Ostomy Tips and Tricks
If your doctor has told you that you need to have ostomy surgery, you might feel overwhelmed and have questions. Ostomy surgery is commonly performed in patients with Crohn’s disease or ulcerative colitis, and it can provide a new lease on life—a life with fewer hospitalizations and less pain.
So, what exactly is ostomy surgery? Ostomy surgery is a procedure that allows stool to pass through a surgically created opening in the body (a stoma) to discharge bodily waste. Your stoma is the part of the bowel (small or large intestine) that pokes out of your abdominal wall and provides an opening for waste to pass out of. The waste is then collected from your stoma into an external ostomy pouch (i.e., a bag) or appliance which is adhered to your abdomen on the outside of your body.
There are two common types of ostomies for IBD patients named for the part of the intestine that is opened. An ileostomy is an opening from part of the small intestine (called the ileum) and a colostomy is an opening from part of the large intestine (colon). Your ostomy may or may not be permanent, but recovery from surgery will be similar.
Your ostomy care team
Before and after your surgery, you will have an ostomy care team that helps teach you how to care for your ostomy. This will consist of your gastroenterologist, surgeon, and healthcare professionals specializing in ostomy care. An ostomy management specialist (OMS) is a healthcare professional who completed a board certification in ostomy management. Wound, ostomy, and continence care nurses (WOCN) specialize in the treatment of skin, unhealed and chronic wounds, ostomies, and ulcers. These specialists, along with your healthcare team, will help teach you how to care for your ostomy. They will answer your questions, provide training, and give you an overview of the supplies you or your child may need.
It’s important to talk to your healthcare team about what you can expect post-surgery. Immediately following ostomy surgery, patients can experience output as high as 1.5 liters a day. As time passes, the output will decrease as the ileum picks up some of the fluid and electrolyte absorption previously done by the colon. It is important to stay hydrated. The majority of readmission is due to dehydration; therefore, it is very important to drink rehydration fluids (containing sodium, glucose, and amino acids). Always call your provider if you have an abrupt decrease in output, concerns about obstruction, or experience pain or a new protrusion.
Recovering from ostomy surgery may take some time - be patient with your progress! Below are some helpful tips and tricks from healthcare providers and fellow IBD ostomy patients to help in your day-to-day life, as well as planning for special occasions.
Caring for your ostomy
After ostomy surgery, you will work with your care team to learn how to care for your ostomy. This will include understanding how to change your ostomy appliance, care for the skin around your stoma, avoid leaks, manage your output, manage odor, and more.
Living with an ostomy
Adjusting to your new normal - life with an ostomy - will take some time. You will likely notice a drastic improvement in how you feel immediately, but it's important that you take time to learn your new body and the adjustments you need to make in your daily life.
Having ostomy surgery can be life changing. For some, it may seem devastating, but for others it may bring a sense of relief. It’s normal for ostomy patients to experience concerns about self-care, self-esteem, body image, relationships, work, and daily life after surgery. It’s important to check in with yourself about how you are feeling and seek help when needed. Here are some tips on managing your emotional health when planning for ostomy surgery:
Acknowledge the positives: you will generally feel better and have a better quality of life after ostomy surgery
Acknowledge the downside: you should also recognize the hard times they have experienced; it is ok to feel sad and grieve that your body is not working as intended.
Learn as much as you can: the more you know about living with an ostomy can help lessen any fears and dismiss any myths.
Seek guidance from a mental health professional: getting an ostomy is a big life change and talking to a professional can help
Find support: connect with others who have had similar experiences through Foundation support groups or our Power of Two Mentoring Program. You can also connect with others living with an ostomy through support groups offered by UOAA.
For parents, kids, and teens
Child and caregiver tips
As a parent, you may have a lot of questions and concerns about how to support your child as they get used to life with an ostomy. Learning as much you can about your child’s ostomy is the best way to support them during this life change. Ostomy surgery can be difficult for your child and family members to adjust to. Here are some ways you can show your support as a caregiver:
Be open: Your child may not want to discuss their ostomy with everyone around them, and that’s okay. However, it’s important to guide open conversations around them about their ostomy to encourage them to feel comfortable asking questions or raising concerns when needed.
Be understanding: Children who undergo ostomy surgery may have additional physical needs temporarily, such as pain control and adjusting to a stoma, and it important to listen to how they are feeling. The calmer and more accepting you are about the stoma, the easier it will be for your child to accept it.
For very young patients: Very young children may accept their ostomy faster than parents or people around them. Young children are quick to adapt and may feel that their ostomy is just a natural part of them.
For teenagers: Adolescence can already be a difficult time due to puberty and body image issues, and an ostomy can cause additional stress for teens. It’s important to check in with your teen regularly to see how they are adjusting and discuss mental health concerns with your teen’s healthcare team. Click here for more information about mental health and teens with IBD.
Children and teens with ostomies may need certain accommodations at school, like having the ability to store extra supplies, access to a specific bathroom, or extra time to change their appliance during school hours. For more information about planning with your child, see Taking IBD to School.
Hear from others:
“I had my ostomy surgery as a child. One thing that my parents did for me that was extremely helpful was related to school. Every year my mom would go in and talk to all of the staff. She also got it set up to where I could use the staff's restroom for when I needed to go to the bathroom or change my bag. This relieved so much stress for me.”
-Megan, IBD Patient
As a college student with an ostomy, you may have questions about how to handle class schedules, activities, living on campus, and more. It’s important to schedule a meeting with your school’s health center before arriving or returning to campus to make sure they are aware of your ostomy and your needs. You don’t need to tell everyone about your ostomy, but it may be helpful to tell certain teachers or housing directors as you may be able to receive certain accommodations and get the support you need. Click here for more information about support services and accommodations at school.
Hear from others:
“I enrolled in a full-time MBA while I had my ostomy. I had conversations with my professors at the beginning of each semester, letting them know that there would be times when I would need to quietly excuse myself from class due to a health issue. They did not ask any further questions but were happy that I let them know."
-Anthony, IBD patient
United Ostomy Associations of American, Inc.
A (501)(c)(3) non profit organization that supports, empowers, and advocates for people who have had or who will have ostomy or continent diversion surgery.
Grateful Patient Foundation/Alive & Kicking
Education, support, and community resources for ostomy patients
This program is generously supported, in part, by Hollister
This project was created in partnership with:
Thank you to our content reviewers and contributors:
George Salamy, Richard Rood, MD, and The Crohn’s & Colitis Foundation’s Ostomy Workgroup