I’m grateful for my two stomas after my bladder cancer diagnosis

Laura MacKenzie, 45 from Wemyss Bay was diagnosed with a rare and aggressive type of bladder cancer around 4.5 years ago. Laura’s treatment involved undergoing a major and extensive type of surgery called a ‘Total Pelvic Exenteration’ or TPE, which resulted in two stomas – a colostomy and a urostomy. Laura tells her story about her diagnosis and life with two stomas.

“My bladder cancer journey is quite a unique one. I was diagnosed with Stage 4 invasive squamous cell carcinoma, which is a very rare type of bladder cancer. 

“My specialist doctor advised me that my type of cancer accounts for less than 5% of all bladder cancer cases globally. He said that it is most commonly found in African countries and linked to a water carrying parasitical infection called schistosomiasis. I hadn’t visited any high-risk countries so in my case it was attributed to the repeated UTIs I had suffered from any early age.

“The cancer was found late. My first symptom was passing faeces in my urine. I initially thought it was blood and another UTI. I had suffered and been treated for UTIs on and off since I was 7 years old. The 2 to 3 years leading up to my diagnosis had seen the frequency and severity increasing. Each time it was treated with antibiotics. 

“Due to the advanced stage of my bladder cancer, it had spread through the bladder wall and into the pelvic area, and in the beginning, it was hard to diagnose the true origin. Indeed, initially it was believed to have originated in the bowel. 

“The confirmation that the origin was the bladder only came 29 days after surgery when the pathology results came back. However, the numerous pre-operative scans had started to point to an origin in the bladder prior to that.

“The surgery I had was a Total Pelvic Exenteration (TPE). This is considered radical surgery. It is very invasive, it can only be carried out by specialist colorectal and urology surgeons, trained in the procedure. In Scotland, for example, there are only three specialist doctors who are trained to carry out the surgery at the time of my operation. Two of them were involved in my operation. It is only carried out when there are absolutely no alternatives and when the cancer is contained within the pelvic area. It involves removing all organs from the pelvic area and results in the creation of two stoma: ileal conduit (or urostomy) and a colostomy. It is most often used for recurrent gynaecological cancers such as cervical cancer.

“It carries double the mortality rate of a normal operation and postoperative complications are likely in almost 100% of cases.

“So why did I choose to have the surgery? Firstly, in my case, it was the only option to save my life. I had about two weeks to live at the time of surgery. Secondly, despite the complexity of the surgery, it is done with the goal of curing rather than treating the cancer.

“Just over four years on, I am currently still cancer free.”

“So, what is life like with two stomas?

“Well, it is often double the work. They both need to be cared for and looked after in different ways.

“My ileal conduit bag (urostomy) needs to be changed daily or more in my case (for many people they wear their bag for 2-3 days or longer before changing). In between times it is emptied throughout the day. At bedtime I attach a night bag which means I can sleep through the night without getting up to empty my bag.

“My colostomy is quite different to deal with daily. The output from a colostomy can vary greatly and will determine the type of stoma bag and care needed. My output is like my pre op. It is similar to the output of someone without a bag, quite well formed. This allows me to wear a closed bag. This means I change it rather than empty it. It depends on what I have eaten but normally I only need to change it 1-2 times per day.

“When I had my surgery, my colostomy filled me with more fear than my urostomy. I had visions of odour issues and all sorts. I am not a parent and at that point I had never changed a nappy, so for me poo was a taboo! I quickly realised that my relatively predictable colostomy was much easier to manage than my retracted urostomy.

“Diet wise, I have little to consider with my urostomy. The key with a urostomy and more so with two stomas, is to keep hydrated. 

“I live a good life. I’m currently waiting for my 5-year scan, which will be my final surveillance scan. This scares me a little as the scan is like an annual confirmation that everything is alright.

“I work full time as a Global Service Delivery Manager and I love to cook and to travel with work. I have adjusted well to life with two stomas and I am grateful for every day my medical team and my life saving surgery afforded me.”

You can find out more about stoma surgery and living with a stoma by visiting the stoma hub on our website.

You can follow Laura’s story on instagram @twobagsforlife