living with a bag whilst I was going through puberty. A teenager is self-conscious enough as it is right – without having to worry about part of your intestine sticking out of your stomach! The three years with an ileostomy are a blur now, but it dramatically changed my quality of life. I finally had my life back. I was able to function – I was able to go to school everyday. I was able to hang out with my friends. I didn’t have to take drugs, I could eat what I wanted and I wasn’t at the mercy of my disease anymore.
When I reached the age of sixteen, the ileostomy had done its job and I was rewarded with a bag reversal. Another major operation, reopening my entire 30cm scar and another scar left where the ileostomy once was, but I was completely liberated. FREE FROM A BAG! Lollzzzz but totally not free of Crohn’s. I was actually pretty healthy doing my ALevels and I secured my place at Loughborough University to do a degree in Drama with seeming ease (health wise at least!) I had the most amazing time at university, but during this time, the Crohn’s began to spread to the lower part of my rectum and small intestine, and so I was put on Humira – a weekly injection administered myself. This managed to get the Crohn’s under control, but by my second year I was struggling with repetitive obstructive symptoms. I was in and out of hospital, in and out of A & E, and it came to pass that they had to operate.
Again. They found and closed an internal hernia, as well as adhesions, which were causing the obstructions. A year and a half later, just as I was completing my finals, the obstructive symptoms started again and after a particular memorable experience where I lay in a hospital bed in Leicester, surrounded by my friends and boyfriend who had fled a night out to my aid, I was under the knife again. Looking back, it was perhaps the immense amount of partying (I’m only human!) that took place over these three years that led me to need these two ops. The toll to my body was great and as I was recovering from my fifth operation, I began to ask myself, would these operations EVER stop?
After recovering from this fifth op, I plodded on quite well for a while. I got myself a job at the BBC as a Researcher and plunged myself into the world of commuting and full time work. I’d be lying if I said it was easy, my body took a while to adjust to the exhaustion. After my 21st birthday, a hernia popped up on my scar. LO AND BEHOLD – ANOTHER OPERATION. By this time I was officially at breaking point with being opened up so many times. I remember vividly bursting into hysterical tears in front of the surgeon and asking him, ‘WHEN WILL THIS END?’ I like to think I am an extremely strong individual, but I just couldn’t take any more operations. The isolation of the 8 week recovery alone was enough to send me completely insane, let alone the physical shock of going through all that pain over and over again.
I guess the positive of undergoing such repetitive surgery was becoming proud of my scar. It’s 30cm long, stretching from just below my chest to below my pelvis and it’s extremely visible. I wear it loud and proud now and I take the stares on the beach to mean, ‘wow – that girl must be made of steel!!’
I got to spring 2016, when I started to relapse again and I was given the choice, which lead me to start writing this blog in the first place. Sat in front of my gastro specialist, he told me I needed a quick treatment that was guaranteed to work – steroids. I couldn’t do it to my body- I couldn’t do it to my mental health! So I took on the one month liquid diet, which is where this blog was born. It was honestly the best thing I ever did and despite the mental battle, I came out feeling amazing. My skin was glowing and I appreciated the impact of what I put in my body more than ever. I reintroduced food gradually and found I was intolerant to whole food groups by keeping a food diary for weeks, which has further kept my tum happy. You can read my liquid diet journey here. In October, I learnt to meditate – a skill, which my paediatrician had tried to introduce to me during puberty. You can read more about my journey to meditation here.
Since then I have taken a short nutrition course, started yoga classes and started experimenting with what I eat and how it feels in my tum. I feel so very grateful for the journey I have come on to where I am today. I whole-heartedly believe everything happens for a reason and my IBD journey was meant to lead me to where I am today. To stand tall, tell my story and be confident in who I am. Because there are thousands of stories like mine that aren’t being shared, or are being misunderstood. IBD ain’t glamorous. Heck, I’d enjoy a day where I didn’t think about my gut – but that is the reality for so many of us living with Crohn’s Disease or Ulcerative Colitis. This is what we live with and we plod on. We make mothers, fathers, partners, friends and colleagues and STILL battle the debilitating symptoms of IBD – with a smile. I dare anyone who is embarrassed or struggling to deal with their IBD to speak out, confide in a friends/family and realise YOU ARE STILL B****Y BRILLIANT. IBD will not rule your life.
If you’ve got to the end of this epically long post, then thank you so much for reading and I hope you have taken something from my story. I would welcome comments/feedback (comment below!) and any of your stories. I would love to hear them all.
Happy World IBD Day!
*I know I haven’t just written a book, so to do a thank you sounds weird – but I can’t write this and not mention the amazing care I have received over my entire Crohn’s journey from the gastro team at John Radcliffe Hospital. They have always answered all my questions, listened to me when I have said no, given me VIP treatment and taken the best possible care of me. Brilliant, brilliant team.*