I am MORE than IBD – I am a PERSON, yes I have an ostomy bag so what? #WorldIBDday

Today is World IBD Day. This morning more than FIVE MILLION PEOPLE woke up with Crohn’s or Ulcerative Colitis. Can you imagine that? Can you comprehend that many men, women and children living in pain, running to the bathroom, dealing with blood loss, fatigue, weight-loss, skin problems, and constantly battling to stay alive? I live with Ulcerative Colitis every day and even I can’t get my head around that number!

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IF you crossed one of those five million people in the street, at the supermarket, or queuing to pay for a lottery ticket would you know they were ill? If they asked for your help would you give it? If they wanted to go in front of you in the queue for the ladies loo at a bar would you let them? Would you be understanding if you saw someone who looked perfectly fit and healthy using a disabled loo? Would you judge them, would you put it down to period pains, stomach ache or a bad curry if you saw someone racing to the toilet at work with constant bouts of diarrhea? Would you humiliate them, call them anorexic or criticise their diet? Would you play practical jokes on them; use all the toilet rolls to teepee a nearby house, bitch about their size, tell them to get a good feed, criticise their frequent toilet breaks at work, call them names and point at their injection bruises, or call them antisocial for not coming to meals out or going out drinking

OR would you respect them for living with the constant battle against an incurable illness? See the bravery behind the disease, look beneath the pain and see the courage, determination and downright stubbornness to survive?

I was just 13 when I almost died from shame. I decided I would rather die than talk about my symptoms. I allowed people to watch me turn into a living skeleton, coping with agonising pain, living every second in fear, constant agony and wanting to die rather than keep living with the pain. I almost got my wish. Why? Because I didn’t want to be called a freak. I was pooing out my entire body weight, rushing to the toilet around 50 times a day, passing out, clawing at the cubicle walls and stuffing my school blazer in my mouth to stop myself screaming out in pain. But I didn’t get help because I didn’t want to be judged. All my life I’d been bullied, I didn’t want them to have poo freak to add to their name calling list.

YOUS can see a story I did in the Evening Chronicle about my illness here

People can be cruel. I know the things I’ve listed above seem a little extreme, but I know they happen because I’ve seen it. I’ve had fingers pointed at me. I’ve had the names, the insults thrown in my face while I’m almost collapsing from pain and dehydration. I’ve felt the slap of the dreaded A word when I’ve lost all my weight and supposed friends bitch behind my back as I rush to the loo, calling me bulimic and whispering about my skeletal frame and inability to hold food down. I’ve had old ladies shout at me for using disabled toilets in train stations, when my ostomy bag is about to explode, and been told to stand up on trains when I’m about to collapse.

It’s bad enough having to deal with the accidents. With the reality of sometimes being so desperate you lose control, or have to go through the humiliating procedures and undignified bed baths (etc). All those things are hard enough without having to deal with other people’s judgements, we are often giving ourselves a hard enough time.

Even now, 13 years after I first felt the pain I live with every day – first saw the bright red blood and passed out in the toilet cubicle – I’m still left reeling from people’s ill-informed judgements. I don’t show it but I’m horrified when people call me anorexic to my face. I’m a stubborn old goat, but it still brings a tear to my eye, and reminds me of some pretty dark times in the PE changing rooms at high school. How dare they? And what if I was? It is a serious mental illness after all and not something gossips should use as an insult.

People bitch and gossip, of course they do. I like a good gossip as much as anyone, and I’m sure I’ve been a Queen Bitch at times, and upset people in the process. But 13 years is a long time to live with nasty comments behind your back, little snipes about the smell of the toilet you’ve just been in, digs at your weight, pokes at the quality of your work, there is no wonder depression often goes hand in hand with IBD.

Oh and that’s not to mention the people who think you’ve brought it on yourself. I can’t count the number of times people have told me to change my diet, stop drinking, cut down on exercising, have a good feed – oh, and the best one GIVE UP WORK! It seems everyone is an expert when it comes to other people’s illnesses. They might want to help (some genuinely do) but at the end of the day most don’t really want to find out more about IBD, they just want to put their two pennies in.

But it’s not all their fault. IBD is an invisible illness. Looking at me today you would probably think I have an eating disorder not a chronic illness. If you passed me in the street you might not even think I was any different to anyone else. I look thin, tired, but fairly normal. I’m not holding onto the walls for support, I’ve not got drips hanging out of my arms (most of the time), I’m not in a wheelchair or being supported by a carer, and I’m most definitely not obese. At the end of the day, despite more than five million people living with IBD all over the world, many people still have no idea what it is. And out of the few that do, there is still this preconception that Crohn’s and Colitis sufferers are just people who need to go to the loo a lot. 

There is so much more to it than that. IBD is not IBS. It doesn’t go away if we change our diets (it can help some people); it won’t go away if we take Imodium, cut out booze, stop eating curry. Many IBD sufferers end up reliant on a toxic mixture of drugs to keep the illness at bay – including Immunosuppressant drugs which do exactly what they say on the tin – and some (me included) on chemotherapy. Many have to have surgery in their lifetime, either to get rid of blockages or strictures, or to remove large parts of their colon.

And that’s where I’m at this WORLD IBD DAY. At 26-years-old I’m a loud and proud OSTOMATE. Me and my stoma Winnie have been attached at the abdomen for just over a year and I’ve never felt better. Two months ago I had her made permanent during a serious operation which left me without a rectum. I now have an ostomy bag, something I never thought I would be able to cope with, but you know what I’m fine. In fact I’m more than fine, I’m alive, and without it I would be a living shell, probably too ill to leave the house.

I would be lying if I said I don’t wish I could have my old, flat stomach back, but it’s not going to happen. Me and Winnie are going to be together forever. I still go to the toilet, just in a different way to other people. I’ve got used to it, I’ve accepted it, I wish other people would do the same.

I am not just an illness, please don’t label me, I am a person not a disease. IBD does not define me, I define me! People with IBD are some of the bravest and most determined people I have ever met. I mean you only have to look at Sir Steve Redgrave to know we don’t let our illness stop us doing anything!!!





3 thoughts on “I am MORE than IBD – I am a PERSON, yes I have an ostomy bag so what? #WorldIBDday

  1. I was so moved reading your blog. I have a friend who’s suffering of ulcerative collitis and his wife, one of my best friends since childhood, has tasked me to find out the type of treatment available for her husband. They live in Romania and after so many visits as hospitals in Romania and Austria, with no efficient treatment to date, they found out about the football player Darren Fletcher who suffered from the same illness and who is now a lot better, doing what he loves: playing football again. After having read about the surgeon who operated the surgery on him, I’ve decided that I will get in contact with him or the hospital where he works to find out what the process would be for a non-UK resident to come for a consultation. But wanted to ask you as well if you don’t mind sharing the name of the hospital/ surgeon who performed your surgery and whether you are feeling a lot better now after the surgery. You’re a brave lady and I hope you are doing great now! Many thanks in advance! Cristina

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