In young adults – those in their 20s to 40s – the rate of colorectal cancer is increasing. As rates decline in the 55-plus age group, millennials and Gen-Xers have seen a 1.3% annual increase in colon cancer and a 2.3% annual increase in rectal cancer since the mid-1990s.
This is a highly active patient population that is in the full swing of building families and careers. They often struggle with the idea of taking time off for surgery or other treatments.
What's more, many patients in our Frisco office and at Harold C. Simmons Comprehensive Cancer Center raise concerns about their long-term quality of life after surgery. Namely, they worry that they'll need an ileostomy – a surgically created opening in the body that routes bowel waste away from the sphincter and into an external waste collection receptacle called a colostomy bag.
Contrary to popular belief, about 80% to 90% of patients who have surgery to remove a tumor from their colon or intestine will not need an ileostomy. The combination of advanced imaging technology and improved surgical techniques allows us to detect cancers earlier and remove them with more precision, often eliminating the need for a colostomy bag.
National data indicate that approximately 50% of patients with rectal cancer from 2002-2004 received a colostomy. Specialized surgical teams can drastically reduce that rate, dropping percentages into the teens. For colon cancer, it is rare that a patient will require a planned colostomy. Those at higher risk can include patients in poor general health prior to surgery and those who need emergency surgery.
And for patients who need a permanent ileostomy due to the size or location of their tumor, the setup shouldn't stop them from doing what they love. And in most patients, it is unlikely to be noticeable.
Related reading: 6 tips for millennials about colon cancer awareness
How advanced surgery can eliminate the need for ileostomy
Sphincter-sparing surgery is an advanced procedure in which we remove a tumor that is close to the anus without having to operate on the sphincter.
One study suggests that between 1990 and 2010, 67% to 73% of patients who had colorectal cancer received sphincter-sparing surgery. While it isn't a novel procedure, performing this approach requires expertise beyond general surgery. Therefore, these numbers are more favorable if you see a specialist.
As the only National Cancer Institute (NCI)-designated comprehensive cancer center in North Texas, UT Southwestern's gastric cancer surgeons have extensive training in complex and advance procedures.
Prior to performing the sphincter-sparing surgery procedure, we must first locate the tumor in relation to a line that separates the patient's rectum from the anus. If the tumor is close to that line and is not growing into the sphincter, the patient may be a candidate for this surgery.
The surgeon will disconnect the rectum from the anus. Then, the tumor and surrounding tissue that includes cancer cells is removed. This requires an abdominal and an anal approach. Once the portion of the rectum with the cancer is removed, along with the fat and lymph nodes that surround the rectum, the surgeon will reconnect the colon to the top of the anus. This avoids cutting into the sphincter and eliminates the need for a permanent colostomy in most patients.
Depending on the patient's anatomy and how much tissue we remove, a temporary ileostomy usually is necessary as the body heals. Patients typically use temporary ileostomies for 6-16 weeks. Timing is based on whether the patient needs to receive more chemotherapy and when the patient feels strong enough to undergo a second surgery.
Related reading: Colon cancer screening update: Start earlier, choose the best test
Living an active life with an ileostomy
If you are among the small percentage of patients who do need a permanent ileostomy/colostomy, we'll discuss your current activity level before surgery and provide detailed instructions on how to maintain your lifestyle with an ileostomy. In most cases, it will only hold you back if you allow it. I’ve worked with surgical residents who had ileostomies, and they didn't let it stop them from performing their rigorous duties at the hospital.
Patients with ileostomies have continued to be professional place kickers in football. Others have continued to be actors. We even had a patient who biked 100 miles between their first and second surgeries – all with an ileostomy.
To help achieve these outcomes, UT Southwestern takes a team approach to planning each patient's care. Every week, our multidisciplinary provider team meets to discuss our patients' current cases of colorectal or anal cancer. Though each patient might see just one doctor, their case is reviewed by nearly 20 experts – and each patient benefits from the team's collective expertise in the latest techniques.
Related reading: Here’s why colon cancer cases are rising in young adults
Taking care of an ileostomy
Taking care of an ileostomy takes some getting used to, particularly among our active patients. One of the biggest concerns is whether it will be obvious to others that they have an ileostomy. In most situations, it will not be noticeable.
We recommend sharing with intimate partners that you have an ileostomy because it will be noticeable in those situations. You should also consider teaching a loved one to clean the area in case you need assistance.
UT Southwestern stoma nurses are experts in ileostomy management. They'll educate you in proper cleaning and maintenance, as well as offer tips to adjust your wardrobe and routine as you acclimate to your new routine. When you return home, you will have access to home health nurses who will help you get comfortable managing the ileostomy.
The majority of patients who have colon surgery will not need an ileostomy. If you do, it doesn't have to be a barrier to enjoying your life. With support from an integrated care team, you can live a fulfilling and active life after colon surgery.