To Hell and Back...again and again.
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About this ebook
I had been writing lyrics and music for decades so when I fell sick with Crohns disease, I kept diary notes and video blogs, mainly for my own therapy, but also to share with my friends and family. This is my experience on how I survived a horrid disease with way too many operations and procedures.
I don't want sympathy just the understanding that people can live in physical pain every day and no one knows or could even guess what that actually means.
Health is no.1.
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To Hell and Back...again and again. - Emma Kilpatrick
To Hell and back again, and again
By Emma Kilpatrick
Thank you!
I would to thank the staff at St Vincent’s Private Hospital and my gastroenterologist Bill Connell and surgeon Michael Johnston. They both took care of me for over 10 years and together they saved my life.
Foreword
Thursday, 3 September 2020
I have been writing lyrics and music for decades, so when I fell sick, I kept diary notes and later on video blogs, mainly for my own therapy. By sharing these video blogs, my friends and my family in New Zealand were kept updated. I also used them to help other ‘Crohnies’ understand that they are not alone and connected with fellow warriors through my Crohns Facebook page.
You can join this page via https://www.facebook.com/CrohnsnMe
This is my experience. It’s raw and I don’t hold back on detail. It’s now been 6 years since my last operation and I am still reduced to tears when I read this. There were days I did not want to live. There were weeks, even months, I could not walk or simply sit without being in chronic pain. There is no bright side to living in chronic pain, the only thing I could do was keep fighting it for over a decade.
My surgeon saved my life when nothing else worked. I have a permanent stoma and I am proud to be an ostomate. I wasn’t aiming to be a swimwear model anyway and don’t give a fuck what other people think.
If reading and watching my experience helps just one person get through their hell, then sharing my experience is worth it. We all deserve good health. Without it, we don’t have much; can’t work, can’t earn money to pay the bills or fully enjoy life.
Crohns? What’s That?
August 2006
Last year I had bouts of diarrhoea and suffered with gastroenteritis in December. I went to two doctors and at the time, one of them suggested I had Irritable Bowel Syndrome (IBS).
In February this year, I suffered another few days of severe gastro with vomiting and diarrhoea, so I saw a different doctor who questioned this IBS diagnosis and arranged to get some tests done.
After blood tests, an ultrasound and CAT scan, I was told I could possibly suffer from Crohns disease. Crohns? What is that? I had never heard of it and did not know exactly what this disease was. IBS is often mistakenly diagnosed as the Crohns symptoms are similar, yet without the proper diagnosis or treatment Crohns can become severe, sometimes fatal. Even then, sometimes the disease spirals out of control no matter what.
I was referred to a gastroenterologist and underwent the dreaded colonoscopy in April. For those who have never had one, you are lucky - it’s not the nicest experience and the prep drink prior is hideous. It can take a few hours for the drink to take effect but when it does, Christ, your bowel erupts and does not stop - even when it’s empty. I ended up at the hospital the next morning, weak and with a sore butt. Thankfully they do give a light anaesthetic so the actual scope is not memorable.
Over the next few years I lost count of how many colonoscopies and other scopes I had. During my worst health, sometimes once a month.
So, it was after this first colonoscopy I was diagnosed with Crohns Disease in my ileum, which is part of the small bowel. I started on a course of Mesasal with a prescription of steroids to reduce the inflammation.
By this stage I was in a lot of constant pain. I couldn’t even eat soup some days without a reaction and diarrhoea was a daily occurrence. There was a hard mass to the right in my abdomen and I remember, at times, being at my work desk doubled over in pain.
The medication helped initially and for the first time in many months I didn’t suffer with any kind of gut upset. However, about 6 weeks on I finished the steroids and was sicker than ever. I felt like I was back to square one and saw my gastroenterologist again. He was puzzled at this point but suggested a stronger medicine, Imuran, which is an immunosuppressant. I would have to have blood tests every two weeks as this drug affects white cells and can lead to dangerous side effects, including causing cancer in some cases.
Again, I felt like I was improving but within a month I had a vomiting spell. I couldn’t even keep water down. Then on Tuesday August 2nd I awoke in the middle of the night with severe pain in my gut and called my specialist first thing in the morning.
He admitted me to St Vincent’s Private Hospital in Melbourne that afternoon. I had to fast so they could do an MRI scan, which is like a 3D picture, to confirm if I needed surgery.
I waited all day Wednesday to get scheduled in for my scan and was told later that night that first thing in the morning I would have my scan and would then be in the operating theatre at around 9.30am.
I was so scared that night I only had 2 hours sleep. I started to realise how horrible this disease was. There was a cyst in my ileum, where my small bowel and large bowel met, and it had grown through the intestine to the other side which caused a narrowing of my bowel passage. No wonder I hadn’t been able to go to the toilet properly in months. I was constantly tired and couldn’t eat. Some days two-minute noodles were all I could manage for breakfast and lunch or a ham and cheese croissant. Neither are good for preventing a Crohn’s flare.
I was a complaints manager for a telecommunications company at the time, so the nature of my job was pretty intense and we were subjected to a lot of abuse by wanker customers. I was finding I couldn’t cope with work very easily and was having sick days nearly every week.
I remember one of the managers driving me home one afternoon as I was doubled over in pain, I couldn’t get a cab.
Thursday 4th August 2005
In the morning I had to drink two litres of water before my MRI scan, then I was wheeled into theatre at 10.30am. I was so upset that one of the resident doctors had to sit with me in my room to calm me down. I didn’t know what to think or what was going to happen. I had keyhole surgery back in 1997 to remove my gall bladder, but this operation was major organ surgery! I’d never been in hospital like this before. Thank goodness I had health insurance!! The surgeon had discussed with me what he was going to do and said I’d need a week in hospital.
All I remember is coming to with a few heads in my face repeating my name. At first I thought I heard ‘Party. Party. Party’ but as I came to it was ‘Emma. Emma. Emma’. It wasn’t a party! I suddenly felt the most intense pain in my stomach and started to cry. I was given a self-administered morphine drip which I grew to love very quickly.
My boyfriend was in my room just after the operation, and I was quite groggy that night, goodness knows what I blabbed to him. We had moved in together in April, just as I was diagnosed with Crohns.
My mum flew in from New Zealand on the Friday and as soon as I saw her, we