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16 Things Only People With Crohn's Disease Know

"Most days I feel like I've been hit by a train."

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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.

Lee Regis

"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.

Donna Pugh

"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.

Donna Pugh

"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.

Moeed Majeed

"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.

Tania Clarke

"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.

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"One difficult thing has been that when friends invite me over for the weekend I'm not always comfortable with staying over due to my Crohn's. I often need to get up to go to the toilet during the night and I'm conscious of waking them.

"It can also be difficult at breakfast time as they may not have the food I can eat, and it can be awkward to keep going to the loo whilst everyone is having breakfast." – Tania Clarke

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

10. It becomes natural to hide symptoms.

Stephen Boyle

"I, like many other Crohn’s sufferers, would often mask symptoms and display a poker face. I can’t count the amount of times I have been sitting in a lecture, at the pub with friends, or behind a till at work, in excruciating pain, all the while biting my lip and smiling through until the cramps and stabbing sensations in my abdomen pass." – Stephen Boyle

11. Treatment can sometimes leave you feeling worse.

Donna Pugh

"After the initial treatment had ended, Ellie looked healthier, was weaned back on to solid foods, and was enjoying being a kid. But within weeks she became unwell again. This time she was started on a course of steroids at a high dose. How do you convince a young girl she is beautiful when all she sees is a puffy steroid face? The drug, though it quickly dampened her symptoms, affected her in ways I can't even describe.

"She gained weight, but as is common with this medication, her face went huge. It was a drastic, rapid change. We would tell her all the time, 'You are a beautiful little girl, when the medication is finished you'll be okay, don't worry.' One evening we went for a family meal to a Greek restaurant. Suddenly she burst into tears, and the owner asked her what was wrong. We had no idea why she had broke down as she had, and then she said, 'It's the mirror on the wall, that's not me, I can't look at it'. She was distraught, and I instantly felt heavy-hearted." – Donna Pugh

12. Surgery is a positive option for many people.

Moeed Majeed

"Well, since I've had a stoma I've been quite lucky that I've been able to rebuild my life pretty successfully. However, before my surgery it was a different story. I recall after being diagnosed going through a period of dissolution as I came to terms with my condition. Then came the drastic weight loss, fatigue, loss of appetite, and frequent dashes to the bathroom.

"Everything pretty much spiralled out of control. I ended up having to leave university in an attempt to get better – it was a pretty stagnant few years. I became very isolated and conscious about going out and this had a huge impact on my social life. I distanced myself from my friends and went through a period where I was really questioning everything.

"The hardest thing to have to deal with was probably the change in diet. I became intolerant to a vast amount of food and would get terrible cramps and pains if I ate something that didn't agree with me. Just an example of things I had to avoid:

– Wheat

– Gluten

– Red meat

– Fried food

– Fibrous vegetables

– Citrus fruits

– Sweets

– Fizzy drinks

– Food high in fibre

"Imagine being 19 and not being able to eat fried chicken or pizza... Horrible, lol.

"As I mentioned before, having a stoma now has changed my life for the better. I'm in complete control of what I can eat, going out too much, haha, and just enjoying myself. Making up for lost time." – Moeed Majeed

13. Support from friends and family is crucial.

Stephen Boyle

"I can honestly say I have some of the most amazingly supportive family and circle of friends. From providing a listening ear to helping me take my mind off things when I have been ill, they have been a consistent source of comfort for me since day one. We all have a sense of humour about the illness and often make toilet jokes, etc. I find this vital in maintaining a positive attitude and outlook to the future as it eases any emotional distress by poking fun at that which you cannot change. This is how my friends and family help the most, as I believe it’s a healthier approach than if they were always serious about the subject or avoided addressing it." – Stephen Doyle

14. The psychological impact is huge.

Steven Sharp

"I wish people understood the psychological aspects of the condition as it can really put you on an emotional rollercoaster. At times it really does take a big effort to keep positive and continue to smile your way through tough times, something I try to do all the time, but sometimes it's just a smile for show when really all you need is someone to understand all the ins and outs." – Steven Sharp

"I am pretty lucky compared to other sufferers. I have a mild case and so far haven't needed any surgery, but please don't let that fact fool you into thinking that I do not suffer. I have had numerous hospital stays and been in A&E countless times due to the debilitating symptoms. Day-to-day for me is pretty controlled. I maintain my symptoms with medication but it still doesn't take away the fatigue. Most days I feel like I've been hit by a train. Most people when tired have a nap and feel fine. When I feel tired I nap and wake up feeling worse. That's how bad the fatigue is. Other times I could feel OK and have bags full of energy. Each day is different, but I am better off than most." – Lee Regis

15. Living with Crohn's requires a huge amount of mental strength.

Russell Newman

"The main misconception I find with Crohn's is that people with Crohn's think a stoma is the worst-case scenario, when in fact it gives you a whole new quality of life. The great thing about the stoma is I no longer feel any of the symptoms of Crohn's day-to-day. It took a few months for the cramps to stop and the pain from the surgery to subside, but now I’m back fitter and healthier (if that’s possible) than I was before I was ill. Thanks to the stoma, I can eat what I want and go about life as I did before the Crohn's.

"I don’t know if I feel better because of the determination I found after waking up from surgery and seeing the disgusting state the disease had left my body in making me want I take back what I had lost. I took photos every day for four months and forced myself to look at them all when I had the days I was tired and didn’t feel like going to the gym.

"People say to me I look like I find it easy. It’s not easy at all, everyone has bad days, but we need to pick ourselves up, give yourself a shake, and say 'come on',

because we won’t always have someone there to do that for us." – Russell Newman

16. But life goes on.

Lee Regis

"A typical day? Pretty much the same as anyone else. I don't let my disease rule me, I rule the disease. I get up, wash, get dressed, and go to work every day. I even work a second job. Some people are too ill to work, full stop, but as I've previously said I am slightly better off as my case is mild. I work two jobs because I have to, but if I let my Crohn's win I wouldn't be able to. I may suffer with pains in my belly, use the toilet over 15 times a day, fill the toilet with blood and mucus, and get hit with a wave of fatigue. I still need to get up and carry on, so that's what I do." – Lee Regis

"I get up at half 6 (maybe 7 if I hit snooze to many times), grab a shower, change my bag, and have some breakfast before heading into work. Work until half 11 and get to the gym, train until around 13:00, before grabbing a shower and back to work. Work finishes at 5 and I go back home and chill out. Most nights I meet up with one or two mates and we have some food. If it’s a Thursday night we tend to pop out to a bar for a couple of drinks before the weekend starts." – Russell Newman

CORRECTION

Crohn's disease is a type of inflammatory bowel disease. Due to a typo, a previous version of this article said it was a type of irritable bowel disease.

Ailbhe Malone is the UK lifestyle editor for BuzzFeed and is based in London.

Contact Ailbhe Malone at ailbhe.malone@buzzfeed.com.

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