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Guest post: Carrie Grant - 'when you have a chronic illness, you know your body best'

19 replies

KateMumsnet · 15/10/2014 16:21

When I was first diagnosed with Crohn's Disease at the age of 20, the overwhelming feeling was one of relief. Following two years of being ill - numerous doctors, hospital tests and remedies, none of which relieved the pain - I finally had a name for the symptoms I was experiencing. Unfortunately, by the time I got my diagnosis, the condition had progressed so much that I needed surgery.

It seems that not much has changed, and I still hear of stories of it taking years for people to be diagnosed. The parents of young girls are being told their daughters have eating disorders, for example – months or years later when their daughters are diagnosed with Crohn's, they have to deal with the guilt of having scrutinised every meal.

The trouble is, nobody wants to talk about their bottoms or their poo. When you have a condition like Inflammatory Bowel Disease or Crohn's, you feel ashamed and isolated. At 20, it was difficult not to think ‘why me?’ I hadn't factored ill health into my plans. Would I be able to work? Or have kids? My life felt as though it had been reduced to pain management, hospital visits and sitting on the loo for days on end.

Half the battle with Crohn's, as with all chronic conditions, is finding the mental strength to deal with everything that's thrown at you. In Europe, 40% of the population have been diagnosed with a chronic condition by the age of 15, so a huge number of us are dealing with ill heath from a young age. It sounds obvious to say that the key is learning to gain control, but I know that when I received my diagnosis, it took me a long time to get out of ‘crisis mode’ - to realise that I could be the leader of my own health.

I remember one day, about five years in, lying in hospital after some surgery (I had to have eight inches of my large bowel removed) and thinking: “My life is so small, and I don't want it to stay like this. I cannot allow myself to be defeated any more. If I have this disease I might as well accept it and stop resisting. If I am to be ill then I'll go through my life an ill version of everything I wanted to be. I have to let go of what I've lost and embrace what I have left.” That was the breakthrough moment for me. From then on, everything seemed a little easier. My life didn't end, and I did move forward and achieve many of my dreams.

When the Crohn's flares up it is still unpleasant, and I suffer from stomach ache constantly and from daily diarrhoea, but I no longer feel I've been dropped in Piccadilly Circus without a map. Whatever I have to face, I know there are always positives too. Much of what I now like about myself as a woman in my forties is a result of the journey I've had to make with this
illness – sometimes, I even feel grateful.

On the practical level, it's so important to make sure you investigate a full range of treatment therapies. With my Crohn's, diet has made a huge difference. I'm largely dairy and wheat free, and if I get a flare up I go straight onto an elemental drink, which I can live on and gives my bowel a rest. I can stay on it for up to three months at a time, if necessary. It's hard to stick to but over the years it's got a lot easier - I even spent the whole of the second series of Fame Academy on it, working long hours in a highly pressurised environment.

If you've just been diagnosed, there's no getting away from the fact you’re at the beginning of a very long and sometimes frustrating journey. The key is to learn how to manage your illness without being defined by it. And be strong: you know your body, and don't let anyone tell you otherwise. When you go and see your specialist, remember that you are not a victim - you are the expert client, because no one knows your condition, or even your child's condition, better than you. Life is not over; this will not be the sum total of everything you do, so stand strong.

Book your tickets for Blogfest here. Crohn's and Colitis UK offer support services here

OP posts:
Mrbumpsbruises · 15/10/2014 18:21

Amazing and inspiring. I am currently lying in bed having a little pity party at feeling so unwell all the time. Your comments about life seeming so small really resonates. I shall try my best to make it bigger. Thank you for being a great example of what can be achieved, and for sharing something so personal. And can I just say....awesome hair!

Mintyy · 15/10/2014 21:05

"When you have a chronic illness you know your body best"

True. Can't argue with that.

plus3 · 15/10/2014 21:09

Thank you for this - I have UC & still feel that I am in 'crisis mode' not sure how to get out of it actually, but I need to. Life is too small.

kokomaloko · 15/10/2014 22:16

Very inspiring! I had something very similar to CD flare up & a huge Graves' disease (hyperthyroid) relapse after having my daughter. Think I would have curled up & died if it wasn't for her. The dr told me I would never reach remission but i have been off all meds since Feb from diet and natural supplements & trusting my body to heal. It's amazing what we can do ourselves Wink

AimlesslyPurposeful · 16/10/2014 09:34

Really inspiring! I needed to read this three years ago.

I have Ulcerative Colitis and at the moment am having a good period of remission. However, about three years ago I spent months and months on the sofa as just a mouthful of water would send me running to the bathroom. I thought my life was over - I was home schooling my DS and that had to end which broke my heart. I promised myself that if I ever felt well again I'd do all the things I'd been putting off and stop taking life (Or the oppotunity to leave the house!) for granted.

I was on steroids for a long time and coming off them was hard but it's been a year since I took the last one and, with a change of diet, life isn't too bad.

I've started driving lessons, I'm making an effort to get out and see friends more. I even had my first badminton lesson last week! If you'd told me twelve months ago I'd be jumping around a badminton court I'd had laughed at you.

I do get tired as I still lose blood daily and avoiding fruit, veg and other fibre means that my diet isn't terribly healthy but you can't let it get you down. You just have to focus on the positives and take joy in the small things.

wannabestressfree · 16/10/2014 11:50

Crohns sufferer too :) just had 12th op and proud owner of 2 bags. I work full time and have three sons. I don't let the disease define who I am..... I refuse to admit defeat.

Queenoftheworld · 16/10/2014 21:36

"In Europe, 40% of the population have been diagnosed with a chronic condition by the age of 15"

I am sorry, but I can't credit that at all. What is the source of that claim?

I am sure that Mumsnet takes pride in the integrity and intelligence of its website. Can that claim be checked and corrected if necessary, please?

TheRightToShoes · 16/10/2014 21:36

Great message in this blog. I have recently been diagnosed (about a month ago) I am actually quite proud of how I have dealt with things so far but expect a bit of a why me melt down is due any day now ??

wannabestressfree · 16/10/2014 21:39

I agree Queen.

Lilybensmum1 · 16/10/2014 22:05

So much respect for everyone on here dealing with a life long condition, I'm a nurse and am married to a lovely DH who has uc so I see it from both sides which can be really hard at times but!! What it has taught me is people know their own bodies better than us health professionals.

You are all inspiring you have one life live it enjoy it and dont be defined or defeated by your health.

CarrieGrant · 17/10/2014 06:37

Queenoftheworld
I wrote this shocking detail. This figure is from The Economist Intelligence Unit Ltd from their 2012 report. The figure rises even more as we grow older. Given that 70-80% of European healthcare budget spent on chronic diseases it's a subject we need to be talking about in a healthcare system build around critical care.

CheeseEqualsHappiness · 17/10/2014 08:27

I suspect that is right. At least 40% of my friends and family have been diagnosed with something and my poor grandad just died of undisguised colitis and C. difficile. Nobody listened to him when he said his diarrhoea was black and full of mucus. He was referred to out patients despite bring on the loo 50 times a day.

He also had a neurological disorder which was never treated - 'we can't do anything for you' - and since his death and finally having a name for what he had, we have found treatments and therapies he could have had. Gutted

ZanyGran13 · 17/10/2014 15:18

My grand daughter nearly 13 has had bad digestive problems and lately found out she doesn't have Chrones but has been poorly with an ulcerated colon. I admire Carrie for her story and putting it out for all to see and letting everyone know how she has coped.

I have a chronic condition too and much later in life in my 50's found I had Sjogren's Syndrome so didn't have to cope as early as Carrie did. I have a faith in Jesus and that helps me tremendously when I have to go to see yet another specialist. I look after myself and the most important thing I've learned is to listen to my body. When I'm tired, I have to stop there and then, if it is possible. If I don't do that, I can be exhausted for several days, but if I stop and rest I'm fine again much more quickly.

I treasure each day and live it to the full. Some days are not as full as others, but a positive attitude to life and a sense of humour are my best assets.

glidingpig · 17/10/2014 22:03

I think it is 40% of the population aged over 15 has a chronic disease - not quite that 40% of us are diagnosed by the age of 15. The link states: "According to the European Chronic Disease Alliance, a coalition of medical professional organisations, over 100 million European citizens—or 40% of the population above the age of 15—have a chronic disease."

This is a great post, though.

Queenoftheworld · 18/10/2014 18:28

Many thanks for your response, Carrie.

Can I first say, hats off to you. I absolutely support what you are doing. As a woman in the STEM world (science, technology, engineering, maths) I am passionate about ensuring that we women are taken seriously. I am sure that you too would want to ensure that your campaign I based on robust and unassailable data.

I think glidingpig has it right, and I am so sorry, but I think the stat you quote has been misinterpreted.

CatherineJLackey · 18/10/2014 20:03

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

KateHMumsnet · 21/10/2014 11:24

Hi all,

Crohn's and Colitis UK is funding research into maternal IBD, and they're now looking for mothers to take part in the study.

If you are a mum with IBD with at least one birth child around the ages of 2 and 7 years old, they'd like to hear from you. You can read more about the study on this page here.

Oblomov · 21/10/2014 13:01

I agree with Op. no one knows what it is like, apart from you.
I have had a condition, my whole life and the effect us huge. no one appreciates this.

Zara16 · 22/10/2014 10:27

I was diagnosed when I was 8, had 12 inches of bowel removed at 13, been fed via a naso-gastric tube for 12 weeks once when I was 9 and once when I was 10, missed 3 years of school (8,9,10 and beginning 11)and had to move to a health unit school, and still managed to get 9 gcse's with 4 of them at a* and an a, crohns is such a horrible disease, I know that more than most. It took my childhood, my passions and my friends away from me, but I refused to let it beat me. I'm now 16 and just started college to go into paediatric nursing, crohns can't take everything from you if you don't let it.

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