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16 Things Only People With Crohn’s Disease Know

10. It becomes natural to hide symptoms.

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.

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.

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.

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.

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.

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.

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

Thanks to Crohn’s & Colitis UK for their help with this piece.

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