My journey started when I moved to Queensland and was diagnosed with Crohn's Disease in January 1989 at the age of 31. I had two small children aged 3 and 15 months. This was a very difficult time for me as I was all alone not knowing anyone as all my network was in Sydney. To make life more difficult I didn't have parents as they were deceased and my husband (now an ex) had no interest in me or my journey through this terrible disease and what it will bring in the future. My story brought me grief, sadness, I believe neglect to my children at their young ages and, eventful joy in my life. I believe if I write this with the best of intentions of my high moments and low moments, the people reading this may be able to relate and not feel alone.
I was under a wonderful Private Specialist. I have had many tests done in the early days and the one test I distinctively remember is a tube up my nose, down the back of my throat, which I promptly vomited bile up, then some kind of stuff poured down into the bowel. The "specialist" that did it was as heartless as a slug.
My life began to down spiral with pain and weight loss and none of the medications seemed to be doing any good as I think that my body was not reacting to what it was supposed to do. So finally, Mark wrote to the head of Gastroenterology, Gold Coast Hospital, as you were able to get Infliximab infusions through the public health system. This was approximately early 2000's. I had previously used my private health but they would only pay for 3 and I needed far more than that. From memory, in May, 2007, I underwent a colonoscopy to see how the Infliximab was working and unfortunately, my bowel perforated and I was back into theatre for an ileostomy. At this stage I had a vaginal/anal fistula which was most embarrassing and not what happens normally. At the age of 49, I was shocked, alone, except for my daughter who was a saint, divorced, unloved and I definitely could not bring my head around this horrible "thing" on my stomach! I had a terrible time adjusting to this and wondered how I could ever be a "normal" person again. To cut a long story short. I run an ostomy page, laugh at pooping the bed and try to help others in their everyday life with an ostomy.
Thanks for letting me share my shortened story. Here is my story from 2000 to today...
I met a family and they had a friend which they introduced to me in approx. 2002, just prior to my divorce proceedings. He was a wonderful person who helped me spiritually through the bad times. Unfortunately, he became dependent on me in my times of when I became a lot more ill. So, I had to decide on who to look after first. It was me.
In 2010, I became a human being once again. I started dating (from dating sites), until I met a man who was, and is today so understanding of my bag and my pooping in the bed tales. Yes, it happened early on in our relationship; I cried, he said have a shower. Oh, wow was my thoughts, but I still cried from embarrassment.
In our time together, and we are still together after 10 years this month. I have been in hospital and many a time he has changed my bag, wiped my stoma of poo, cleaned myself up, showered me....need I say more? I am happy to tell you about me. We have all gone through it, some have found what I have found, some not. As an ostomate, we support each other for ever and a day.
Thank you for sharing.
Written by Sonja (January 2022)