I have been ill for more than half my life – over 13 years,
to be precise. For a healthy person, that’s probably a bit hard to get your
head around. I often see people saying they feel as though they’ve been ill “forever”
when a virus won’t clear up after a week. Chronic illness is a whole different
ball game – you really do face being ill forever, unless a cure can one day be found.Unfortunately, I drew the short straw when bodies were
handed out and ended up with three chronic illnesses: Crohn’s Disease,
Hypermobility Syndrome and Polycystic Kidney Disease. Since today is World IBD
Day (IBD stands for Inflammatory Bowel Disease) I thought I would make a post about my experiences to help raise awareness of Crohn’s, which has probably had the biggest effect on my life out of the three.Put simply, Crohn’s Disease is where your immune system
attacks your digestive system. The cause is not yet fully understood; though
various theories are being studied, including genetics, an infection/virus or a
problem with the immune system itself. The resulting inflammation can occur
anywhere in the digestive system (though most commonly in the small and large intestines) and leaves lasting damage.
to be precise. For a healthy person, that’s probably a bit hard to get your
head around. I often see people saying they feel as though they’ve been ill “forever”
when a virus won’t clear up after a week. Chronic illness is a whole different
ball game – you really do face being ill forever, unless a cure can one day be found.Unfortunately, I drew the short straw when bodies were
handed out and ended up with three chronic illnesses: Crohn’s Disease,
Hypermobility Syndrome and Polycystic Kidney Disease. Since today is World IBD
Day (IBD stands for Inflammatory Bowel Disease) I thought I would make a post about my experiences to help raise awareness of Crohn’s, which has probably had the biggest effect on my life out of the three.Put simply, Crohn’s Disease is where your immune system
attacks your digestive system. The cause is not yet fully understood; though
various theories are being studied, including genetics, an infection/virus or a
problem with the immune system itself. The resulting inflammation can occur
anywhere in the digestive system (though most commonly in the small and large intestines) and leaves lasting damage.
One of the biggest problems with Crohn’s is that the
symptoms can vary massively from person to person and over different periods of
time. It tends to happen in “flare ups” before going back into remission again.
This means that it can be very difficult to correctly diagnose.In my case, it took many years. I was around 12/13 when I
first fell ill, and the children’s hospital were brilliant, thoroughly
investigating me with endoscopies and x-rays and everything in between. They even
tested for cancer and leukaemia, but couldn’t find anything conclusive besides
some mild inflammation. As I got older I was moved to the adult services, where
things became trickier. Presenting with stomach pain, fatigue and losing weight
as a teenager meant that I started to get questioned about pregnancy, eating
disorders and depression. My blood tests always showed raised inflammations and anaemia,
but with nothing else to go on I was eventually diagnosed with ME and IBS.Unfortunately, these diagnoses did even less to help my cause,
as doctors became reluctant to take me seriously. The treatments for ME helped somewhat
– things like gradual exercise and a strict routine did help me to manage my
fatigue – but those for IBS did little. I suffered severe pain, bleeding and a
lot of discomfort, and things were getting worse.The tipping point was when I suffered an intestinal blockage,
along with 7 fissures (cuts) and a fistula (a hole in the intestine). Even as an
author I don’t think I can do justice to describing the pain, though the
paramedic told me they’d heard a blockage was worse than contractions when
giving birth. I was first taken to A&E who couldn’t find the cause, then
later (when I was continually passing out and couldn’t eat or sleep or walk)
went to a GP who shouted at me and said there was nothing wrong and I was
overreacting. The next day I was unconscious and a visiting doctor called the
ambulance. I was taken to a different hospital for emergency surgery and nearly
didn’t make it, my heart rate going down to just 4 beats a minute.This awful episode prompted my doctors to investigate my
condition further, but once again my symptoms weren’t consistent and the
endoscopies didn’t find anything. One doctor said that he was convinced there
was something going wrong, but he didn’t know what, and he was pretty sure I
didn’t have Crohn’s. The following year, I suffered another bad flare up including
another intestinal blockage, and had to be hospitalised again.Exasperated, we sought out a new gastroenterologist. This
was where my luck changed (hooray!) and I found a really brilliant doctor.
After a long appointment, he decided to send me for an MRI scan of my
intestines. Finally, something showed up: I had a stricture (narrowing) in my
small intestine – something was damaging it. The endoscopies had never looked
at this area before, so I had another. I was back in hospital with an abscess
when the results came through and my previous doctor came to see me. He looked
at them and swore. “Did I say you didn’t have Crohn’s? Sorry…”
symptoms can vary massively from person to person and over different periods of
time. It tends to happen in “flare ups” before going back into remission again.
This means that it can be very difficult to correctly diagnose.In my case, it took many years. I was around 12/13 when I
first fell ill, and the children’s hospital were brilliant, thoroughly
investigating me with endoscopies and x-rays and everything in between. They even
tested for cancer and leukaemia, but couldn’t find anything conclusive besides
some mild inflammation. As I got older I was moved to the adult services, where
things became trickier. Presenting with stomach pain, fatigue and losing weight
as a teenager meant that I started to get questioned about pregnancy, eating
disorders and depression. My blood tests always showed raised inflammations and anaemia,
but with nothing else to go on I was eventually diagnosed with ME and IBS.Unfortunately, these diagnoses did even less to help my cause,
as doctors became reluctant to take me seriously. The treatments for ME helped somewhat
– things like gradual exercise and a strict routine did help me to manage my
fatigue – but those for IBS did little. I suffered severe pain, bleeding and a
lot of discomfort, and things were getting worse.The tipping point was when I suffered an intestinal blockage,
along with 7 fissures (cuts) and a fistula (a hole in the intestine). Even as an
author I don’t think I can do justice to describing the pain, though the
paramedic told me they’d heard a blockage was worse than contractions when
giving birth. I was first taken to A&E who couldn’t find the cause, then
later (when I was continually passing out and couldn’t eat or sleep or walk)
went to a GP who shouted at me and said there was nothing wrong and I was
overreacting. The next day I was unconscious and a visiting doctor called the
ambulance. I was taken to a different hospital for emergency surgery and nearly
didn’t make it, my heart rate going down to just 4 beats a minute.This awful episode prompted my doctors to investigate my
condition further, but once again my symptoms weren’t consistent and the
endoscopies didn’t find anything. One doctor said that he was convinced there
was something going wrong, but he didn’t know what, and he was pretty sure I
didn’t have Crohn’s. The following year, I suffered another bad flare up including
another intestinal blockage, and had to be hospitalised again.Exasperated, we sought out a new gastroenterologist. This
was where my luck changed (hooray!) and I found a really brilliant doctor.
After a long appointment, he decided to send me for an MRI scan of my
intestines. Finally, something showed up: I had a stricture (narrowing) in my
small intestine – something was damaging it. The endoscopies had never looked
at this area before, so I had another. I was back in hospital with an abscess
when the results came through and my previous doctor came to see me. He looked
at them and swore. “Did I say you didn’t have Crohn’s? Sorry…”
I cried when I was diagnosed. My poor mum thought I was
devastated. It was one of the best moments of my life.
Perhaps you might be thinking that from this point I’ve had
all the medication and treatment, and things must be much better now, right?
Well, to some extent that is true – and it’s certainly a thousand times better
to know what’s wrong with you, to have doctors that believe you and support
you, to have amazing specialist nurses that you can ring up when you need help.
But there is no cure for Crohn’s. And the medicines are very much trial and
error, with an emphasis on the error on my part.Most Crohn’s medications are immune suppressants, aiming to
reduce your immune system to prevent it damaging you. I’m on 2 of these at the
moment, Azathioprine (which has the rubbish side effect of making you
susceptible to skin cancer which is why I am in a permanent gothic-ly pale
state) and Humira (an injection my husband does for me). They didn’t manage to
prevent my latest flare up, so I’m currently taking steroids as well to beat it
back. Reducing your immune system is of course not a great idea either; it
means I have to be incredibly careful about hygiene and avoid anyone with
viruses, because I wouldn’t be able to fight things off. Last year it gave me
Shingles.The last resort is surgery. I’m relatively lucky amongst
people with Crohn’s in that the only part of me I’ve been forced to have
removed is the section of my small intestine that had the stricture. It was the
worst experience of my life, and I really, really
hope I never have to go through it again. On the plus side, it has prevented
the worst of my pain and any further blockages. But it also (apparently a
common side effect but typically nobody warned me) made me lactose intolerant. Which as a
vegetarian who ate mostly dairy caused me a lot further pain and discomfort
before I figured it out.Right now, I feel hopeful. I’m back for another huge round
of tests in the next few months to figure out the state of my Crohn’s right
now, whether the medicines are doing enough to hold it back and if I have
anything else that’s causing symptoms. There’s a new infusion drug, Vedolizumab,
that I can try. If none of this helps, I’ll be sent to a Crohn’s specialist.
all the medication and treatment, and things must be much better now, right?
Well, to some extent that is true – and it’s certainly a thousand times better
to know what’s wrong with you, to have doctors that believe you and support
you, to have amazing specialist nurses that you can ring up when you need help.
But there is no cure for Crohn’s. And the medicines are very much trial and
error, with an emphasis on the error on my part.Most Crohn’s medications are immune suppressants, aiming to
reduce your immune system to prevent it damaging you. I’m on 2 of these at the
moment, Azathioprine (which has the rubbish side effect of making you
susceptible to skin cancer which is why I am in a permanent gothic-ly pale
state) and Humira (an injection my husband does for me). They didn’t manage to
prevent my latest flare up, so I’m currently taking steroids as well to beat it
back. Reducing your immune system is of course not a great idea either; it
means I have to be incredibly careful about hygiene and avoid anyone with
viruses, because I wouldn’t be able to fight things off. Last year it gave me
Shingles.The last resort is surgery. I’m relatively lucky amongst
people with Crohn’s in that the only part of me I’ve been forced to have
removed is the section of my small intestine that had the stricture. It was the
worst experience of my life, and I really, really
hope I never have to go through it again. On the plus side, it has prevented
the worst of my pain and any further blockages. But it also (apparently a
common side effect but typically nobody warned me) made me lactose intolerant. Which as a
vegetarian who ate mostly dairy caused me a lot further pain and discomfort
before I figured it out.Right now, I feel hopeful. I’m back for another huge round
of tests in the next few months to figure out the state of my Crohn’s right
now, whether the medicines are doing enough to hold it back and if I have
anything else that’s causing symptoms. There’s a new infusion drug, Vedolizumab,
that I can try. If none of this helps, I’ll be sent to a Crohn’s specialist.
There are, amazingly, silver linings. Having Crohn’s meant
that I couldn’t pursue my “sensible” career option of teaching, so instead I
threw myself headlong into my dream of writing a novel. If that hadn’t
happened, I wouldn’t have the writing career I have today, and Scarlet and Ivy might never have existed. It’s also helped me to
find some of my best friends, many of whom suffer from chronic illness and are
truly fantastic people.So what can you do to help people with Crohn’s? You can help by
fundraising or donating to IBD charities or by helping us campaign for research
into a cure. You can share posts like this one and help to raise awareness. You
can wear purple for World IBD Day. You can make your voice be heard against
cuts to hospital and disability services. But most importantly: look out for
us, listen to us, and remember what we’re going though. Hugs are very much
appreciated.
that I couldn’t pursue my “sensible” career option of teaching, so instead I
threw myself headlong into my dream of writing a novel. If that hadn’t
happened, I wouldn’t have the writing career I have today, and Scarlet and Ivy might never have existed. It’s also helped me to
find some of my best friends, many of whom suffer from chronic illness and are
truly fantastic people.So what can you do to help people with Crohn’s? You can help by
fundraising or donating to IBD charities or by helping us campaign for research
into a cure. You can share posts like this one and help to raise awareness. You
can wear purple for World IBD Day. You can make your voice be heard against
cuts to hospital and disability services. But most importantly: look out for
us, listen to us, and remember what we’re going though. Hugs are very much
appreciated.
This article was originally published on my old blog, on May 19th 2016.
Sophie Cleverly 