4.1 Characteristics of Participants
Fifteen persons living with colostomy interviewed in this study were mostly females and between the ages of 18–65 years. The minimum educational level attained was primary education and the maximum was senior high education, suggesting a relatively low educational attainment. Most of the participants were Christians, with only one Muslim. Most of them had temporal colostomy conditions, and three participants reported permanent colostomy conditions, with a minimum and maximum stoma duration of 3 months and 19 months (1 year and 7 months) respectively. Participants had at least one child and a maximum number of four children. Nine participants were married, three were divorced, two of them were single and cohabiting respectively, while one was a widow. All participants were self-employed in the informal sector. Table 1 describes participants’ demographic information.
The findings are presented narratively under two main objectives that informed this study: a) to explore and describe the experiences and challenges of colostomy patients; b) to describe colostomy patients’ coping mechanisms (source of resilience) to their experiences. Under each of these objectives, sub-themes are developed to enhance the presentation of findings as illustrated in Table 2:
4.2.1 Experiences and challenges (risk factors) of colostomy patients
This theme describes various risk factors that characterise the experiences of individuals living with a colostomy. Numerous sub-themes underlying this major theme identified were: (1) social stigmatisation; (2) social isolation/withdrawal; (3) sex-related challenges; (4) psychological experiences and challenges; (5) suicidal ideation; (6) physiological experiences and challenges; (7) dietary/eating challenges; (8) difficulties caring for colostomy; (9) skin disorders; (10) cost of colostomy accessories; and (11) work restrictions.
Perceived and actual social stigmatisation:
Most participants revealed that their experiences living with a colostomy are characterised by perceived and actual stigma from social networks (immediate family members) and generalised others (friends and other members of society). For some participants, there were perceptions that others in the communities they reside in and at their various workplaces will stigmatise them upon knowing their condition. For instance, the account of CP007 revealed how reluctant she was to go out of her home and subsequently stopped her apprenticeship because of how uncertain she is concerning the reactions from others since they talk too much: “I cannot even go out because of the colostomy… I stopped because I don’t want any to know that I have a colostomy. People talk a lot and I don’t know what they will say if they see me with a colostomy.” CP007 explains how the distended nature of the colostomy bag could lead to her being stigmatised by others when in public: “The colostomy bag sometimes bulges in the dress I wear people may see it and they may start to point their hands at me when I am in public” (CP007). This was supported by an explanation offered by CP003. To her, she has decided not to inform anyone because of how they will be pointing fingers at and gossiping about her when they get to know of her condition. She explained citing an instance where she refused to provide actual information about her condition to a friend of hers:
“I could remember I went out once and a friend of mine’s hand hit it. She asked me what it was but… I had to lie and say I am wearing a corset… I have not informed anybody. I am afraid when I inform people, they will end up telling everybody…. I am afraid people will end up pointing their hands at me when I am in gatherings. Some of my colleagues sometimes ask what has bulged up in my dress especially when I wear a certain dress but I still do not tell them it is a colostomy. They may start pointing their hands and gossiping about me.” (CP003)
Another recounted: “…I am scared of what people will say if they see me in this situation. Most people do not know I have a colostomy.” (CP011)
The above accounts however suggest that stigma expressed towards individuals with colostomy may not be straightforward. But rather dependent on people’s knowledge and awareness of their conditions, implying that enacted or actual stigmatisation does not occur when their significant and generalised others lack such information about them. Therefore, others’ knowledge and awareness of one’s colostomy condition, as discussed above, facilitates stigmatisation from other members of the public. For CP008 for instance, his condition resulted in various negative reactions from others to the extent that his wife’s family linked his condition to one who has been cursed. This is exemplified in his elucidations of his experiences:
“…But recently when people heard of my condition, they stopped collecting my funeral donations (contributions) because they said I’m sick. Some even see it as a curse that might have resulted from me wronging someone. For some too, it is very strange to them for a normal person to be having his faeces on his abdomen… Mmmmm… is not easy. …my wife’s family even attributed it to some spiritual thing…” (CP008)
The above was corroborated by CP006 and CP005, who narrated how their friends who are aware of their condition, sometimes pass derogatory comments, using their condition to tease them:
“…Few of my friends know I have a colostomy……., sometimes they make teasing comments which are unfavourable and act as if I cannot be involved in any activity due to my situation …” (CP006)
“…Sometimes my friends…… hmmmm, we used to eat and play together but following my surgery, eating with me has stopped. Their teasing comments and attitudes towards me now is just unacceptable! .” (CP005)
While nuclear and extended family members are considered to be primary sources of support to an individual in times of difficulties, especially in healthcare navigation [45, 46] such as colostomates, findings from this study proved otherwise. This is because some participants shared on how their family members stigmatised them. However, this was mainly gendered in nature. The Ghanaian cultural and traditional orientation assign domestic roles including cooking to the female gender, and women with colostomy in performing such roles experience greater challenges with stigma from other family members. Some female participants shared their experiences regarding how their family members refused to eat foods cooked by them, arguing that they could not eat food cooked from the same hands these colostomates use in cleaning their faeces. They shared their stories:
“…Please, it is only my mother that when I cook, she eats. Nobody in the house eats food cooked by me. This is because they said the same hand I used to pour my faeces is the same hands I used to cook.” (CP004)
“The most painful aspect is when I cook, nobody wants to eat the food, not even my mother. They said I am dirty. My faeces are on my abdomen and I can’t use the same hands I use for cleaning my colostomy to be cooking. I feel like an outcast in my home. They said I may have the wronged someone for the person to have cast a spell on me…” (CP003)
One participant was observed to have internalised stereotypes held by others towards persons with a colostomy. This resulted in her engaging in self-stigmatising, considering herself as not being a human since he could no longer pass faecal matters through his anus: “…With the colostomy with me, I do not see myself as normal. No, I am not normal at all… Mmmmmm… As a human being, you have to pass faeces through your anus. For as long as this colostomy is there, I feel less of human…” (CP002)
Social isolation and withdrawal are other risk factors identified from the narratives of participants. Social withdrawal and isolation arise when an individual is disconnected from opportunities for interaction with others, i.e. when restraining behaviours are triggered by a person due to anxiety or fear evoked by the anticipation of others in a social situation [47, 48]. It is gleaned from most definitions that social withdrawal or isolation is initiated by a person. However, there is evidence that the actions of others could trigger social withdrawal and isolation. For example, stigmatisation and the absence of support from family  and the public. Participants described that the absence of the required support coupled with enacted stigma from those who otherwise should have offered them support causes them to feel socially isolated and withdrawn from all forms of opportunities to interact with others. This is caused by the unbearable odour and shyness because of the stoma. CP004 stated how he has isolated and withdrawn himself from his children because of his colostomy condition: “For my older child, she is staying with my mother. Because of the colostomy, I do not stay with any of my children” (CP004). One participant contended that leakages and offensive odour characterising her colostomy has constrained their ability to interact with others, causing her not to attend church. This is what she had to say: “…When the colostomy bag becomes heavy, the plaster tries to detach which causes leakages on me. I do not attend church now; I used to but have stopped…” (CP006). She added that those who may not know she has colostomy might touch the colostomy which could cause problems for her: “…but those who do not know about my condition may touch the colostomy site, which may create a problem for me. Therefore, I do not attend church services. I do not attend any gathering because of the colostomy…” (CP006). Another argued how the colostomy has altered his way of interacting with others and limited his ability to attend programmes he is invited to:
“…Also, I always smell offensive because of the odour, even when I cover myself with a cloth while sleeping. So, I can’t go out… I am a very sociable person, liked by people. I am scared that someone unknowingly may hug me and smell the odour. Therefore, when I am being invited for a programme I do not attend…” (CP010)
Besides, participants who were married recounted that the creation of their colostomy has resulted in challenges in their marriage. CP004 and CP005 for example indicated that their relationships with their partners have been unstable since their colostomies were created:
“…Since the creation of this colostomy, my fiancée, took care of me until I was discharged from KATH. After my discharge, he broke up with and has stopped taking care of me… he said I have made him spend too much money on the creation of the colostomy…”. (CP004)
“…I used to go there [his wife’s place]. Even last week, I went there two times. For more than one year now, we have not been together… We have not been together since the colostomy was created.” (CP005).
Unlike other participants who withdrew and isolated themselves, for CP006, his withdrawal from his nuclear family was initiated by his wife’s family. He narrated his experience saying: “…The family of my wife has prevented refused the lady bringing the child to me because of my condition… They said there are some rituals for me to do before they can allow the lady to bring the child to my house. Even when I call my wife, she tells me they will becoming to my house but they never come…” (CP006). He further cited an instance where he was exploited economically using his child’s health which might not have happened in the absence of the colostomy, and he was close to his nuclear family: “…One day she called me that the child was sick, not knowing it was a lie. She had planned with the mother to take my money. I sent her the money not knowing the child was not sick” (CP006). Similar to CP006’s situation, CP0015 who was initially socially active and the outgoing type changed when his colostomy was created. According to him, he has withdrawn himself from such types of interactions even with his family members due to the possibility of disgracing himself (colostomy leaking) during public gatherings. His situation is even worsened by the fact that the performance of his fatherly roles towards his children have been altered:
“Since the colostomy was created, I do not go for gatherings anymore. I was the outing type that goes out with friends and my family. But now, I am always at home because if I am not careful with it, I disgrace myself among gathering… I used to send my children out for outings a lot. However, since the creation of the colostomy, I am not able to do that again. My children always ask when I am taking them out. I have to forge excuses for them…” (CP009)
These findings depict situations where individuals with colostomy could not engage in social interactions publicly and even with their families. Garnered from this study is the fact that colostomy presents individuals with challenges in terms of social connectedness and social functioning. This could have implications for the mental health  of those living with either temporal or permanent colostomies.
The sexual functioning of individuals with colostomy was affected. This was mainly due to an altered sexual desire. For instance, CP010 explained how his normal pattern of intimate sexual life with his partner was affected since his wife is scared of the stoma: “My wife says she is afraid of the colostomy. I do not want to force her to have an affair with her. Therefore, since the creation of the colostomy I have never had an affair with my wife…” (CP010). This was supported by a female participant, CP011, who revealed that her feeling for sex has been altered, and she sees herself to be sexually unattractive because of the faeces she has on her:
“As for sex, I do not have any feelings for it. Looking at myself, I am always having faeces on me. How can I enjoy sex? My husband even understands. For more than a year now I have not had any sexual intimacy” (CP011).
From the above, such impairments could have numerous implications for couples. Health wise, not having sexual intimacy could affect Colostomates and their partners since it could trigger distress. Female Colostomates for example, who could not offer sexual satisfaction to their partners might feel insecure since their partners are likely to seek such services elsewhere. This could contribute to heightened sorrow for such persons. Sociologically, sexual intimacy between married couples is seen to facilitate procreation and lineage continuity for men, especially in the Ghanaian traditional society. Such impairment in this regard implies that the primary role of the family as an institution of procreation and family continuity becomes impossible in a way.
Psychological experiences and challenges:
This sub-theme comprises psychological risk factors experienced by individuals living with a colostomy. Almost all but two participants show that the colostomy has serious psychological and behavioural implications as suggested by . Participants bemoaned that they are worried and depressed because of the leakages and odour associated with the colostomy. This was described by some participants as follows: “I have a very bad feeling about the colostomy… Everything about the colostomy is bad, leakages, odour…… am worried and depressed.” (CP005). The reasons informing such worries and psychological disturbances were advanced by some participants, CP005 and CP009, who emphasised the leakages and inability to nurture their children respectively:
“…Sometimes when I am walking and faeces leak out of the colostomy bag, it disturbs me a lot… Because of this leakage I sometimes feel so ashamed of myself. I am not happy at all. It is not easy at all to live with this condition… it really disturbs me and get me depressed.” (CP005)
“…Sometimes I feel very sorrowful. The way I used to cater and nurture my children but I cannot do that anymore. It is worrying ooo….” (CP009)
Anxiety was also observed among some participants. These apprehensions characterising the emotional and psychological wellbeing of individuals with colostomy emanate from the notion that there is the prospect that doctors might not be able to reverse the stoma created, as espoused by CP010:
“I think a lot about this colostomy. It has given me sleepless nights. Sometimes I say in case they decide not to reverse it, what will I do? I will think a lot about this colostomy. I am not happy with the colostomy at all…” (CP010)
Here, the findings portray how negatively the psychological and mental health of individuals living with colostomy were threatened by their challenges and experiences.
In addition to the psychological impact participants faced, a few of them expressed how least resilient they could be. They indicated that because of how depressed, worried and, how anxious they were concerning the future made them physiologically vulnerable to suicidal intentions. According to them: “…I have a lot of bad feelings with the colostomy. Sometimes I even feel like ending my life because of this thing…” (CP008). This was affirmed by another participant: “I think a lot sometimes… Sometimes I feel like taking medicine to kill myself…” (CP011). Suicidal intentions of persons living colostomy as documented in this study is not startling. As emphasised in the literature on resilience, mental health, and suicide, when persons living with colostomy have low psychological resilience it increases their poor mental health (depression, anxiety, and negative emotions), and predisposes them to suicidal intentions [51, 52]. Thus, positive emotions are important in the resilient ability of Colostomates to rebound from their stressors.
Physiological experiences and challenges
Aside from earlier experiences and challenges highlighted above, physiological risks were emphasised by participants to threaten their wellbeing. One sub-theme evident in the accounts of participants related to their experience of pain. As explained by CP002 for instance, she experienced a bloated abdomen and pains at the stoma site: “…The problem occurs when my abdomen gets distended… I am also experiencing pains at the incision site as a result of the colostomy.” (CP002). The experience of physical pain reverberated in the comments of CP010 when he was recounting his lived experiences with a colostomy. He had this to say: “…Sometimes too my abdomen could pain me a lot.” (CP010)
Another health problem encountered by persons living with colostomy was the absence of physical strength. One of the participants described how unhealthy she is after the stoma was created: “…the colostomy has made me unhealthy. I am always shivering when I am trying to walk…” (CP002). When asked if it was because of the stoma created, she confidently answered: “Yes… I was well until the colostomy was created.” (CP002). CP010 reiterated while explicating her condition because she could not eat as required: “…I’m not strong anymore. How can I be strong if I do not eat as I used to? If I eat hard food, I get constipated faeces. Because of that, my energy level is down. Most of the times I am very weak. (CP010). She further showed how her physical appearance has been “The colostomy has also changed me a lot physically. Even my appearance has changed…” (CP010)
The absence of physical strength and ensuing poor health expressed by participants was found to be due to decisions made concerning their diets. For instance, participants highlighted that they stopped eating high fibre diets, green leafy vegetables as well as gas producing foods such as beans, egg, and milk. This was a self-initiated approach to control flatulence, bowel movement and leakages. Consequently, the nutritional status and physical strengths of these Colostomates was compromised. This is illustrated in the quotes below:
“Mmm… now, the food I eat has even changed. The moment I eat corn foods or ‘kontomire’1, the colostomy gets filled up and the faeces will just start to leak on me, no matter the amount of Imodium I take, the faeces will not constipate. When that happens, I could apply about five bags for a day. So, for now, I do not eat corn foods unless refined corn foods. Although they were my favourite foods…” (CP011)
“Beans, eggs and milk are protein food and nutritious, but I get bloated and pass out air frequently, hence, I have stopped eating them.” (CP009)
“I stopped eating foods that contains a lot of fiber and green leafy vegetables although I used to like them a lot. I stopped because when I eat them, I experiences a lot of diarrhoea and stomach pains.” (CP008)
The above submission suggests that for some persons living with a colostomy, diets must be carefully chosen to avoid challenges associated with caring for the stoma. This brings to bear another challenge faced when caring for the stoma as discoursed below.
Difficulties caring for colostomy:
The findings revealed further that some participants had difficulties caring for their stoma. This is because some participants did not receive education on how to dress their stoma prior to their discharge and visits to the hospital. This was typified by a participant, CP011, who argued that he had problems applying the colostomy bag on his stoma personally, despite several attempts at learning how to do it:
“…Even today before the arrival of the ostomy nurse I could not dress after bathing. I only have put wipes on it and waited for her. I have tried on my own to learn how to apply the colostomy bag, but I am not able to. I was not taught how to do it during my discharge. ” (CP011)
CP001 narrated the difficulty faced in taking care of her stoma, even at the hospital when the stoma was initially created: “…When it was first done at KATH, the doctors said the stoma has a gap (dehiscence). They could not use the colostomy bag on the stoma… So I am not able to do it on my own.”
Skin allergies from leakages and stoma care-related accessories such as plaster were recognised among some participants. In some situations, participants were presented with the difficulty of determining which plasters their skin was allergic to, and this could be known only when they get rashes from using specific plasters, as explained by some participants:
“…Other times too, the plaster could give me rashes when I use the one my body is allergic to. Mmmm… for this condition, it is not easy living with it…” (CP006)
“…I get rashes on my skin when the colostomy leaks.” (CP003)
However, these skin irritations depended on the duration of the colostomy bag, and leakages of the faeces on the skin. To CP005, he starts to experience rashes when he uses a colostomy bag for a very long time due to monetary constraints:
“…But at times when I do not have money, I buy the ones that cannot be opened. I wear it for a long time which gives me a lot of rashes around the skin of the stoma.” (CP005).
The problem of skin irritations caused by the leakage of faecal matters on Colostomates skin was identified in the narratives of another participant who explained that her stoma had a gap, making it impossible for the stoma bag to be used, causing leakages which in turn resulted in skin wounds: “…They were using pampers, any time it gets to soak it pours on my skin; this gave me many wounds… I could not even use the normal adhesive plaster because it gives me…” (CP001). This finding from participants, especially on the difficulties faced in caring for their stoma gives credence to the fact that not only are stoma accessories important, but financial prowess as well.
Cost of colostomy accessories:
The cost of care and stoma care-related accessories were found to be a major economic challenge encountered by individuals living with a colostomy. Although the National Health Insurance Scheme (NHIS) is one of the initiatives in the healthcare sector that reduces the cost of healthcare for Ghanaians, the case was different for those with a colostomy. The NHIS policy does not cover some health conditions with colostomy surgeries inclusive. Due to this, participants have to bear the high cost of colostomy bags and other commodities needed to care for their stoma. One participant explained this: “…Also, we buy everything; the gloves, the normal saline, the wipes, the colostomy bag - everything I buy to clean the stoma... The NHIS does not cater for the cost of anything when I go for reviews” (CP002). She added the cost incurred when dressing her stoma at the hospital daily, suggesting that financially, those with colostomy are burdened: “…Even when I go to KATH to dress the stoma, they charge 20 Ghana cedis [USD 2.7]… So, if I decide to dress it every day, each day is 20 Ghana cedis [USD 2.7]. Just imagine the cost involved for this for the months that I have lived with it…” (CP002).
The cost of the colostomy bag was noted to be expensive according to participants. To CP003, changing her colostomy bad frequently, i.e., every three days coupled with reviews, require lots of money. And this had burdened her financially. She indicated:
“The colostomy has really affected me financially ……. changing the colostomy bag every three days. All require money… and the reviews charges as well.” (CP003)
The high-priced colostomy bags which pose financial burdens on participants was further reiterated by another participant. To him, he required 7 colostomy bags during his travel but could not afford that since it is very expensive: “…The colostomy bag is very expensive, and I cannot afford seven colostomy bags in order to travel…” (CP004). This evidence explains that adequate financial resources are central to proper stoma care (i.e., frequent change of colostomy bags and use of adhesive plaster with no or less discomfort). This denotes that individuals without sufficient money could not afford proper and comfortable care for their stoma, as seen in the following response by CP011:
“The colostomy bag too, it is very expensive, 20 Ghana Cedis [USD 2.7] for one. I could not even use the normal adhesive plaster because it gives me rashes. The one that is good for me is about 120 Ghana Cedis [USD 16.7]. I buy one each month.” (CP011)
The financial constraints faced by persons living with a colostomy, and their inability to afford high-priced stoma accessories are tied to the fact that they are not able to work. While participants were mainly employed in the informal sector, they were faced with work restrictions. Persons living with colostomy found it difficult to work after the colostomy was created for them. CP010 who was a farmer before his condition shared how the colostomy prevents him from working, affecting him financially:
“I am not able to work with the after the colostomy. I am a farmer but I’m not able to work with it, it has really affected me financially… Most of the times I am very weak and not able to do work on the farm again. (CP010)
A participant, CP006 explained how his condition results in loss of job opportunities from his customers: “Before the colostomy was created, I used to do carpentry work but after the colostomy, I don’t get work to do anymore.” He claimed additionally that upon customers getting to know his condition, he losses these job opportunities. These customers are of the view that they fear complications could arise from honouring their requests and might be blamed for such complications. Hence, they will not even attempt to offer him any work opportunity in the first place:
“…My customers feel I may get injured if they give me work to do… mmm… people say maybe when I climb up it may cause more injury, so I should wait until the colostomy is returned. I sometimes feel I can work but my customers are scared that if they give me work to do and an injury occurs, to them, the public may blame them. So, nobody gives me work to do.” (CP006)
Complications characterising the use of a colostomy condition vindicated the notion held by CP006’s customers. Some participants confirmed that they experienced severe waist pains in an attempt to perform some work duties: “…when I bend down and get up after picking my working tools from the ground, I feel so much pain at the site of the stoma” (CP005). He explained however that this restricts his roles at construction sites when called by his friend to work with them, to avoid serious complications: “…Even sometimes they want me to also climb up for the construction work but I do not because I am scared it may bring me many problems. My friends sometimes get annoyed but I do not climb.” (CP005)
4.2.2 Coping strategies (protective factors) of colostomy patients
The experiences and challenges outlined above notwithstanding, persons living with colostomy continue to negotiate such challenges and experiences. This section highlights responses on the colostomates’ sources of resilience to these risk factors (experiences and challenges associated with living with a colostomy). That is the protective or promotive factors that enhance the resilience of colostomates. Five sub-themes are identified: (i) social support; (ii) spirituality and religion; (iii) lifestyle modifications; (iv) nutritional and pharmacological strategies; and (v) improvised stoma accessories.
This theme addresses the support persons living with colostomy received from their families, friends, community members, and religious institutions (churches). The findings depict that social support extended to participants was multidimensional and varied in terms of the source. Most participants received support in the form of physical care and financial assistance. Some participants, CP001 and CP003, indicated how instrumental financial remittances from families and friends contributed to their resilience:
“…What helped me is that most of my family members lived outside Ghana. They bring me money for my care. So, I am able to pay the stoma nurse who comes home to take care of me every other weeks…” (CP001)
“…It is my friends and my classmates that support me. Please, it is my friends that send me money. When it is time for me to come for review, I call my friends and they send me money… Mmmmmm… my father is a cocoa farmer, but his farming is down now. He is always borrowing from people to assist me for review and cater for me when my friends do not send me money.” (CP003)
Different kinds of care, aside from financial support, were identified as a form of support provided to participants. These were shown among some participants, CP011, and C005 for instance, who detailed the kind of care support they receive from others: While CP005 shared that he gets food from his sister; CP011 however was physically cared for, having his colostomy dressed and the bag applied by his daughter:
…My elder sister, when she cooks, she gives me some to eat…” (CP005); “…I have a daughter who is at the nurses training school, so she sometimes comes home to dress the stoma and applies the colostomy bag for me…” (CP011)
Moreover, one participant added that he was given information on how to care for his stoma and control the bad odour. His narrative explains that, unlike the others who obtained instrumental supports, his was augmented with informational support:
“…It is the nurses who dress the stoma that tells me that if I do not keep the stoma clean, it will smell. They also teach me how to dress the stoma and control the odour… I can now do it myself at home” (CP006)
As well, a few participants made it known that they received emotional support from others. This includes calling to check up on them and encouraging them amidst their woes. This was shared by some participants as follows:
“…As for my church… but they sometimes call to find how I’m doing.” (CP002); “…My pastor sometimes calls to enquire about my health and encourages me emotionally.” (CP008)
“…One stoma nurse really helped me and gave me words of encouragement. He was the one who has made me who I am today…” (CP004)
These findings are consistent with literature [53, 54]. These studies opine that social support is in four forms: emotional, instrumental, appraisal/evaluative, and informational. In this study, however, supports received by persons living with colostomy reflected the characteristics of emotional support, instrumental support, and informational support, mainly from three sources including friends, family, and significant others.
Spirituality and religion:
According to the findings, participants expressed hope and faith in God as a major source of resilience to cope with adversities associated with their condition. Their responses express the fact that persons living with colostomy rely on their religious beliefs to cope with the challenges they are subjected to. This is illustrated in the expressions below:
“…I am only praying for the day that the colostomy will be returned for me, for everything to be normal for me.” (CP010); …I am only praying that I get money so that when the time is due, the doctors will reverse it for me.” (CP003) …I have a lot of hope that God will help…” (CP001)
Some participants, in affirming how their faith helps them to cope with their experiences and challenges, cited instances that make them take solace in God and their religion:
“…When I encountered this colostomy, I realized that my God has power. When the colostomy was created at KATH, I was on admission with one woman at C4. Her colostomy was created at another hospital. She came to me to inform me that she is awake from bed, it is left with me. Just a day after, the nurse informed me that she is dead. The nurse also added that for you God loves you. So, I have hope that God has saved me, it is left for it to be manifested for human beings to see.” (CP003)
“…But I know God does what he wants. Yes, I have 100% hope in Christ. If not Christ, where would I have been by now? When I was still on admission, a friend of mine was bitten by his puppy and he died. But for me, I was shot at my abdomen and my intestine protruded out. But I’m still alive. I have a lot of hope in Christ.” (CP006)
Confirming the use of spirituality as a coping mechanism, CP010 explained how his faith manifested in situations where he was hard-pressed financially: “…it is God who is my helper. Sometimes when I don’t have any money, when I cry to God, before I realized, He will just bring someone to assist me.” (CP010)
Self-acceptance/accepting one’s condition:
To remain resilient in the face of their experiences and challenges, the choice to accept one’s condition (i.e., stoma condition) was identified among some participants. This psychological adaption expressed by participants portrays how willing they are to adjust their life to cope with the stoma. This was shown by CP010: “…Though I’m unhappy about it, I have to accept it and wait for the day they would close it for me.” Another participant added: “…Mmmm… I accept it like that because it has already happened…” (CP006)
For some participants, lifestyle modification was used as a strategy to cope with the challenges faced. This technique was popular among individuals who experience stigma from other members of society, and leakages. One lifestyle modification strategy used by participants was to confine themselves at home. For CP006 however, he had to confine himself in the room due to how his colostomy bag leaks: “… and stay at home.” In most parts of Ghana, it is difficult to access public places of convenience (i.e., toilet facilities), which in the case of these participants, is not helpful. Also, the design of public toilet facilities is not Colostomates friendly, hence participants modified their life to be more home bound. This was confirmed by another participant, CP001, who stated that she stays at home so that she can easily empty the colostomy bag when it is full: “…I normally stay at home so that the moment the colostomy bag is full, I can easily empty it into my closet. You know our public toilet facilities have no privacy and resources for this…”. For CP001, and CP005, aside from staying at home, when it is necessary to go out, they change the kind of dresses and style of the dresses they wear and wear corsets to make the colostomy bag less visible or invisible to others:
“…I have even changed my dresses to maternity gowns so as to make it invisible to the public…” (CP001).
“I go out, it is just that any time I want to go out, I put on a corset especially if I want to be among gatherings. This is because the colostomy bag bulges out when it is filled with faeces or air. So, when I put on the corset, it reduces the bulging out of it.” (CP005)
Findings on modification of one’s dresses and dressing style as documented in this study support the concept of camouflage, as a means to address social withdrawal and isolation. Similar to literature [55, 56], persons living with colostomy exhibit behaviours comprising masking or hiding aspects of their body (i.e., stoma) from other members of the public using clothing.
Nutritional and pharmacological strategies:
With this strategy, some participants who lived with colostomy relied on medications prescribed for them by health experts, and dietary modifications to remain resilient amidst the challenges faced with leakages. For example, CP004 and CP006 explained how they coped with leakages by taking medications such as Imodium to constipate the bowel:
“…The problem occurs when my abdomen gets distended but I try to manage it with the medicine.” (CP002)
“…I take Imodium so that I can constipate for the faeces not to leak on myself. It was prescribed for me by the hospital.” (CP004)
Besides, participants who desired to attend social gatherings took these medications to cause them to constipate throughout the period they spend outside their homes:
“When I am about to go for weddings that I think the colostomy may bulge out, I take Imodium and DF118 (Dihydrocodeine), about one tablet each. It was prescribed by my doctor but I take it because I know it causes constipation and that may help my outing. I don’t take it every day but when I am going out, I take it. When I take it, the faeces constipate so throughout the day I don’t see any faeces.” (CP003)
While others relied on medications, some participants also modified the contents of their diets. This approach is evidenced in the responses of CP010 and CP011 who explained:
“For now, I don’t eat roughpage-based foods…… This has reduced by bowel movement drastically… ” (CP010)
“The moment I eat corn foods or ‘kontomire’, the colostomy gets filled up and the faeces will just start to leak on me, no matter the amount of Imodium I take, the faeces will not constipate… So for now, I do not eat corn foods or rouphage diets unless refined corn foods. Although they were my favourite foods.” (CP011)
Improvised stoma accessories:
To cope with the highly expensive colostomy bags which were unaffordable to participants, improvisations were made. Diapers were used as substitutes for the colostomy bags till participants could afford to purchase a colostomy bag. CP006 describes how he uses diapers when he has no money to purchase a colostomy bag:
“…Even I was left with only one colostomy bag that I apply to come here for the interview. Sometimes, when I don’t have money to purchase the colostomy bag, I use the adult size diapers. I apply the adult diaper around my waist…” (CP006). He added that in most situations, he is given a colostomy bag on credit by a nurse: “…Most at times, I get some of the colostomy bags from the colostomy nurses on credit… It is one of the ostomy nurses who has been giving me some on credit. Even currently, I’m owing her.”
In the same vein, CP008 also confirmed using diapers and purchasing colostomy bags on credit from health providers, when he has no money to buy a colostomy bag:
“…Other times too I even use the adult diapers as colostomy bags if I do not have money to purchase a colostomy bag. I sometimes even buy the colostomy bag from the nurses on credit…” (CP008)
1Kontomire also known as Taro leaves in English, is a leafy vegetable mostly used in preparing Ghanaian dishes. Usually, kontomire serves as an accompaniment to dishes like yam, rice and even used in preparing soup in some parts of Ghana. The word ‘kontomire’ is of an Akan origin.