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Two bags for life

My name is Laura and live on the west coast of Scotland. When I saw on UA’s Facebook page the reminder that in telling our own individual stories we can help increase understanding and encourage feelings of hope, it was the prompt I needed to share my story.

Everyone’s bladder cancer story is unique and mine is certainly unusual. My diagnosis was Stage 4 invasive squamous cell carcinoma, a rare form of the disease.

My specialist doctor advised me that it accounts for less than five percent of all bladder cancer cases globally. He explained that it’s most commonly found in African countries and linked to a water-borne parasitic infection called schistosomiasis. I hadn’t visited any high-risk countries, so in my case it was attributed to the repeated urinary tract infections (UTIs) I had suffered from an early age.

The cancer was found late. My first symptom was passing faeces in my urine. Initially, I thought it was blood and yet another UTI. I had been treated for UTIs on and off since I was seven years old. The two to three years leading up to my diagnosis had seen the frequency and severity of the infections increasing, and each episode was treated with antibiotics.

Due to the advanced stage of my cancer, it was through the bladder wall and into my pelvic area, and difficult to diagnose the origin. Initially, the specialist believed it had started in my bowel. Confirmation that the origin was in my bladder only came 29 days after surgery, when the pathology results came back, although the numerous pre-operative scans had started to point to it beginning in my bladder.

Specialist surgery
The operation I had was a total pelvic exenteration (TPE), which is considered radical surgery. As this is very invasive, it can only be performed by specialist colorectal and urological surgeons trained in the procedure. In Scotland, for example, there were only three specialist doctors who were trained to undertake this surgery at the time. Two of them were involved in my operation.

A TPE 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 ostomies: an ileal conduit (urostomy) and a colostomy.

Most often used for recurrent gynaecological cancers, such as cervical cancer, a TPE carries double the mortality rate of a ‘normal’ operation, and post-operative complications are common.

So, why the surgery? As I had been given just two weeks to live, it was the only option available to save me. It is done with the goal of curing, rather than treating, the cancer.

Life beyond
Six years on, I am still cancer-free.

So, what is life like with two ostomies? Well, it is often double the work! Each stoma has to be cared for and looked after in different ways.

My ileal conduit (urostomy) bag needs to be changed daily or more in my case (many people with a urostomy can wear their bag for two to three days, or longer, before changing it). In between times, I empty it throughout the day. At bedtime, I attach a night bag, which means I sleep through without needing to get 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 ostomy bag and care needed. My output is quite similar to how it was before my surgery – similar to that of someone without a bag, ie quite well formed. This allows me to wear a closed bag, which I change rather than empty. It depends on what I have eaten, but normally I only need to change it once or twice a day.

When I had my operation, 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 though, that my relatively predictable colostomy was much easier to manage than my retracted urostomy.

Diet-wise, I have little to consider with my urostomy. What is absolutely key with a urostomy, and even more so with two stomas, is to keep well hydrated.

Forever thankful
I have a good life, working full time as a Global Service Delivery Manager and enjoying cooking and long-haul travel to the Indian Ocean and the Caribbean. I also volunteer with Fight Bladder Cancer.

I have adjusted well to life with two stomas and am grateful for every day my medical team and my life-saving surgery have afforded me.

Education, education, education
The work the Urostomy Association is doing, building relationships with healthcare professionals so they have more understanding of the specific needs of people living with a urinary diversion, is really encouraging and so necessary. My GP didn’t understand much about my urostomy. He was fascinated and wondered how I only changed my bag every couple of days. I showed him, explaining how I open and empty it, as urostomies don’t have a closed bag. My stoma nurse didn’t have much experience with urinary diversions either – she is based at a local hospital that only does colostomy surgery so rarely comes across urostomies.

Thank you to UA for raising awareness, fighting stigma and everything else they are doing to create better understanding for me, and others like me, so our voices don’t go unheard.