IBD + ME
Updated: Nov 6, 2020
I’ve been trying to write this post for a few months now, but every time I’ve tried to start I’ve felt this overwhelming sense of not knowing where to begin or how to put in words what I've been going through. I’ve been questioning whether or not I want to share my story and what's been happening in my life lately as it's still early days, so it has honestly been surreal and so much to process.
For the last few months, I’ve been facing what has been quite a personal challenge after being diagnosed in June this year with a chronic, autoimmune disease at the age of 26. It’s strange because the diagnosis has changed everything, yet also has given me so many answers at the same time.
For much of my adult life I’ve struggled with what I had just called a “funny tummy” – I would often experience bloating, upset stomach, pain and abnormal bowel movements which I tended to attribute to certain foods I’d eaten, especially dairy. I saw numerous doctors over the years and had been told it was Irritable Bowel Syndrome (IBS), and that I needed to manage it by working out what foods I was likely intolerant too. I had lived with these symptoms and pain for so long I just thought it was normal, but it didn't prepare me for what was coming.
Fast forward to January this year - to keep the story short, I became incredibly unwell after an overseas trip and ended up in hospital with influenza A and C. difficile, which is an infection in the colon usually caused by overuse of antibiotics (I had taken antibiotics for a chest infection that turned out to be the flu right after I had finished a course for an infected wisdom tooth I had just had removed). I was horrifically ill and in an enormous amount of pain. I couldn't stop vomiting or going to the toilet, there was blood (which is a huge red flag), and I couldn’t keep any food or water in. I honestly felt like my body was giving up on me, which terrified the hell out of me. I can't even describe how truly awful and scary that time was and the few months that followed. I could barely walk, barely eat, and spent weeks bedridden. It made no sense to me that I went from living an active, fast-paced and healthy lifestyle to surviving on red cordial just to get fluids in and not leaving my bed for days.
After being hospitalized I was put on the waiting list for a colonoscopy, and pretty much just told to wait until then. I was slowly recovering and was almost back to my “normal”, but I was still experiencing the abnormal symptoms I had in the past - worse than before. I was still incredibly lethargic, and my stomach and bowel were basically still wreaking havoc on my life. I had hoped I was past whatever had happened earlier in the year, and put it down to my IBS and tried to get on with life.
The real turning point came a few months later when I fell extremely ill again without warning in June this year. I was hospitalized again with excruciating abdominal pain, nausea, vomiting and other symptoms far too graphic for this blog. It felt like deja vu - I couldn't eat, drink or hardly get out of bed, I was lethargic and in constant pain. I was getting through each day drugged up on painkillers and anti-nausea drugs, rolling around in bed in indescribable agony. I cried my eyes out every single day. I couldn't believe that this was happening again - I kept saying to those around me that I felt like I was in hell. On top of the physical pain and symptoms, I felt like an empty, hollow shell of myself that was barely functioning.
The doctors had ran some tests while I was still in hospital, which came back with red flag markers for inflammation. I was finally escalated to an urgent colonoscopy. I had my first colonoscopy in June this year (which was an awful experience in itself!), and after an anxious wait for my biopsies to come back, I received a diagnosis.
I'll never forget that feeling when I heard those words. I finally knew that the episodes I’d had this year that landed me in hospital were in fact UC flares. Even though I had kind of prepared myself for this news, I still clung to some hope that it was something that was curable, so I felt like I’d just had the wind knocked out of me. I was so relieved to finally have some answers after suffering for so long, but yet I was devastated. It sounds dramatic, but I was reeling from the shock of being told that I had a chronic, autoimmune illness that I would have and would affect me for the rest of my life.
Before my diagnosis I'd hardly heard of UC, and I know that a lot of people probably don't know much about it either. UC is one of the two types of inflammatory bowel disease (IBD), which is a condition which causes the bowel (colon) to become inflamed, ulcerated, red and swollen. The other type of IBD is known as Crohn’s disease. Both diseases are chronic (ongoing) conditions which can “flare” up on and off throughout life. In simple terms, it will never "go away", and there is no cure.
A lot of people think IBD and IBS are the same, but it's important to know they're two totally different conditions. IBD is an autoimmune disorder (when a person’s immune system mistakenly attacks their own body tissues) and causes actual inflammation, ulcers or other damage to the bowel. For people with IBS, the digestive system looks normal (there's no damage) but doesn’t work as it should. It’s possible to have both IBD and IBS (which I have recently found out that I do – lucky me) but it is important to know that these are two separate conditions.
A few people have asked me if I’m planning to tell anyone about my diagnosis, as I think most people typically would shy away from sharing their personal medical issues, let alone something as un-glamorous as bowel disease. Obviously I’m here now, writing this post about it that will be read likely by people I don’t know, but I don’t see my diagnosis as something to be embarrassed about or ashamed of. I know I personally didn’t know much about IBD before my own health journey, so I want to talk about this condition to remove the stigma around it. After all, it’s part of my life now and I don’t really see that as something that I need to hide.
I won’t lie – I’m still coming to terms with it all. It feels strange to even be sitting down writing this post, like I’m writing this about someone else's life and not mine. It's the first time I've actually stopped and thought about everything I've gone through over the past year, especially reflecting on how incredibly sick I actually was. I've found it somewhat weirdly therapeutic, like I've had a bit of a weight lifted off me by getting it all out there. It’s still something that is going to take me a while to make peace with, and accept that this is part of my reality now. I was listening to a great podcast the other day and they used a quote which really stuck with me – “this is my life and I have to accept that”.
After my diagnosis my gastroenterologist put me on anti-inflammatory medication that I take every day, and likely will have to for the rest of my life. I just recently had my second colonoscopy last month to check how I was responding to my medication, and thankfully it was good news as the ulcers had healed a lot. As with any chronic disease, I have good days and bad days. Some days I feel like complete crap, like I'm barely keeping my head above water, and am doubled over in pain or curled up in bed too tired to function. Other days I feel like I'm smashing it, and I'm able to do the things I love like exercising.
I'm planning to write another post down the track once I've had some more time to process what life with IBD is going to mean for me going forward especially how much it has changed me and my values already, as I know my journey has only just begun. And living with a chronic illness means it's going to be a lifelong journey.
If there's anyone who relates to my story, is an IBD/UC sufferer or would just like to connect, I would really love if you reach out to me through the contact form on my blog or on my Instagram (@thehealthy_lawyer). I started this account with the intention of sharing my health and fitness journey and my passion for living a healthy life, so this is another part of the chapter that I would love to keep sharing with you all.
Thank you for taking the time to read my story, and I hope to hear from some of you soon!