Life is what happens when you’re busy making other plans…and I had some great plans for this year! My year so far was ‘supposed’ to be full of studying, fitness, adventure, and friends & family. Life definitely had other ideas!
I started feeling unwell last October with a Crohn’s flare up. I knew it was coming, I couldn’t eat without being in pain. I was bloated, lethargic and so sore. I went to the emergency room one Friday when I just couldn’t take the pain any more. I stayed over the weekend on IV steroids. I left on Sunday night with a prescription for Prednisone (oral steroids) and felt great! Unfortunately steroids work a little too well and masked symptoms of a bigger problem.
I would not usually so openly share the details of my illness with the world, I have always had a head-down and deal with it attitude. I really want to share this experience though because there is so little known about Crohn’s disease. I suffered a very rare side effect with a high mortality rate. I am sharing not only for awareness, but if there is someone out there in the same boat, searching for answers, looking for hope, I would like to provide them some.
Two days after Christmas my right hip started hurting. I thought I had moved it funny the day before, but it just kept getting worse. I could barely walk and I couldn’t lift my foot off the ground, the pain was excruciating. We were heading off on holiday for ten days so I put it aside, took Panadol for the pain and it did seem to ease up a little bit. By the time we got home the pain was worse, so I went to my GP the next day. Once he saw that I couldn’t even lift my foot he ordered an emergency CT Scan, fearing my hip joint may have begun to perish (a rare side effect of long-term steroid use). The CT results were sent to an Orthopaedic Surgeon. A week later I was sitting patiently in the fracture clinic at Royal Darwin Hospital (RDH) for four hours, for the surgeon to tell me there was nothing wrong with my hip joint and to assure me this was great news. All the while I am in agony and this does not seem like good news at all! To be sent away with no diagnoses was horribly depressing. I went back to my GP who ordered an MRI and another CT Scan from which nothing was observed.
By this point I was pretty furious. It was late January, I was still in constant agonising pain, I was miserable and hitting brick walls everywhere. So I sat down with trusty Google and started researching hip pain and Crohn’s disease. Straight away I found many articles describing exactly what I was going through, I knew I had found the answer – a Psoas Abscess, secondary to Crohn’s disease. The Psoas muscle is a large, anti-gravity muscle that runs from the spine to both the right and left hip joints, it’s what allows us to lift our legs, walk, run, bend – it’s pretty damn important. I took an article to my GP (who is the most respectful and kind doctor I’ve ever met) and he agreed with my self-diagnosis. He sent me for one last CT scan. The scan showed very active Crohn’s disease in my small intestine. A fistula (like a worm hole) had formed and was directly feeding my gut bacteria to my Psoas muscle causing an abscess. The next day I was in RDH on IV antibiotics treatment for a 2cm Psoas abscess.
I wish I could say it ended there! The hospital was incredibly busy. I spent the first night in a chair in a hallway, the next three nights in the Children’s Ward. I had no scans or test before I left, it was simply observed that I was feeling better (I was, I could walk!) and I was discharged with oral antibiotics. After two days at home the pain came back, just as bad as before. My wonderful partner Danny stepped in and phoned my gastroenterology nurse and insisted on different / more treatment. That day I had another MRI and again was admitted to hospital the following day. In the week since the previous scan the abscess had grown to 9cm! I was getting worse fast.
Another four days in hospital and I was sent home on a two week “Hospital in the Home” plan. I had a PICC line inserted, which is a semi-permanent IV line that runs from a vein my arm right up to my Superior Vena Cava – a vein that sits at the entrance to my heart. The PICC line allowed for a nurse to come to our house every day to administer IV antibiotics. After the initial two weeks, a repeat MRI showed no change in the abscess. After consultations with Gastroenterologists, surgeons and my wonderful doctor at Hospital in the Home, no one really knew what to do. I was to continue on the IV antibiotics at home for another two weeks with a “wait and see” plan. I was not happy about this. I just wanted to get back to work! Being at home with no direction, nothing to do except rest – it was hard, I’m used to being active, being productive and being contributing to the world around me!
Five weeks at home on IV antibiotics and still no change, all the consulting doctors started to agree that surgery was the best option. Danny and I met with the head of surgery at RDH who agreed that yes, I needed surgery to remove the Psoas abscess, but also to repair the damaged section of my intestines causing all the grief. He scheduled a small intestine resection for the following week, where he would remove about 15cms of my ileum.
On the 9th of March I headed in for surgery! I met with the surgeon who was to operate on me, he put my mind at ease with his kind and compassionate manner. Then I met with a stoma nurse “just in case” – that took away my ease! I always knew have an ileostomy bag was a possibility, but to have a nurse draw possible incision marks on my stomach just before surgery was very frightening. Laying in a hospital bed, about to be wheeled into surgery I was so excited to finally have some action towards recovery, but at the same time I was terrified of the painful recovery process to come.
It was painful, more than I could have imagined. No amount of drugs could take the pain away. Laying in recovery after surgery I asked the nurses “Do I have an ileostomy bag?” and the answer was no! I was so happy about that I laughed. Then I cried because the laughter hurt so much! But the surgery went very well and the surgeon was very happy with his work. I saw many doctors that night who all wanted to look at my stomach, I wouldn’t look, I was afraid of what I would see. One of the nurses told me “it looks really good” so I looked down. It didn’t look good from my angle! Thirty staples from my ribs to my pelvis. It looked sore, big, mean and ugly.
The first three days were incredibly painful. I was weak and stuck in bed, but I was recovering quickly – I was determined to get home! On the third day I walked around the ward and on day four I was on a clear liquid diet. I never ever want to eat jelly again! On the fifth day the self-administering drugs were taken away and I could get out of bed whenever I wanted! Day six I was giving food. Soft mushy hospital food never looked so good! On day seven I stopped taking all painkillers. I was still in quite a lot of pain, but the painkillers slow down digestion which would lead to a longer recovery time. I chose to suck it up to get better and get home quicker. It worked! On day eight I was home, sweet home! My quick recovery shocked me. Total misery, excruciating pain and persistent nausea on Wednesday gave way to hope, controllable pain, smiling, food and my own pyjamas on Thursday! Our bodies are that bloody amazing!
I have been very lucky throughout all of this. I have never been comfortable asking for help – and my beautiful friends and family know this and never waited for me to ask. Everyone has given so freely, without question, to make sure my family and I are cared for. My wonderful partner stepped in to take care of everything for me, both at work and home. He stood up for me when I was feeling defeated by the hospital system – without him I may still be waiting for answers! I had two beautiful friends selflessly coming by each day while I was at home. Them being there was the only thing that allowed me to receive treatment at home, I would have been in hospital the entire time if it weren’t for their generosity. Care packages from my family, meals cooked by friends, messages of concern – the support I received was amazing. I really understand now the quality of the relationships in my life and I am so grateful and blessed for all my people!
So now I am home, back at work and well on my way to recovery! I have more energy than I have had for about a year and apart from a little pain in my abdominal muscles I feel pretty damn good! My staples are gone and I have a cool zip-like scar down the centre of my torso, and it does look good, it is healing very well. I start a new treatment next week called Infliximab, which is also known as ‘magic juice’ because when it works, it eliminates all symptoms of Crohn’s disease. So I have a chance at a healthy gut life for the first time since I was a child! The future is looking amazingly bright, beautiful and full of hope!