Experiences and coping with the altered body image in digestive stoma patients 1

ABSTRACT Objective: to describe the coping of stoma patients with the news about the ostomy, as well as to analyze the meaning and the experience of their new bodily reality. Method: qualitative phenomenological study undertaken through semistructured interviews with 21 stoma patients. The analysis was based on the constant comparison of the data, the progressive incorporation of subjects and triangulation among researchers and stomal therapy nurses. The software Atlas.ti was used. Results: two main categories emerge: "Coping with the news about receiving a stoma" and "Meaning and experience of the new bodily reality". The informants' answer varies, showing situations that range from the natural acceptance of the process to resignation and rejection. The previous experiences of other family members, the possible reconstruction of the stoma or the type of illness act as conditioning factors. Conclusions: the coping with the news about the stoma is conditioned by the type of illness, although the normalization of the process is the trend observed in most informants. Nursing plays a fundamental role in the implementation of cognitive-behavioral interventions and other resources to promote the patients' autonomy in everything related to care for the stoma.


Introduction
Colorectal cancer (CRC) and Inflammatory Bowel Diseases (IBD) are the conditions that frequently lead to the installation of a digestive stoma. CRC ranks first in terms of incidence level and is the second cause of death in Europe in men and women, with 446,000 new cases being diagnosed each year (1) .
To cope with this situation, people make use of different coping strategies, applying new resources and skills to adapt to their new bodily reality (8) . That is described as the cognitive and behavioral efforts to respond to the specific demands in view of a situation that is perceived as problematic and that target the reestablishment of balance (9) . Based on this premise, the experience of stoma patients should be investigated with a view to understanding how they experience and cope with their new bodily reality, thus constituting a theoretical knowledge base to propose cognitivebehavioral interventions in clinical practice that help them to cope with their new situation.
In that sense, recent studies suggest that additional research is needed about the aspects that concern stoma patients and that affect their health-related quality of life (10)(11) . Other studies directly appoint the need for studies that propose a comprehensive concept of bodily change, which allows the health services to better approach these people's individual needs (12)(13) .
In line with the above, due to the need for in-depth knowledge on the suffering of digestive stoma patients concerning the change in their body image, the objective in this study was to describe how people who are going to receive a stoma cope with the news, as well as to analyze the meaning and the experience of their new bodily reality.

Method
Descriptive and qualitative study with a phenomenological focus (14) , In the data analysis, a sequential scheme was adopted, based on the constant comparison of the data and the progressive incorporation of new informants until the saturation point of the categories was reached.
The order of the analysis and the incorporation of subjects in the study was 1-4-9-8, until reaching the saturation point. An initial analysis was elaborated with one informant to establish a first code scheme; next, four interviews were held and analyzed to establish a second scheme; then, nine additional interviews were held to consolidate the findings and, finally, eight more interviews took place to saturate the information.
The procedure involved three phases: 1.
transcription of the interviews and incorporation of the field notes; 2. inductive coding of the interviews, producing a descriptive code scheme in each dimension; grouping of the codes in broad categories; 3. interpretation with detailed readings of the data, constantly comparing the codes and formulating proposals that described the properties and dimensions of each code. The software Atlas-ti was used.
A triangular three-phase analysis was undertaken: in the first phase, the same researcher who held the

Results
Two categories were obtained: "Coping with the news about receiving a stoma", with four codes distributed between two coding levels ( Figure 1) and "Meaning and experience of the new bodily reality", with nine codes and two coding levels ( Figure 2).

Receives news stoma
In this code, differences were found in the discourse of people ostomized due to a cancer process or IBD ( Figure 3).
In cancer patients, the first reaction that predominates is rejection. In some cases, after receiving information on the different alternatives for the surgery, the prognosis etc., patients shift from rejection to acceptance when they realize that it is the best option to avoid future complications. Having this information allows them to participate in the decision process on the surgery. In other cases, the ostomy is rejected as long as possible, until the situation gets that bad that it is considered the final way out to move on with one's life.

Code (2 nd level) Citations
Cancer process The information I had was that the chance of a relapse after some years was about eighty, ninety percent, and I told P.
[surgeon]: "Clean it and out", that it was the best (A1) Stoma patients due to IBD generally see the ostomy as the way to improve their quality of life, as something that will allow them to put an end to the suffering.

Reconstruction
When the stoma is temporary, it is observed that this factor contributes to better cope with the situation.
In the informants' answers, they do not mind returning to the surgery room, nor the time it takes until the operation, because they know that sooner or later their current situation will be reverted.

Meaning and experience of a new bodily reality
After the stoma is in place, a recurring question is "will I be able to live as I used to?" The subjects perceive this new situation they are confronted with discouraged and afraid. Having background experience with an ostomized relative is a conditioning factor, observing that, in some cases, it exerted negative influence, but the opposite effect in others. Some express their concern and fear about the selfcare, in terms of not knowing how to treat the stoma or how to cope with the care for it. This concern particularly emerges when the patients have to leave the hospital, so that the insecurity emerges when they are no longer covered by the health fabric that has attended to their care needs thus far. They have to learn to manage their autonomy.

What is true is that it was very scary to touch the stomas, and at first I thought I couldn't, that I wouldn't be able to (L1).
Taking care of the stoma myself, at first it looked like a cathedral to me (C2).  On the opposite, in other informants' discourse, there is concern with the fact that the others realize that they are wearing a stoma. They are afraid of feeling that they are being watched.

I find myself and I know that I have it [refers to the pouch], and I don't know if the person who is seeing me will
notice it or not (C3).
Autonomy is another key issue in this code. The informants highlight the importance of not depending on anyone or anything to take care of the stoma.
Even if a person wants to help you, you also have to try not to depend on her, but to, if you can, be self-sufficient (A2).
Other considerations on the current situation Normality rules in the informants' discourse when they refer to their current life, as the fact that they accept and adapt themselves to the digestive stoma makes it easier for people to keep on doing almost everything they used to before the intervention, as well as to maintain they plans they had for their life before the problem happened.
In some informants' discourse, this perceived normality even reaches the point of forgetting that they have a stoma on some occasions or of no longer finding the fact important. For some ostomized patients due to an oncological process, the uncertainty of not knowing whether the disease will reproduce itself or not is also at stake.

Discussion
Among the study findings, the difference between the subjects whose disease that caused the stoma is cancer and the subjects with IBD should be highlighted.
In the first case, the results show that the initial impact of the news supposes a rejection of the surgery, in contrast with the apparent normality of the second group's reaction, as part of the natural cycle of their therapeutic procedure.
When analyzing the answers of the people diagnosed with cancer in further depth, one might think that the fact of receiving the news about the diagnosis has a lesser impact than knowing that they will receive a stoma, considering the change in the bodily integrity as more threatening than the actual threat to health this diagnosis entails. Some authors indicate that physical deformities are an important source of stigma in society, which is why the fear of stigma partially explains this finding (15) . On the other hand, cancer is a disease associated with death, so that installing the stoma could intensify the perceived severity associated with the disease even further, being an invasive procedure with clear physiological and psychological consequences. These two aspects, fear of stigmatization and worsening of the perceived severity, could justify the informants' rejection of the ostomy, as if it were an attitude of avoiding the disease and the violation of their body image, accepting it only when the severity of the disease requires so, in line with other studies (8) . In this sense, the family's role is also relevant, which in some of the situations described acts as a conditioning factor for the patient to make the decision to move on with the intervention. The relevant role of the family has been demonstrated to help the ostomized subject with his social reinsertion (16) .
In addition, the worsening in the family's quality of life is observed due to the whole monitoring process (17) .
On the opposite, in the case of IBD patients, the therapeutic option of the ostomy is associated with a better quality of life. Some studies focus on this fact, concluding that, for IBD patients, the surgery is a resource needed to facilitate the symptom management and improve the quality of life (4) .
The results also highlight the importance of the person's participation in the decision process when the installation of the stoma is proposed, guaranteeing the principle of autonomy. The decision making is directly conditioned by the information the patient receives. In that sense, some studies conclude that, when the subject is informed about the need for the intervention, the impact is greater when he does not know what procedure he will be submitted to (18) .
The other central category analyzed in this study is related to the meanings and experiences the subjects manifest in view of the modification of their body after the surgery. After the surgery, the stoma patients need to cope with a new situation. Something has changed, they are not like they used to be, they have something additional they need to incorporate to reconstruct their body image. Some authors call this situation the "gain-loss dichotomy" (19) . Ostomized people do not only lose part of their body (intestinal segment), with the consequent change in their body image, in their daily routine, as well as the loss of continence, trust etc. This also implies the incorporation of a range of elements: the stoma, the pouch and the feeling of being different (12) .
One conflicting point emerges when the subjects need to face the self-care at home, where the fear and concern again appear when they do not know how to treat the stoma. The return home is supposedly one of the most complicated periods in this process (20) .

Some authors affirm that the patients manifest
shame when they perceive that they are carrying an unwanted attribute, considering hiding as a way to disguise it (15) . This situation was also described in part of the informants included in this study, who are concerned with the fact that other people might notice that they are carrying a stoma. These subjects tend to preserve control of the information about themselves, so as not to feel excluded, which is called the "Cinderella complex" (15) . On the opposite, a discourse against this situation is also predominant. Some subjects have accepted the bodily change and have reconciled it with themselves as well as with society. How long the patients have had the stoma may be an explanatory factor of this variation and of other situations described, which is an aspect to be considered in further depth in future research.
This process of rediscovering a modified body can be analyzed from a phenomenological perspective as a process of resignifying the body, considered as a vehicle through which people understand and experience their world (21) . This concept is important for clinical practice, as the health services should offer resources that help this type of patients to get reconciled with a life that has undergone a radical change, as well as to align the patients' expectations of what life with a whether temporary (22) or indwelling (23) digestive stoma can be like. In that sense, scientific evidence shows that structured educational programs for ostomized patients significantly improve their health-related quality of life (24) .
The nursing professionals play a fundamental role in these patients' self-care (25) . In this respect, the stomal therapy nurse, as a model of Advanced Nursing Practice, is an effective alternative to develop both this type of cognitive-behavioral resources and to promote the patients' autonomy in everything related to care for the stoma.
What the study limitations are concerned, qualitative research permits inquiries in concrete contexts, incorporating the specific social situation in that context. In this case, the study was undertaken with a Spanish population, which is novel in view of the lack of studies on the experiences of stoma patients in that country. Based on the discussion, it can be concluded that the findings can be transferred, in view of the results and contexts of other studies, although further research is needed to analyze the social variants that may exert influence.

Conclusion
The coping with the news about the stoma is conditioned by the type of disease that originated it. It is more ineffective for cancer patients. After the ostomy, the normalization of the process is the trend observed in most of the informants interviewed. The nursing professionals play a fundamental role for the normalization of the process, so that their activities should include the implementation of cognitive and behavioral reinforcement interventions, besides the encouragement of the digestive stoma patients' selfcare and autonomy.