Introduction

An intestinal stoma (IS) is a surgically fashioned opening of the bowel onto the outer body surface. Surgery resulting in the formation of a stoma is very common, with an estimation of 102,000 people living with a stoma in the UK alone (Slater 2013). Stomas are often indicated as temporary or permanent measures to treat diseases where gastrointestinal tract integrity becomes impossible to maintain. With the advances of modern-day colorectal surgery, a larger proportion of colorectal patients now avoid permanent stomas whilst maintaining a comparable quality of life to the general population (Heikens et al. 2012). Unfortunately, despite such progress, sphincter sacrificing surgery remains common. Stoma-related issues add to the physical morbidity of colorectal surgery, and these psychological factors can lead to low self-esteem (Alves et al. 2005; Brown and Randle 2005).

Muslims can be particularly stoma averse and report significantly lower quality of life following IS surgery compared to non-Muslims, regardless of their geographic location (Holzer et al. 2005). Despite stoma counselling guidance from organisations like the Association of Coloproctology of Great Britain and Ireland (ACPGBI 2007), medical professionals may fail to appreciate or understand the impact of an IS in Muslim patients (Black 1994).

The UK Muslim population is rapidly growing and currently stands at 2.7 million persons. It is a heterogeneous mix of differing cultures with almost a third deriving from the South Asian subcontinent including Pakistan (43 %), Bangladesh (16 %) and India (8 %) with a further 6 % of Black African heritage (Office National Statistics 2013). As a population, UK Muslims have the highest reported rates of unemployment, the lowest level of education, are most likely to be living in housing associations and council housing and most likely to report ill health and disability (ONS 2013). Deprivation has a direct impact on colorectal cancer (CRC) incidence, outcomes and permanent stoma rates (Harris et al. 2009), making UK Muslims a vulnerable group in this regard. This was further supported through a recent study that showed patients of South Asian ethnic origin with colorectal cancer to be younger at age of presentation, more likely to require initial oncological treatment and less likely to undergo resectional surgery, suggesting more advanced disease at presentation (Norwood et al. 2009). Engagement with bowel cancer screening measures is also relatively poor in this population (Szczepura et al. 2008). Soulsby et al. (2011) examined quality of life (QoL) after stoma formation in a consecutive series of 122 patients from Leicester, UK. QoL was found to be significantly poorer for patients from the Asian subcontinent. Having been born outside the UK, speaking limited English and having limited contact with specialist nursing correlated negatively with QoL outcomes following IS.

Islamic faith leaders (IFL) (often referred to as Imam, Mufti or Sheikh) have significant influences within their communities (Communities and local government document 2010). Muslims who adhere to official Islamic law (Shari’ah) will often turn to IFL before making important health decisions. Such advice is often delivered through a fatwā (a ruling on a point of Islamic law given by a recognised authority). The use of fatawās (plural) to guide healthcare decision-making has become increasingly common amongst Muslims living in Islamic nations as well as secular and Western societies (Black 2009). In the USA, this practice has received recognition, leading to recommendations for clinicians to respect the need of Muslim patients’ consultation with Islamic clerics and fatwā-based permissions (Inhorn and Serour 2011).

In this article, we present our attempts at addressing the clinical concerns of Muslim colorectal patients in relation to intestinal stomas. By working together with Muslim ostomates and IFL, we have developed a series of user-directed stoma-specific fatawās covering issues including prayer, ritual ablution, pilgrimage and fasting that can be used to offer help and guidance for Muslim ostomates and their care givers.

Methods

Muslim ostomates were interviewed during routine outpatient follow-up. After seeking verbal consent, open-ended questions pertaining to general coping as well as faith-specific stoma concerns were asked. Interviews lasted approximately 30 min and were carried out in English. Notes were made during the consultations. In total, 4 male ostomates (3 Pakistani, 1 Gambian), each describing themselves as religiously devout, were interviewed. To increase the cohort size, Muslim ostomates known personally to FI (1 Bengali female, 2 Pakistani males, 2 Somali males and 1 female white British convert) were also interviewed. Demographic details were not recorded; however, all interviewees were under 50 years of age and had been ostomates for at least 1 year. Given the limitations of the cohort (predominantly younger males), we liaised with our stoma nurse colleagues to enquire about their awareness of faith-specific concerns in older and female Muslim ostomates (the Ruth Astley Centre for stoma nursing at the Heart of England NHS Trust provides ongoing stoma support to hundreds of Muslim ostomates each year). Though recognising that some information was second-hand anecdotal evidence, a series of 10 themed questions were generated from the interviews. These questions were reviewed by our cohort of ostomates and found to be satisfactory and relevant.

Islamic faith leaders representing the differing Islamic sects and ethnic faith groups that make up the Muslim community in East Birmingham, UK, were invited to attend a stoma educational event organised by the authors. Individuals from Mosques representing the South Asian, Middle Eastern, East African and European Muslim populations attended the event.

Invited Muslim ostomates (1 Gambian male and 1 Pakistani male) attended the event and shared their personal experiences with the IFL. Oral presentations were also delivered by colorectal surgeons and enterostomal therapists, introducing the IFL to stoma surgery and its associated challenges.

Our 10 themed questions relating to IS were posed to the IFL to consider further. The discussions generated were taken back to the relevant Islamic institutions, and a formal guidance on each point was attempted through the creation of a stoma-specific Islamic fatwā from each institution.

Islamic faith leaders representing Salafi Muslims (Green Lane Masjid, Birmingham) and Hanafi Muslims (Fiqh Council Birmingham) returned their initial fatawā drafts. Factual information relating to stoma indications, outcomes and complications was verified by the authors, permitting the IFL to modify their rulings with special consideration of surgical limitations and best practice guidelines. Both groups of IFL used the Quran (holy book of Islam) and the Sunnah (saying and actions of the Prophet Muhammed) as primary sources to construct their fatawās. Modern-day contemporary issues are addressed from a faith perspective through a religious process called qiaas, whereby Islamic principles and rulings are adapted to offer guidance on novel arising issues. IFL were able to construct their fatawās using qiaas and according to the specific needs of Muslim ostomates. The committee of scholars from the Fiqh council Birmingham (FCB) and Green Lane mosque are well respected in the UK with many years of experience in Islamic jurisprudence. The FCB fatwa was authored by Mufti Sarfraz Mohammed and Mufti Sajaad Muhammed, whilst the Green Lane fatwa was authored by Sheikh Dr Ahsan Hanif and colleagues. Each institution discussed the issues and came to group decisions. Fatawā drafts were then sent to prominent scholars based in Saudi Arabia (Shaykh Dr Saalih ibn AbdulAzeez as-Sindee, Associate Professor in the Faculty of Da’wah and Theology at the Islamic University of Madeenah) and Pakistan (Mufti Abu Zafr Qasimi of Darul Uloom Deoband) to verify opinions and to create a consensus viewpoint on these issues (a term called ijma). This allowed the fatawās to hold a strong utility amongst the majority of Sunni Muslims regardless of geographic location.

Results

None of the IFL (n = 10) had any prior knowledge of intestinal stomas, neither had any IFL been approached by a Muslim ostomate to discuss issues relating to stoma care, thus highlighting the taboo nature of this subject within Muslim communities.

Of the five different Islamic sect representatives who attended the stoma event (Salafi, Hanafi, Sufi, Shiā and Ikh-wani), only two returned their rulings (Salafi and Hanafi). Non-responders were not followed up. However, of those who responded, these represent two of the largest Muslim sects (almost 80 % of the total World’s Muslim population). These fatawās are now available on www.muslimostomy.com. The fatawās addressed key issues concerning IS and the core pillars of Islam including praying, ritual ablution, fasting during Ramadan and Hajj (pilgrimage to Mecca) as well as guidance on how communities should perceive Muslim ostomates, given the social isolation felt by some Muslim ostomates. Table 1 highlights the salient points of the fatawās. The fatawās were reviewed by our cohort of Muslim ostomates (n = 10) and their families (n = 5). Though not conducting a systematic evaluation, all welcomed the fatawās and were highly pleased with the final document. Moreover, our ostomates felt this process had also opened important channels of communication between the Muslim community and healthcare providers.

Table 1 Key points from our stoma-specific fatwa
Full size table

Discussion

It is clear that the presence of an ostomy has a consistently negative impact on quality of life for patients of Islamic origin above and beyond what might be expected for ostomates of any, or no, faith (Holzer et al. 2005). Muslims with stomas experience significant isolation within their society, particularly in scenarios involving congregational prayer. In a study of 178 patients who had undergone curative surgery for colorectal carcinoma in Turkey, quality of life was significantly poorer in the abdominoperineal resection group compared to those who underwent sphincter-saving surgery. Patients who had undergone AP resection were also significantly more likely to have stopped praying daily (either alone or in a mosque) and fasting during Ramadan (Kuzu et al. 2002).

Fatawās are non-binding legal opinions or advisory rulings given by an individual scholar or committee of scholars based upon a particular interpretation of Shar’iah (Islamic law). The methodology of how fatawās are constructed and their validity in the Muslim population has been described in detail elsewhere (Black 2009). Some fatawās have opposed the use of modern medical therapies; in 1998, it was reported that the Egyptian Sheikh Mohammed Metwali Sharawi had called the practice of organ transplantation a ‘blasphemy’ and against God’s will (Darwich 1998). In 2011, when investigating Western Muslims’ views on organ donation, Sharif et al. (2011) found that these were still heavily influenced by Quranic teachings and Islamic faith leaders, with advice from doctors and health organisations holding the least influence. Modern-day fatwā councils are made up of a committee of scholars usually from the same sect who often consult with impartial experts to verify facts before delivering fatwas; this has, in part, helped to avoid fatawās that oppose modern medicine. We have tried to emulate this process by acting as the impartial experts. The first-ever-reported stoma-related fatwā was by Sheikh Abd Allah Abd-Alkalik Al Mishad of Egypt in 1987 (Al-Mishad 1987). In this document, the sheikh made a brief ruling relating to prayer only and failed to address the many other obstacles to faith that can arise when living as a Muslim ostomate. Our cohort of Muslims found this fatwa to be dated and limiting in its scope and breadth. A further stoma-specific fatwā was issued by the Indonesian Muslim council in 2009 (Indonesian Ruling Board 2009). This was a more comprehensive document that aimed to illuminate the Islamic principles behind the fatwā, but was poorly translated into English and thus difficult to understand as concluded by our cohort of Muslim ostomates.

It has been shown that collaborations between healthcare providers and faith institutions to address public health concerns can lead to better health outcomes, as demonstrated in countries with pandemic HIV and AIDS (Maman et al. 2009; Ucheaga and Hartwig 2010). In the UK, the faith in health partnership between NHS Tower Hamlets and The London Muslim centre was created with an aim to increase the awareness amongst the Muslim community of the available health services, to educate IFL on common chronic diseases and to increase community participation in health screening. Since its conception, this venture led to improved health outcomes for diseases including Tuberculosis, H1N1 influenza and childhood obesity (Faith in health project 2012).

This project is, to our knowledge, the first of its kind to explicitly explore faith issues pertaining to Muslim ostomates leading to the creation of multiple fatawās and done so as a collaborative effort between IFL, colorectal specialists and Muslim ostomates. There was a dearth of knowledge amongst our local IFL relating to Muslim ostomates and their concerns, and through this initiative, we have identified an efficient method of educating IFL on this important health issue. The process has allowed IFL to create informed fatawās based on the realities of modern stoma care and to the specific needs of Muslim ostomates. Islam is not a monolithic religion and it is entirely possible for IFL to differ over a point or ruling. To address this, we invited the major sects of Islam to our educational event to represent all of the available opinions. The final fatawās are written according to Hanafi and Salafi scholarship (Sunni sects), accounting for at least 80 % of the global Muslim population (Pew 2012). Our fatawās can therefore be adopted by ostomates from many countries that follow these particular denominations of Islam. Self-perceived religiosity and degrees of practicing faith are complicated issues in most religions, not just in Islam. The issues and solutions presented in our fatawās are therefore not relevant for all Muslim ostomates. Furthermore, some ostomates may even disagree with our fatawās, both in their concept and delivery, and choose to follow their own interpretation of Shariah. Muslims interpret fatwas differently within particular heath and healthcare contexts explaining why fatwas do not automatically translate into one set of actions. Shiā Muslims rely upon Ayatollahs to issue fatawās, we have recently uploaded a shia-specific fatwa on www.muslimostomy.com.

The aim of disseminating our commissioned fatawās amongst stoma charities, medical organisations, hospitals and Islamic institutions is ongoing. This is in recognition that the fatawās are currently written in English and would require translation into different languages to maximise their utility. It is also recognised that our fatawās were written in response to issues raised by UK-based Muslims who were able to speak English. It is likely that other issues particularly from older and female patients including those who are unable to speak English, may still be left unresolved. Collaboration with Muslims in other non-UK countries will strengthen the fatawās further. These fatawās will, however, undergo revisions in accordance with new issues raised by Muslim ostomates.

It is hoped that specialists in colorectal disease will also use these documents to understand more about the needs of this population. When treating a Muslim who requires an intestinal stoma, as with all patients, every effort should be made to optimise QoL outcomes after stoma surgery; involvement of an enterostomal therapist should be mandatory and simple adjuncts, such as colostomy irrigation, may be helpful (Luke et al. 2012). However, we recommend that issues relating to religious practices should be discussed at the consent stage, and this may be facilitated through the use of our documents or website (www.muslimostomy.com). Good ostomy support and pre- and postoperative health-related and religious counselling has been shown to positively impact religious behaviours in Muslims after IS surgery (Celasin et al. 2011). Moreover, there is also evidence that, if an enquiry about faith is sought by the surgeon from the patient, trust is increased and outcomes improve (Taylor et al. 2011). Working with a predominately Muslim patient population, Kuzu et al. (2002) advocated preoperative counselling to highlight any religious obstacles to an intestinal stoma through an informed counselling process that included dialogue with local religious authorities.

Conclusions

The needs and anxieties of ostomates are complex and numerous. Muslim patients will have further specific faith-based concerns, and collaboration with religious leaders and reference to our stoma-specific fatawās may help to overcome these specific challenges. Whilst working to produce optimum QoL outcomes for their patients, healthcare workers are ideally placed to open up channels of communication between Muslims and their faith leaders. It is entirely possible for allied specialities to utilise our methods to address the faith needs of Muslims in relation to other chronic diseases.