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Some of the most common questions about colostomies or ileostomies — both methods of bringing stool outside of the body after gastrointestinal surgery — revolve around smell and diet, according to Stephanie S. Yates.

Yates is a nurse practitioner at Duke Cancer Center’s Wound Ostomy Clinic in Durham, North Carolina. In a recent interview with CURE®, she revealed that many patients with ostomies are worried about smell, since fecal matter is drawn out of the body into a “pouch” that sits on the abdomen. However, Yates assures patients that they should not worry about odor, as colostomies or ileostomies do not smell except for when they are being changed.

Another common question Yates receives is about the best diet. The answer, according to Yates, depends on whether a patient has a colostomy (where the colon is diverted outside of the body) or an ileostomy (where the small intestine is diverted outside of the body). People with colostomies typically do not need to change their diet, while those with an ileostomies may want to adopt a low-fiber diet, according to Yates.

Stoma Prolapses Are Often ‘Alarming, But Not Dangerous’ After Colorectal Cancer Surgery

Most of the time, the most common questions people will ask about are, “Will I smell?” because people are always concerned about with, about with their bowels, about odor. I'm usually able to easily inform them that they should not have smell because the pouches are made out of odor-proof material. The only time you have smell (is when) you're usually in your bathroom, you might be dealing with it, but everybody else has smell that time. So I try to reassure them about that.

A lot of people have questions about their diet. With a colostomy (that is there) permanently, there really don't have to be changes in the diet. A lot of people think, “Well, there's a colostomy diet out,” but there really is not. Basically, food treats you the way it always has, which things agreed with you if they do fine, if they didn't, they don't. What we find is that people may pay a little more attention to things like gas-causing foods, your beans and beer, so to speak, the green leafy (foods) that you might eat. … You might just pick and choose how much and when you might want to eat those, eat those particular foods. But otherwise, there's no absolute must eat (or) absolutely can't eat (foods). We would encourage you to drink plenty of fluids and eat a variety of foods. Healthy diet is the only thing we would say.

Now ileostomy … if you have an ileostomy, you would be encouraged to go with a little bit (of a) lower-fiber diet, which is kind of counterintuitive. We preach fiber, fiber, fiber, but with ileostomy, it is the natural raw, crunchy veggie things can sometimes cause (patients) to … upset their system and not pass through as easily. We tell them to stay with more cooked vegetables, cooked foods, meats, breads, pastas, all those kinds of things, but just really watching the raw crunchy veggie stuff.

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From odor to diet concerns, a nurse practitioner answers common questions about colostomies and ileostomies from patients with cancer. 

Expert Answers Common Questions About Ostomies After GI Cancer Surgery

Although extremely difficult, recovery from early-stage esophageal cancer surgery is possible.

With minor changes to eating habits, the right multidisciplinary care team and time, patients may be able to return to enjoying the same foods they did before their cancer diagnosis.

For 60-year-old New Jersey-based chef Antonio Goodman, this was a huge relief.

Goodman was originally diagnosed with Barrett’s esophagus (a condition where the esophagus is damaged by acid reflux) before an endoscopy in December 2021 revealed the presence of stage 1 esophageal cancer.

“The only saving grace was that it was stage 1,” Goodman said in an interview with CURE®. “The PET scans showed that it did not spread. Though I didn’t need any chemo or radiation, I did need surgery.”

Goodman underwent a six-hour robotic surgery at NYU Langone Health in New York City, led by Dr. Paresh C. Shah.

“The treatment (for esophageal cancer) is so much better now than it was before,” Shah said in an interview with CURE®. “From the surgery perspective, we’re able to do the surgery minimally invasively through robotic surgery and the minimally invasive surgery allows patients a faster recovery, faster return to their normal lives, less time in the hospital (and) less blood loss.”

In Goodman’s case — and Shah said that this can be expected for most patients who are diagnosed with esophageal cancer — before surgery he met with a surgeon, oncologist, nurse and nutritionist to learn about what surgery and its recovery would look like.

“The reality is you're eating the same way,” Shah explained. “We don't change how you chew or how you swallow. But the mechanism of swallowing does change, the food is going in a different way than it did before. The stomach's not the same. So, your capacity to eat is a lot less. Learning what full feels like is different, and changes over time.”

Goodman remembered that the first few days after surgery were “grueling,” as he was unable to swallow. Then, about four days later, he was allowed to drink some water to ensure that there was no leakage. Once that was cleared, he was put on a liquid diet.

Eventually, Goodman was able to return to eating his favorite foods — which was majorly important for Goodman, whose career is in the kitchen preparing food — though he did have to change the way he was actually ingesting the food.

“There were some rules of engagement that I had to abide by. The first one was no more big portions,” Goodman said. “It’s pretty much small and slow — small meals eaten slowly throughout the day.”

Goodman explained that after surgery, there were no more muscle contractions bringing food down the throat into the stomach. Instead, food moved through this process by gravity, which, at first, he said was an odd sensation.

“They're learning their new anatomy, their new plumbing as it were,” Shah concluded. “But the good news is that the plumbing adapts also. When you get to be a couple of months out from surgery, for most people, it feels completely normal.”

An esophageal cancer survivor noted that recovering from surgery to treat the disease was “grueling,” but he said he was eventually able to return to some normalcy with his ability to eat his favorite foods. 

Recovering From Esophageal Cancer Surgery is ‘Grueling’ But Doable, Says Survivor

Patients who ate unprocessed or processed red meat after a diagnosis of stage 3 colon cancer may not have an increased risk for cancer recurrence or death, according to recent study results.

“This finding is an important contribution to the literature on post-diagnostic health behaviors and outcomes among cancer survivors,” Erin L. Van Blarigan, an associate professor of epidemiology and biostatistics at the University of California, San Francisco, and colleagues wrote in the study published in 

. “Although our study has limitations, these findings can potentially inform patient counseling and the development of dietary guidelines specific for cancer survivors.”

Several recommendations from cancer organizations advise against 

 especially for patients with colorectal cancer despite some studies in recent years demonstrating that this intake may not impact cancer-specific or all-cause death, survival or other outcomes, according to the study authors.

Researchers in this current study assessed unprocessed red meat and processed meat intake after a 

 and its potential association with the risk for death or cancer recurrence. To do so, researchers analyzed data from 1,011 patients with stage 3 colon cancer (median age, 60 years; 44% women). Data were collected via surveys including a food frequency questionnaire, which was completed when a patient enrolled in the study and six months after cancer treatment. The questionnaire, in particular, focused on the intake of more than 130 items over a three-month period.

Researchers focused on several outcomes throughout the study including occurrence of a new primary colon tumor, documented disease recurrence or all-cause death. Patients were followed up for seven years after completed cancer treatment.

During a median follow-up of 6.6 years, there were 305 deaths and 81 cancer recurrences without death. Eating unprocessed red meat or processed meat after receiving a diagnosis of colon cancer was not linked with the risk for mortality or cancer recurrence.

Patients who reported a higher intake of unprocessed red meat or processed meat had a lower incidence for cancer recurrence or death compared with those who reported a lower intake, although the difference between both groups was not significant.

“Our study expands on these findings (from two prior studies) by examining unprocessed red meat and processed meat separately, and the conclusions remain the same: neither unprocessed red meat nor processed meat intake after diagnosis is associated with risk of colon cancer recurrence or mortality,” the study authors wrote.

Patients with stage 3 colon cancer who consume processed meat or unprocessed red meat after receiving their diagnosis may not be at an increased risk for cancer recurrence or death.

Meat Intake May Not Impact Risk of Disease Recurrence, Death in Colon Cancer

Germline genetic testing — where clinicians test for inherited mutations — is essential for patients with colon cancer, as the results may not only help guide their treatment options but can also let them know if they or their family members are at an increased risk for other cancers.

However, current recommendations call for screening of patients and then deciding if they are appropriate candidates for germline testing, which could lead to some patients with genetic mutations or inherited cancer syndromes falling through the cracks and not being identified, according to Rachel Pearlman, a genetic counselor at The Ohio State University College of Medicine.

In a recent interview with CURE®’s sister publication, CancerNetwork®, Pearlman discussed her research in genetic testing in patients with colon cancer, and why germline testing for all should be the way of the future.

Question: Can you explain your research regarding colon cancer genetic testing, and how it can help both patients and their family members?

The Ohio Colon Cancer Prevention Initiative, which we affectionately referred to it as the OCCPI study was exactly what the name implies. It was a statewide initiative in Ohio that was created to prevent colon cancer.

We know that individuals who are born with a germline pathogenic variant in a cancer predisposition gene have increased risk to develop specific types of cancer. Obviously the types of cancer depend on which gene isn't working correctly. By identifying individuals with colon cancer who have these germline pathogenic variants, we could then hopefully prevent them from getting different cancers in the future, and we could help their family members reduce their risk for cancers too.

The OCCPI study is the largest study to date that performed universal tumor screening … on everyone in the study. And we also did germline genetic testing with multi-gene, pan-cancer panels for those who met our germline testing criteria. And then we also did tumor sequencing for those with unexplained mismatch repair deficiency.

We also provided genetic counseling locally for those who tested positive for a germline pathogenic variant and no cost cascade testing and genetic counseling for the relatives of those found to have Lynch syndrome.

What were some of the highlights that came out of that research?

Importantly, we found that one in 14 (or 7%) of individuals with colon cancer will have at least one gene mutation increasing cancer risk. And we know that this is actually an underestimate of the true prevalence, because only our high-risk patients receive germline testing. In our study, the true prevalence is probably closer to 10 to 15%, as shown by some other studies.

We also found that one in 25, (or a little bit over 4%) of patients with colon cancer actually have Lynch syndrome, which is a higher frequency than what we had previously reported, which is likely due to improved technology with both the universal tumor screening and germline testing and it truly being universal being done on all-comers rather than targeted (and) based on your diagnosis or family history.

Also importantly, we found that 3% had a pathogenic variant and a non-Lynch syndrome gene, the most commonly being in ATM, which is thought it was a breast and pancreas gene (mutation). (We also saw mutations in the CHEK2 gene) which is thought of as a breast and colon (cancer) gene. APC, which is known to cause polyposis. Interestingly, (there were) BRCA 1 and 2 (mutations), which increases risk for breast and ovarian cancer.

So we were finding gene mutations … that we weren't necessarily expecting based on their colon cancer diagnosis. And for some of them, we weren't expecting them based on the family history either.

We also have some really interesting data in our young-onset cohort. We found that 16% of individuals diagnosed with colon cancer under the age of 50 had at least one gene mutation. We had published that a few years earlier. About 8% of those individuals have Lynch syndrome and 8% had no different hereditary syndrome.

The most import (finding), to come out of this research was that if universal tumor screening, which is recommended for every person who's diagnosed with colon cancer, had been the only method used to screen for hereditary cancer syndrome, then almost 40%, so 38.6%, of our patients identified to have a mutation would have been missed. (That’s) including 6.3% of those who are identified to have Lynch syndrome. We found that we're missing Lynch syndrome and mismatch repair proficient patients, and we found unexpected mutations in both the proficient and efficient mismatch repair patients.

What is on the horizon for genetic testing in colon cancer?

Hopefully genetic testing or germline genetic testing will be recommended for all individuals with colon cancer, which is a pretty big shift from our current guidelines, which are really based mostly on mismatch repair deficiency status, or age at diagnosis or family history criterion. There's a lot of burden on the practitioner trying to figure out who is the appropriate person to offer genetic testing to.

Once germline genetic testing is recommended for all colon cancer patients, or if that were to happen, that would certainly eliminate a lot of the burden on trying to figure out who is the right person to test. We know that everybody who has colon cancer is appropriate for testing.

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Performing genetic testing in every patient diagnosed with colon cancer, and not just those considered high-risk, could identify that person's risk of developing another cancer later in life.

Universal Genetic Testing Should be Recommended for All Patients With Colon Cancer, Says Expert

Over the past 20 years, several developments have been made in the surgical and therapeutic treatment of colorectal cancer, which have allowed patients to have better outcomes including survivorship, according to two experts.

According to the American Cancer Society, colorectal cancer is the third most common cancer in the United States, excluding skin cancers. The organization estimates that there will be 106,180 new cases of colon cancer and 44,850 new cases of rectal cancer diagnosed in 2022.

, we spoke with two colorectal cancer experts from City of Hope to learn more about the developments that have significantly changed the treatment landscape in this area.

“There’s nothing the same as it was 20 years ago,” said Dr. Andreas M. Kaiser, a professor and chief of the Division of Colorectal Surgery at City of Hope, a comprehensive cancer center in Duarte, California, in an interview with CURE®. “Our understanding of the disease or treatment modalities all have totally changed. If a physician in 2000 thought he or she could just continue practicing like they did at that time, I think such an individual would be lost in the field at this point and could not keep up.”

Much of the change that has occurred in colorectal cancer over the past 20 years focuses on how to treat patients and how to categorize them by subtypes.

“In the non-surgical armamentarium of treatments for patients, we have new drugs, we have new strategies and we have new — basically — molecular markers to subgroup our patients,” Dr. Afsaneh Barzi, an associate professor of gastrointestinal oncology at City of Hope and a medical director at AccessHope, a subsidiary of City of Hope, told CURE®. “To step back, colorectal cancer was bundled as one disease. When we look back about 20 years ago, it was a disease that was all under one category. And then later came first the differentiation by anatomical site, meaning rectal is different from colon. And then later on, just over the past few years, further differentiation by anatomical site, right-sided colon cancer or left-sided colon cancer.”

‘Sophisticated Technology’ in Colorectal Cancer Surgery

Although treatment of colorectal cancer may vary depending on its location, size and potential cancer spread, it often involves some combination of surgery, radiation therapy and chemotherapy.

Surgery is one of the many areas where dramatic advances have been made over the past 20 years. In the past, surgeons typically made an incision from below the sternum to the pubic bone, Kaiser said. Nowadays, many surgeries, particularly first-time surgeries, can be performed with minimally invasive tools and techniques like laparoscopy or robotic surgery. This is when a surgeon makes several small incisions, measuring a centimeter or smaller, where instruments are inserted. This allows the surgeon to perform the procedure without inserting a hand and other tools into the patient’s body. To remove the piece of affected tissue, one of the incisions can be made a little bigger by approximately two inches.

“Sometimes, we see patients who had previously, for example, had an appendectomy in the ‘80s or ‘90s, and they have a 10- or 15-centimeter-long incision,” Kaiser said. “Now we come in and do surgery for a much bigger piece of tissue than the appendix and we have much smaller incisions. That detail sometimes very clearly illustrates to the patients how we have changed our approach.”

Laparoscopic surgery was introduced back in the ‘90s, but it did not establish itself until the mid-2000s, Kaiser said. This is also around that time that robotic surgery started to evolve. Compared with laparoscopic surgery, when a surgeon holds instruments in their hands, robotic surgery involves a robot holding the tools. This doesn’t mean that the robot itself is performing the entire surgery, but rather it translates movements that the surgeon makes inside a console and implements them inside the body.

“Because it is a very sophisticated technology, it allows (for) very precise movements inside (the body),” Kaiser said. “If there is any sort of tremor in the surgeon’s hand, it corrects so that the movements are very precise such that we can do pretty much the entire operation internally. The reconnection of the bowels, we can do internally without having to make a big incision.”

This precision has positively impacted patient care and has improved outcomes like survival. First off, surgeons have learned much more about anatomy through these minimally invasive approaches, which can also minimize a patient’s bleeding risk during the procedure. Not only that, following a patient’s anatomical planes allows surgeons to remove a “nice-looking specimen,” Kaiser said, which can reduce the risk for the tumor returning in that area.

Technology has also allowed oncologists to see a tumor before treatment starts, which can help them developing a game plan which treatment to proceed with before surgery in an attempt to shrink the tumor.

“With those new medications and protocols in up to 30% (of patients), the tumor disappears and we can’t see anything left, which creates an interesting new problem, but a good problem to have. That is, should we actually still do the surgery that we originally wanted to do, or can we watch and wait (with) those patients?”

Aiming to Reduce Overtreatment in Patients

Not only has this “watch-and-wait” approach been implemented in the surgical side of rectal cancer treatment, but also in the therapy side of treatment to an extent. This may potentially reduce the risk for overtreatment in patients and for side effects from treatments.

“Not only have we brought more (therapies) to colorectal cancer, … we have also started to decelerate the treatment for patients who don’t need too much treatment,” Barzi said. “In other words, finding the right balance is happening within this space of colorectal cancer, and it’s really fascinating. Shortening the duration of adjuvant therapy for a subset of patients from a standard of six months to three months, based on the IDEA collaboration, really happened within this 20 years’ timeframe.”

Therapeutic advancements in colorectal cancer started in 2004, when two targeted drugs were approved by the Food and Drug Administration (FDA) — Avastin (bevacizumab) and Erbitux (cetuximab). In fact, Barzi said that 

colon cancer was among the very first cancers to have targeted drugs

 approved by the FDA. There has also been growth in subsequent lines of therapy including Stivarga (regorafenib), which was approved in 2013 and was the first drug to enter this space in nearly 10 years after the last approvals. This was followed by another FDA approval in 2015 for Lonsurf (trifluridine/tipiracil).

In addition to advancements in treatments, progress has also been made in the strategies used to treat patients with colorectal cancer.

“It isn’t just about using chemotherapy,” Barzi said. “It’s how we basically utilize the multimodality treatment, how we bring the surgeon, the oncologist and the radiation oncologist all on board to better the care and the outcomes of patients with colorectal cancer. It’s among few cancers that a small minority of patients with stage 4 (disease) can actually see a cure. That is a difference between colorectal cancer and many other cancers.”

A multidisciplinary approach to treating colorectal cancer has enabled physicians to help patients select the best treatment for their particular disease. For example, genetic testing could identify patients with Lynch Syndrome or microsatellite instability-high (MSI-high) disease, which can help doctors determine whether patients would be suitable for immunotherapy, Barzi said.

Advances in both surgical techniques and treatments have led to improved outcomes including survivorship, which highlights the importance of prioritizing survivors’ quality of life during treatment and beyond.

“When we talk about survivors, we should not forget that at least within the past 10, 15 years, we have confirmed evidence that the age of 

colorectal cancer is migrating to a younger age

,” Barzi said. “We have more and more younger patients who have been diagnosed with colorectal cancer, and if these younger patients are going to be survivors, attention to survivorship issues should be forefront and at the center of the attention because these people have 30, 40, 50 years to live after their diagnosis and treatment of colorectal cancer.”

Even with these important advancements in colorectal cancer treatment over the last 20 years, there are already improvements in the pipeline for the next 20 years, if not sooner. Technology will play a huge role in surgical techniques beyond what has already occurred.

“We will expect to see a dramatic change in sophistication in instruments getting smaller, getting more precise, having more ability to turn, etc., so that we can do a mini-incision, whereas inside the abdomen, the instruments start to (almost have) tentacles, allowing you to employ several arms internally, not externally, and do a lot more work inside,” Kaiser said.

Twenty years of updates in technology, techniques and available medications has provided more hope for patients with colorectal cancer, with more advances on the horizon.

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