Crohn’s made me feel isolated and ashamed, says Paul

Paul Henry was young, fit and athletic. So when he was diagnosed with Crohn’s and told he needed a colostomy, he was devastated. Twenty years later, the dad of four from Birmingham is living pain-free with a stoma, and he has no regrets.  

Paul now living easier with Crohn’s and a colostomy bag

I first knew something was wrong when I was about 17. I started having haemorrhoids and for two years I just used suppositories. But I developed abscesses which were so painful I couldn’t sit down.

The doctors diagnosed Crohn’s Disease, gave me drugs and talked about a colostomy.

But my body was my temple – I was a construction worker and a basketball player and I used to work out in the parks with my top off. My body was chiselled. There was no way I was going to do pull-ups in the park with a colostomy bag flapping in the wind.

Unfortunately, things didn’t get better. I had problems with incontinence. I was scared to eat and the pain was so bad that I couldn’t walk.

I was told to change my diet to something bland so I was pouring water on to my Cornflakes instead of milk – no pizzas, no spicey food. But it didn’t make a lot of difference.

When I was 26 (in 1994), I was admitted to hospital to have an abscess removed.

Then I carried on like before. My Crohn’s was very aggressive, but there didn’t seem anything to do but wait for medical research to come up with a cure.

In 2006 I went to my GP for more pain killers. He examined me and insisted that I went to hospital for a colonoscopy.  I was sick and tired of the pain, and of being prodded about by medical people, so in the end there was no alternative.

When I arrived at the hospital, I thought I was walking fast – until an old lady with a walking frame overtook me. That’s when I realised things were bad.

I was optimistic that the operation to remove my colon could be reversed, but no such luck.

After that first operation, I was happy the pain was all over. But when I had to order my stuff from the chemist, it brought tears to my eyes. I was gutted because it felt like I wasn’t complete. I needed all this stuff just to function and it made me feel abnormal.  I was 28 years old and I couldn’t face the embarrassment.

What helped me get over it was being able to get everything delivered to my door.

My sister made me a pouch for my bag. I called it Gloria because I felt glorified to be in less pain. I had to get over the embarrassment and tell myself it’s nothing to be ashamed of.

In 2013 the colonoscopy was followed by an ileostomy to remove my large bowel.

Since then I’ve been almost pain-free. I can sit down. I go off-road biking with my dog Bullet, I play basketball, go swimming and do callisthenics.

The stoma doesn’t really bother me – except it’s white. It seems incredible that there isn’t a black or a brown one. I can’t be the only British black Caribbean man who’s had a colostomy.

If I look back at what it’s been like to live with Crohn’s, I’d say it’s made me a better person.

I think everything happens for a reason. I was always the alpha male, playing hard, being a bit of a Jack the Lad. Crohn’s forced me to slow down and re-evaluate, become more responsible. I had to stop thinking physically and start reacting  mentally.

My children have helped me a lot. They’re not bothered by the stoma – they’re used to it.

Basketball has been my saviour. It gave me a sense of normality. When you step on the court you don’t care about everyday things and the other guys aren’t bothered. They don’t take it easy on me. It’s very competitive and makes me want to get more out of life.

I’ve definitely had down times. Having Crohn’s can be a lonely place, especially as a black man – I don’t see anyone else of my colour with the same thing. They must be out there but maybe they hide it.

Life’s too short to feel sorry for yourself. Sometimes when I’m in a hospital waiting room, I look around and see people a lot worse off who can’t do as much as I do.

You can’t live on a wish. You have to live day to day and try to make every day better than the last.

Nobody’s perfect, and my life’s not over.