I had my appointment with the bariatric specialist in February 2013 who immediately booked me in for my first ever colonoscopy the following month, followed by a referral to a colorectal surgeon due to an “odd test.” At that stage no one had mentioned the word cancer to me.
Before I saw the colorectal surgeon, I was given a second colonoscopy, so a biopsy of the questionable mass within my bowel could be taken. I was totally taken aback when the gastroenterologist told me I had bowel cancer. Two hours later I was called by the surgeon for a pre-op appointment requesting he operate the following Tuesday.
Looking back, I wish I had known Bowel Cancer Australia existed when I was going through my initial diagnosis. It is very difficult to ask your doctor questions when you have no idea what to ask and where to begin.
At my meeting with the surgeon, he explained what was necessary and required; that the tumour had to be removed and that I may need a temporary ileostomy (I didn't actually know what this meant at the time) with the view of having a reversal in three months. He didn’t know if chemo or radiation was required until after the pathology results were through which would be discussed then if necessary.
So on May 15 2013, I had the surgery and ileostomy and two days later was notified of the pathology results - I had stage 1 bowel cancer but thankfully it had not travelled through the bowel wall or to my lymph nodes.
Looking back I was disappointed with the lack of support I received when having the ileostomy. I struggled with the bags and as much as I was appointed a Stoma Nurse, she was also a Team Leader at the Private Hospital where I had my surgery, so she was always very busy. I wish I had known Bowel Cancer Australia offered stoma support back then.
I can honestly say I left hospital not knowing what it all meant, I didn’t even know there were other bags out there you can trial to see what sits and fits best for you. For the first two months I didn’t leave the house and leaked almost daily – sometimes 3-4 times a day and occasionally while sleeping. Trying to change bags (and clothes and linen) in the middle of the night and in the middle of winter is not my idea of fun!
I was under the belief that what I was provided with at hospital was what I had to use. I have since had my stoma reversed (August 7), but these are areas I think people need more help with.
I am still having a few issues with my bowel since the reversal, but it is early days so I just need to take it easy and allow things to adjust, and of course it is a lot of trial and error to see what will and won’t work.
If you’re reading this and wondering how you are going to get through this, I would highly recommend calling Bowel Cancer Australia. Just get on your phone or your email and ask for support.