A: Some of the most difficult discussions I’ve had with my patients are the ones that involve explaining what a stoma is and what it will mean to their life. I have had many patients state emphatically that they would rather die of their disease than have a stoma. When I hear this, I slow down the discussion and start from the beginning.

Colorectal cancer analogies always seem to relate back to plumbing, so let’s talk about the “long pipe” that makes up the colon and the rectum. Within the bowel itself, a tumour can begin to develop. If there is no spread of disease, our next step is to remove that segment of the pipe (as explained in this blog post). Once that segment of the pipe is removed, we have two ends. Ideally we can connect the two ends to recreate one continuous pipe. However, this is often not possible or safe or even desirable, and in those instances, a stoma is absolutely necessary in order for the gut to work again.

A stoma is a short length of intestine that is brought to the skin’s surface in the best possible, pre-determined location. This can be an ‘end stoma,’ which means the terminal end of the gastrointestinal tract comes out of the skin. Or it can be a ‘loop stoma,’ which means a small loop of intestine is brought to the skin’s surface and opened so the bowel contents exit at the stoma. In a loop stoma, the bowel then dives back into the belly and continues inside.

A stoma can be permanent, in which case no eventual reconstruction is planned or even possible, or it can be a temporary way to divert the flow of waste so it doesn’t pass through the bowel. Often if there is a large cancer in the colon or rectum that begins to block the bowel and not allow stool through, a temporary loop stoma is required in order to divert the stool while chemotherapy or radiation are being given. Once the cancer is removed, these stomas are often reversed. It is important for you to ask the surgeon what type of stoma you (or your loved one) requires and if it will be temporary or permanent.

If there is a cancer that is invading into the anal muscle and the muscle needs to be resected in order to treat the cancer thoroughly, then there is no possibility to reconnect. In this rare but difficult scenario, the entire rectum and anus are removed and a permanent end stoma is created. In order to create any of these stomas, the surgeon must create a passage through the abdominal wall and bring the bowel through the opening. Once it is secured in place and the wounds protected from infection, the surgeon then opens up the bowel and sutures it to the skin and abdominal wall. This is where a bag is affixed, which sticks to the skin around the stoma to capture the waste output in a controlled, odour-free manner.

Creating a stoma is usually the last step in an otherwise relatively complex surgery. It is usually a very straightforward and simple process that is only done in the operating theatre. Usually the creation of a stoma can take about 30 minutes or so.

Invariably, the concept of a stoma is mortifying to many patients. And as I tell people in clinic: I won’t minimize the gravity of the situation but I will tell you that the most common sentiment I hear from patients after a stoma is made is that they have a strange feeling of comfort and relief, and I very often hear the phrase “it is not as bad as I thought”.

The creation of stomas is a quintessential part of being a colorectal surgeon but it certainly cannot be done properly without the expertise of a stoma therapist on the team. As such, there’s a trained advanced practice nurse in most units who is dedicated to stoma therapy, education, and engagement. As patients are introduced to this possible necessity, they are exposed to many different resources in order to learn how to cope with this new ‘bag’. They learn how to change the pouch and empty it through home care services, and they find ways to minimize the way the bag affects their quality of life. In any patient that may have any degree of incontinence after a rectal cancer operation, a stoma is preferable and will certainly offer an improved quality of life in comparison to incontinence.

It’s important to remember as a patient or family member of someone facing a stoma: a stoma doesn’t smell, it doesn’t leak, it isn’t noticeable through clothes, and so although the reality is often difficult to accept, in certain situations it is certainly the preferred option.

I like to remind my patients that the stoma doesn’t define you, it is not rare and you are not the first to live with it. I often say, “If I didn’t know it was there, I wouldn’t even know you have a stoma at all.” Many patients tell me they’ve experienced no significant change to their quality of life and it does not limit them in any way. They can eat anything they like and there is no change to physical activity.

These days we are much more aggressive about avoiding a stoma and reconstructing the normal plumbing. But sometimes a stoma is a necessity. When I am meeting a patient who needs to have their rectum and anus completely removed in an effort to save their life, I explain to them that, yes, life will change; they will have to get used to a new normal and adjust accordingly. But soon that new normal will just be normal, and soon they will get back to doing the things they love doing, stoma and all.

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I will tell you about Mary*. She had no risk factors or family history of rectal cancer. At 29 years old, this new mom had been bleeding for a few months in small amounts that went largely unnoticed. Cancer was not on her radar. A visit to her doctor eventually led to a colonoscopy that detected the cancer.

Over the course of about a year, Mary received chemotherapy, radiation and surgery. While the cancer was controlled for a short time, it returned.

As a cancer doctor, I have many difficult days sharing in my patients’ sadness. The day I looked Mary in the eyes, her baby in her arms, and told her the cancer had returned was — and still is — the most difficult day of my career. Just when we thought the disease was controlled and Mary would get her life back, we were stopped in our tracks. How brutally I was reminded that day — and each day since — that this disease shows no mercy and knows no boundaries. Mary died just over a year after her diagnosis.

Colorectal cancer is not just a disease of the elderly. It’s a deadly yet preventable — and often treatable — disease that every adult should be aware of, regardless of age.

In fact, Canadian researchers have recently identified an alarming trend in the rates of colorectal cancer in young adults. Looking at data from the Canadian Cancer Registry from 1997 to 2010, the study found that the incidences of colorectal cancer rose by 1 per cent per year in patients in their 40s, 2.5 per cent per year for those in the their 30s, and a shocking 7 per cent for those people in their 20s during that time period.

These increasing trends among younger people are a stark reminder that this disease is definitely not just a disease of the old but rather a growing problem in young adults.

In my own colorectal cancer practice, about 30 per cent of my patients are under the age of 50.

And, sadly, when colorectal cancer strikes in young adults, it is most commonly only diagnosed in its later, more advanced stages. That’s because with no current general screening recommendations in this age group, the diagnosis is only being made once the cancer has advanced enough to cause symptoms like rectal bleeding or weight loss. Even then, younger adults often take longer to have these symptoms checked out by their doctor, leading to an even worse prognosis.

While we don’t yet know why rates among young people are increasing, we need to raise awareness of this disease among that population, and among health-care practitioners who wouldn’t typically suspect colorectal cancer in a young woman with no risk factors.

Awareness is our most powerful tool in identifying and treating this disease early, and ongoing research into whether screening should be started earlier than age 50 is needed. Since Ontario’s colorectal screening program began for patients over age 50, colorectal rates have actually been decreasing (because pre-cancerous polyps can be removed before advancing to cancers).

It’s so important to be vigilant in ensuring that all adults know the signs and symptoms of this disease, as well as the screening guidelines for early detection.

Step 1 is to know your risk. Check out this risk calculator and talk to your family about your family history. Colorectal cancer can strike even those without known risk factors. If you have any changes to your bowel movements, talk to your doctor.

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