“Intestinal stomas (ostomies) are created for a variety of reasons, including inflammatory bowel disease, cancer, trauma, and acute diverticulitis. An estimated 1 million people in the United States and Canada have ostomies, with this number increasing by an annual rate of 100,000. Ostomies result in loss of control of intestinal contents, both stool and gas. Previous studies have demonstrated that patients with ostomies have decreased health-related quality of life (HRQOL). Specifically, ostomates have been shown to have significant difficulty with sexual relationships, stomal care, physical appearance, and travel.”1
It is never easy for an ostomate to face the new situation and lifestyle changes that come after the surgery. Many fears and insecurities start to show up for them all of a sudden, and they realize that they are not content anymore. Having a stoma bag may lead to leaking risks, and not being sure how to have a healthy life as they did before. There’s also stress during night time since the patient is not certain if a leakage accident may occur, or what side they should sleep on to avoid bag pressure. And so many new situations they did not have to think about before. This situation usually makes the new ostomates very insecure, depressed and isolated.
“Patients with stomas face many problems, both physical and psychological. Leakage caused by failure of adhesive or bag welds, ballooning of bags, poor siting, and difficulty in keeping bags in place are some of the daily problems. Anxiety and embarrassment over a stoma may lead to an alteration in lifestyle, including the ability to find work, desire to travel, and overall self-image. The way patients feel about the changes in their bodies can affect their behavior toward family and friends; problems with sex life also occur. Some patients have initial problems with diet and clothing, but most are thought to adapt with time. The inconvenience and distress caused by this need to adapt and by other changes in lifestyle and body image related to stomas are poorly documented.”2
“An estimated 18% to 26% of patients with colostomies experience psychological symptoms within the first 3 months of surgery. The most common symptoms are adjustment disorder with anxious or depressed mood, major depressive disorder, panic disorder, social phobia, and generalized anxiety disorder. In a population of 500 cancer patients, 50% reported feeling depressed following colostomy creation, and 10% considered or attempted suicide. The validity of early study findings has been questioned because of a lack of standardized methods and instruments.”3
Find proper guidance and advice
Getting professional mental health guidance and education is vital for the new ostomates. Listening to other ostomates’ experiences and being educated on how they can cope with their individual situation is crucial to confront it, and achieve a more relaxed everyday lifestyle.
“Problems can occur in the adaptation process following ostomy surgery secondary to its negative physical and mental impacts. New ostomy pouches developed with advances in technology can decrease the problems of leakage, odor, and ballooning that interfered with the activities of daily living that ostomy patients endured in the past. In our study, ostomy patients, when compared to the control group, had disturbances in self-esteem, body image, marital adjustment, and sexual functioning (excluding impotence and premature ejaculation). Sexual dysfunction was especially prominent in females. Female patients with a psychiatric history had more frequent vaginismus. There were no differences found between ileostomy and colostomy patients in terms of sexual functioning; however, both groups had significant disturbances compared to the controls and the frequency of impotence decreased with time. In couples with higher levels of education, an increase in the frequency of sexual intercourse and improvement in sexual communication, as well as improvement in marital adjustment, was seen. Individuals with a better sense of body image were more compatible with their spouses. Being informed about the results of the surgery did not have a significant effect on sexual functioning, body image, self-esteem, or marital adjustment.”4
Mostly for new ostomates but every once in a while or every two to three months psychological help is valuable for any stoma patient because they might face new challenges and lifestyle situations they did not have to face before and don’t know how to feel free or secure to do so now. Like going to the beach or visiting an amusement park or playing sports. These are not new situations but become new soon after they have had their colostomy, ileostomy or urostomy, not knowing how they can do prior normal activities after having the surgery can make these patients very depressed. Receiving professional and experienced help, education, and guidance will help prevent more extended depression periods that can even turn suicidal in some cases.
“In a Scottish study, the correlation between the changes brought about by the colostomy bag and the psychological aspects of patients in a sample of 86 people during the one to four months after surgery was evaluated. Half of the participants reported the sensation of having lost control of their own body and therefore avoided social and leisure activities, and the odor led them to social isolation. Specialized assistance from a stoma therapist, along with psychological support, helped in the rehabilitation of these patients.”5
To begin with, professional education from the nurses at hospital sites and psychological help are vital for any ostomate. Guiding them through and after the process gives them confidence and lets them know that it will be just a matter of time before they are able to feel free, relaxed and used to their new lifestyle.
“Because most patients are first-time ostomates, many do not have prior experience of a stoma. Before discharge, the priority of postoperative education is to prepare patients for stoma self-care. The need to acquire all practical skills for stoma care within the short period of hospitalization may lead to psychological distress among patients. Practical skills include learning that the pouch change requires intricate skills such as cutting the pouch to fit the stoma, aligning the pouch properly with the stoma, and applying the pouch to avoid creases and leakages. In addition to the pouch change, patients also were expected to learn to clean their stoma, identify stoma complications, and understand lifestyle changes such as adopting a low-residue diet and avoiding lifting heavy objects. The uncertainty of whether they could manage their stoma independently caused fear, insecurity, and anxiety among these patients. Therefore, preparation for discharge was considered a stressful event for many patients, and psychological support should be provided alongside postoperative education.”6
It is imperative for the patient to listen to other ostomates who have had the surgery and have been using the ostomy bag for a long time. They can share significant life experiences and tips on how to deal with similar daily situations.
The role of health organizations in ostomy counselling
“There is also a need for reflection on the organization of the health system to include adequate care for patients with stoma in order to integrate them into society as citizens and to include new demands for care. For this to occur, it is not enough to recognize only the changes related to the physical and corporal dimension; it is necessary that the health professionals offer support for the inclusion of these patients in society. Adaptation after hospital discharge may be favored by effective coping with embarrassment situations, with the understanding of their anguish, fears and doubts during the surgical treatment, since the physical and psychoemotional preparation until the adaptation to the changes caused by the stoma in their life. The care from health professionals should go much further than providing kits, booklets and self-care guidance regarding the colostomy and the collection bag. Expanding the possibilities of active social life despite the need for adaptations is also important. In addition, spaces for discussion of social prejudice and stigmas can be disseminated in society for the implementation of integral care.”7
Regardless if they had recent surgery or have been an ostomate for months or years, psychological and mental support from a specialist, family or ostomates groups is always beneficial and needed.
“The possible negative psychological outcomes and emotional issues arising from the stoma make it essential the provision of comprehensive patient care, with an interdisciplinary and specialized approach to the needs of patients and their families, with a view to full physical, emotional and social recovery towards rehabilitation. It is necessary to prepare patients, mainly during the perioperative period, when they experience anxiety and distress before the unknown – the “stoma”. This preparation must include pre-operative education, demarcation of the stoma and guidance on self-care for patients and their families, in the postoperative period, as well as the referral to the Assistance Program for Stoma patients of the Unified Health System (SUS).”8
“It can be seen that ostomates require various support systems to help them cope with their newly formed stoma. These may include health care professionals, their social network, as well as spiritual support. Learning to live with a stoma needs adjustment to the changed body image and the new way in which the ostomy now eliminates waste products. There is evidence to show that a good support system can aid the adaptation process, whereas complications, either preoperatively or with the stoma, can result in delays in the ostomate adjusting to their new stoma.”9
(1, 3) Overcoming challenges: life with an ostomy. Popek, S., Grant, M., Gemmill, R., Christopher S. Wendel, M.S., M. Jane Mohler, Ph.D., Susan M. Rawl, Ph.D., Carol M. Baldwin, Ph.D., Clifford Y. Ko, M.D., C. Max Schmidt, M.D., Robert S. Krouse. https://www.americanjournalofsurgery.com/article/S0002-9610(10)00452-6/fulltext
(2) Quality of Life in Stoma Patients. Karen P. Nugent, M.S., Phyll Daniels, Beverley Stewart, Roy Patankar, Colin D. Johnson, M. Dis Colon Rectum. 1999. https://link.springer.com/article/10.1007/BF02236209
(4) The Effect of Permanent Ostomy on Body Image, Self-Esteem, Marital Adjustment, and Sexual Functioning. Kilic, E., Taycan, O., Korkut Belli, A. & Özmen, M. Turkish Journal of Psychiatry. 2007. https://es.scribd.com/document/218910003/The-Effect-of-Permanent-Ostomy-on-Body-Image-Self-Esteem-Marital-Adjustment-And-Sexual-Functioning
(5, 7, 8) Psychological aspects of patients with intestinal stoma: integrative review. Michelato Silva, N., Antônio dos Santos, M., Rodrigues Rosado, S., Galvão, C.M. & Megumi Sonobe, H. 2017. http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-11692017000100608&lng=en&tlng=en
(6) Stressors Relating to Patient Psychological Health Following Stoma Surgery: An Integrated Literature Review. Giap Marcus, S., Chen, H-C., Chiew Siah, R-J., He, H-G. and Klainin-Yobas, P. Oncology Nursing Forum. 2013. https://pdfs.semanticscholar.org/d25b/fefa8f964795f1571043d3e69430f213f8d7.pdf
(9) Optimal support systems for patients with stomas – an opinion piece. Jennie Burch. Dove Medical Press Limited. 2014. https://www.dovepress.com/optimal-support-systems-for-patients-with-stomas-ndash-an-opinion-piec-peer-reviewed-fulltext-article-NRR