Living with Crohn’s Disease, my invisible friend – Crohns Blog – Everyday life
I was diagnosed with Crohn’s Disease in 1983, having been ill for several years prior to this, although no one seemed to know what was wrong with me. I was in my twenties, a single parent of a two year old and a full time teaching job. It was only when I literally collapsed and got rushed into hospital that my illness was discovered. When the doctor confirmed the diagnosis I had no idea what it was or that this illness would define the rest of my life in some shape or form.
What followed were several months of hospitalization, drug treatment and finally a resection of a large part of my small bowel. When I returned from hospital I couldn’t even pick up my little girl or return to work for some time. Since that time, not a day has passed when I haven’t thought about my Crohn’s, my invisible “friend”. I have been in hospital so many times that I have lost count, usually admitted in severe pain with suspected blockages. I have had steroids, X-rays, morphine, drips, and cameras down my throat and up my bottom. I was prescribed with Azathioprine a couple of years ago and it just about destroyed my immune system. I now just take folic acid and have B12 injections every three months. I have tried all manner of diets, vegetarian, dairy free, you name it, I’ve tried it and there is a long list of foodstuffs that can put me in hospital within hours. For someone with a passion for food, that has been quite difficult!
That’s the dreary part over. Now let’s, “Skip to the good bit” in the words of the Rizzle Kicks. I made up my mind early on that I was going to fight this illness and not let it define my life in a wholly negative way. I shout about it from the rooftops. I make announcements like an alcoholic, “I’m Jo and I’ve got Crohn’s!” When people I don’t know try to tell me “just try that (food), you might like it ”or question why I am in the queue for the disabled toilets, I give them the full facts. People need to know about this illness and how it affects so many people who are sometimes embarrassed to talk about it. I have had fantastically supportive family, friends, and employers. People will urge me to ring them in the middle of the night if I need a lift to hospital and can’t get an ambulance quickly enough. They don’t even mind if I am sick in their glove compartment although it is hard for them when they see me writhing in agony and throwing up the inside of my stomach lining.
I’ve had a successful career and have had two wonderful children who are now grown up. The second child, my son, seemed something of a miracle as I had half of my reproductive organs removed along with my bowel in that first operation. I imagined my stomach splitting open at the stitch line as my pregnancy progressed. (No keyhole surgery in the eighties.) I have some great scars which I show people indiscriminately!
In recent years I decided to travel the world despite cautionary tales. I have visited Australia, South East Asia, North, Central and South America and South Africa, to name but a few. I spent two summers volunteering with street children in Costa Rica and Ecuador. I have been in the jungle, the rain forest, up mountains and on remote islands. I have been zip wiring, white water rafting and hang gliding. My fingers are always firmly crossed because if I am not near a hospital I could be in serious trouble, not to mention severe pain. People often ask me how do I do it and aren’t I just a little bit scared? Of course I am but that doesn’t stop me. I carry a doctor’s letter translated into the language of the country I am visiting, some medication and masses of toilet roll and hand sanitizer. Sometimes I have moments of panic but I always tell people I am travelling with or random people if I need to jump to the front of a toilet queue or stop a bus and go behind a bush. People don’t always “get it”, particularly the immediacy of the situation when you need the loo but they are usually sympathetic and helpful.
As I write, I am packing for my next trip to the Galapagos next week and in the summer I am heading to Madagascar. After all, you’re only here once and life is short so my mantra is to make the most of every moment. Thank you Crohn’s, you may have just made me truly appreciate that fact!!
Thanks to Jo O’Donoghue for this Crohns blog post on Living with Crohn’s. Jo is a private education consultant who has worked for forty years with children with special educational needs, predominantly those with challenging behaviour. She has two grown up children, two grandchildren and is a respite and emergency foster carer. She was diagnosed with Crohn’s in her twenties and tells of how Crohn’s has affected her life. She currently divides her time between work and travelling the world!