Updated: Apr 30, 2019
In the last six months I have hardly been able to write or put any energy into this blog because I became terribly unwell with Crohn's Disease, an illness I have had for 20 years. Apart from excruciating pain and saturating night sweats, the fatigue I suffered was totally debilitating. I had never imagined that I would be so sick that I couldn't fire up my laptop and write, but that's exactly what happened. Some days, I would be so unwell I literally lay down all day and was only able to manage the basics like getting a drink of water. Hanging out the washing was like climbing Mt Everest and as my health declined, weight rapidly fell off me too. In just over 12 months I went from 69 kg to 54 kg without trying.
I visited the doctor many times, changed doctors as well and with the same result; putting me on steroids or sending me to the ER. Each time I went to the doctor I complained about a terrible pain in my right hip, I knew it wasn't Crohn's pain as if I stretched my leg it would hurt. It was so painful when I drove my car I had to use my right arm to help lift my right leg onto the brake or accelerator and still no one listened. Even the three times I was sent home from the ER no one would listen to me complain about this pain. What I didn't know was that something very nasty was brewing inside me and this pain was a serious problem. Once, one of the doctors in the hospital told me "The Emergency Department is not the place for Crohn's patients" so as you can imagine I felt alone and scared.
Finally my doctor sent me for a CT scan which showed a 4 cm mass on my Cecum consisting of Crohn's inflammation. After that he quickly got me into a surgeon who then admitted me to hospital for 4 days of intravenous antibiotics and then to be followed by a colonoscopy about three weeks later. The colonoscopy confirmed the mass and inflammation but it took three more weeks to get a follow up appointment with my surgeon.
At the follow up visit my surgeon then arranged for an urgent appointment for me to see a gastroenterologist. The gastroenterologist wanted to put me back on steroids and 6-MP, two drugs I refused to take. Yes, I get it people will look at me and go 'well you wouldn't take the meds'. The meds will never cure me and the side effects are dreadful so no, I won't take medicine that might cause me to get more serious diseases. So I continued to suffer and hoped it would all go away.
A few weeks ago I decided I had to go to the hospital out of desperation and try one more time to see if they could investigate the cause of my pain and this time I was not going to mention the word "Crohn's" when I went to triage. However when I arrived limping, crying and grey in the face it did not take the nurse long to see I was in serious trouble. I never mentioned Crohn's and I never really had to because the nurse was certain it was appendicitis. I just agreed with her and before I knew it I was in a bed in the emergency with pain killers, tests and the doctors finally listening to me.
The blood tests revealed my inflammation marker was through the roof so they sent me for another CT scan which showed I had an abcess and that had to be drained! I arrived at the ER at 8.30 am and by 4.00 pm I was admitted to the ward to have a procedure the next day to drain the abscess. I was terrified but relieved, not only because of the Endone they gave me to take away the pain, but finally I knew what was causing my pain. I didn't know the worst of it though just then.
The next morning the surgical team came to see me and this time they brought one of the senior surgeons, Dr Ghaly. Dr Ghaly asked me a few questions and then told me I was having an operation that day! The tears flowed from me because I was terrified. The first question I asked was would I need a bag? To my relief, Dr Ghaly said no. Two hours later I was in the operating theatre. I believe this man saved my life and I'll be eternally grateful for his care and skills. I also believe there was some sort of Divine intervention because he wasn’t supposed to be at the hospital and the other doctors were not keen on dealing with me because of my history of refusing to take Prednisone and other drugs with nasty side effects.
After my two hour operation I woke up stressed, nauseous and in terrible pain in the recovery ward but my nurse quickly got all that sorted. I was on a self-medicating drip of Fentanyl which is a very powerful painkiller and became my best friend for the next two days.
My operation was a right hemicolectomy so I lost my ascending colon, cecum and appendix. They also drained and removed the abcess. The pain in the hip turned out to be a complication from Crohn's Disease and it was a very rare and dangerous Psoas Abscess containing 300ml of pus (sorry I know that is gross) and you can imagine if that had burst, which it was going to, I would have become septic and most likely not have survived.
I spent seven days in hospital and the recovery was torture. This is the period of my life where I lost all my modesty and I couldn't give a stuff about any of that any more. Moving in bed was like running a marathon and getting in and out of bed was hideously painful. My drip had to go everywhere with me as it was feeding me copious amounts of antibiotics and sustaining me as I was nil by mouth. I can't count how many painkillers I took and I didn't care about the injections that hurt, especially when it was morphine as that at least helped with the pain. The bruises on my poor little arms were unsightly as they were black from the failed attempts of putting cannulas in or taking blood. I did not eat or drink for six days and funnily enough I was not hungry but I craved pizza. I lost three kilos in hospital.
When I first saw the scar from my surgery I wanted to cry but I have since come to love it because it reminds me that I survived something really bad. My scar also reminds me of the dedicated people who operated on and nursed me, and how lucky we are in Australia to have Medicare.
On the day I left hospital my daughter picked me up and I was grateful. I stayed the night at her place as I could not manage on my own. I was in a lot of pain, very weak and I also had a drain tube still inside me that I had to keep in until it fell out. Believe me that was very unpleasant and painful. I got my pizza that night though!
It's 3.5 weeks post surgery I'm still taking antibiotics and painkillers. I still have pain, find it hard to breathe deeply, and I am very tired. I have finally got my passion back for my blogs and although I am still taking things very slow, I can't wait to get fully back to normal, but my 'new normal' is probably going to be a little different now.
Many people have life changing experiences and this has been a major one for me. I feel so much gratitude for life, my medical team, my family and friends. What I used to think was major important to me, isn't now. I feel a little sorry for my daughters Emma and Grace because I constantly stalk their Instagram stories and text them all the time because I love them so much and the thought of that Psoas Abscess bursting and taking me out of their lives makes me sad. I have an enormous feeling of gratitude and at the same time I sometimes get an overwhelming feeling of anxiety because I worry that I'll turn septic or it will come back, I guess in time I'll settle down and not think about it.
If there is something I have learnt from this and want to share with you is to listen to yourself, if you feel something is wrong with your health insist your medical team investigate.
Footnote: 2 months later Dr Ghaly and some of the original surgical team that operated on me performed a gastroscopy and colonoscopy. It turns out my Crohn’s is still causing me issues as well as inflammation on my oesophagus. Not great news but I’m putting my faith in Dr Ghaly and his recommendations. I believe I didn’t die from this Psoas Abscess because I still have a purpose on Earth. Before my procedure yesterday, the anaesthetist mentioned to me that I could have died from the Psoas abscess! Yes doctor, you are right! But, I didn’t because God still has plans for me.