Make that booty call!
I used to think my husband’s ex-wife was my toughest battle, I now know that the universe sent her as the warmup to my main event.
I am an ostomate, bowel cancer survivor and was a bowel cancer carer celebrating my 11-year Cancerversary.
As June is bowel cancer awareness month, I wanted to share what it was like to be diagnosed with Australia’s second deadliest cancer - Bowel Cancer and what my life is like living with a permanent colostomy bag.
Before I begin, I would just like to start with a disclaimer, this is my story, my thoughts, and my feelings. Everyone’s ‘journey’ is different, this is based on my life and experience.
I was 37, in the best shape of my life, working full time, I was the secretary of the P&C, I was on canteen duty one day a month on my roster day, I was my son’s soccer team manager, I was a netball mum, a dance mum and a wife.
One morning in September 2012 I woke up and I just didn’t have the energy to finish a workout, make dinner or even take a shower.
I went to the dr and after being assessed I was told 'no wonder you are fatigued look at your lifestyle, you need to slow down'.
Hmm.... maybe everything was catching up to me, so I took the dr’s advice and started to make some lifestyle changes, but it didn’t make a difference, December 2012 I went back to the dr who scheduled me for some blood tests which came back fine. Again, I was told its just my body letting me know I need to slow down.
By March 2013 I couldn’t bare it anymore, I wasn’t myself, I didn’t have any energy, if my body was telling me to slow down and I had, why am I not improving? I also had a new symptom, I was feeling sick after I ate anything with gluten or was high in carbs.
So back to the dr, with this new symptom. Now my dr was pretty confident I had coeliacs disease.
In April 2013 2 days before my son’s 15th birthday, I had a gastroscopy and a colonoscopy. When I woke up in recovery my husband and I were escorted into the surgeon’s office with a nurse on standby.
Another thing about me is I graze every 3 hours so as you can imagine I was starving prior to this procedure, fasting is the worst!! I was just super excited to be eating the most magnificent ham and cheese stale sandwich, you know the one you are given after you wake up in recovery… A surgeon who I had never met before looks at me and says I am very sorry to deliver this news but we found a malignant tumour in your bowel. You have bowel cancer. Continuing eating my delicious sandwich trying to digest both the sandwich and the news, I looked at my husband who was completely devastated and said, ‘I told you there was something wrong’.
The following 5 years were hell to say the least. I had chemo, radiation, 12 procedures (including removal of my tumour, removal of lymph nodes as the cancer had penetrated the bowel wall, blockage and scar tissue surgeries, procedures to try and repair internal damage caused by radiation, septicemia, countless infections, incorrect pain management (almost unbearable pain), allergic reaction to endone, morphine withdrawals TWICE, drains inserted for an 8-week period, NG tubes. Then the lifesaving operation an ileostomy bag and now a permanent colostomy bag which I will discuss shortly and recently diagnosed with PTSD.
That was the physical pain, the emotional heartbreak which I am still working on, includes.
• missing both my babies’ formals, my son’s Year 10 formal and my daughters Year 12 formal. I was in hospital during both formals and in surgery the day of my daughters formal.
Missing these 2 milestones felt like someone had literally ripped my heart out. Not being with my daughter while she got her hair and makeup done, to see the look on her face when she was finally dressed. My son saw the heartbreak in both my face and daughters face and said to me 'its ok mum I will go with her, so she isn’t alone'.
• Surprising my daughter with theatre tickets to see our favourite movie Dirty Dancing for her 18th birthday but too unwell to go with her.
• Not being able to hold our first grandbaby for the first couple months of her life as I was on chemo.
• Missing my husband’s surprise 50th birthday present bucket list item – watching Origin live at Suncorp stadium. Id organised flights, accommodation, and tickets to watch the State of Origin at Suncorp Stadium for the whole family. I was doing radiation treatment, so I wasn’t able to go and celebrate with him.
• Watching the heartbreak in your kids eyes every time they randomly found some of your hair that had fallen out from chemo, and watching them go from happy, care free, vibrant kids growing up almost overnight taking on a protective carer role, my son would always come in my room before he went to school to make sure I had fresh water, medicine close by, my phone was close and charged in case of an emergency.
• Battling with your son when he turns 17 as he wants to leave school to get a job to help pay the bills. He sees not only the physical and mental toll this disease is taking on our family, he also sees the financial toll it is taking, but as his mum I want to see him stay a kid for as long as possible, to have and enjoy school holidays for as long as possible, be with his friends every day, to go to schoolies, to take part in the year 12 scavenger hunt and of course attend his year 12 farewell. I wanted my baby boy to experience joy and create some happy lifelong memories. I am so grateful for his friends that would come over every morning and drag him out of bed and take him to school.
When I think things couldn’t get worse, the universe throws another sucker punch. In December 2015, almost 2 years after my bowel cancer diagnosis and still going through treatment my husband is diagnosed with bowel cancer and would need to undergo the same treatment (ileostomy, chemo, radiation), Not only did we have the same treatment, we shared the same surgeon, oncologist, radiologist oh and we ended up in the same hospital at the same time in the same ward.
Can you imagine how my daughter felt having to drive both her parents to the hospital at the same time? my husband was having his scheduled surgery to remove his tumour and ileostomy bag procedure, I was rushed in for emergency surgery. While my daughter is with me post op, I experience another complication and went into code blue right in front of her.
Now about life with an ostomy. I am super embarrassed to admit how poorly I reacted when my surgeon first told me I needed to have an ileostomy, I did not take the news at all well when I found out what it involved.
My surgeon started to explain the procedure as I had never heard of an ileostomy, and I did not know anyone with one (so I thought).
You should know that apart from being somewhat vain, I faint at the sight of blood and guts, and I am hearing I will be having part of my bowel protruding out of my stomach. I burst into tears and said I am out! The surgeon explained it was my best chance for recovery and survival. At that point I chose death… My husband was mortified I would choose death over my life and family. I couldn’t wrap my head around how I was going to be able to manage this? So many questions, would I be able to handle seeing my bowel out of my stomach without passing out, would I be able continue to exercise, could I wear my existing clothes, would I smell, would I be able to continue to enjoy the same foods?
As we now know, I did go ahead with the ileostomy. My introduction to the ileostomy procedure was a meeting with the stoma nurse (Jenny). During this meeting Jenny marked where my ileostomy was going to go and then handed me a grey A4 cardboard envelope containing important and helpful information. I just read doom and gloom….. It did answer my above questions but pretty much explained everything I couldn’t do – what I couldn’t eat, lift, wear etc. More tears followed.
The first couple of days after my ileostomy surgery were rough. Thank God I had 2 great stoma nurses at the time (Jenny and Karen), who I felt played good cop bad cop even if it was not intentional, but little did I know at the time, it was exactly what I needed.
The day after my surgery, Jenny (bad cop) came to check on me and teach me how to change my bag. I was still very opposed to the idea and did not want to see my bowel. I was very emotional and refused to partake in changing my bag, I just couldn’t do it. Jenny gave me some tough love and told me refusing isn’t an option, I need to learn how to change my bag. Jenny did go ahead and change my bag this time but made it very clear there would not be any negotiating tomorrow.
Karen (good cop) came by later the same afternoon to check on me, Karen also explained it was super important I learn sooner than later to manage my bag but in a gentler way. The next day rolled around and as I expected I was super grossed out and reluctantly changed my bag!!!
I was only meant to have the ileostomy for 3-4 months, but due to complications and never-ending infections, I ended up having the ileostomy for 9 months.
I found the Ileostomy hard; I had many leaks as the output was watery, the smell was horrendous, something I had never smelt before, and I had to be really careful with my diet to prevent blockages.
At the time I was working as an EA. One day I was in the office sitting in a meeting taking minutes and suddenly I felt warmth down my leg, then this putrid smell. I then realised my bag had not only leaked but slid off my stomach down my leg and I was horrified. Everyone in the room smelt it!! My boss was lovely, she quickly made everyone leave the room, got my spare clothing (thank goodness I had some with me) and got me to the toilet where I could change and go straight home. After that I was scared to leave home in case I had a leak. That was the beginning of Ostomate Active and when I found out that my friend and business partner Christine, her father whom I have known for years had a urostomy bag, from having bladder cancer, I just never knew he had a bag.
Christine and I want to support people who were experiencing what we were going through. Christine wanted to find comfortable supportive ostomy garments for her dad and I never wanted to be in same position where my bag would be able to slide off and if it was going to leak, I wanted a garment between my bag and clothes. We found some products overseas that I did buy and try, but for many reasons were not for me. We decided to design and make ostomy garments that are comfortable, practicable and fashionable for many occasions. Christine’s beautiful dad who is no longer with us, me and Shayne all tried and tested our products before opening an online store.
The day came when my surgeon said I could have a reversal (I think I did my happy dance for about a week). He did explain that sometimes after having an ileostomy longer than 3-4 months the bowel may not work as it had previously worked, and I could face more complications and he was right. For 1 year I suffered from short bowel syndrome taking up to 16 gastro stop a day to try and stop the ongoing daily diarrhea. Every time I ate, I literally had diarrhea and had no real warning or control. Every time I left the house, I had to make sure I knew where the toilets were, what I was going to eat or not eat. I was tired and hangry. The 16 gastro stop made no difference in the end. This was way worse than living with an ostomy. At least I had a life with my bag.
I went for my annual check up with my surgeon and discussed options – continue living with short bowel syndrome knowing it was never going to get better or have a colostomy – permanent bag, no going back but actually be able to live my life.
I thought having the reversal was the dream, but the dream was having a colostomy bag. I am no longer hangry and can eat what I want, no more gastro stop, I can do more physical exercises, I sleep better as I do not have to jump up and run to the toilet praying I get there in time, I am able to live a really good and full life.
There are still some difficult times with having a colostomy bag, there are still some leaks but are few and far between and mostly my fault for putting my bag on in a rush, I still do get embarrassed if I am in the office and my bag makes noises but the biggest issue I have faced personally is the fact it is a ‘hidden disability’.
For instance, I mostly wear my bag out (wearing an Ostomate Active bag cover of course) as I do not like the bag pancaking, but the times my bag is concealed, when you look at me, I look for the most part perfectly healthy (I think)? I dread having to use a disability toilet in a public place as I’ve had on occasions people who have seen me enter the disability toilet and actually bash on the toilet door while I am changing my bag demanding I get out the disability toilet as it is meant people with ‘disabilities’.
The last time this happened to me was at Charlestown Square shopping centre, I was in the disabled toilet, literally had my top up under my chin, mid change when I hear someone pounding on the door, I was angry, hurt, frustrated, holding back tears and thought stuff it, I am going to open the door. Outside the door was a young man holding his young daughter, his face dropped as you can imagine when he saw my stoma out and proud and I said ‘can I help you?”. He gave no apology, he just walked away. I now only use a disability toilet when I am with someone so they can stand guard, otherwise change my bag in my car.
Another thing having a colostomy bag has taught me is that I now take part in adrenaline activities, for most people this would include sky diving and bungee jumping, for me living on the edge is going out and wearing all white praying that having a good time does not lead to a leak or running to the shops forgetting to take supplies and or a change of clothes.
Boy did I have some tears writing this but apart from being a cathartic experience it has also been a great reminder as an ostomate and bowel cancer survivor;
- We are not alone, we are so fortunate to have so many great support networks including our Stoma Nurses, Bowel Cancer Australia, NSW Stoma Association and so many social networking support groups
- Some days are difficult but there are so many better days
- I may have missed some milestones that broke my heart but I get to experience many more
I hope sharing my experience helps anyone who is going through or about to go through bowel cancer and or living with an ostomy from unnecessary heartache due to lack of education and understanding.
Bowel cancer doesn’t just affect you it takes a toll on your loved ones and everyone around you. Bowel cancer does not discriminate, it does not care what gender you are, if you have a disability, what your sexual orientation is or how old you are.
You know you better than anyone else knows you. Listen to your body, if you notice any changes, like blood in your stools, diarrhea, loss of weight, fatigue/tiredness, then please make a booty call! Call your dr, you may need to take some tests that might be embarrassing or uncomfortable but unlike traditional booty calls it will be the most satisfying and memorable call you will ever make if it saves your life or the life of someone you love.