1. Crohn’s disease is an inflammatory disorder that affects your gut, or any part of the digestive system.
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“The most common sites for inflammation are the lower part of the small bowel and the large bowel,” gastroenterologist Professor Chris Probert says. “The inflammation leads to ulceration; the ulceration leads to pain and loss of function. That loss of function means the patient has diarrhoea and they may have malabsorption. If the inflammation is in the large bowel, if they have Crohn’s and colitis then they can bleed. So the inflamed bowel causes severe pain, diarrhoea (often with blood). Other symptoms can include extreme fatigue, and dramatic weight loss.”
2. Crohn’s is not the same as colitis, although both are types of IBD (inflammatory bowel disease). And neither are the same as IBS (irritable bowel syndrome).
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“There are a lot of similarities [between Crohn’s Disease and] colitis, but there are subtle differences. The genes overlap, but they’re not the same. There are different environmental factors. People who smoke are more likely to get Crohn’s disease, and people who are nonsmokers are more likely to get ulcerative colitis. But most children don’t smoke, and yet they get more Crohn’s disease than ulcerative colitis. So it’s not straightforward.
“As regards IBS, IBD and IBS are chalk and cheese. About 1 in 5 people have IBS – they will have bloating and diarrhoea and it’s unpleasant. This usually occurs in the context of stress and eating foods. But the bowel is not damaged. In Crohn’s disease, the symptoms are worse – they’re lifelong and it requires potent medication and surgery. IBS, don’t get me wrong, it can be really nasty. But it isn’t the same as IBD.” – Professor Chris Probert
3. There’s no one reason why someone gets Crohn’s disease.
“What causes Crohn’s disease is a combination of factors in one person at one time. There are more than 200 genes that if you have a combination of the wrong genes, mean you’re more likely to get Crohn’s disease, but you can have those genes without having Crohn’s disease.
“If you live a Western lifestyle – meaning you’re living in Europe, North America, or the affluent parts of Asia – then there’s something about the environment in those areas (it could be diet, it could be pollution). That plus the genes means that there’s a change in the natural bacteria living in the intestine.
“So if those three things misbehave, then you seem to get an immune response to something, and part of that something is bacteria, which damages the bowel and causes Crohn’s disease.” – Professor Chris Probert
4. Diagnosis takes time, and can be frustrating.
“My daughter Ellie was diagnosed with severe Crohn’s disease in September 2012 when she was 7 years old. She become unwell quite quickly, though the doctors and even the hospital dismissed it as a virus, followed by lingering virus. I knew there was more to it – this was not like anything I had seen before with a virus. She was going to the bathroom 12 times a day, and in the end I took her back to A&E. They sent her home within a couple of hours, but shortly after we arrived home she had collapsed.
“She was taken to a different hospital where they admitted her. She was then transferred to Alder Hey Children’s Hospital where she was taken into theatre for camera studies. The consultant told us she had severe Crohn’s disease – she had it in patches in different ares of her digestive system.
“Now, at the time she was diagnosed, I thought, Great, we know what we are dealing with, she will have a specialist feed for six weeks via NG [nasogastric] tube, where it will be the sole source of nutrition, and she will be okay.
“I didn’t know an awful lot about it. It was quite hard to adjust at first – I worried about her, how she was feeling. After all, she was the one in all the pain, she was the one suffering. I hurt from a parent’s perspective – I saw my beautiful little girl look so frail and vulnerable. Yet she smiled. She never complained.” – Donna Pugh
5. Crohn’s doesn’t just affect your tummy.
“You’d be surprised with the effect Crohn’s disease can have. For Ellie, it doesn’t just affect her digestive system, it’s her mouth, it’s her joints. The inflammation in her joints can make standing and walking excruciatingly painful – when it’s bad she can’t walk, she is in agony.
“It has caused skin issues. In some areas her skin splits and bleeds, and in other areas the cells in the skin have been attacked and she has lost the pigmentation there. She suffers with dry eyes, again caused by this disease. And people think it’s just a case of ‘having the runs’. The amount of times I have heard that… Blood and mucus is a symptom of this disease, of course, but it’s far from the only one. In fact, some sufferers even suffer with constipation. It’s not a one-size-fits-all disease. Every person is affected in different ways.” – Donna Pugh
6. Diagnosis is different for everyone.
“I was 14 years old when I first became ill, and was officially diagnosed shortly
after my 15th birthday. The process for me was similar to many others, long and painful. It was initially suspected that I was having postviral symptoms, as I had had the flu just as my symptoms began. Finally, after about four months of regular visits to my GP, a hospital stay, blood tests, a colonoscopy, and MRI scans confirmed that I had Crohn’s disease.” – Stephen Boyle
“I was diagnosed at 19, in early 2011. It all came about towards the end of 2010, I became very ill. I was constantly running to the bathroom, passing all sorts of fluids and losing a lot of weight. I remember calling my mum and telling her something wasn’t right with me. She called the hospital and after a month of tests it was clear what I had. I remember it pretty vividly – I was sitting at the adolescent clinic, and the consultant was drawing lots of little diagrams trying to explain what Crohn’s was. It’s quite funny thinking back to that moment actually. For me it was a relief that I knew what I had, and in my head it was the first step to getting myself better. Obviously it was a bit more difficult than that and after five years only now am I beginning to feel ‘normal’.” – Moeed Majeed
“I didn’t suffer long with Crohn’s like most people do; I had one massive flare-up
where for four weeks it just got worse and worse. Finally it got to the point just before Christmas this year when I was unable to eat and had the most crippling
diarrhoea for two weeks straight. I lost 20kg in that two weeks and the doctors
finally took my blood and admitted me to hospital. I had surgery as soon as I was admitted to hospital, to drain a fistula that had developed due to the Crohn’s. Then followed a week’s worth of MRI, CT scans, x-rays, colonoscopy, and gastroscopy before they finally diagnosed Crohn’s disease. The worst part was I was told in the same breath that the Crohn’s was that severe the consultant wanted to disconnect my large intestine and give me a stoma [a colostomy bag] right away. So six hours later, that’s what they did….” – Russell Newman
7. Everyday life requires a lot of planning.
“Having Crohn’s means that I feel tired every day – there’s never a day that I do not feel tired. I wake up feeling tired, spend all day feeling tired, and then go to bed feeling tired. The days that I do not feel tired are very few and far between.
“I’m often checking that I have enough medication for whatever is coming up in my life – have I got enough tablets to get through the weekend, have I put my repeat prescription into the GP surgery, when do I need to pick the prescription up, can I get to the pharmacy, etc.
“When planning something like a weekend away I have to think about whether I need to take extra days off work to recover or whether I can get some rest at some point. I also think carefully about the food I eat – is it a ‘problem’ food, is it too fatty, what else have I had during the week, have I got to think about a journey the next day or later that day.
“I often have to juggle foods from menus and frequently ask in restaurants, ‘Can I have it without…’ My husband laughs that I must have shares in toilet tissue as we always seem to be buying it in our weekly shop, and I have a minimum number of toilet rolls in the house just in case of a flare-up.” – Tania Clarke
8. Challenges come in unexpected ways.
“After being very ill and having three operations, my boyfriend surprised me with a holiday to Greece. I was super nervous to be abroad for the first time since my operations with my ostomy. Although I got many stares, dirty looks, fingers pointed and comments made about me.. I’m very proud of myself. It’s heartbreaking that my body doesn’t look the same as it once did and never will again but I embraced it. I’ve never let it stop me or change my life. I have the best boyfriend who supported me and helped me feel my best. Just because I look different, I shouldn’t be made to feel different. Be your own kind of beautiful.” 💜 Enjoy the rest of your holiday Heather 😎#crohnsdisease #ostomy #ostomate #getyourbellyout #Crohns #Colitis #IBD #stoma #crohnsandcolitisuk
9. Being far from a toilet comes with anxiety.
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“My work is mainly office-based and I’m never too far away from a toilet. It has been difficult for a while at work as the building has been undergoing refurbishment, so sometimes I’ve had to plan alternative toilets in case my route to the nearest loos is blocked by building works or they are closed.
“Just because I don’t look ill on a particular day it doesn’t mean that I don’t feel ill or won’t have struggled with having to visit the toilet several times that morning before even getting to work. We don’t have to look ill to need to use the disabled toilet.” – Tania Clarke