Ostomy support is vital for new and old ostomates, since it is life-changing and overwhelming process. Studies have shown that after ostomy surgery, patients may develop psychosocial problems that include:
- Suicidal thoughts and tendency
- Poor self-image
- Sexual disorders including impotence
“Although some people adapt well to having an ostomy, others do not. Having an ostomy placed can be a very frightening, life-changing event. The patient’s response can range anywhere from slight anxiety to anger and resentment at having the ostomy and not wanting anything to do with it. The patient may show fears about odors from the ostomy and about soiling in public. One thing that the nurse can do to help the patient and family is to let the patient vent his or her fear, anger, concern or whatever they are feeling at that time.
It is important to realize that each patient is different and will react in different ways. One patient may be relieved at having the ostomy because it may mean the end of a bout of painful Crohn’s Disease. Another patient may be scared and angry because the ostomy placement was sudden, and the patient didn’t have adequate time to prepare himself for it. Whatever the reaction, the nurse should remain empathetic and be ready to give support. In no way should the nurse force the patient to care for their ostomy until they are ready to and have gotten over the grieving process.
Educating the patient about the ostomy will come when the nurse notices signs that the patient is taking an active interest in the ostomy. If the nurse believes that the patient’s reaction to the ostomy is not what it should be, then the patient may need counseling by a mental health professional.
One of the best things for the patient may be to have a visit from a member of the United Ostomy Association of America, or UOA for short. This is a support group for people with ostomies that frequently sends its members to visit new ostomy patients in the hospital. The members come and visit with the new ostomates and talk about coping with an ostomy and how people with ostomies can live normal lives. In this way, the patient can be encouraged to believe that they can and will get through this rough time in their lives.”1
Proper emotional support and training on ostomy management contribute to successfully adjust to these new health circumstances.
“Emotional support has to be provided in connection with a rehabilitation program, leading the patient back to a normal life. Many ostomates suffer from skin problems due to a poor stoma site. The patient will benefit when the stoma site is selected before surgery, while he is standing, sitting and bending over wearing an appliance. The younger patient should get dressed to prevent any interference with a particular style of fashion preference.”2
Risks of Poor Ostomy Support
“A lack of preoperative stoma education not only results in increased stoma-related complications, increased hospital length of stay, and an overall increased cost burden on the health care system, but patients receiving inadequate preparatory stoma education often suffer from psychosocial difficulties. Waiting for the postoperative period to begin stoma education places the patient and providers at a disadvantage. As accelerated care paths and minimally invasive surgery result in shorter hospitalizations, there is less time to educate new ostomates as inpatients postoperatively. When one accounts for postoperative narcosis, anxiety, and the potentially overwhelming amount of information patients are bombarded with postoperatively, stoma care is often lost in a sea of regulatory paperwork and notices. The preoperative period, which avoids competing with postoperative hindrances, is the optimal time to build a primer of skills and knowledge better suiting the patient.”3
“Prior to planned stoma formation, there should be a provision of preoperative information, to prepare the ostomate for the stoma. Part of the preoperative care will include stoma “siting.” Stoma siting is the placement, by the stoma specialist nurse, of a mark on the abdomen where the surgeon will form the stoma. This site is placed in a position that the patient can see and reach, but the site also needs to avoid creases and scars. The siting of the stoma is undertaken with participation from the patient. The preoperative siting allows optimal positioning of the stoma by the surgeon, which may reduce the risk of postoperative complications, such as a leaking appliance. Beginning with preoperative stoma care, patients are empowered to become involved in the care of their stoma. There are practice ‘change kits’ available that the stoma specialist nurse can use with patients preoperatively to commence practical training. […] In the preoperative period, nurses are able to positively support patients so that they can begin to mentally adjust to the prospect of having a stoma.
It is essential to ensure that patients are discharged home from the hospital with an adequate understanding of the care of their stoma as this has a positive effect on their quality of life. Therefore, it is essential that during the hospital stay, the stoma specialist nurse teaches the ostomate the practical care of the stoma appliance. The basic appliance change technique will include the collection of all the necessary equipment, gentle removal of the old appliance, thorough cleaning and drying of the skin around the stoma, and then, application of the new correctly sized and placed stoma appliance, with appropriate disposal of the rubbish. It is also essential to ensure that the ostomate knows what is normal and who to seek help from if a problem occurs. The postoperative care provided by the multidisciplinary team enables the ostomate to feel supported, aiding the ostomate in the path to accepting the stoma and new body image.”4
Sources of support
1. Family support
Many ostomates fear rejection from spouses or other family members after the surgery. “There is evidence of the importance of family involvement in the process in all levels of care, including the home environment. Both within the in-hospital care and in the home environment, families are a reference for professionals to enable them to develop their plan of care. Thus, understanding the life of the family members, as relevant actors in the process and emphasized by the patient, can generate knowledge that empowers improvements in professional practice and, therefore, achieve better care with benefits to the care recipient, who is supported by the surrounding environment as a biographical place of living and experiences. In this vein, health services and professionals must be prepared and organized for this challenge, among other things, because family care is indispensable support in the process of chronic diseases, positively impacting health systems and public health.”5
Spouses wonder whether they are still attractive in their partner’s eyes. Reassurance and proof of acceptance from the person closest to the patient will improve the post-surgery adjustment period. How can a spouse show support?
- Avoid sudden body language change. Maintain your way of showing affection as before surgery.
- Maintain open communications and express your fears freely.
- Tell the patient that you are willing to adjust and accommodate their circumstances.
- Spouse ‘protection’ is important but overprotection could make the patient feel useless. Encourage your partner to do what they are comfortable in. Help when necessary but let him/her be proactive, particularly regarding ostomy care, as this will promote their self-esteem.
- Family activities and sports may encourage the patient to engage in other events in the community.
- Do not withhold intimacy once the doctor says it is safe. Be gentle and understand the discomfort and pain areas.
“When you’re healthy, your desire for sex holds a certain level of importance because your other needs are fulfilled. When illness or medical treatments interrupt your life, sex may not be so important to you. As you begin to return to a normal lifestyle, your need to regain feelings of sexuality; sexual intimacy become more important.
Linked closely to our feelings of sexuality, however, is how we think about ourselves and our bodies – our body image. It’s how we see ourselves in the mirror and how we think our body works, looks, smells and appears to others. That’s why, when something as dramatic as ostomy surgery changes our body image, our feelings of sexuality and self-esteem sometimes feel threatened, even though we’re still the same person (and often healthier) than we were before the operation. Let’s face it, even without an ostomy, developing a satisfactory sex life isn’t always easy.
Everyone, regardless of whether they have an ostomy or not, experiences sexual difficulties at some time during their life. These issues may be emotional or physical, but often can be both. Unfortunately, many individuals don’t discuss this with their partner, let alone with medical professionals or their friends. However, after ostomy surgery there can some physical and emotional changes that can have a direct impact on sexual functioning. There may be even a component of pelvic pain that is preventing you from being intimate with a partner. These changes can cause you to feel alone with your concerns. The best way to understand how these changes after ostomy surgery might affect your ability and desire to participate sexually, it is important to first understand how our cycle of sexual response worked before surgery”6
The ostomy nurse and other qualified medical professionals provide education about ostomy and its care. The support should start before surgery and continue after discharge from the hospital. If the patient has a life partner, both of them should attend these sessions.
“On many occasions, the situation that patients find when they are discharged from the hospital is devastating. They do not just have to face the traumatic situation of being aware of a body that has been surgically modified; they also face huge problems when they need specialized care, which might solve their doubts, and need to receive suitable information to adapt them to this new situation. The patient is entitled to receive specialized medical and nursing health care within the preoperative and postoperative period, whether in the hospital or in the Primary Health Care Centre. These patients are likewise entitled to receive counseling before the surgery, in order to ensure that they are fully aware of the benefits of the surgery and the essential facts about coping with a stoma”7
Accurate information can help couples and families understand the process and offer specific support. An enhanced appreciation of life after successful surgery is the desired outcome.
Social support groups
National and local ostomy support groups gather people from various backgrounds and they offer specific support to ostomates. Common forms and sources of support include:
- Information source. Brochures, guides and online information might help ostomates and their families. United Ostomy Association of America is an example.
- Ostomates and spouses meetings. Ostomates and their spouses meet and encourage one another in various ways.
- These are usually organized by ostomy associations and can be in a regional, national or even international setting. Both current and former ostomates greatly benefit from these gatherings.
- Email and telephone support. A patient can get a response to their questions or concerns any time of the day.
- Ostomy product manufacturers. Although these have commercial purposes, they are useful sources of information, as well as facilitators on forums and discussions.
- Non-profit organizations. These are groups that source funds from well-wishers to support ostomates and their families. These groups help patients, their families and also other ostomy support groups and associations. They aim to ensure that ostomates have the most recent and accurate information available.
“Whatever the reason for stoma surgery is, its purpose is to elongate the survival and help the patients to return to normal and productive life. However, the problems related with stoma cause important changes in individual’s life and also isolation from the society. The changes in physiological, psychological and social life influence the lifestyle and quality of life of the individuals. In literature there are many quantitative studies examining the psychological, physiological, sexual, compliance problems of the individuals with stoma at hospital and after discharging. But qualitative studies are limited on evaluating the experiences of individuals with a stoma after the surgery. The feelings and ideas, positive and negative conditions and the experiences about the life with stoma of the patients can only be learned with in-depth interviews.”8
“Stoma surgery has a negative impact on the quality of life in several ways, such as altered body image, sexual activity, social life, sports and leisure activities, and practical, pre-operative stoma training and motivational support are crucial to promoting patient recovery and shorter hospital stays. Stoma implies acquiring awareness of and becoming accustomed to changes and restrictions in everyday life.”9
Patients with access to ostomy support adjust better and can lead a more productive and post-surgery fulfilling life.
(1) Wittenauer, J. (2007). Caring for the ostomy Patient. National Center of Continuing Education, 20, 70-77. Available online at https://www.nursece.com/pdfs/218_ostomy.pdf
(2) Dietz, K. (1978). Skin Problems After Ostomy Surgery. Available online at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2379179/pdf/canfamphys00288-0076.pdf
(3) Wasserman, M. A., & McGee, M. F. (2017). Preoperative considerations for the ostomate. Clinics in colon and rectal surgery, 30(03), 157-161. Available online at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5498163/
(4) Burch, J. (2014). Optimal support systems for patients with stomas–an opinion piece. Nursing: Research & Reviews, 4(1), 455-64. Available online at https://www.researchgate.net/publication/269598435_Optimal_support_systems_for_patients_with_stomas_-_an_opinion_piece
(5) Ferreira-Umpiérrez, A., & Fort-Fort, Z. (2014). Experiences of family members of patients with colostomies and expectations about professional intervention. Available online at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4292603/
(6) Ory, C., Burgess-Stocks, J., Hooper, J., Elsagher, B., Shulak, F., Vega, J., Turnbull, G. (2018). United Ostomy Associations Of America Inc. Intimacy After Ostomy Surgery. Available online at https://www.ostomy.org/wp-content/uploads/2018/03/Intimacy-After-Ostomy-Surgery-Guide.pdf
(7) Nieves, C. B. D. L., Díaz, C. C., Celdrán-Mañas, M., Morales-Asencio, J. M., Hernández-Zambrano, S. M., & Hueso-Montoro, C. (2017). Ostomy patients’ perception of the health care received. Revista latino-americana de enfermagem, 25. Available online at http://www.scielo.br/pdf/rlae/v25/0104-1169-rlae-25-e2961.pdf
(8) Ceylan, H., & Vural, F. (2017). Living with stoma-A phenomenological study. Journal of Nursing Research and Practice, 1(1). Available online at https://www.pulsus.com/scholarly-articles/living-with-stoma-a-phenomenological-study.pdf
(9) Bagnasco, A., Watson, R., Zanini, M., Catania, G., Aleo, G., & Sasso, L. (2017). Developing a Stoma Acceptance Questionnaire to improve motivation to adhere to enterostoma self-care. Journal of preventive medicine and hygiene, 58(2), E190. Available online at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5584090/