Living With Crohn’s Disease

By the time I had been diagnosed with Crohn’s at 19, I’d already lost several stones in weight and was a size 6, an unnatural shape for me.  My diet over the previous six months had consisted, on the better days, of half a piece of toast, one slice of billy ham (that stuff with the scary bear face on it) and a miniature bag of Haribo.  On my worst days I’d eat nothing.
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There were days before the diagnosis when I was convinced I was dying.  The darker thoughts were dominated by being found by my husband collapsed on the floor – a sign of how weak I’d become and the state of my mental health as a result.
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Doctors had worked through the possibility of it being food poisoning, then gastroenteritis, and even an ectopic pregnancy.  Finally when I developed a huge abscess they started doing tests for Crohn’s Disease.  At that time Crohn’s was still pretty rare, nowadays most people know someone with the disease.
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The abscesses were frequent and in delicate areas. One was so large they worried I would need to have an operation which would result in a colostomy bag. At 19 this was a pretty scary thought.  Not the worst thing that can happen to someone by any means, but still a daunting prospect.  Thankfully with some skilled work by surgeons and great aftercare from nurses the worst case scenario was avoided.  I started on medication and recovered enough to get back to work, but it wasn’t a full recovery.  I struggled with sickness and diarrhoea, and recurring abscesses (requiring surgery and time off work).
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A highlight at that time was being 21 and not having to diet for my wedding, my photos show a young lady at a petite size 8.  They don’t show the inner torment though.  I tried my best to keep a lid on things and stay positive.  I had started a new job, but after another hospital stay I was made redundant from that job after just three months (the illness not something they wanted to deal with).  It was done in a very underhand way.  The recruitment agency who had placed me in the job took me out for lunch to apologise for the poor treatment by the employer.  It was a turning point for me.  I knew that I would always face these challenges, and I’d need to take control of my own life if I was to get on in life.
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At 21 I had some difficult decisions to make, one of which was whether to try for a baby much earlier than planned in case I couldn’t have any in the future, the other was how I planned to support myself.  I never wanted to be in the position where I was reliant on someone else ever again.
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My husband and I had already been together for 5 years and decided to try for the baby.  I fell pregnant and the Crohns was practically non existent, it’s the most well I’ve been, right up until the last week when I developed pre-eclampsia and spent the last week in hospital and a short spell in intensive care.  I had to have a caesarian (pushing in that area wasn’t a good idea for me) and I wasn’t allowed to breastfeed because of the strength of drugs I was on.  That was all fine though, I had my baby and I was happy.
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In many ways maternity leave was the turning point for me.  For the first time I had space and time to really reflect.  The six years prior to being diagnosed had been spent being involved in a very stressful court case.  As the victim, personal information was ‘out there’ and there were various circumstances where my privacy was necessarily invaded.  At 13 it was difficult to cope with.  I suffered from hair loss, depression, and discolouration of the skin.  I was emotional at times, withdrawn at others.  I’d never really connected the Crohn’s to this period in my life before, but it started to look to me like the two were very much connected.
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A few years later I had a big flare up again, I was put on very expensive (£24k per year) medication which needed to be injected weekly.  I was uncomfortable with it.  My family and friends had noticed my erratic changes of mood and I didn’t feel myself.  I wanted to be off the drugs.  I wanted to be normal.  I was fed up. I’d already made some lifestyle changes to help me manage the Crohn’s.
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I’d moved out of the city to the countryside for a slower pace of life.  I’d never returned to work, instead I’d started blogging and found ways to make money from it.  I was still anxious though, still a worrier, and I felt that while the Crohn’s damage was a result of the initial trauma as a teenager, that the anxiety was keeping me ill.  Instead of ignoring the trauma, I started to deal with it bit by bit.  I went through a process of forgiveness. I also gave up caffeine, dairy, and gluten for a while.  I retrained my slightly OCD brain to be less OCD and to be more in the moment.  I had treatments like KCR, Reiki, and reflexology.  I stopped making lists, stopped stressing, and brought closure to a lot of unfinished business.
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Basically I dealt with all the baggage.  Rather than ignoring it and pretending it didn’t exist, I looked at it head on.  It was painful, but less painful than dealing with Crohn’s symptoms.  Slowly the worrying began to melt away, and with it the overthinking.  My new normal state of being was calm instead of anxious.  I read a lot – books like Body Calm and Mind Calm, the Sedona Method, and many others.  I also tried to mediate, with mixed success!
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I did a deal with my doctor – give me 6 months off the drugs to try and heal myself.  At the end of the six months I’d have a scan.  If the scan showed more damage I promised I’d go back on them.  If the scan was clear, he’d sign me off medication.
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With every step I took, I felt better and better.  My symptoms were getting less.  I even began to reintroduce some gluten and dairy with no negative effects.
I went for the scan and nervously awaited the results.
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No further damage.
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For the first time in fifteen years, and with my doctors full support, he signed me off any medication.
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Last year I did another deal (I like a deal!), this time it involved another scan – if it was clear I wanted to be out of the system altogether – no more check ups, perhaps they’d give me a phone occasionally to check in.  I’d basically be removing myself as a burden to the NHS (I can always go back if I need it).
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For the second time, the scan showed no further damage.  I was elated.  For the first time in my life I felt in control of my health and wellbeing.  I was looking after myself and healing, and it felt good.
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That was nearly a year ago now, and I still feel great. My whole family has benefited from my better health and I feel like I’m going from strength to strength. The only downside is I’m a size 14 and having to start watching my weight!  I can deal with that..
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This isn’t a story about the how the medical profession failed me, quite the opposite, I’ll never be able to thank the staff at the Western General enough for the care and patience they showed me.  It’s a story about understanding your own body and your own ability to heal yourself.  I’m a big believer that everything you need is inside you and we have forgotten our own power and ability to heal ourselves – I look at medication as a support now rather than the solution – always looking to myself for the solution first.  It’s been a humbling experience that has taught me so much, and I’m sure has much more to teach me in the future.
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Erica, LifeHeal Coach x

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