I was diagnosed with Ulcerative Colitis (UC) in 2006 after continuously being run down, losing weight, having poor appetite and mood. It was kept at bay with a myriad of tablets for about a year before I started getting severe abdomen pains and continued to lose weight. After three visits to the hospital, weeks of IV steroids, 13 days awake straight and 20 kilogrammes dropped in less than a month, late 2007 I ended up in emergency surgery and received a temporary ileostomy I called Squish. This was one of the most challenging times of my life. Before UC I considered myself to be an outgoing active person and used to pride myself on being the life of the party. Now I was severely depressed and couldn’t look at myself in the mirror without crying, let alone leave the house and be social. Luckily I had some amazing friends that stood by my side (sometimes literally holding me up) even when I was pushing them away.
"I was severely depressed and couldn’t look at myself in the mirror without crying."
I recovered well and I felt human for the first time in a long time, so I proceeded with the next scheduled surgery to create a J-pouch and received Squish 2.0. Things went wrong from here, instead of recovering as well as I had the first time I got sicker and spent many nights in the emergency room including New Year’s eve 2008. They found I had peri-anal fistulas, my body was rejecting the J-pouch and I had red bumps on my legs (Erythema Nodosum) that caused so much pain when walking, that at the age of 29 I was required to use a walker to keep some independence. I was overwhelmed and I unbelievably felt worse than before it all began. I was again on a myriad of pain medications, antibiotics and steroids that generated mood swings and the world notorious round face on a bone-thin body. I had a few different surgeries to fix the fistulas and save my J-pouch and October 2008 I had my ileostomy reversed and began the path to recovery.
I was well for about two months before it all went pear-shaped again and by Christmas 2009 I was in unbearable pain and after many consultations with my surgeon we decided to give Squish 3.0 a try while we looked at other options. I underwent a few more minor surgeries and it became clear that the options for reversal were running out. Luckily I met my future husband in November 2009 and I began to start thinking about the quality of life. I started looking around for second and even third opinions about my situation and where to go from here. It was are this stage I began to realise that while reversal was still an option the quality of life I would expect with it was not going to be great. In July 2010 I made the decision that Squish was meant to be part of my life and underwent the final surgery to remove my rectum and create Squish 4.0. Unfortunately, as Murphy’s Law would have it, my rectal wound broken-down and another surgery was required to fix it. In December 2010 I had my final surgery which left me with an open wound the size of a fist and the thought that I would never be able to flop on the bed again without pain, however, three months later it healed and I began to plan my future.
"I met my future husband in November 2009 and I began to start thinking about quality of life."
Overall I ended up having five major surgeries, seven minor procedures, countless hospital and specialist visits and four different stoma’s. And although it was a painful period of my life I wouldn’t change a thing as I would not have been the person I am today and would not have the adoring husband that took me scars, bag and all. Having a stoma has not stopped me from doing anything, actually I think it has even made me braver and definitely more aware of what life has to offer and that I should never take it for granted.