Joanna Burgess, BSN, RN, CWOCN joined Fight CRC for a webinar where we talked about All Things Ostomy. We unpacked useful information for individuals preparing for and living with an ostomy. But, one hour was simply not enough to discuss this topic! 

Users submitted follow-up questions and Joanna has graciously answered! Take a look:

Q. What are some tips for preparing for ostomy surgery?

•  Be informed! You will have many questions and it is important to ask those questions. It is common to feel nervous and fearful, but your fears may be reduced when you are informed.
• Understand what kind of surgery you will be having. Ask your surgeon to fully explain the surgery you are facing and have him/her draw you a picture of what is going to happen.  This is your body and you have the right to fully know and understand what is going to happen.
•  Meet with an ostomy nurse. An ostomy nurse will explain what to expect after surgery and will show you examples of ostomy pouching systems. They will examine your abdomen to determine the best place for the surgeon to place your stoma by looking at your abdomen in all positions (lying, standing, bending and sitting) to see how your body contours move when you move. They will look for a stoma site that is away from skin folds, creases and scars to help determine the best placement for ease of independent care. Your nurse will mark the site with a surgical marker and cover it with a dressing until your surgery.
• Line up your support systems. This may include a family member, friend, chaplain or social worker. It will be important for your physical and emotional health to have support through your diagnosis and surgery.  You may be nervous about telling others about your ostomy – and it’s up to you who you tell and how. If you are not sure how to tell people, consider talking with a nurse navigator, ostomy nurse or counselor on suggestions for telling others.
• Meet with an ostomy mentor. One of the best things I am able to offer patients facing ostomy surgery is informing them that I have an ostomy myself. It is very helpful to speak with someone who has traveled a similar path. Mentors can be found through WOC nurses or through UOAA affiliated support groups. UOAA mentors have been specifically trained to work with people who are going through ostomy surgery. Mentors can also be found on online ostomy support groups such as Inspire or Colontown.

Q. How can I have a healthy recovery after surgery?

• Everyone recovers at their own pace, and it could depend on the overall physical condition prior to surgery, emotional well-being, ease at adapting to the new ostomy and the support systems in place. It is important to be patient as you adapt and recover from ostomy surgery.
• Emotions of sadness and grief are a part of this process. The goal is for you to resume the things in your life that you loved prior to surgery and find a path for getting there.  Don’t be afraid to ask for help or assistance.
• Take on Independent Care as Soon as Possible. The ability to perform self-care builds confidence and self-esteem, and it facilitates the adaptation process to the new ostomy. At the very minimum you should be able to empty the pouching system at the time of discharge from the hospital and participate in changing the pouch.
• Report any Problems Immediately. Skin and stoma problems are not normal. Report any difficulties with application of the pouching system and ongoing leakage, stoma problems such as excessive bleeding or skin issues such as pain, redness and excoriated skin. These should be reported to a health care professional right away, preferably a wound and ostomy nurse. The sooner the problem is addressed, the better the outcome for successful care.
• Exercise. Movement and exercise helps strengthen your body and build stamina. However, it is important after ostomy surgery to ease into lifting heavy objects. The stoma is supported by long muscles that are on each side of the abdomen (rectum abdominis muscles) and patients with ostomies are at risk for developing a hernia around the stoma (peristomal hernia). Be careful not to lift anything over 10 pounds for the first 6-8 weeks after surgery, then gradually build up to heavier objects. If work requires you to lift heavy objects ongoing, consider wearing an abdominal support belt while lifting. Consult with your surgeon for any restrictions on weight lifting.
• Nutrition. Follow the nutritional guidelines given to you in the hospital. General guidelines are to eat regular meals – some people do better with frequent small meals. Chew food thoroughly to prevent blockage (very important for those with ileostomies). Also, add foods back into your diet one at a time so that food intolerances can be identified. Eat slowly to avoid swallowing air, which creates more gas. Immediately post op, it is helpful to eat a low fiber diet and low gas producing foods. Work up to a normal diet.
• It is very important to drink plenty of fluids to stay hydrated (6-8 glasses a day) especially for those with an ileostomy as more water is lost through the stool.  Symptoms of dehydration include extreme thirst, dry mouth and skin, shortness of breath, decreased urine output, dark colored urine and nausea or abdominal cramping. The number one reason why a patient with a new ileostomy returns to the hospital is due to dehydration so fluid intake cannot be stressed enough!

Q. When should I call my doctor?

Call your doctor for the following reasons:

• Inability to maintain a pouch seal
• Skin issues that won’t heal after 1-2 pouch changes
• Separation of the stoma from the skin around the stoma
• Changes in color of the stoma (should remain beefy red in color)
• Changes in appearance or length of the stoma
• Prolonged abdominal pain/persistent nausea or vomiting
• Changes in output (2 days for colostomy, 8 or more hours for ileostomy)
• Feeling of sadness or depression that will not resolve
• Inability to find access to supplies

Q. What should I think about if an ostomy reversal is an option?

• Surgery for reversal of an ostomy is usually much less involved than the surgery that you had to create the ostomy. So if you are feeling nervous, keep that in mind. A typical hospital course is 3-4 days on average.
• For some patients, interrupting bowel function with a temporary ileostomy increases the chances that you will experience alterations in bowel function after reversal of your stoma. These symptoms can include rectal urgency, frequency, fragmentation of stool and incontinence. It is important that you notify your surgeon as soon as possible with these symptoms. Treatment includes behavioral strategies based on the symptoms and includes dietary modifications, incontinence products, skin care (use of barrier creams such as zinc oxide) and medications such as loperamide. More involved but helpful recommendations are pelvic muscle retraining (PMR) to regain sphincter strength and biofeedback. This therapy is done by a highly trained physical therapist.
• Some physical therapists recommend PMR prior to surgery or radiation to assess muscles and teach strategies for ongoing muscle strengthening that can be carried over after surgery. This helps to address any coordination or existing weakness prior to radiation due to chemo or post-operative recovery. If PMR is recommended after surgery, it is best to wait at least 6 weeks and with the surgeon’s approval.

For assistance with finding physical therapists who offer PMR/Biofeedback the following link may be helpful: http://www.womenshealthapta.org/pt-locator/.

Q. Does everyone with an ostomy have the option of reversal? How long will I need to wait before reversal surgery becomes an option?

• Not everyone who has an ostomy as a result of colorectal cancer treatment will be have the option of having their ostomy reversed.  Some people will need to keep their ostomy for life.
• Your surgeon will determine when an ostomy will be reversed. There are many factors that determine a reversal such as the extent of the disease, a patient’s overall health and treatment process (radiation and chemotherapy).  Most patients with temporary ostomies will have the ostomy for about 3-6 months.

Ostomy surgery is life-altering but is also lifesaving!

I have known many ostomates over my lifetime both as a nurse, a patient advocate and from my own personal experiences. I’ve enjoyed the opportunity to offer you these guidelines but more so, I hope that I have offered you hope as you anticipate ostomy surgery.

My experience is that you will find an inner strength that you never knew existed before and it will carry you forward throughout the rest of your life.

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Ostomy Resources

• Ostomy Podcast with Joanna (March 2018)
• Ostomy Webinar with Joanna (February 2017)
• Ostomy Tips – Wellness Wednesday (October 2020)
• Hiking With an Ostomy Blog (June 2018)
• Ostomy and Travel Blog (October 2016)