Dear T.M.,

This is a profound question. When we get ill or injured and are unable to care for ourselves, we must rely on others to assist us. This is true for everyone, but ostomates have needs that are specific to that person. Therefore, it’s important to prepare ahead of time. Before you become dependent on others, identify someone who can assist with your care and advocate for you when you are unable to do so. Ask the person to be your advocate and to learn the unique care that you need.

In hospitals and long-term care facilities, nurses and other caregivers will have varying levels of knowledge and experience about caring for a person with a stoma. While your ostomy may be a primary concern, it might not be for the caregiver because they are focused on giving you proper medications, getting you nutrition, improving your mobility, etc. It’s unfortunate, but I’ve found that some don’t empty pouches until they are nearly overflowing. They don’t understand the importance of cleaning the end of the pouch. Others don’t understand the difference between ostomies. They may place a urostomy pouch on a person with an ileostomy and then voice frustration about not being able to maintain a good seal.

I tell you this, not to instill fear, but rather to highlight the importance of identifying someone who will be able to help you get the best care when you need it most. Thankfully, I’ve also encountered some very positive situations. Spouses, children, neighbors, members of religious congregations and others have stepped up and become strong caregivers and advocates for their loved one.

I’ve met several family members who, after expressing initial doubt in their ability to do so, have become champions at stoma care and pouching.

I have met the significant others of patients who have done stoma care in the hospital because they know the caregivers there have other priorities and/or may not have this skill set. Other patients have hired professional healthcare advocates who know the person’s particular needs including medications, medical history and stoma care.

Be sure your advocate knows the following: stoma type, how often you change the pouch, how often the pouch gets emptied, what supplies you use and how to order them. Put this all in writing. Prepare a “how to guide” for your stoma care. This can even include step-by-step pictures of your pouching system. Keep these instructions with a kit of supplies that you or your advocate can take with you to the hospital.

If you are admitted to the hospital, ask to see the stoma nurse who will know more than the bedside nurse about your needs and what supplies are available. Finally, be sure to educate your advocate on the importance of being proactive about your stoma care.

I’m so glad you asked this question. It is one that all ostomates and their loved ones should consider, especially since even in healthcare, we have more educating and advocating to do for people living with stomas.