Living with Ulcerative Colitis 

By Tony McLeod 

My family’s story has a common thread of certain food allergies. Foods they had trouble digesting were nuts and shellfish. It was something that I was aware of when I was in my teens but I didn’t pay too much attention to it. 
As I got older there were foods like baked beans, sardines, raw onions and raw garlic which would bloat my stomach and I’d have issues with gas. I’d then navigate eating around these foods subconsciously to reduce having a bloated stomach. 
Moving forward to my early 40’s with two young boys, running my own business and my wife suffering from the aftermath of clinical depression, I fell ill with ulcerative colitis. To be honest I wasn’t too unwell but I was bleeding when I went to the toilet. Initially, as it wasn’t too bad, I managed it on my own and the bleeding issue went away. 
However, during that first year I became extremely sick and ended up at St Vincent’s Hospital in Melbourne where, from memory, I spent five nights where they dosed me with steroids to help with my loose bloody bowel motions. 
After leaving hospital I went straight back to work and my client at the time asked where I’d been. I told him I had been in hospital as I had been diagnosed with ulcerative colitis. Much to my surprise he said he also suffered from the disease, as he said at the time it was like one leper meeting another. We spoke about our personal experiences, and he told me that he’d been to a professor who dealt with food allergies in relation to this disease. Of course, I followed suit to seek help from this doctor. From his tests and direction I took a host of foods out of my diet and for the next three years by following this strict regime my condition seemed to become stable and I had no further bleeding or symptoms of colitis. 
Forward three years and I became incredibly unwell as the disease took hold again. I was taking a raft of meds and trialling new drugs, unfortunately nothing worked as my health spiralled down. Further tests and biopsies saw me admitted into emergency at Monash Hospital where I spent three days taking large doses of steroids to try and bring my colitis under control, unfortunately nothing worked and I then had emergency surgery to remove the entire large colon, effectively the issue was removed. 

For the next 12-15 months I had two further lots of surgery and ended up having what’s called a J Pouch, this is where the surgeon constructs a storage system from your small intestine. 
The result of the surgery was a success as I no longer have the crushing debilitation of not absorbing any nutrients. I still had a lot of bowel movements but no longer felt sick. 
Now almost 20 years later I’m still alive and living an almost normal life. My bowel movements are still quite regular and it would be quite normal for me to go to the bathroom two to three times a night to use the toilet. While it’s an inconvenience I am still alive and enjoy my life by being quite open and frank with people about my condition.  

From the moment I shared 23 years earlier with my client about having this dreadful condition I have been open with work colleagues, clients and friends. I’m proud to be a survivor rather than a victim. It’s an extremely confronting and at times embarrassing condition to have, so the old saying about a problem shared always comes to mind.  
With understanding friends, family and work colleagues life moves on a pretty even course. The most difficult issues I have is functions, concerts or being in a place where I need to use a toilet. I try and limit these types of events as it makes life easier to avoid but at the same time if there’s something I want to do or see I will push my way through to continue to enjoy my life. 
One of my passions is fishing, mainly out on a boat. I have five fishing buddies who I regularly fish with, they all understand my condition and we joke about it as I regularly need to use a bucket on the boat to relieve myself. While not ideal I can continue to enjoy a passion with fantastic understanding companions. The same goes for my home life with my beautiful wife of 36 years and two adult children, all who are understanding of my condition and life is pretty much what I’d call normal. 
I hope my story is of interest to someone who like me 23 years ago stumbled into this debilitating disease. Thankfully it is a disease that if you catch it early, you can hopefully manage it well and over time you will become a survivor rather than a victim and potentially help others as you navigate your way through life.