SYMPTOMS, DIAGNOSIS + LETTING GO OF DREAMS
I’m not usually one who particularly likes talking about myself or being the centre of attention, but I think it’s important to start this blog with my story. To start from the beginning. I was born in Melbourne in October 1979…… ok well not quite that far back! Fast forward around 30 years. Up until that point I’d had a pretty regular childhood and upbringing. I hadn’t even been in hospital before.
Then not long after my 30th birthday, the first symptoms appeared. I remember clearly the morning after a friend’s wedding in November of 2009, I went to the toilet and noticed blood in the toilet bowl. I didn’t think much of it at first, but it persisted for the next few days, so I thought I’d better go and see my GP. She didn’t seem overly concerned and told me to try taking some inner health plus for a few weeks to see if that helped. Several trips back to the GP and a few months later after a course of antibiotics and some stool samples, and she had referred me on to a specialist. Little did I know at that time what big a role this man would play in the next 4 years of my life!
I was diagnosed pretty quickly after that. After a colonoscopy and banding for suspected haemorrhoids, the symptoms still hadn’t abated, and within a few months I was told that I had Crohn’s disease. I had never heard of Crohn’s before and was really quite ignorant as to what it meant. I didn’t feel that bad, apart from the blood in my poo. Even the fact that it was chronic didn’t really register with me at first.
Life continued on. Not long before I was diagnosed, my partner Michael and I had decided we would finally make the big move to live and work in London for a few years. At first, this plan remained in place. We continued saving, I got my visa, and we even had our flights booked. My doctors told me my Crohn’s was only very mild and were quite positive that with treatment I would improve and we would be able to live out our dream of living in London.
For the first 12 months, things were manageable. The medications seemed to be helping and I was able to live a relatively normal life. Gradually though, my symptoms worsened. I started having sudden urges to go to the toilet that I couldn’t hold for longer than a minute or so, the blood and mucus increased, and I was losing weight at a rapid pace.
At first, some of the medications I tried did improve my symptoms, but this was always short lived. We remained hopeful right up until a few weeks before our planned departure date. I’d even resigned from my job and started packing. I think deep down I knew that our trip wouldn’t be going ahead, but I didn’t want to let go of our dream and let the disease win.
On the date of our intended departure (1st May 2011), instead of sitting excitedly on a plane awaiting a new life in London, I was at St George Private hospital having a colonoscopy. Days later I was admitted with the worst flare up I had experienced. After 2 weeks of IV steroids and antibiotics, I had improved significantly and was sent home, but was still nowhere near ready or able to think about travelling or leaving the safety of my family and doctors.
YEARS OF PAIN + STRUGGLE
After that first stint in hospital, I continued to go through flare after flare. There were always some better periods than others, but these were rare, and I never went into what I would call “remission”. I tried every medication available for Crohn’s from antibiotics, Salazopyrin and Salofalk, to Imuran, Methotrexate, Humira injections and Infliximab infusions. I even tried less common ones such as Naltrexone, which is primarily used in the management of alcohol and opioid dependence, but anything was worth a shot. I yo-yoed up and down from 1 to 50 mg of Prednisone, and continually had the puffy moon face, not to mention a newly grown moustache and incredibly irritable moods. After a while even the steroids stopped helping.
Even worse than the medications were the enemas that my partner Michael had to help administer on a nightly basis, and I struggled to hold in because the perianal inflammation was so severe. We tried several different types of enemas from steroid based ones to one that we had to mix ourselves called Tacrolimus. I was lucky if I managed to hold the liquid in for more than 5 or 10 minutes before it would come gushing back out along with bits of poo, blood and mucus all over the towel that I was laying on to protect the bed sheets. It was humiliating and one of the most unpleasant experiences of my life. We kept at it for months and months in the hope that eventually it would start working, but it was such a stressful ordeal, it sometimes felt like it wasn’t worth it.
Side effects were rampant. I had osteopaenia from the long-term steroid use which had to be treated with even more medication, incredibly achy joints, I even contracted oral thrush and shingles because my immune system was so suppressed. I had abscesses and fistulas which had to be curetted under anaesthetic every 4-6 weeks.
A few weeks after my first stint in hospital, I collapsed, and discovered I’d had a DVT in my leg which turned into a pulmonary embolism, which could very easily have killed me. Add more medication to the never ending list, this time for blood thinning. The pathologists could barely find a vein in my arm anymore for all the prodding. Going on and off other medication wreaked havoc with my INR levels which I had no end of difficulty trying to stabilise.
I tried everything. Apart from the western medicine, I saw a Chinese herbalist and acupuncturist. I saw a dietician and tried gluten free, the FODMAP diet and even a liquid diet for several weeks. I went to and later facilitated a support group for Crohn’s and Colitis Australia. I had second and third opinions from other gastros. I saw psychologists and a hypnotherapist, who were extremely helpful in teaching me coping mechanisms for my symptoms, but it seemed no matter what I tried, my Crohn’s just got worse. I lost almost 20kg in weight, was rushing to the bathroom in excess of 20 times a day, continuously felt like crap, and could barely hold down a part time job. It was a daily struggle to say the least. I was in and out of hospital with flare ups. Time and time again I was told – don’t worry, the next thing will work. It didn’t, but I remained positive. I wasn’t ready to give up!
After 2 years of this, my gastro and surgeon suggested a temporary loop ileostomy. This really felt like my last resort. It was hoped that resting my bowel might clear up the inflammation in my rectum and anus that the medication just couldn’t seem to budge. I was better for a little while, but after a few months, I started passing more and more blood. Even though the poo was being redirected, I was still having to rush to the toilet many times a day with urgent gushes of blood.
Throughout this whole time I tried to carry on and live a normal life. From the outside, it probably looked like I was, but the reality was quite different. I’d started working again, only 3 days a week and close to home, but it was a job and I was incredibly lucky with how supportive and understanding everyone was, especially with all my sick leave. Some days I would have to put a phone call on hold so I could rush to the bathroom. I tried to go out and do things with my friends, but I had to knock back many invitations, or I would say yes and then have to cancel at the last minute. On my days off I would need to spend the time resting and recuperating, or just curled up in a ball on the bed because I felt so sick. On the really bad days (which grew more and more frequent), it caused extreme anxiety to leave the house and not be close to a toilet for more than a few minutes. Car trips were a nightmare. I knew where all the public toilet facilities were between the city and the Central Coast where my sister lives. I tried to force myself to go out and not miss out on things. I hated not being able to go out and do the things I loved doing, and I felt terrible that I was holding Michael back from having fun and living a normal life too. I got out and about whenever I could, but some days it was just too hard.
There was more than one occasion during these last few years that I told myself my worldwide travels and overseas holidays had come to an end. How lucky was I to have experienced the ones I had already experienced. I really wasn’t sure I would get to the point that I would be able to travel comfortably again. I had actually 99% resigned myself to the fact that I wouldn’t be able to. Thank goodness for that 1% that still held hope!
Stay tuned for my next blog ….. the decision to have permanent surgery + the new me!