Two years ago, Michaela was diagnosed with Familial Adenomatous Polyposis (FAP); a rare and hereditary bowel disease. She bravely talks about her surgery, continuous fight with the disease & what it means for her future. Here is her incredible story.
The disease comes from my mums paternal side of the family. We don’t actually know how far back it goes in our family. What we do know is that our particular form is aggressive, and we have a 75% chance of passing it on. It comes down to a single mutated faulty APC gene. This causes small growths – polyps – to start growing in the large bowel. They start to make an appearance in your teens. If they aren’t treated, over time they’ll turn into bowel cancer and you don’t tend to live past 35.
I got tested at the age of 25 and despite still being young, in FAP years that’s fairly old to be getting tested. Obviously, my test results came back as positive. I had a colonoscopy to see how advanced it was and how many polyps I had. I had a lot. My colon had over 1,000 and my rectum had about 80-100. The only way I could be treated was to have my entire large bowel removed. I had the choice of a permanent ileostomy or a temporary loop ileostomy with a j-pouch reconstruction in the future.
I honestly didn’t know what to say. I had to decide right then and there what to do and how to change my entire life. I decided to go with the loop ileostomy because it was too much of a big decision to make. And after a long 17 month wait, I finally had my surgery on Thursday 5th December 2019.
I know I’ve been very lucky to go into my new life with knowledge, understanding and acceptance. One of my pouch nurses told me to get on Instagram and follow Billie. From one follow I found a massive ostomy community; with people all over the world talking about their experiences and journey. I feel very grateful to have my mum by my side. She’s helped me out so much during my first few weeks with my stoma. Without her knowledge and help, I don’t think I would have the same level of confidence with it as I do now.
Before surgery I was advised to name my stoma. They said it would help me to accept it. I don’t understand how, it’s hardly the same as having a puppy. In my first bag change, it leaked three times. So I decided its name is, Dick. Because well, frankly was acting like a complete dick! I love how it makes everyone laugh when I tell them – only my Nan doesn’t 100% approve.
Now, despite having had my bowels removed and being the proud owner of a stoma named Dick, I have to point out: I am not cured. I will never be cured. FAP doesn’t disappear. I wish it did. It doesn’t. You see, polyps will start to grow in my small intestine and into my stomach. So I am always going to be at risk of stomach cancer if I don’t keep on top of my year scopes and check ups.
As I mentioned at the start, FAP is a hereditary disease. Two years ago, I made the very tough decision, that I would never have a child naturally. I can’t and will not risk passing this on to them. I couldn’t go through the guilt and pain my mum went through and the operation I went through.
Not long ago however, I was told I can have my own children born with a 99.99% of not having FAP. How you ask, let me explain:
It’s exactly the same process as IVF. After they fertilise the egg, they let it grow to seven cells and start searching for the faulty gene that causes FAP. If it’s there, they remove it and put the fertilised egg back into its rightful home. Obviously there are other options such as egg donation, adoption or prenatal testing, but I don’t think I could ever put myself or a partner through that kind of testing and having to decide whether to continue or not with a pregnancy should the test come back saying I’ve passed it on.
I’ve been very lucky to be able to connect with other people who have FAP, and talk to them; hearing about their journey and experiences. Social media has its positives and negatives, but I’ve found it to be a massive positive. The community is nothing short of amazing.
Not only has my ostomy helped to connect me with new people and saved my life, it has also given me the chance to finally appreciate my body and find a level of self confidence and esteem. Despite the current situation with being in lockdown, I am also back on dating apps and I find it really helps to weed the time wasters and narrow minded people. But hey, I am who I am, I have an invisible illness and a disability and I am proud.
I have found that when I tell people I’ve got an ileostomy, most have pitied me and tell me that they are “sorry to hear it”. I guess it’s a natural reaction, but the thing is, I don’t want to be pitied. I don’t want sorrow or anything; I’m healthy, alive and happy. Thanks to dick, I have the rest of my life and for the first time I have confidence. It’s completely transformed my life for the good and I love it.
I have done a bit of online dating, even with lockdown. It’s been a mixed experienced. Most guys didn’t seem too bothered by me having an ostomy, but sadly there were a few, who didn’t accept it and said a few nasty unneeded comments. They did upset me, it’s only natural, but I refuse to let narrow minded people make me feel like I am not normal, disgusting and wrong. Because, I’m not. I’m a fighter and a survivor. I chose to live a long and happy life.
Follow Michaela on instagram