On being asked to write this special post for World IBD Day, I got to thinking about what my disease means to me. I thought about how others see me now following my diagnosis and how my own views have changed from first hearing the word ‘Crohn’s’ to having 4 years of my life practically put on hold, and part of my intestines removed due to it. I write about my illness a LOT but it’s still sometimes a little surreal that all this is actually happening to me, and to my body.
Firstly, for the uninitiated, let me wax lyrical on what IBD actually is. IBD = Inflammatory Bowel Disease which consists mainly of two of illnesses; Crohn’s Disease and Ulcerative Colitis. Ulcerative colitis only affects the colon (large intestine), while Crohn’s disease can affect the entire digestive system, from purdy mouth to the not so purdy anus.
These are life-altering illnesses which cause often horrific symptoms and generally go completely unseen by the general public. They are commonly and often referred to as ‘invisible’ illnesses due to the majority of issues taking place under the cover of the patients’ skin.
Some of the more eye-watering symptoms of IBD include:
Ulcerative Colitis: recurring diarrhoea, abdominal pain, the need to empty your bowels frequently, fatigue (extreme tiredness), loss of appetite, and weight loss. There can also be several other troublesome symptoms not related to inflammation within the bowels, such as painful and swollen joints (arthritis), mouth ulcers, areas of painful and swollen skin or irritated eyes.
Crohn’s Disease: unintended weight loss, recurring and persistent diarrhoea, abdominal pain and cramping (usually worse after eating), fatigue, blood and mucus in stools, joint pain and swelling, vomiting, high temperatures, irritation of the eyes, mouth ulcers, hair loss, and bloating.
During flare-ups these symptoms can be exacerbated and additional symptoms such as shortness of breath and increasingly high fevers may rear their head. It’s almost a blessing that the symptoms of IBD go mainly unseen. If those on the outside could see what goes on the inside we may find members of the public painting red crosses on our doors and wielding garlic on our approach.
When I was first diagnosed with the type of IBD I have (Crohn’s Disease) I was utterly and completely petrified. I was overwhelmed and confused and thought my life was ending. Literally. On the plus side, I was relieved to have it confirmed that it wasn’t all in my head, the symptoms and AGONY I was feeling were real and for a legitimate reason.
I was told “you aren’t going to be cured, but you aren’t going to die” and I clung onto the last 5 words in that sentence like a villain in a Bond film hanging by his fingernails off the edge of a cliff. Only difference being, I’d survive the next 90 minutes, and beyond.
I don’t ever want anyone to feel the utter despair I felt at that time, but I know I can’t stop that happening. I want to wrap all of you up in a massive blanket and let you pet my kitten (not a euphemism) until you feel better. But unfortunately I have nowhere near enough air miles, or time off to make that dream a reality. Instead, I’ve taken the liberty of compiling a list.
Here are a few things I wish I’d be able to tell myself when I was diagnosed with IBD.
- CALM DOWN. This is by no means the end of your life. You are a young(ish) woman with absolutely everything to live for. Dry your tears and try to focus on what’s ahead of you – you ARE strong enough to deal with it, all of it, however weak you may feel.
- Cherish the people who love you. Don’t snap and argue with those who are trying their utmost (through their own tears) to help and support you. They love you unconditionally and absolutely and that will never change. Don’t push that love and support away; you will find it as invaluable as a decent bra.
- Your body is changing and will continue to do so. Don’t feel this is entirely negative. You will be a walking, talking map of all the mountains you’ve climbed and rocky roads you’ve walked to get to where you are today.
- Listen to your doctors. They are not against you. Ask a million and one questions and burn their ears off if you need to, don’t let them leave you confused and afraid. Uncertainty is scary. The cold, hard facts can be too, but forearmed is definitely forewarned.
- Never underestimate the healing properties of Wet Wipes.
- You may discover people around you find your disease hard to cope with. (I KNOW). Those people will gradually leave your side and that’s Ok. It really is. Or at least it will be. The people who stick by you in good and bad will shine through beautifully like quilted loo roll on a supermarket shelf.
- Do not ever doubt that you will face whatever your disease throws at you. You will soon show the world you have strength and resilience you never thought possible.
- Be proud of yourself. Never, ever feel ashamed of the time you need to spend wallowing.
- You are not now an ‘IBD patient’ – you are the same human being you were before and will continue to grow as a person despite the challenges you are about to face. Do not allow, or tolerate, anyone trying to pigeonhole you as the ‘sick one’. (Especially yourself).
- Care for yourself. You deserve it. You are worthy of all the happiness life has to offer and you will learn to live alongside your illness. You can have as full a life as anyone else on this earth. Badly behaved bowels can attack your immune system, but they can’t attack your spirit.
- Especially if that spirit is Vodka.
Education, patience and perseverance are certainly key where IBD is concerned. Whether you are the patient or care about someone who is. When pain strikes with IBD it can be hard to focus on much else. These conditions can be crippling and can affect everyone and everything in your life. It’s vital you grasp every bit of the good stuff life can offer when you can. The equivalent is being a fulltime “sufferer” – which is about as fun as an enema.
Some people don’t want to ‘celebrate’ a day dedicated to disease. I say why not? What could possibly be negative in raising awareness for those you love with dodgy tums whilst celebrating the incredible strength and endurance they continue to show? I feel inspired everyday by those in the IBD community, my friends who are struggling with sickness every day, and complete strangers with chronic and incurable illnesses. I feel proud to be amongst such incredible people, even if only by association.
Having IBD forces me to strive to become the best version of myself despite an often horrendous illness. I try my absolute best to appreciate everything I have and everything my illness has taught me. And so should you.
Written by Kathleen Nicholls from Crohnological Order