Living with crohns disease

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Spotlight reporter Lois Barker shares her story among others about their struggles with irritable bowel disease.

At the age of seven you don’t expect to find yourself in hospital, as a child you are invincible.

For me, not so much. Spending six hours in London with a camera inside me was strange but that was the day I got the news that I had crohns disease. According to diagnoses happen in-between the ages of 10 and 40. Lucky me. Crohns disease is a lifelong illness that causes severe abdominal pain, inflammation, stomach ulcers, diarrhoea and chronic fatigue. As pleasant as that sounds, crohns isn’t curable but can be treated.

I was seen at The Royal London Hospital; the gastroenterology team saw that I was suffering and prescribed me on sulfasalazine. I remember at first it was a liquid dose and it stained my blue bedroom carpet. Sulfasalazine caused a few problems, I was losing a lot of weight as it supressed my need to eat and I was extremely tired. Shortly after being diagnosed with crohns, I developed arthritis, which meant my joints would swell and be in extreme pain for hours, sometimes days.

It is hard a lot of the time. As an adult, I will need to have my day planned out in order to know where toilets are at all times and how to quickly access them. Just coming out of a flare up now, I’m still in pain when I eat and have gone from 74kg to 60kg in just a matter of days.

A lot of people who suffer from crohns have a rocky relationship with food, some try diets such as gluten-free or even vegan. Lois Mills, blogger and YouTuber stated her relationship with food drastically changed, “I knew from my early diagnosis that dairy and meat were real triggers for me, so it made sense to remove them from my diet as much as possible.”

The Gut Instinct blogger, diagnosed in 2015, had a real career change. Owning her clothes shop business, her symptoms got progressively worse it meant she couldn’t run it alone. “Crohns then seemed to affect everything I do- not being able to go out and enjoy myself properly- always needing to be near a toilet, always remembering to take my medication, not sleeping because I was either in so much pain or suffering such severe insomnia from steroids.” Her YouTube channel Gut Instinct was used to create a relatable platform to talk about the disease very openly and evolve her life so it wasn’t “just living with IBD.”

Lois Mills, Gut Instinct blogger and Youtuber

YouTuber, Thaila Skye recalls her diagnosis from 2009, “I started my channel talking about everything, and then soon more and more people reached out and this little community formed. Now, with how social media has boomed, there’s a huge community and it’s a great support network.” Thaila believes that support systems are very important, as her journey has been very intense, “I had been suffering with the symptoms- for most of my teens and early twenties. It got more severe in my twenties due to stress (that was my trigger) and then my colon perforated, so that resulted in sepsis, then septic shock and then ostomy surgery.”

Youtuber Thaila Skye.

Around 115,000 people in the UK suffer from this illness and a lot of these people feel isolated because of the effects it has on them. Mental health can be a big component of crohns. It’s hard to talk about with friends from fear of being laughed at or judged. At the age of 19 it is still very odd to talk about as it isn’t very pleasant. I can’t glamourize it or try to make it sound easy because it isn’t. Now as I’m older, I feel I have opened up a lot more to people and I’m not embarrassed anymore.

In December 2018 I started a new medication called adalimumab, a man-made biological treatment for crohns and arthritis. I have been struggling a lot over the past year so it felt good to receive a new treatment. I met with my IBD nurse at The Royal London to be trained on how to administrate the dosage. Nurse Natasha Burges (Tish for short) stated, “With the old device, I think it was probably easier to sometimes not get it in. I have a feeling with this it might be harder to screw it up as I say you’re my first patient on the new one so it’s a first.”

“Previously with the old one we used to have to press a button at the top, there’s no button to press on this one, so basically as soon as I push it down on your leg, it’s going to go in and I’m going to count to ten and then it’s all going to be done.”

But this medication of course has its side effects. “One thing to say as well is with this medication -it supresses your immune system, if you are unwell in any other way, like you had the flu, tonsillitis or an infection- not feeling well, you would need to delay that dose.”

The side effects include, a higher risk of getting lymphoma, skin cancer and bloating pains.

Despite the checklists I have to follow every day on top of the 26 tablets I take a day, I lead a normal life, I go to college, I have a part time job and I try to stay as active as possible. Some days are harder than others but I make it through each and every day by doing the things I love.

The future looks bright for many other people who suffer as more man-made treatments are being used, Tofacitinib is a new oral therapy drug being prescribed to patients and will be less likely to stop working overtime. Research has made staggering improvements as £5.2 million has been spent overall on over 80 ground breaking studies since 2008.

Change is happening and people are aware of it more than ever. I’m staying optimistic and who knows, maybe one day there could even be a cure. I’m holding onto that thought.

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