July 2010 will be a month that I will never forget. Not only was it the month I had my wedding, but a week later we learned that my dad (who was 39 at the time) was diagnosed with terminal bowel cancer.
We learnt that he had a rare inherited condition called ‘Familial Adenomatous Polyposis’ or FAP for short which is a rare form of bowel cancer that contributes to 1% of all bowel cancers.
This disease creates polyps (benign growth) primarily in the colon and rectum, and if left undetected or treated will turn into cancer (usually around mid-late 30’s).
As I was already having issues with my bowel such as irritable bowel and losing blood (for a couple of years) the doctors suggested I too get tested.
I had been on waiting lists for a while, and as my case had been considered ‘non urgent’ due to the fact no known bowel cancer history existed, I was soon bumped to the top of the waiting lists to see a colorectal specialist and to have a colonoscopy.
I began having genetic testing and a colonoscopy which confirmed I had FAP and that I also had polyps.
I was told that I required six monthly colonoscopies and 12 monthly gastroscopies to monitor the growth of the polyps. The Doctors also discussed with me that I would need to have my bowel removed at some stage which they inititally thought that it wouldn’t be until I was 26-30 as based on my dads case I wasn’t at an immediate risk until I was around 30.
It was a lot to take in and digest, and became quite overwhelming which was the reason I started Made With Love-Cards And Crafts which was my way of coping and processing everything that was going on.
But being diagnosed with the FAP made so much sense with all the health struggles I was facing. The year prior I had several brain surgeries for large arachnoid cysts on my brain, and later was diagnosed with stage 4 endometriosis (which required surgery and a medically induced menopause) in October 2012 and Pancreatitis in August 2013. All of these conditions are believed to be linked to the FAP which makes for daily struggles as I cope with the various health issues.
In 2012 my dad lost his battle to bowel cancer at the age of 41 and I learnt at the end of that same year that the growth in my bowel was starting to turn cancerous, meaning I only had months before getting my bowel removed to prevent its spread. The following year in May at age of 22 I had my large bowel and most of my rectum removed with a permanent ileostomy now in its place.
The reason I decided to first share my story was when I was researching prior to my colon removal surgery last year, I found there wasn’t much information on living with an ileostomy more so being a young female living with an ileostomy and decided I would share my story in hopes of helping others on their journey.
Although I have had my bowel removed due to the FAP, my journey is far from over. I was diagnosed in 2014 with a large desmoid tumour, which by my next PET scan multiple desmoid tumours were discovered (with one obstructing my left Kidney) and I was also diagnosed with Thyroid Cancer due to the FAP. I also need to have regular scopes of my stomach, GI tract, duodenum and anus as a number of poylps continue to grow as well as scans of my abdomen, kidney's, neck and breast (as there has been some areas of concern).
In 2016, I entered into the care of a local Palliative care team to help manage my pain and make me more comfortable. I am considered terminal and doctors say I might only have a couple of years to live... I am determined to make the most of each day and to try and make as many memories with my loved ones as I can.
I invite you to follow my blog where I share my journey with you, and I ask that you show me and my blog/site respect especially as I am sharing a personal journey but also because it is taking a lot of courage to speak out and share my story.
Lastly, I thank the incredible medical team who are looking after me and monitoring the changes within my body caused by FAP. What doesn't kill us, will only make us stronger and I am determined to not let FAP beat me!
~ Young Person with an Ileostomy - Young Person with a Stoma ~