In July of 2019 I had my first appointment with my gastroenterologist. I went with my mum and together with the specialist we had a discussion about my symptoms and what they could possibly mean. She told us about the different types of Inflammatory Bowel Disease (IBD) and she stated that it seemed likely that I had Crohn’s disease. This of course could not be confirmed without having a colonoscopy and endoscopy. So I drank the 2L pre op drink that tasted like the Dead Sea and ran to the toilet far too many times to count and off I went for the procedure. I remember being quite relaxed about it all because with my previous colonoscopy, irritable bowel syndrome was confirmed and I just assumed that it would be a similar result. Whilst laying in the hospital bed after the procedure, my specialist found me and told me that I had severe Crohn’s disease. During the procedure she saw many oesophageal, stomach and small bowel ulcers and I had a long fistula at the end of my small bowel and a whole lot of active inflammation. She took biopsies and wanted to see me asap to discuss my treatment. In the meantime I immediately started taking prednisolone to suppress the inflammation. I remember driving home that day with my mum and just crying – crying in shock that I had just been diagnosed with a chronic illness and also crying in relief that I had finally found out what was wrong with me.
I saw my specialising in the following weeks and she explained what Crohn’s was. My understanding is that Crohn’s disease is chronic inflammation of the digestive tract. The common symptoms are the ones which I have had for a long time. Crohn’s does not go away, it can actually be life threatening but is certainly manageable with medications and sometimes with surgery. I was also explained that everybody who has IBD, particularly people with Crohn’s each have different symptoms, ways of management and issues that arise. IBD is a very difficult disease to manage as it is highly symptom based – meaning that one day I may feel excellent and the next I may feel like literal shit. Pun intended. Along with short-term prednisolone, I commenced on a drug called azathioprine. Azathioprine is an immunosuppressant drug meaning it helps reduce the activity in my immune system to reduce my symptoms. So that was my appointment in a snapshot…information overload. I also left with a bunch of scripts for medications, blood tests and scans.
Prednisolone is a horrible drug. I was taking it for almost 5 months until my symptoms improved and the azathioprine had reached a therapeutic level. I put on 8kgs, I had a “moon face” and had shocking insomnia. I struggled with having any kind of work/life balance for these few months as my body truly felt as if it was on a rollercoaster. Despite the side effects of prednisolone and it generally made me feel low, things soon improved. Christmas was around the corner and I was finally feeling like my energetic self.
Unfortunately this didn’t last long. For the past few months I have been battling with my symptoms again. I have some good days and then some real bad ones – waking up in absolute agony with stomach pain, urgency to go to the toilet and fatigue have been creeping back in. I have had more tests, scans and appointments to see what is the next form of action. Starting a biologic drug? Having bowel surgery? These are things that have been discussed recently however cannot be acted on as yet because my symptoms aren’t persistent, they come and go. My specialist does not want to over treat me but also not under treat me which appears to be quite a challenge. So I’m at the point of documenting absolutely everything. This includes what I eat and what my symptoms are each day. I am also booked in to see a dietician to determine what else I can change or do with my diet to help reduce my acute inflammation.
I’m honestly not really sure what is next with my Crohn’s journey but I do know that I am not alone. There are thousands, millions of people suffering with IBD and I am here to tell you that it is okay. We aren’t suffering, we are living and together we can live our best lives. If anyone is reading this that lives in Australia, please check out the Crohn’s and Colitis Australia “Live Fearless Challenge”. In the month of September I will commit to being active by doing 150km total of either running, walking or cycling. This will help raise awareness and funds to help educate our community. This is a perfect way to be active, have fun and maybe meet some new friends along the way.
Here is the link 🙂
Miss Incognito 