'My life with Crohn's disease'

Carrie Grant has had the potentially life-threatening bowel condition Crohn's disease since she was a teenager.

It's more than 20 years since her diagnosis of Crohn's disease but the mother of three and voice coach still has excruciating stomach pains that stop her from eating for weeks.

"It makes me smile when I hear of people not eating for a few days," she says. "A couple of years ago I didn't eat for 90 days. Some sufferers can go for months without symptoms but I suffer constantly from stomach ache and diarrhoea.

"I live with low-level pain most of the time, although if I’m struggling I take paracetamol.

“I've lived on nutritional drinks, but I haven’t had to do that for the last two years, which is great because they taste horrible.”

Carrie says coping with the disease is more of a mental battle than a physical one, but one that she's winning. "Crohn's never goes away but I feel a lot more in control of it now than when I was younger," she says.

"It used to really get me down, which just made me more ill, but now I’m a lot more positive.

"As I get older I find that having a positive frame of mind really helps. If I wake up with no pain I think, ‘isn’t this great’ and really appreciate it."

"It makes me smile when I hear of people not eating for a few days. A couple of years ago I didn't eat for 90 days"

Carrie is one of about 90,000 people in the UK who have the disease, which causes inflammation, ulcers and scarring. Carrie, who lives in north London with husband David and their daughters, Olivia, Talia and Imogen, started feeling ill in November 1983.

"I had diarrhoea and was losing blood," she says. "Blood tests showed nothing, but the symptoms persisted for two years. By then I was getting skin rashes, lumps down my shinbones and mouth ulcers.
 
"Then I saw an item on TV about Crohn's disease. I knew it was what I had. When the consultant confirmed it, I felt relief because I thought I may have had cancer."

Read more about the symptoms of Crohn's disease.
 
It was devastating news for Carrie, who thought her life and career were over. Around this time she met her future husband David.
 
"Tests showed that I had damage throughout my large and small bowel," says Carrie. "The Crohn's had left certain sections or 'strictures' withered. This left me unable to absorb food through the bowel lining, which caused the diarrhoea and pain. I was put on anti-inflammatory drugs.
 
"My bowel was in a terrible state, so the next step was a food elimination diet. I was intolerant to dairy products, pineapple, nuts, lamb and caffeine. But my bowel was so damaged that in May 1989 I had to have bowel surgery."
 
It was the worst time of Carrie's life. Eight inches of her large bowel was removed, and doctors found that her bowel was a lot narrower than it should have been, which is why she was in so much pain.

"I needed colonoscopies every three months to try to alleviate the problem," she says. "There were times when the hospital gave me painkillers, which stopped working after two hours. I knew there was still had two hours before they could give me my next injection, and it's agony.”

Ten years later, in January 1999 after a colonoscopy, part of Carrie's bowel split and she was rushed to hospital for an emergency blood transfusion.

"It increased my determination not to let it ruin my life,” says Carrie. “I’m just grateful for every day when I'm not in too much pain.

“Of course it can be hard, especially with family and friends. I sometimes find it difficult to watch David eat. And if we’re out with friends, I have to sit there with a glass of water, smelling their food.”

Read more about the treatment of Crohn's disease and the author William Fiennes's experience of living with Crohn's disease.

 

Page last reviewed: 20/08/2012

Next review due: 20/08/2014

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The 14 comments posted are personal views. Any information they give has not been checked and may not be accurate.

RMMC90 said on 02 May 2014

I am currently in hospital with my first flare up of inflammtory bowel disease and awaiting confirmation on a diagnosis of crohn's or colitis. Although I was already familiar with Crohn's disease I naturally looked up the NHS information. I must say after reading Carrie's story I felt much worse about my current state and life-long prognosis because this case is so serious, severe and appears so chronically debilitating everyday. I am 24 years old so reading it was a real kick in the pants. I respect Carrie's story for it's honesty but with the modern drug treatments I think it paints a very bleak picture for people like myself who are becoming newly diagnosed. Further clarification is needed that this is just one chronic story and other people can live with much less restriction.

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aj54mas said on 22 October 2012

I am 67 yrs and was diagnosed with Crohn's approx 28 yrs ago after various tests. I was given various medication but was unable to live life normally due to symptoms. I went into hospital in Jan 1986 for a section removal of small bowel. Due to my insides not healing correctly had to have 3 ops to remove more sections, put me on 3 (bags) large/small intestine and an absess and because of extreme ill health, weight loss etc I was transferred to St Marks Hospital when it was still in Islington. (Hospital now moved to West Hampstead). They fought for me, had final op to repair damage and joined all my tubes up and brought me back to normal life. I spent 4 months in hospital in total. I take large amount of medication, vitamins etc due to short bowel. The good news is that yes I take medication but my Crohn's flares up for a day or two but I can take additional medication to ease it back down. I have the Ensure liquid nutrition mentioned in previous comment when its at its worse as this maintains me without the need for food. At the time I had my 4th op I was determined that this awful disease was not going to rule me, it was my life and I would live it to the best of my capabilities. Stress is an awful part of Crohn's making flare-ups happen but the best advice I can give is find a doctor/specialist at your surgery or hospital who fully understands Crohn's,talk with them through your anxieties and keep pursuing until you find a person who will talk/answer your worries. Don't give up. Life is still worth living even with Crohn's. Try website www.nacc.org.uk where you can find lots of info and help

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HHCD said on 14 August 2012

Azathioprine was one of the most awful treatments my Dr gave me for Crohn's.Awful vomiting,severe headaches,fatigue which floored me,horrid sweats,white blood cell count below safe level.
I had the same problems with 6mp and Methotrexate.
I'm so glad i now don't take any of these drugs anymore.
I hope Carrie finds a treatment which helps her.

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HHCD said on 13 August 2012

I had awful side affects from Azathioprine which were so bad it put me back in hospital.The most violent headaches i've ever experienced,fatigue which knocked me dead.I would be boiling hot and then freezing cold.Dr's told me to 'try to cope with it'.Once my blood tests got to a stage where the results were dangerous i stopped taking this awful drug.
I've had the same awful problems with 6MP & methotrexate.
The 2 year period i took these drugs was the worst time of my life.



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Viinii said on 04 July 2012

I started taking aza on 10th February, I felt awful while taking the drug I felt nauseous, dizzy, constantly warm & slightly feverish, lower backache & constantly exhausted on top of my usual crohn’s & other ailment symptoms.
Stupidly I increased the dose as requested by my consultant but the above symptoms increased I started getting headaches & feeling like I needed to lie down around 3 hrs after taking them which would last hours. I hardly left the house (other than hospital apps)
On the 16th March my consultant informed me that I needed to stop taking aza immediately as it had caused deranged liver function & pancreatitis (amylase =152 normal range: <100, gamma G transferase=248 normal range:9-40 alkaline phosphatise= 128 normal range:35-105,).
Emotionally I was at rock bottom, only my husband saw how sick I was. I kept everyone else at bay. Since april I’ve been taking Humira ( the one you self inject), on top of everything else I’m now struggling on administration days, so much so that I have to go to my GPs for a nurse to give me the drug, so far I haven’t noticed any improvement in my symptoms.

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Hails2012 said on 03 May 2012

I have seen people talking about Azathiorprine. Don't do it!
I was taking this for approx 2 years and was very poorly with it, I was admitted to hospital with viral hepatitis and liver poisoning and it was believed to be from the Azathiorprine I wa taking. Now I manage my crohns with diet exercise and attempt a stress free life. I am currently on no immune suppressants or strong drugs.

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Viinii said on 07 February 2012

I've suffered with Crohn's for about 11 years but was only diagnosed in 2003 (had bowel surgery with c-section), by that point I had a fistulae between my bowel & bladder, couldn't eat & most people (even my Drs) assumed I had an eating disorder (it still states this in my medical records). I vomited & had diarrhoea daily.

I've had two bowel resections since my diagnosis, I have preferred to treat my disease with pain killers, lopermide, anti sickness meds & steroids when it gets severe.
Actually knowing having a diagnosis has been a blessing, but because of the nature of the disease it does make me distance myself from friends & family when it’s at its most severe which leaves me feeling low & lonely.


After diagnosis I promised I wouldn’t let the disease take over again, I was determined to make something of my life & be a proper mum (try not to let our 8yr old see me looking unwell). I became a legal associate (ILEX ) in 2008, I’m currently @ University studying for a law degree.


My consultant has been trying to convince me to take azathioprine for years, my disease has been active & causing great distress & has stopped me being able to attend Uni, so I’m considering giving them a go, but I’m concerned because of recent news reports linking the drug to cancer.

Any advice from people who have taken azathioprine would be greatly appreciated.

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anne11 said on 03 February 2012

i have just been told i might have chrons or colitis i don't no what the difference is but very worried don't get results until three weeks time i just don't no what to expect anyone out there can help me please my doctor wasn't any help at all just made me more worried

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neil price said on 22 September 2010

this women has shown grit and determination to win a quality of life worth living with pma.
i gave up for 8 months and lived a life incapacity benefit in a 1 bed flat. no car nomoney no hope.
i dragged myself back into the world of living.
its the only way with crohns.
i go to work and often feel awfull, but pull through to the good times.
last week i was feeling sick all week and passing blood, its dragged me down to having bronchitous, my boss is very understanding ,but people who have the privelage of good health do not realise that when you are feeling poorly its so disabling. ive been flat out on sofa for 5 days, bronchitous and passing blood. very weak. this is the downside. but i will pull through and get back to work. just like to say to carrie that i admire her bravery and determination, and it has helped me to read her story whilst on a low eb. thankyou.

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Reluctant runner said on 20 November 2009

Hi Alan,
Thanks for your comments. I've looked into this and amended the copy as you will see above. If you want any further information about the figures in this article, please get in touch again. To contact the editorial team directly, use the "Contact" link at the very top of this page.
Anna
Anna Sutton
Live Well Editor, NHS Choices

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Alan Procter said on 06 November 2009

I am very concerned at the dramatic increase in the number of people going into hospital with crohns, as reported in the NHS Hospital Statistics. I am quite upset to learn that although this article states that 40,000 people have this dreadful disease, figures for 2009/2009 show that over 50,000 people have been admitted.

On 13 July 2009, Anne Keen, Secretary of State for Health informed Norman Lamb MP that information on the number of cases of crohns disease are not collected! If this is so how come they publish a figure of 40,000 on here?

mpst people with crohns that I have met, rarely spend time in hospital, so is there a case for the NHS to keep better records about crohns, particularly as the number of people going in hospital with it have doubled in 6 years?

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Heavenly said on 24 February 2009

I think Carrie is very inspiring. I was only 16 when mine first kicked off and over 6 years i've had 31 operations due to Crohn's disease. I can relate alot to all the pain she goes through, the food intake problems and dealing with it mentally, being young and going through so much is a battle then having to try and control the Crohn's is very hard. The big problem with society is not understanding that all people who suffer with Crohn's are different not all are going to present the same symptoms and what works for one person doesn't mean it will work for all. To my surgeon has said i'm a big mystery as the complications with my Crohn's have never been presented like others have. For Carrie to speak out about how she deals with daliy life is very brave and shows we don't have to be ashamed about our illness even though it can be embarrassing.

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Mimi1018 said on 17 February 2009

I thikn this article is really inspiring. I was just one year younger than Carrie when i was diagnosed and it changes your life completely. I no how she feels when going out with friends and watchin fellow family members eating what ever they want. I think the hardest thing bout living with Crohn's disease is the pressure to eat healthy but you cant eat half of the healthy things so people look at you funny wen u eat other things but that is sociedty for you. Mini x

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Mimi1018 said on 17 February 2009

I thikn this article is really inspiring. I was just one year younger than Carrie when i was diagnosed and it changes your life completely. I no how she feels when going out with friends and watchin fellow family members eating what ever they want. I think the hardest thing bout living with Crohn's disease is the pressure to eat healthy but you cant eat half of the healthy things so people look at you funny wen u eat other things but that is sociedty for you. Mini x

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