As today is World IBD Awareness Day, I felt it only fitting that I posted a little something about my experience of living with Crohn’s Disease for the past 25 years.
So what exactly is Crohn’s Disease? When you mention Crohn’s Disease the first thing people think is “Oh, you have to go to the toilet a lot.” Which for me is wholly inaccurate but yes many people who have Crohn’s Disease do have to visit the bathroom frequently. Crohn’s Disease is an autoimmune disease, that effects around 8 million people around the globe. Autoimmune diseases are diseases that occur when the body's natural defence system can't tell the difference between your own cells and foreign cells, causing the body to mistakenly attack normal cells. There are more than 80 autoimmune diseases and each individual who suffers from them will have different symptoms, triggers and reactions than someone else who has the same disease which makes them quite difficult to diagnose and even more difficult to treat. So, specifically for Crohn’s Disease, it can affect any part of your digestive system from your mouth to your anus and is classed as an inflammatory bowel disease because different parts of the digestive tract become chronically inflamed when healthy cells are attacked. This in turn causes a myriad of symptoms from pain, diarrhoea, fatigue, blood in your stool, inflammation of the eyes, skin and joints, anaemia, weight loss and a whole bunch of other equally pleasant things. Most people with Crohn’s suffer from very mild to severe that can be both painful and debilitating, and sometimes may lead to life-threatening complications.
So that’s what Crohn’s Disease is in a nutshell. Obviously, like most disabilities it’s much more complex and the fact it’s an invisible disability makes it all the more difficult for people to understand because the majority of people who have Crohn’s Disease don’t look ‘sick’ and you would never know they are battling this disease everyday.
My relationship with Crohn’s started when I was 13 years old. I was very anaemic, severely underweight and used to get the worst abdominal pain I had ever experienced. I pretty much lived off painkillers which for a 13 year old isn’t great. My Mum took me to the doctor who referred me to a haematologist. The haematologist attempted to treat my anaemia with iron but it didn’t do anything at all. This continued for several years and there was no mention of Crohn’s Disease or any investigation into why I was anaemic, just “Here’s some iron. Take it and come and see me again in 2 weeks to check your Hb.”
The first time I ever heard of Crohn’s Disease I was 15 years old and sitting in registration one morning at school. I was eating my nutritious breakfast of a Wispa and Lucozade and reading an interview with the singer Anastasia in The Sun. In the interview she spoke about the scar on her stomach and how she got it and mentioned she had Crohn’s Disease, and then started listing symptoms. I knew instantly that was what I had. Bear in mind this was pre-internet so I couldn’t jump on google and type in my symptoms, but there was this woman literally saying all the things I had been experiencing for almost 3 years by that point. I remember telling my GP and the haematologist and they both told me I didn’t have Crohn’s Disease and that I was just ‘growing’. This was in 1999.
Around 2000 / 2001 I started putting on weight and everything seemed okay. I wasn’t really getting the abdominal pain anymore and started to think maybe the doctors were right, I was just growing. 2 days after finishing my A-Levels my appendix burst so I was in hospital for a while but there was no mention of inflammation of my intestines. I mean, possibly because they were too preoccupied cleaning out my abdominal cavity of appendix poison (I don’t know what that stuff is called… pus, I guess?) for 3 hours that maybe they didn’t notice, or maybe there genuinely wasn’t anything remarkable. Anyway, I continued to put on weight but by this time it was alarming weight gain. Long story short, my body had started to over-produce Cortisol and I had developed Cushing’s Disease. We now know, in retrospect, my body started producing the Cortisol to calm the Crohn’s which worked for a while until I developed a tumour on my pituitary gland which was caused by excess Cortisol production and ironically led to further excess Cortisol production. I had brain surgery in 2005 to remove the tumour. Surgery went well but I ended up with a pulmonary embolism and nearly died. It doesn’t rain, it pours.
So the Cushing’s got cured once the tumour and my pituitary gland were removed. Spoiler alert, I didn’t die from the PE. I’m not writing this from beyond the grave (yet). However, once the cortisol levelled out Crohn’s popped up in the chat again. At the time I was living and working in the US. At first it wasn’t really noticeable, just a little pain here and there, occasionally needing to use the bathroom after I would eat. That lasted a few months. Then it started becoming more frequent and familiar, like the pain I used to have in my teens pre-Cushing’s. I started getting other symptoms too like fatigue, inflammation of eyes and skin and one big symptom I’d never had before, blood in my stool.
By the time I was passing blood frequently I had been in the Caribbean for a few months and I called my Mum and explained. It was a couple weeks before my 25th birthday so she flew out and said I should come back to London and go to the doctor. So I did. My GP referred me to a gastroenterologist who did a colonoscopy that instantly diagnosed Crohn’s Disease in retrospect ie Everything from when I was 13 was now being verified as being Crohn’s Disease. Unfortunately, by this point I had developed strictures. Strictures are narrow sections of the bowel that develop from the damaging and healing of the tissues and are essentially scar tissue inside the colon. I had 4 strictures and tumour that had been causing me frequent visits to A&E because they would either obstruct (cause a blockage when they are inflamed) or would cause so much pain I would have to go to the hospital for pain relief. Then in 2010 I was told I needed a hemicolectomy (half of my large intestine removed) to remove the damaged bowel and hopefully induce remission and stop the frequent trips to A&E. Fortunately there was no bowel cancer found but unfortunately the active Crohn’s Disease didn’t go into remission, it came back straight away around the join of the small and large intestine. I was started on Humira, a biologic that suppresses the immune system. This worked great but Humira is THE most expensive drug in the world. I’m not just saying that for effect, google it, it’s literally the most expensive drug in the world and I was only funded for 1 year and after that year it was withdrawn. I did a few other immunosuppressive drug combos but nothing worked longterm. I started to end up back in A&E again with pain and obstructions so was recommended for a clinical trial of a drug called Vedolizumab which is from the same family of biologics as Humira, but a lot cheaper.
At the time of starting the trial I was already taking Mercaptopurine (a strong immunosuppressive chemotherapy) and then started taking Vedo injections every 2 weeks in addition to the Mercaptopurine. For 3 years it was incredible - I had no disease. I went into full remission and could even eat foods I hadn’t been able to eat in years. I was in a good place so the decision was made to withdraw the Mercaptopurine, after all it’s a strong chemotherapy immunosuppressant and shouldn’t be taken longer than needed, so December 2019 I stopped the Mercaptopurine. And we all know what happened in 2020…
During Covid I was a shielder at the request of the British Government. My Vedolizumab was couriered to my house and I didn’t have any in person assessments/bloods for several months as opposed to the usual 8 weeks. I started to notice something wasn’t right but chalked it up to working from home, eating different things, less exercise etc… There was so much going on it could have been anything. I was in remission right so it was just something else. My tests started coming back a bit worrying but aside from the odd pain here and there I had no symptoms. I was fine. Until I wasn’t.
September 2021 I was preparing to go back to work after summer break then the day before I was headed back to work I was rushed to hospital in agony and vomiting. This wasn’t my first rodeo, I’ve had Crohn’s for years but I had gone so long being okay that I’d almost forgotten what it was like to have this disease. I was told I had an obstruction in my small bowel (inflammation had closed my small intestine so my stomach was filling with food and fluids). They put and NG tube through my nose into my stomach and aspirated (ie got a giant 1 litre syringe and pulled out the contents of my stomach) they then put a bag on the end of the tube to collect anything else, a bit like having a stomach on the outside of your body but attached to your nose. Yes it’s weird, uncomfortable and very disgusting. I can’t overstate how uncomfortable and disgusting it is.
They gave me some stuff in the tube to my stomach to a. help clear the obstruction and b. Let them see the blockage clearly on MRI and CT scans of which I had many. 4 days later, all was good and I was allowed home with a sore nose and throat from the tube and told to follow a liquid diet for a few weeks. I did and everything seemed fine… until it wasn’t. Again.
3 weeks ago I arrived at work like any other day and by 09.00am I felt the first spasm in my abdomen. About an hour later I felt a second and I knew something was up. As the day went on the spasms got more frequent and more intensely painful. I made it to the end of the day but I knew the drill. Something in me thought it might be a blip and might just pass by itself, sometimes it does. Paracetamol, heat pad, peppermint tea and bed is often my go to cure for an impending flair up and more times than not it works. Not this time. I lay on my bed and couldn’t get relief at all - the first sign it’s serious. By this point paracetamol was just being lost in vomit, the shivers had started and it was only a matter of time before I went limp (this weird thing happens when the pain gets too much, it’s like my body goes into shock and I become floppy and semi-conscious) I knew I didn’t have long before that happened so it was time to get to A&E. At A&E it’s on my record to go straight to majors because I’m high risk but the receptionist working that night for whatever reason insisted I must wait my turn so I just flopped on a bench vomiting in A&E for a couple hours until I was called. As soon as I was called though then it was all systems go - morphine drip, fluids and rushed to CT scan, which then confirmed bowel obstruction in small intestine. My old friend the NG tube was back, stomach aspirated and I was pretty much out of it for 48hrs.
So as I write this I am in a very weird place… which I don’t particularly wish to talk about but will touch on very briefly, shortly.
As of today, now, this second, I feel fine. I don’t have any pain. 10 minutes? An hour? 12hrs from now? I could be back in A&E. That’s the nature of this disease. It’s unpredictable. No matter how hard I try or how careful I am with my diet, the inflammation could occur and that’s it, flair up, bowel obstruction or worse. I’ve had times where I’ve been overseas, having the best time and then an hour later I’m curled up on my bathroom floor in agony, vomiting and shivering. Alone. Sometimes for a day. Sometimes for two. Those times there’s not much I can do except hope and pray it resolves itself because I’m thousands of miles away from home, my healthcare might not be covered etc.. However, I don’t let it deter me from doing things, it’s just an additional thing I must consider as a possibility.
A lot of the time when Crohn’s is discussed all that’s ever spoken about is how it effects you physically but very rarely is it spoken about how it effects you mentally. I know I’ve never really discussed it and up until a few years ago I didn’t even really acknowledge how it effected me mentally, it was what it was and that was that. However, the past 3 weeks have been the hardest on my mental health. A real struggle. I came very close to my breaking point. Partly because of this set back in my health and the less than stellar outlook going forward, partly because of the steroid treatment I was put on which was both triggering to when I had Cushing’s but also carry their own side effects and partly because it’s just fucking hard to deal with. People see you and you look absolutely fine on the outside. They can’t see the pain you’re in, they can’t see the complete hassle it is to meal plan and prep EVERY MEAL to make sure you exclude things that might trigger a flair up or cause inflammation, they don’t see that you’re running on empty. They just see you upright with a forced smile on your face and assume you are fine. This lack of understanding leads to many strains on relationships because people will write you off as lazy or flakey or “Oh fuck her she doesn’t keep plans” or just stop including you in things altogether. They don’t understand the struggle it was for you to just get out of bed, keep your breakfast down and attempt to face the day as best you can while in pain or discomfort or exhausted. Me personally, I’m neither lazy or flakey. I work fucking hard, I give 100% to people who very rarely afford me the same effort and the only time I don’t is when I don’t have 100% in me to do so. If I break plans, it’s because I don’t have it in me to see them through for whatever reason (usually physical exhaustion, chronic pain or literally in the hospital).
The mental toll of living with IBD is a lot and is only impacted by the fact you ‘look okay’. For example, someone with a physical visible disability eg a wheelchair user doesn’t have to explain why they can/can’t do certain things etc.. it’s obvious and explicit. No one would question them if they said they can’t do a particular thing, they would accept their limitations probably without a discussion. However, IBD sufferers are constantly having to justify their actions. For example, using a disabled bathroom. The very essence of the illness is related to the digestive tract so it goes without saying many sufferers have to visit the bathroom frequently and/or with urgency. Many people with stomas prefer using the disabled bathrooms for space when changing their bags. A lot of IBD sufferers hold radar keys (keys that open disabled bathrooms) yet many get challenged for using disabled bathrooms because we don’t ‘look disabled’.
Days like today bringing awareness to IBD are so important for visibility and acceptance but more for educating people in understanding the nature of Inflammatory Bowel Diseases. It’s not just “Oh you need to poop a lot”. It’s a lot more complex and nuanced than that. If you know someone with IBD talk to them and get to understand what they are going through because they are very likely suffering in silence due to a lack of understanding of IBD within the non-IBD community.
