“I feel like he was left swinging in the wind,” George’s mom confided in me about the rough years that followed George’s diagnosis with Stage IV metastatic colon cancer at age 34.
George had been admitted to the hospital to remove a recurrent colon cancer and to receive HIPEC, a form of chemotherapy that is administered directly into the abdomen.
But the surgeons found his tumor more progressed than they had predicted when looking at his CT scan. They had to remove most of his bowel because it was enveloped in cancer. When George awoke from surgery, he discovered that he now had an ileostomy, a pouch instead of a colon.
When he was discharged a few days later, he was not given much instruction in how to change his pouch and care for his ileostomy site. He found himself scrambling even to figure out where to order supplies. He soon started chemo. Added to the frustration of dealing with a leaking, painful ostomy pouch that woke him every night, he had the retching and severe reflux and peripheral neuropathy that came along with the chemo.
But George was not one to complain. He had a hard time telling family or friends about the deep frustrations caused by his ostomy. The worst, he said, was that he was not told at the time of surgery that an ostomy might be a very possible outcome. He and his young wife would return to this anguished thought again and again–why were they not told? Why was he not asked what his wishes were?
“Instead,” he said, “I just woke up – with this.”
At my encouragement, George sought the help of an ostomy nurse at his oncologist’s clinic. She found no infection; in general, he was doing everything right, she said. She didn’t have much to offer to make life better. When George came to Boston for a second opinion about his cancer treatment, the ostomy nurse here didn’t have any more ideas; “The nurse in his state should be able to help him,” the Boston nurse said. “This isn’t complicated.”
Which, it turned out, ended up being quite true. What was missing was education.
A tale of two patients
In another town, another patient–I will call her “Julie”–was also diagnosed with Stage IV colon cancer.
Julie was treated with the same chemo as George.
But there the similarities end.
Knowing the plan ahead of time makes a difference
Unlike George, Julie was told she would need surgery and would also eventually need an ileostomy–but that first her oncologists needed to shrink the tumor with chemo.
To be told ahead of time what to expect has been shown in clinical studies to both greatly reduce patient’s anxiety and increase acceptance. And so it was in this case.
Chemo without side effects
Additionally, instead of experiencing intractable nausea and vomiting and peripheral neuropathy with her chemo, as George did–Julie had none of those symptoms.
The difference was that after each round of chemo, the oncology nurses would call every day to check in on Julie. If she was having any sign of nausea or vomiting, she was told to come into the clinic to get IV fluids.
Adequate hydration not only improves the nausea and vomiting from chemo, Dr. Paul Richardson of the Dana Farber Cancer Institute once shared with me, but helps decrease the pain from peripheral neuropathy too. So he always administers extra IV fluids with chemo, to lessen these negative side effects.
In Julie’s case, extra IV fluids may have helped prevent those side effects altogether.
Peripheral neuropathy, a painful feeling of pins and needles in the hands and feet, can be a distracting and debilitating side effect of chemotherapy. Due to the peripheral neuropathy he developed, George has a hard time playing with his two year old son and keeping up with him.
Due to the leaking pouch and his resulting embarrassment, George’s social circle is narrow. He doesn’t exercise much. Weakened from the chemo and exhausted from being awakened several times a night with a leaking bag, he lost his job and is now on disability.
George was eventually offered IV fluids, but only at his request. The good news is that after he started the routine IV fluids with chemo, he no longer experiences severe nausea and vomiting–or any nausea or vomiting at all. His oncologist shared that many of his patients would come in and get IV fluids. But inexplicably, that option had not been offered to George, even when he complained of intense nausea and vomiting.
Excellent education = a better ileostomy experience
When Julie eventually had her ileostomy surgery, a nurse came to her house for the first two weeks following surgery to show her how to change her ostomy bag and care for it and instructed her in the “ileostomy diet”, because, as Julie shared with me, an ileostomy is quite different from a colostomy. Because of the rapid transit time, the diet has to be quite different too, to help food slow down as it travels through the GI tract.
George and I had repeatedly asked the ileostomy nurse and dietitian about whether there were special foods he should be eating or avoiding. Nothing in particular, they said. Instead, he was told to take antidiarrheals at the maximum dose–which made him queasy and did nothing to help his high output. But, as Julie learned, there is a recommended ileostomy diet–and following it was super helpful, she found.
In addition, it was important to change ostomy bags the right way. Julie’s nurse instructed her to “start at the top,” Julie said. She learned how to use a “miracle ungluer” that made the bag magically fall away from the skin painlessly.
George had been experiencing pain with each pouch change. Sometimes, in anger and frustration, he would tear the bag off, hoping to make it less painful, like tearing off a bandaid quickly. “I think these are barbaric,” he told me.
How to prevent leakage
George’s ileostomy nurses did not have much to offer about how to prevent leakage. Julie’s nurse, on the other hand, was full of valuable information on that front.
The nurse shared the following important tips: that Julie could use “diamonds” to absorb extra liquid, so she wouldn’t have leaking at night or when out with friends.
Had Julie tried these, I asked? Well no, she said–carefully coached and trained in self-care for her ostomy site from the start, she had had no need for them–she had never had leaking.
Improving acceptance
Three weeks after surgery, Julie visited me and proudly showed me her pouch. “Look,” she smiled, and lifted her shirt to show a small tan opaque pouch.
“I’m pretty squeamish,” she said. “I don’t know why, but it made a huge difference to me when I changed from the transparent pouch to an opaque one. It was so much easier–helped me mentally somehow gain acceptance.”
After two years, George (who did not know about the opaque bags) was still using the transparent ones; and had never gained acceptance. The whole experience was deeply distasteful to him.
Julie’s nurse also made her take a shower–without the pouch. “You have to get used to that,” the nurse said. “And it’s going to feel so much better, getting the whole area washed and clean.”
Why can’t all patients get this support?
George’s mom confided in me: “George didn’t get much support after surgery. It is concerning that standards of care vary so much across medical institutions. Why do other patients have a completely different experience and are given a lot of support?”
“I would have wanted that for George, too,” she said.
I could sense her shock and sadness. She apologized, “ I am sorry for going on. It’s still a sore spot with me.”
The ostomy nurses were right. There was nothing complicated about it. But unless this information is shared with a patient, life can become a living hell.
As George’s mom said–all medical systems should offer this much support. There is a link online to Memorial Sloane Kettering’s ileostomy diet. A list of helpful strategies for coping with ileostomies could be made into a handout for each patient. Warning patients to watch for dehydration after chemo and encouraging them to contact the clinic to arrange for IV fluids if they have nausea or vomiting–or to give them prophylactically, as in George’s case–is not a heavy lift.
Knowledge is power–and that knowledge translates into a better lived life.
Julie and George had the very same “CEA”, a blood marker of the activity of their cancer.
And yet the way their stories played out is so very different.
Julie has a feeling of control. She never developed nausea, vomiting or peripheral neuropathy with her chemo. She was told in advance that she would need an ostomy, so never developed the anger that George has to live with; and she was also told that there was a plan to reverse it in three to six months–something George was never offered but had to ask about.
She had the space to prepare mentally; and she was given the hope that her condition was not permanent–there was a plan to reverse it in the near future.
With a short five year prognosis to look forward to for most patients with this diagnosis–it makes a huge difference to spend two years of that time enjoying life and visiting friends rather than living the life of a recluse. When diagnosed with terminal cancer, time is everything. Successful treatment should include successful teaching of basic skills of self care.
The Health Equity Institute–addressing systemic problems and inequalities
To create the sort of systemic change needed to address this kind of problem, I helped found the Health Equity Institute . Our goal is to make this sort of inequity a thing of the past–to ensure that all medical systems offer the basic care that Julie received–so all patients benefit, not just the few.
If you would like to learn about HEI, or offer the gift of advocacy to a patient in need–please check out the HEI website here: https://heipac.org/
The systems change HEI will be focusing on this year is safe hospital discharge: how to ensure education for patients so they can successfully administer whatever it is they are asked to do in the way of self care–from IV fluids to tube feeds to ostomy site care.
Julie’s experience should not be a rare event–what, in medicine, we call a “zebra”–it should be the rule. This isn’t rocket science. And it can greatly improve the lives of patients with very little effort on the part of institutions.
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Takeaways: Ideas for making chemo less debilitating
- Make sure to ask for IV fluids if you are experiencing nausea or vomiting with chemo. There is data that suggests this may not just improve nausea and vomiting, but may help prevent peripheral neuropathy pain, too
Ideas for making an ostomy site work better: more helpful suggestions
1/ There is a product called “diamonds” that may help prevent leaks–for when one goes out with friends or to help patients sleep through the night without leaks
2/ There is a special glue that is used to apply the pouch and a “magic substance” used to remove it that makes the process much less painful.
3/ There is a special diet that patients with ileostomies must follow so that they do not have excessive output/diarrhea: this, from Memorial Sloan Kettering cancer center, includes specific foods that are good to eat–and those that are important to avoid.
5/ It is important to drink enough fluids: ask your nutritionist how much liquid you should drink each day.
6/ If a rash develops, ask the ostomy nurse about using a protective powder.
7/ Some people prefer opaque bags to transparent ones
8/ Some patients set a timer in the night: emptying the ostomy bag in the night may help prevent leaking
9/ Having an ostomy nurse come to the house for two weeks after surgery to help teach how to apply and remove the ostomy pouch and shower without it–to get really clean–can be a big help too
10/ Ask the ostomy nurse how many times to change the bag each week and whether it is helpful to empty it following every bowel movement
Medical Disclaimer:
All patient and family names have been changed to protect patient confidentiality.
The suggestions given here are not intended as a substitute for the medical advice of your physician. The reader should regularly consult a physician in matters relating to his/her health and particularly with respect to any symptoms that may require diagnosis or medical attention. For additional questions, please call your healthcare provider for reliable, up-to-date information on testing and symptom management of all medical concerns.
Photo credit: We would like to thank Geranimo; from Unsplash.com, photos free to use and share
