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Living with Crohn’s disease – my story

Article by Ceri Wheeldon
I have lived with crohn’s disease for nearly 25 years.I was 28 when I was  first diagnosed.

There is no cure for Crohn’s and nobody seems to know what causes it. It is an inflammatory bowel disease and is extremely debilitating.

At the time of my diagnosis my weight had plummeted to less than 7 stone. I was extremely weak (but still going to work every day  – even though my employer frequently sent me home) and repeated visits to my GP over a 10 month period had resulted in my being told I had everything from a  gastric bug and food poisoning to depression. My argument that I was not depressed but simply hadn’t the energy to put one foot in front of the other, especially as visits to the loo every 10 to 15 minutes meant I was also unable to sleep. I was also worried about the the loss of blood. I could only leave the house if I planned ahead where I would be able to access loos. In the end I insisted on a referral and paid to see a gastroenterologist privately. I was diagnosed with Crohn’s.

Being told at 28 that I was faced with a lifetime of steroids, steroid enemas and anti-inflammatory drugs, and potential surgery in the future to have a colostomy – and a bag- was devastating.

Managing Crohn’s Disease

However, I decided early on that now I knew what I was dealing with, I would manage the Crohn’s and it would not manage me.

I did my own research, I asked my specialist questions. Once I had the disease under control, I decided to try to manage with diet and alternative therapies.

For six months I ate rice cakes, poached fish and chicken. I drank gallons of aloe vera juice. Gradually more foods were added. I still do not eat red meat, and limit all pasteurised dairy products. In the past 24 years I have had only 3 significant relapses – and all during periods of extreme stress and at times where. due to circumstances, I have let my diet slip.

But there have been positives. I found managing my illness to fit in with the routine of being in paid employment difficult, especially as my role involved international travel frequently requiring the pressure of  5am departures for the airport.

I decided to set up my own business so that I could set my own routine, travel at times that suited me,  and not get stressed if I had to work close to a bathroom for a few days. It was the best move I ever made. Apart from being better for my health it was also financially more rewarding.

Crohns had not stopped me from having a full social life. I met and married my husband, who just happens to be a doctor so is understanding.
Most people who meet me have no idea that Crohn’s is part of my life. They think I am just a fussy eater!

Crohn’s is manageable

I do get extremely tired. I have come to learn the symptoms building up to a major flare up and now know when I have to slow down. Yes at these times I have to sometimes cancel social arrangements, and I am likely to be far less active on twitter and facebook as I have too little energy to think straight! But Crohn’s is manageable. There are far worse illnesses to live with.
When I look back to when I was initially diagnosed, I felt my life as I knew it had come to an end. But I have learnt that with the right attitude you can take control. The specialists said that I would not have the willpower to be able to manage my Crohn’s with such a strict diet long term. I simply said he had no idea how determined I could be. Nearly 25 years later I have been proven right!

Ceri Wheeldon

Ceri is Founder and Editor of Fabafterfifty.co.uk She is a frequent speaker at events and in the media on topics related to women over 50 , including style and living agelessly. With 20+ years experience as a headhunter Ceri also now helps support those looking to extend their working lives.

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  1. Diane Priestley

    May 15, 2012

    Hi Ceri,
    Thanks for sharing this personal story of your struggle with Crohn’s Disease and your victory over it through researching the condition and finding dietary and lifestyle solutions rather than relying on drugs (which can lead to more side effects) Such a sensible and courageous approach is empowering rather than becoming a victim to a debilitating condition. You are a Wise Woman! Thanks for sharing your wisdom. I hope it helps other sufferers.

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