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“I think people underestimate how complex CF can be”: Margot’s story
My name is Margot. I’m 21 years old and I love painting, outdoor adventures, science, and I am especially well known for my love of cats.
I’m in my third year at university studying Forensic Science, and I absolutely love every second of it. It’s so exciting, complex and always changing, and lots of people enjoy a plot-twister true crime story. I’ve always leant towards studying a science and I think partly this is because I spent a lot of time in hospitals and contributing to CF studies growing up.
The unpredictability of CF is the hardest part
I was born with meconium ileus and a terrible case of DIOS. At 24 hours old, I was whisked off to surgery and a DNA test diagnosed me with CF. My parents had no idea that they carried the CF carrier genes, and I was the first in our family to be born with CF. I was very poorly, but my parents tell me that after my long recovery I went back to being a very chatty and smiley baby.
I have been really lucky with my CF lungs. I had the occasional chest infection through my childhood, and now I rarely need IV antibiotics. It wasn’t until I turned 11 that I started to experience regular bouts of DIOS, which has always been my main struggle with CF.
My day-to-day life consists of loads of medication, rest, snack breaks and Creon for digestion. I like to do lots of activities in one day and I have to remind myself to slow down! I have around 30 tablets of Creon and 20 tablets for other treatments every day – this really surprises people!
I find that the unpredictability of CF is the hardest part of living with it. One day I could feel like running a marathon, the next day I’ll have to stay in bed. I often miss really important exams because I’ve had to be admitted to hospital, and DIOS especially has terrible timing!
I’m lucky to have a supportive family and as a result I can handle it much better than I would ever be able to without them. It can be tough missing weeks of your normal life when you’re in hospital, and I think I get huge FOMO when I see people my age going out and travelling.
I think people underestimate how complex CF can be, and how difficult it can make day to day life. Growing up I realised that on the outside, I looked healthy and this made it difficult for others to “see” the CF I was describing – especially when I was energetic and leaping around hockey pitches. If I could educate everybody in the UK in one go, I’d show them what both a good and bad day looks like in my life.
Margot
People underestimate how complex CF can be
I first started to experience DIOS at secondary school. There were no warnings, but I knew as soon as my tummy would rumble that it was beginning to come on. I would often have to leave school early to take my rescue medication and often this wouldn’t be enough, so I’d have to rush to hospital with my parents.
As I got older, I had to learn the signs my body would give me before DIOS would set in, no matter where I was – I’ve had to take emergency medications at concerts, school trips abroad, at birthday parties and more.
Unfortunately, my DIOS was much worse because I was born with a full malrotation of my intestines – they were all back to front. As a result, my intestine would keep twisting, and this was very dangerous and painful. I have had many emergencies and narrowly escaped surgery until this summer, and now my malrotation has been corrected by an incredibly experienced surgeon.
The hardest thing about DIOS for me (other than the terrible pain!) is the days you have to go without eating. Being tube fed and aspirated is so tough and it can really affect my positivity, but I always remind myself that it is a temporary treatment and I will be back to eating sweet treats soon.
I think people underestimate how complex CF can be, and how difficult it can make day to day life. Growing up I realised that on the outside, I looked healthy and this made it difficult for others to “see” the CF I was describing – especially when I was energetic and leaping around hockey pitches. If I could educate everybody in the UK in one go, I’d show them what both a good and bad day looks like in my life.
DIOS can be awkward and unpredictable at the best of times. It’s a good example of how CF affects other organs outside of the respiratory system. It can be far more complicated than a tummy ache, even though it may look like one at first. Lots goes on underneath the surface in somebody with cystic fibrosis – my stomach aches can be dangerous so it’s important to let somebody excuse themselves from work or parties when they are feeling unwell.
It takes guts to speak about GI symptoms
I think the hardest part about explaining DIOS is simply bringing up tummy issues. It carries a bit of stigma and embarrassment. Explaining why I need to emergency medication can be awkward and I don’t fit the expectation of somebody who relies on a lot of medication. In reality, GI issues are very common in adults and children without CF at any time, so I do wish there was more room to talk about it. We all poop at the end of the day!
I hope that research brings more attention to this side of the condition. I find that a lot of general doctors and nurses will know about the respiratory side of CF but be surprised to hear that it affects the stomach. Raising awareness might bring more funding to research that may lead to developments in DIOS care and treatments.
I think the general public’s knowledge is limited to the respiratory side of cystic fibrosis – when I tell people about my condition. A lot of people are surprised to hear that it affects my intestines and pancreas as much as my lungs (if not more!)
GI symptoms can be both simple and incredibly complicated, even for somebody who doesn’t have a stoma or any physical indication of GI symptoms. I hope more awareness leads to more patience and understanding, and less confused looks when I use disabled toilets
A life unlimited
A life unlimited for me means a life without fear. I think everybody deserves that! Being limited by a condition like CF is scary but knowing the support that all the healthcare professionals, Cystic Fibrosis Trust and the research gives brings a lot of reassurance to experience anything we want to, from trips around the world to exciting careers. That’s a life unlimited!
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If you have questions about GI symptoms, or any aspect of your CF, please get in touch with our friendly Helpline team. You can call them on 0300 373 1000 or 020 3795 2184, Monday–Friday 10am–4pm. Email [email protected], or message on WhatsApp at 07361 582053.
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