Supporting a Loved One with an Ostomy: A Caregiver's Guide

February 15,2024 |
black couple embracing and smiling

Supporting a partner, friend, or family member through the adjustment to life with an ostomy can be difficult and requires both empathy and understanding. From offering pre-surgery support to addressing emotional and physical needs post-surgery, it's important to equip yourself with the necessary knowledge to offer positive, helpful support. To help, we've put together a caregiver's guide to help your loved one lead a fulfilling life after undergoing a life-changing ostomy procedure.

10 Tips for Ostomy Support of a Friend or Family Member

Living with an ostomy takes a lot of adjustment, and as a caregiver, it's important to familiarize yourself with ways to support your loved one. Consider the following tips to help the ostomate in your life with their transition.

1. Offer Support Before the Surgery

The news that you have to undergo stoma surgery can be a lot to process. Although it's a life-saving procedure, the myths and misconceptions surrounding life with an ostomy can make people feel anxious, depressed, or scared. Understand what your loved one needs during this time and try to offer support in any way you can. This may include attending their doctor's visits with them, finding professional support services to cope, and spending time managing basic personal care. Remember, even just the act of being available for someone goes a long way. Prior to surgery, it's also important to maintain some degree of normalcy so their self-esteem isn't affected. Living with an ostomy doesn't change anything about family members and friends who undergo the surgery, so you shouldn't be treating them with pity. Ask what's happening in their heads and offer yourself in whatever capacity they need.

2. Learn About Ostomy Surgery

To better understand what's involved with ostomies, it's recommended that you learn a little bit about the type of surgery your loved one will be getting. This way, you'll be able to offer appropriate physical and emotional care post-surgery. Some valuable information about the three different types of ostomy surgeries is as follows:

  • Colostomy — In colostomy surgery, a portion of the colon is diverted to create a stoma on the abdominal wall, allowing fecal waste to exit the body through a pouch attached to the stoma.
  • Ileostomy — An ileostomy involves diverting the small intestine to create a stoma, typically on the right side of the abdomen, enabling the continuous elimination of liquid stool into a pouch attached to the stoma.
  • UrostomyUrostomy surgery reroutes the urinary tract, redirecting urine flow through a stoma on the abdomen, often necessitating a specially designed pouch to collect and manage urine outside the body.

If you have any questions about the types of stomas associated with each ostomy surgery, don't hesitate to ask your loved one's doctor or stoma care nurse.

3. Provide Physical and Emotional Support

Whether your loved one has had an ostomy that's affected the bowels or the urinary system, they're going to have to adjust to life with a stoma bag. Trying to navigate how to change the ostomy pouch and associated appliances can cause a lot of stress, so try to offer as much support as possible.

Some options for physical support include:

  • Going on walks together to help get them moving
  • Offering to lift things while they recover
  • Helping them wash their hair
  • Cooking, doing laundry, running errands
  • Helping them change their bag after surgery
  • Walking their dog
  • Taking care of their children

Some options for emotional support include:

  • Being patient and empathetic
  • Listening when they need it
  • Letting ostomates vent or express frustration without interrupting
  • Trying to encourage them to get back to things they love
  • Being prepared in case of an emergency

4. Research What a Healthy Stoma Looks Like

A new stoma typically appears as a pinkish or reddish, moist, and protruding opening on the abdomen. The exact appearance can vary based on the individual's skin tone and the type of ostomy surgery performed, so it's important to discuss any concerns with your loved one's stoma nurse. Over time, the stoma may change in size and color as it heals and adjusts to its new function. It's essential to care for the stoma properly, keeping the surrounding skin clean and healthy to prevent complications. If you or your loved one have any concerns about the stoma's appearance or any signs of irritation, it's important to get professional ostomy care from a doctor.

5. Research Common Stoma Issues

You should also research common stoma issues and complications so you know when to see your doctor. Some issues, like irritation, are common, while others are rare and require immediate medical attention. Understanding what to expect can help you act before things escalate or become serious.

6. Talk to an Ostomy Nurse

Your loved one's ostomy nurse is there to help answer any and all questions either of you may have. So, don't be afraid to ask questions whenever you need to. It's always better to get more information than not have enough, as this can help you both adapt to life with an ostomy more quickly. It will also help you understand the basics of ostomy care during the transitional period of your life.

7. Consider Changes in Reactions to Certain Foods

As a new ostomate, your loved one may need to adjust their diet while their body adapts. However, many doctors agree that, as long as your digestive system doesn't get overwhelmed, there aren't any foods that you have to avoid forever. Still, some people may find that certain things give them gas or affect their stool, so they prefer to avoid it. You can read some helpful information about diets following an ostomy surgery to get better educated on what to expect. Regardless of the surgery, remember that it's still important to hydrate and eat a balanced diet with plenty of vitamins and minerals.

8. Think About What Your Loved One Needs

Your loved one may need some time to grieve, and that's okay. Any big change can be difficult to overcome. New ostomates often feel self-conscious, but support is available. Contemplate what your loved one may need; if you're unsure, just ask. Although it can be overwhelming at first, with the right support and a little adjustment, many new ostomates start to adjust and embrace a better quality of life than before abdominal surgery.

9. Be Considerate with Intimacy in New Ostomates

Having an ostomy bag can result in a loss of self-esteem while they get comfortable with their new body. This can make it hard to deal with intimacy, especially regarding sex. If your partner is the person with the stoma, don't push anything. Let them come to terms with their surgery and gain back their confidence. While it's important to talk about things openly and honestly, life may take some time to return to normalcy. However, people with ostomies can have an absolutely normal sex life and will eventually feel empowered again—it just takes time.

10. Look Into Ostomy Support Groups

The United Ostomy Associations of America (UOAA) is a national, 501(c)(3) nonprofit organization that supports, empowers, and advocates for people who have had or will have ostomy or continent diversion surgery. To help ostomates adjust to their new life and understand what's going on with their stoma, UOAA has several affiliated support groups new ostomates can attend in their area. You may have to take the lead on doing the research but try to encourage your loved one to attend, as it can make a drastic difference in their overall outlook and well-being.

Caring for someone with an ostomy requires some patience, but it’s manageable. You just need a little patience, the right support team, and high-quality ostomy supplies from Byram Healthcare. Byram Healthcare is committed to doing our part to improve the lives of those living with ostomies through convenient product delivery and a diverse ostomy product catalog. Contact us today to learn more about your options.