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My Chronic Career – Gary with Crohn’s Disease

My Chronic Career’ presents interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Gary with Crohn’s Disease has kindly agreed to be interviewed and his story is below. Thanks Gary! 

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about yourself and your medical history?

My name is Gary and I am originally from Northern Ireland. I am currently at Bournemouth University studying Forensic Science. I have the world’s greatest Girlfriend. Not only is she the love of my life but she is the probable reason I am still walking the earth! Although university is meant to be the best experiences of your life, for a Crohn’s suffer it can be the  most horrifying thing since they were diagnosed.

I was diagnosed with Crohn’s disease in November 2008 and have had to have 1 major op in march 2009 that probably saved my life. I also met the love of my life in January 2009 so she probably saved my life too.

I took ill first when I was in Belgium on holiday and originally thought I had contracted food poisoning from rabbit stew. After nearly 6 months the doctors decided that given the length of time I had been ill to get me properly checked over. I was sent for a number of different tests and I went to pick up my results fearing the worst!

When I first started high school aged 14 I was ill a lot and it was put down to bullying and no matter how much I said I wasn’t the more I got sick and I had to be protecting someone. So I believe that I had Crohn’s for at least 4 years before diagnoses. After I was diagnosed I was given tablets and that helped me stabilise but that was short-lived as within 3 months I was very ill. This led to 3 weeks in bed and 11 days with no food staying in my body. This led to scenes similar to those of “The Exorcist” only from both ends at the same time.

The knife was the only option by the time I got to the hospital! I had 6 inches of my small bowel removed and the ileocecal valve restructured and connected up again. Then 5 days of severe fighting lead to me coming out of hospital in record time, just in time to watch my beloved Man Utd win the Carling cup. But this again was short-lived as by the Tuesday, 3 days after being released ,my stitches burst and evil-smelling pus came flowing out the 12 inch lateral wound on my abdomen. Cue, another 2 days in hospital getting that drained and re stitched!

After that it was home time and a host of appointments and checkups. Though I managed to squeeze an Easter break over to Bournemouth to see my Uni and  meet up with the 2nd love of my life. My long-term girlfriend of 4 months at the time. For this break I got a severe telling off as I wasn’t meant to be doing very much during my rebuilding never mind flying to England! Lucky until September 2010, I haven’t looked back.

And how about your working life? What career path have you taken?

My Crohn’s has never really got in the way of my work or play to be honest. I have worked in 4 different bars and restaurants since being diagnosed. I also worked in a food processing plant distributing meat products all over the UK. Add to that I worked last summer in an amenity site to gain money for uni. I also play amateur league football. So this meant that I was in college during the day, 3 nights football training and sometimes 2 matches a week. So I can honestly say that my Crohn’s has never got in the way but at the same time I haven’t let it beat me!

Did you know about your condition before you were diagnosed?

To be honest I had never heard of it. When I went for my results and the doctor said they had found “abmormal” cells in my intestines he sent me up stairs to see a specialist. I played the scenario over in my head of how I going to tell my family & my new Girlfriend I had cancer! This is the only conclusion that I had considered.

How did you find out further information about your condition when you were diagnosed?

The doctors and specialist gave me tonnes of leaflets and information from NACC and I spent the rest of the week reading everything I could get my hands on. I then started the process of telling everyone and explaining what I had and how I was going to “fix” it.

Also with the course I was studying (forensic science) they allowed me to do my medical research project on Crohn’s disease and this allowed me to talk to people all over the world that had various stages of the condition. All this was very informative and I believe that there is never any bad news, just news that you have to interpret! Never the less I got the highest grade available for my project and it was displayed for the world to see (well anyone that wanted to read it)

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

I have a lot of friends online through various Crohn’s forums and through Facebook. Through my project I trailed through hundreds of websites but I do like to read the latest info coming out through a university group from America on Facebook. They are very quick to get the latest techniques and research online. They are truly amazing!

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

I never had that many problems with my work as I had the freedom and understanding from my bosses that I needed the toilet when I needed it and that if I missed work I would work up the time or get cover a.s.a.p. This worked well as I worked with a group of girls that often wanted to swap shifts after heavy nights so I worked when I could and called in favours when I couldn’t. Though during the time I was ill and having to have the op, I was laid off as I had bad time keeping and unable to work for weeks because of the recovery from the op. The company did offer me a new job when I was fit to work again, though I didn’t take this and instead got a cash settlement in way of the holidays I would have been owed if they hadn’t laid me off.

What is your top tip for employers – what could they do to support people with your condition?

My top tip would be work with the employee, let them have the freedom to negotiate their work at short notice. This is how my bosses worked with me and It worked well. We always had someone nominated to fill in just in case there were people ill or unforeseen circumstances. This worked well and although it may not be ideal but it works well in the long run because having that person on standby not only covers the Crohn’s patient but covers the hangover victim or the mother whose kids have been ill all night.

What is your top tip for employees with your condition?

My top tip for the employee is to open with the boss and the other employees. If people know what is going on they may be less likely to see your treatment as favouritism or talk behind your back. You will feel better about having to call on them if needed or having to phone in sick at the last moment.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

When I take ill I tend to lie down and die for the duration of the flare up. Everyone knows I’m ill when I “stop”. Being quite active is an advantage because I can deal and cope with a lot and its only when it becomes unbearable that I have to admit defeat (if only briefly). I also tend to recover quicker if I starve myself and only take on fluids. I find this gives my body a break and allows for quicker recovery and I also find kicking a football about is a good release as well. Not exactly a Crohn’s coping mechanism but it is a stress relief and stress is a major contributor to the flare ups, so maybe it actually is.

Do you think you have developed any personal skills or qualities as a result of having an your condition? (I for example have encyclopaedic knowledge of public toilet locations!)

Other than outstanding knowledge of every toilet in my university, town and neighbouring towns I think I have developed the quality of being able to work my socks off in a small time scale as I am either working to catch up or working to get a little bit ahead so I have a built-in mechanism allowing for illness. This stood by me at college as I was streaks ahead in all areas and allowed me the time off without having to worry about being behind. Therefore a lot of the pressure is taken off and stress dramatically.

What advice would you give people who have just been diagnosed with your condition?

Research and read everything you can get your hands on. It allows you to know what is going on inside and prepares you for what might be coming in years to come (hopefully not though) if you understand what is happening then you can tell others and the taboo that goes with the whole condition becomes non-existent and you and those close to you can deal with it and help to keep you on the straight and narrow

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Read about Crohn’s and support the person that has been diagnosed. They will feel a lot better if they haven’t the need to explain everything every time something occurs! They will also feel better about approaching you as they know you understand and will help them get through the rough as well as the smooth!

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)