My life with Crohn's Disease

I suffered with Crohn’s Disease for a year before I was diagnosed. It started with every bite I ate making its way through my digestive system at lightning speed, clawing with sharp nails through my bowel and making a dramatic exit with little warning. I quickly developed a very valid anxiety about being within appropriate proximity to a toilet at all times. I have memories of racing around the city looking for a public toilet, leaving a half-full trolley of groceries, abandoning social occasions for refuge in my own bathroom.  I started to withdraw permanently to my cold, tiled palace.

The second, most glamorous side effect was that, as all food and drink was racing through me like a slippery-slide, my body was not retaining nutrients – the biggest problem being iron. I became weak, pale, eternally light headed. And miserable.

You’re saying – go to the doctor you crazy person! Why would it take you twelve months of misery before you sorted this out! Of course I went to the doctor.  The local GP told me it was nerves. Anxiety. Stress. I just needed to relax. I was just “worried about the wedding”. Oh, I forgot to mention – I was due to be married in October. Of course, doesn’t every bride to be develop debilitating nerves at the thought of a lifetime spent with the one man!? So, I accepted this diagnosis and continued to collapse in inconvenient places and learned to hide my frequent bathroom visits.

I also lost a lot of weight.

Like, 20 kilos.

I was continually told how good I looked, whether I had been working out/dieting/developing an eating disorder. I actually had a “friend” look at me with envy one evening out and say, “How do I get what you’ve got?” Seriously.

So my wedding day came, without diagnosis. I looked bloody incredible. Pity I felt like I was going to pass out all day and was too afraid to eat. I still can’t look back at those photos without remembering the pain and discomfort of that day. Others see a beautiful, thin bride – I see a sickly, miserable woman. I got through the day without passing out, although photos were cut short and I starved myself with fear of an emergency.

It happened after the speeches, before the cutting of the cake. My body betrayed me. I knew I had no other choice. I went to the bathroom, by myself. I lifted the veneer of chiffon and satin and organza and let go. That was when it happened. I wiped. And there it was – execrably vivid red blood. I was bleeding from the inside out. And I was sure of it – I was dying. My new husband and I finished off the formalities of the evening and left our own wedding early, me cursing my body for disallowing me the special day that every bride deserves. I spent our entire honeymoon in Fiji on the toilet, in too much pain to walk, eat or have sex. I’m sure my husband was starting to question his choice of bride!

I returned home, and was finally diagnosed as having Crohn’s Disease. It’s pretty heavy stuff, being told you have a chronic illness with no cure. But, at the time, the possibility of a treatment – something that would stop the misery, however temporarily, was a relief. It took a couple of years to find the right medication, but I’m one of the lucky ones – they found one that worked. I did not develop fistulas, cancer, obstructions. I do not have a stoma bag. And those who do are freaking heroes.

I do have to take immuno-suppressants (doesn’t that seem completely backward – I have to take a foreign chemical to stop my body from attacking itself?). These are of the same strength as those who have had an organ transplant, and, as you can imagine, leave my immune system fairly vulnerable.

My specialist told me that I would never be able to hold down a full time job; that I would be incapacitated forever. Well, it hasn’t always been easy (try leaving a group of 14-year-olds without a teacher mid-lesson while you run to the closest cubicle?), but I am proud to say that, six years on, I do hold down a very demanding, time consuming job, and am amazing at it (why does society think it is not okay to boast about our accomplishments?). I am also still married. And have sex. Sometimes.

As we speak, I am sipping a delicious cup of Picoprep (if you don’t know what this is, think yourself spectacularly lucky) in preparation for tomorrow’s check-up colonoscopy. I will always have Crohn’s disease, but am told there will be a cure in my lifetime. For the love of toilet seats, may this be true.