I was recently diagnosed with colon cancer and will have surgery and then a colostomy. I'm grateful that surgery is an option, but I'm struggling with the idea of having a colostomy. Any advice?A.
Adjusting to a cancer diagnosis can be challenging enough; adjusting to physical challenges that might come with it can seem overwhelming. It’s completely normal to wonder how you will manage. Seeking out information and support will help you to understand what to expect and how to best cope with change.
If cancer is detected in your colon or rectum, a colostomy is performed. A colostomy surgically creates a “stoma” or small opening in the lower abdomen through which stool can exit the body. Usually, the waste is captured in a small bag that is worn on the body and can be easily disposed of. While this procedure will have an obvious impact on your daily routines, keep in mind that you will still be able to do all the things you enjoy, including physical activities such as sports or gardening, and continue to live a full life with a colostomy.
To understand the impact a colostomy will have on you, talk with your doctors prior to your surgery about what you should expect before and after the procedure. It is also helpful to know the types of assistance and support available to you after your surgery. Ask to see an enterostomal therapy (ET) nurse, who specializes in ostomy care and rehabilitation.
Speaking with an oncology social worker or joining a support group where you can discuss your concerns and learn how others have coped and adjusted can be very useful. Connecting with others who have “been there” can be incredibly supportive and informative.
You can find additional information and support through The United Ostomy Association of America, which provides guidebooks, reference cards and brochures, as well as a message board where patients and caregivers can exchange information and answer questions. You can also find a local or virtual support group.
Remember that with any change comes loss. Give yourself time to adjust as you move into this next stage of your life.
After two surgical operations on my rectum and colon and receiving chemotherapy, I have numbness and reduced sensitivity in my fingers and feet. My doctors suggested Gabapentin, but it gave me problems with my sense of balance. Is there anything else I can do to lessen these symptoms?A.
The numbness and reduced sensitivity in your fingers and feet is called peripheral neuropathy, which is nerve damage that often results from certain chemotherapy treatments (e.g., oxaliplatin). It is sometimes referred to as the “glove and stocking sensation,” as it feels similar to wearing gloves or thick stockings on your hands or feet.
Certain medications can reduce the pain and annoying physical sensations that accompany neuropathy while the nerves repair themselves. Gabapentin relieves the pain of neuropathy by changing the way your body senses pain. It is meant to control your condition but will not cure it. Fortunately, there are several other types of medications for neuropathy, including anticonvulsants, antidepressants, local anesthetics, and opioids, that can be taken individually or in combination. Work with your doctor to find the right approach for you. Keep in mind that it can take one to two years or more for symptoms to go away completely.
Here are some tips that may help you manage and cope with the symptoms of peripheral neuropathy:
- Avoid drinking alcohol, which can damage nerves.
- Wear sneakers or shoes with “rocker bottoms” that allow the feet to roll while walking, provide better traction and can relieve some of the pressure on the soles.
- Remove throw rugs from your home to reduce the chance of slipping and falling.
- Rather than stand, sit down while doing activities such as drying your hair, applying makeup or preparing food.
- Use hand tools, kitchen utensils, and even toothbrushes and pens with wider grips, to make them easier to hold.
- If you have diabetes, manage your blood sugar level very carefully, as high levels can have a negative impact on nerves.
- Join a support group to learn how others lived with, and overcome, the challenges of neuropathy.
- Consult a psychiatrist, physical therapist, or occupational therapist who can provide guidance tailored to your specific circumstances.
- CancerCare has several resources to help you learn more about living with neuropathy. Listen to our Connect Education Workshop podcast, Understanding Peripheral Neuropathy.
For additional help and support, visit the The Neuropathy Association’s website.
My mother was diagnosed with stage 3 colon cancer and I'm worried she is pulling away from those who care about her. I think it might be good for her to talk to others who've been diagnosed to get some guidance. Where should she go?A.
Your question is a good example of how a cancer diagnosis affects the entire family, not just the loved one who was diagnosed. Both caregivers and patients share similar challenges, although with different perspectives. Speaking with people in a similar situation can often be helpful. Many hospitals offer support groups, so I would begin your search by speaking with a hospital social worker who can let you know about available support groups. If you are having difficulty finding local face-to-face support groups or if traveling is difficult, CancerCare offers both telephone and online support groups for colorectal cancer patients and for caregivers.
There are additional organizations that offer support groups, information on how to connect with a local support group, or “buddy” matching programs:
- Colon Cancer Alliance
- American Cancer Society
- The Cancer Support Community
- United Ostomy Associations of America
We know that “one size does not fit all,” and it’s important to determine the type of support services most beneficial to the person in need. A support group can be helpful, and often individual counseling may be more appropriate. Introduce this information to your mom and allow her to ask questions and share her decision with you. And don’t forget to consider support for yourself. Our support group participants tell us they are glad they took the chance to connect with others, and report that they now have a greater understanding of their treatment, side-effects, options, medications, and emotions.
I'd like to meet people with colon cancer who understand what it's like, but I can't seem to find anything near where I live, just groups for people with any type of cancer. Can you help?A.
A cancer diagnosis can feel very isolating. Wanting to establish a caring community is a wonderful way to find support from other people going through a similar experience while at the same time reducing isolation. It is often difficult to find face-to-face groups specifically for people with colorectal cancer. CancerCare understands the importance of staying connected with others and offers two ongoing colorectal cancer patient groups:
- Online Colorectal Cancer Patient Support Group
- Telephone Colorectal Cancer Patient Support Group (meets on Thursdays from 4-5:00 p.m. EST)
These groups are both informative and supportive. Group discussions cover a range of topics such as dealing with tough side effects, not wanting to be a burden to family and friends, having limited supports both emotionally and financially, being disappointed in family and friends to communicating with one’s medical team and where to find additional supports. Group sessions can be very serious but also can be light and humorous. We emphasize being compassionate and empathetic with all of our group interactions.
Please remember that you are not alone. CancerCare support services are there to help you.
I live in Queens, New York and my brother who has stage 4 colon cancer lives in Canada. I am one of his caregivers and he will be with me in New York for two weeks soon. Is there any way I can get counseling for him? He is depressed and has not coped well with his diagnosis.A.
It is very difficult to be a long distance caregiver. I can sense that you really want to be there for your brother but are finding it hard to know exactly how. Loss of control is something that goes hand in hand with a cancer diagnosis. Sometimes it even feels that the cancer is making the decisions. It is certainly making things more difficult. CancerCare has a staff of professional oncology social workers who can provide counseling and support to both you and your brother. Please call us at 800-813-4673 to schedule an appointment. CancerCare also offers online and telephone support groups specifically for patients and caregivers.
Caregiving is a heavy burden and it is easy to put your loved one first. But thinking about your needs as well will make you a better and more able caregiver. CancerCare offers publications on our website that will help you understand the demands of caregiving and how to be prepared and ready: “Caring Advice for Caregivers: How Can You Help Yourself?” and Caregiving for Your Loved One With Cancer. Another resource is our free Connect Education Workshop™: Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally.
Family Caregiver Alliance is an organization that focuses solely on the needs of caregivers. They offer many resources on their website including the section, Caregiving Info & Advice, various publications and fact sheets, and educational webinars such as Caregiving 101: Exploring the Complexities of Family Caregiving.
The Caregiver Resource Directory includes chapters about symptom management at home and the goals of care in progressive illness.
Another helpful resource is the American Society of Clinical Oncology’s publication, Advanced Cancer Care Planning: What Patients and Families Need to Know About Their Choices When Facing a Serious Illness, which may be downloaded from their website or ordered free of charge.
And finally, the Colorectal Cancer Association of Canada website has many resources that could be helpful for your brother.
Where can I get free or low-cost colostomy supplies? I'm having a hard time paying my bills. Is there a place where I can call and talk with someone else who has a colostomy?A.
Adjusting to an ostomy can be difficult at first. With time, however, most people find them easy to manage and pain-free. Most hospitals have ostomy nurses who help with learning the steps needed to fit the appliance properly. These nurses may also be able to connect you with local resources for supplies.
Here are some resources that might be able to help:
- Friends of Man
- Osto Group (Must pay postage and a $10 handling charge)
- Convatec’s Ostomy Access Program: 800-422-8811
- United Ostomy Association of America: 800-826-0826
The United Ostomy Association of America can also connect you with peer-to-peer support as well.
Hopefully, these organizations will help with the cost of these needed supplies.