Improved Quality of Life After Ostomy Surgery
Approximately 725,000 to 1 million people in the United States live with an ostomy.1Conditions that necessitate in lifesaving ostomy surgery include cancer; inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis; diverticulosis; bowel perforation; congenital disorders; neurogenic dysfunction; and constipation.2,3 After undergoing surgery, living with an ostomy can improve the quality of life for many people with these conditions. Examples also include neurogenic dysfunction, which can lead to fecal or urinary incontinence. Ostomy surgery in people with spinal cord injuries who have neurogenic bowel dysfunction has been shown to improve patient coping,4 and time spent on bowel management is significantly reduced.4 Most people who have undergone ostomy surgery for constipation or neurogenic bowel report they would choose to undergo the surgery again and would not want their stoma reversed.3,4 They would also recommend the surgery to friends or relatives with constipation.3,4
For individuals living with chronic IBD, those who have undergone ostomy surgery have an improved quality of life compared with those without an ostomy or those who have had their stoma reversed.5 The following story written by Lori Rosenberger describes her journey with ulcerative colitis through living with an ostomy and its effect on her quality of life.
LORI’S STORY
I was born 13.5 weeks premature. For 40 years, I had been taking antibiotics to protect me from illness. From these many years of antibiotic use, I experienced frequent food poisoning, diarrhea, and constipation due to antibiotic-resistant bacteria. Then, one day I collapsed at work from blood loss. I was taken to the emergency department, where I was diagnosed with ulcerative colitis. I was hospitalized to schedule surgery to remove my colon and give me an ileostomy. I panicked, asking for alternatives. I was put on prescribed medication that began to work to improve my bloody stools, severe abdominal pain, and weight loss. After 1 week, I went home and believed I was getting better.
After 5 years, I felt my body had turned on me as the old symptoms returned with increased bloody diarrhea. The medications previously prescribed at the first hospital to treat my symptoms had stopped working. The doctor changed my prescription at my follow-up appointment; this became a common occurrence. Things deteriorated to the point that what I ate went in and came out half an hour later. I got to the point at which I could not work, eat, or travel.
While visiting my parents, I became so ill that I could not leave the house. My father said that this was ridiculous and provided me with children’s pull-ups to wear. What a difference that made for me! I could finally leave the house! However, my husband freaked out when he saw me wearing children’s pull-ups. He realized the severity of my illness and that I needed medical help from another doctor/hospital.
A coworker of mine, unknown to me, was tracking my bathroom trips and how I was looking. She pulled me into her
office one day, stating that she believed I was sick with IBD and needed help. She then offered to call a colorectal center and scheduled an appointment for me. My husband traveled with me to the center. The results of a colonoscopy provided the diagnosis of antibiotic-induced ulcerative colitis.
A week later, I continued to get worse. I lost more blood and had lost 10 pounds. I underwent emergency ileostomy surgery after being educated by my surgeon and a wound, ostomy, and continence nurse. I was scared but came out feeling like a million bucks! I left the hospital after 1 week.
I no longer take any prescription medications and am leading an active life of biking, hiking, driving utility terrain vehicles, working, and enjoying the water again. With my ostomy, I go on difficult hikes, mountain-bike, and shoot. I can plan a trip and am able to go! I swim in pools and soak in hot tubs. The surgery not only saved my life, it dramatically improved my quality of life.
CLOSING REMARKS
My experience working with patients has been that having an ostomy is considered the last resort. Providers will offer additional treatments until all options are exhausted to “avoid an ostomy.” Lori’s story is very similar to many patients I care for who have IBD. Immediately after surgery, they feel better and appear healthier. After recovering from surgery, they return to leading an active life. Although patients with Crohn’s disease continue to take maintenance medications, those with ulcerative colitis can titrate off all the medications for IBD. Women of child-bearing age can carry a pregnancy and raise their families while living with their stoma.
As far as patients with incontinence or neurogenic dysfunction, I have cared for some who did their own research and requested ostomy surgery. It was never brought up by any health care provider. Patients with neurogenic bowel, especially those with spinal cord injuries, similarly report a significantly improved quality of life with their ostomy. I often have patients communicate how they wished ostomy surgery had been offered earlier. Those with spinal cord injuries may gain independence by being able to care for their own ostomy, whereas a caregiver or family member was needed to complete the bowel management program before ostomy surgery. Although many people with ostomies do not share their ostomy stories in public, ostomy surgery has often provided a superior quality of life and should not be shunned.
Sadly, I have had patients tell me when they interact with the health care system, no one wants to deal with their ostomy. There are many types of pouch systems, and it is not necessary to know how to manage them all. Most people are willing and able to share the care of their ostomy, so it is fine to ask how to assist them.
If you see a patient with an ostomy who is struggling with management of their ostomy, has leakage of their pouch system, or reports peristomal skin complications, please make sure these patients receive care from a wound, ostomy, and continence nurse or a professional who is knowledgeable in the care of the ostomy. Ostomies need to fit in patients’ lives so that the best quality of life can be achieved.
REFERENCES
1. Living with an ostomy: FAQS. United Ostomy Associations of America. 2022. Accessed March 27, 2022. https://www.ostomy.org/living-with-an-ostomy/.
2. Wound, Ostomy and Continence Nurses Society Guideline Development Task Force. WOCN Society Clinical Guideline: management of the adult patient with a fecal or urinary ostomy–an executive summary. J Wound Ostomy Continence Nurs. 2018;45(1):50-58. doi:10.1097/WON.0000000000000396
3. Iqbal F, van der Ploeg V, Adaba F, et al. Patient-reported outcome after ostomy surgery for chronic constipation. J Wound Ostomy Continence Nurs. 2018;45(4):319-325. doi:10.1097/won.0000000000000445
4. Coggrave MJ, Ingram RM, Gardner BP, Norton CS. The impact of stoma for bowel management after spinal cord injury. Spinal Cord. 2012;50(11):848-852. doi:10.1038/sc.2012.66
5. Keller R, Mazurak N, Fantasia L, et al. Quality of life in inflammatory bowel diseases: it is not all about the bowel. Intest Res. 2021;19(1):45-52. doi:10.5217/ir.2019.00135
Ms Rosenberger is a member of the United Ostomy Associations of America, Inc. (UOAA) who serves on the UOAA Education Committee. She has also previously served as a co-president of a local support group. Ms Erbe is an ostomy nurse practitioner at the Medical College of Wisconsin and has more than 30 years of experience in inpatient and clinic care settings. She is committed to improving outcomes and quality of care for patients with wounds and ostomies and serves on UOAA Education Committee. Please send inquiries to advocacy@ostomy.org. Information in this article was provided by UOAA. UOAA does not endorse particular products, manufacturers, providers, or other sellers of ostomy products. This column was not subject to the Wound Management & Prevention peer-review process.
