World IBD Day is this Thursday 19th May. Over 5 million people worldwide including 75,000 Australians (1 in 250) live with Crohn’s Disease and Ulcerative colitis, forms of inflammatory bowel disease (IBD). I am one of those people. You might be one of those people. You might care for one of those people. You may not know it, but you more than likely know one of those people. Or maybe like me before I was diagnosed, you know nothing about IBD at all.
Each of us has a different story. IBD is such an individual disease. It is different when it comes to symptoms, treatment, medication, diet, severity and location of inflammation, surgeries and how it affects us. What works for one person does not necessarily work for the next. There is no one answer; no one size fits all approach; certainly no miracle cure (yet!).
IBD means a lot of different things to different people.
For World IBD Day I’d like to shout loudly about what IBD means to me! In many ways IBD brings about painful emotions and negative connotations. How could it not? Equally important though is the significance it has had on my life, as well as the positive impact to my outlook and even life choices (yes, I did just use the word positive!).
I’ve focused on 5 key areas which I hope better explain the meaning IBD has for me from both sides (the good and the bad).
Obviously in a literal sense, IBD means that I am sick. I have a disease. I immediately think of my bowels and how badly they have been inflamed, red, raw and bloody. The awful symptoms IBD assaults on your body. Not just the physical sickness, but mental and emotional health as well. I was never a sickly person. I had never even been in hospital before I got Crohn’s. Being sick is not fun. I have been fortunate to have amazing medical care, incredible doctors and nurses who have helped me on my way. Not to mention my fabulous surgeon who performed a proctocolectomy which has enabled me to reach remission from active disease, and afforded me 2 ½ years of good health. I won’t ever take my health for granted again!
The thought of IBD sometimes makes me angry and sad, and want to scream and shout and cry. It overwhelms me with pain and other horrible emotions. Not just physical pain but sorrow and grief over what you might have lost. The anguish and anxiety that come with many of the symptoms. Frustration over not getting better. Lonely nights in hospital. Feeling alone, like nobody understands. The heartache for what you’re putting your family and loved ones through. The aching want to live a normal life which can sometimes be impossible during a bad flare. I have felt all these things, but with help and with time I got through and came to terms with them. Most importantly, no matter how painful it might seem, please know that you are not alone and things do get better.
Hope is a big one. There is always hope. There has to be. Hope that the next medication will work. Hope that you will reach remission. Hope that things will get better. Hope that you will still be able to do X, Y or Z. It can be hard at times to maintain, but without hope what do we have? I wasn’t ready to give up. I didn’t and things are better now. For a long time, I feared they wouldn’t ever be, but I never completely lost hope. Still today, hope remains. Hope that my disease stays in remission. Hope that I don’t have any complications with my ostomy. Most of all though, hope that there will one day be a cure. Hope and a positive attitude has made a big difference to how I manage my IBD.
Having a chronic illness of any kind is likely to bring about changes in your life. Big and little. Changes to your day to day living, your diet, your energy, perhaps your career, your relationships, your focus, your priorities. I personally have never liked change. Change is hard. But I’ve learnt that change can be a good thing too!
More than anything, getting Crohn’s was a big wake up call for me. I have learnt a lot about myself. It’s made me reflect on my life and what is really important to me. I have reassessed my priorities, especially my career. I communicate better, have stronger relationships, I am stronger, more open and determined, I have a will and desire to make my life more meaningful, I am more grateful for the little things, I am less judgmental, I try to live more in the moment, with my eyes wide open and go with the flow.
You have to find the good in the bad and look for the happy in the sad. I am surprised to hear myself say this, but maybe some good has actually come out of my IBD? I have to wonder, would I be married and would I have spent 10 months travelling the world if I hadn’t got Crohn’s. What would I be doing? Would I have the same outlook?
I wouldn’t wish Crohn’s on my worst enemy, and of course, if I could, I would wish it way. Wish I never had the chance of it become active again. I know that is not possible, and whilst I certainly am not defined by the disease, I do think it has changed me and my path in life, mostly in a good way.
Perhaps to sum it up, my IBD is both the beauty and the beast.
What does IBD mean to you? Please comment and SHARE to help raise awareness and understanding this World IBD Day and every day!