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dapting to life with an ostomy can be a daunting experience, often accompanied by feelings of anxiety and depression. These emotions are natural responses to the significant changes and challenges that come with living with a stoma. It is important not to suppress and ignore these feelings and instead focus on understanding the common reasons behind these feelings and learning strategies to manage them. Doing so can significantly improve your quality of life.
Speak out
The presence of a stoma can affect how individuals perceive themselves and how they believe others see them, leading to feelings of self-consciousness and insecurity. Focusing on self-acceptance and positive body image is crucial. Speaking to your stoma nurse, or joining a support group where you can share experiences and gain confidence, can be incredibly beneficial.
Another significant emotional hurdle is mourning the loss of the ability to eliminate waste normally. Stoma-formation surgery alters your ability to use the toilet in the traditional sense, as opening the bowels or passing urine is diverted into a stoma bag attached to your abdomen. This change can feel like a loss of control over one’s body, which can be difficult to accept. There is a significant emotional burden associated with losing use of an organ, and having to re-learn and adapt to new ways of eliminating urine and faeces. It is important to recognise that feelings of mourning and loss are normal and should not be suppressed. Discussing these feelings with a stoma nurse specialist, other healthcare professionals and ostomates who have been trained as stoma buddies can provide emotional relief and support. Open communication about these emotions can lead to better understanding and acceptance. It is very important to remember, that this is a normal reaction and with time and the right support you should gradually adapt to this new way of normal. If you find this difficult, it is still important to ask for help, as some may mistake your silence as you ‘coping well’.
Close relationships
The impact of a stoma formation may extend beyond the individual, to your family and friends. Loved ones may also experience emotional stress and anxiety as they adjust to the new reality. They may worry about your wellbeing, feel uncertain about how to provide support or have difficulties with their own feelings of loss and change. This can affect relationships, sometimes leading to tension or misunderstandings. It may sometimes be difficult to start the conversation but remember that open communication is essential. Encouraging family and friends to express their feelings and concerns can foster a supportive environment. Involving them in the care process and educating them about the stoma can also help alleviate their anxieties and strengthen relationships. This does not have to be done by the ostomates alone. If you do not feel ready, it can be done by a stoma nurse, who can see you and your family in a clinic, either in-person or via video consultation, where everyone can ask questions to help them better understand life with a stoma.
Leakage
One of the most common sources of anxiety for ostomates is the fear of their bag leaking. This concern can lead to a reluctance to go out in public or participate in social activities, as the possibility of an embarrassing situation looms large. Therefore, ensuring the proper fitting of the stoma bag and using products designed to prevent leaks can help mitigate this anxiety. Regularly checking and changing the bag as needed can also provide peace of mind, although sometimes this may contribute to further anxiety; ensure changes are done regularly enough, but do not let it consume all your time. Some ostomates find it helpful to use high-waisted garments or stoma belts, which provide extra support and may positively contribute to reduced episodes of leakages. You need to remember that leakages are not normal and not part of life with a stoma, therefore, adopt a ‘zero tolerance’ to leakages mindset and always contact a stoma nurse to review you and see what causes this. Also, always ensure you look into ways to resolve any issues with leakage. Innovative leakage detection devices may be used in selected cases to provide constant monitoring and ease anxiety of unexpected leakages. Your stoma nurse can discuss these devices with you and recommend their use, if appropriate.
Maintaining supplies
Delayed or incomplete orders of stoma supplies are another very common source of anxiety for ostomates. The dependence on stoma supplies means that any delay in delivery or wrong products being sent can cause significant stress and anxiety, as ostomates rely on these products for their daily functioning. Keeping a backup stock of supplies to avoid running out and communicating with delivery companies/local pharmacies to ensure timely deliveries can help alleviate this concern. It is recommended to place your next order when you have approximately 2 weeks’ worth of supplies left, as oftentimes it may take up to 10–14 days for the delivery company/local pharmacy to obtain the prescription from your GP/prescription hub and then deliver the supply to you. You can ask your delivery company to set up a monthly reminder, so they can call you and check with you if it is time to place your next order.
Travelling
The thought of travelling with a stoma can also be daunting, with worries about managing the stoma and supplies while away from home causing significant anxiety. Planning ahead of trips, packing extra supplies and researching facilities at the destination can help alleviate these concerns. Informing travel companions about your needs can also provide additional support and reassurance. It is always a good idea to ensure you have a stoma travel certificate in different languages, which can be helpful at security checks as it explains why you have a stoma and what support you may need. These can be obtained from support groups, stoma manufacturing companies and stoma nurse specialists.
Out-of-hours support
Identifying alternative sources of support, such as specialist stoma nursing services and other telephone support services that operate outside regular working hours, including evenings and weekends, can provide reassurance, support and assistance with complications when needed. These stoma care services can often be accessed through various non-NHS providers (independent specialist nursing care or stoma products manufacturing companies), with working hours that may range from limited weekend availability to 24/7 support throughout the year. Many of these services can offer support whether you are at home or abroad, providing an extra layer of assistance to help ease any anxieties. For non-clinical support, numerous support groups also offer out-of-hours telephone assistance, focusing on daily life hints and tips, although not on complication management. These groups can be a valuable resource for practical advice and emotional support as you navigate your new normal.
Intimacy and relationships
Concerns about social interactions, intimacy and sexuality are also common. Fear of being judged or ostracised can lead to withdrawal from social activities, further contributing to feelings of isolation. Gradually reintroducing social activities, starting with small gatherings and building confidence over time, can help individuals feel more comfortable in social settings. Communicating openly with partners about concerns related to intimacy and seeking advice from stoma nurse specialists and other healthcare professionals on how to manage intimacy with a stoma can also be beneficial.
Back to work/school
Returning to work or school can be another source of stress. Concerns about being judged can hinder this process, making it difficult for individuals to reintegrate into their previous routines. Discussing the situation with employers or school administrators and requesting adjustments, if necessary, can help ease the transition back to work or school. Taking gradual steps to reintegrate can also make the process more manageable. Additionally, your stoma nurse specialist can help you by writing support letters explaining your specific needs, so your school or workplace can put things in place to better support you.
Education and preparation are also key in easing anxiety and depression. Learning as much as possible about living with a stoma, how to manage the stoma, recognising potential issues and knowing how to address them, who to contact, and what support and services are available, can help ease day-to-day distress.
Who can I turn to?
Stoma nurse specialists are crucial throughout the entire journey of an ostomate. They should act as a point of contact and as a key worker, guiding and supporting you throughout the process. Their skills and knowledge are invaluable, and of huge benefit to a smooth transition to a fulfilled life with a stoma. These healthcare professionals provide essential support, education and guidance from the initial surgery through the adaptation process and beyond. They help patients manage their stoma, address concerns and provide emotional support. The availability of stoma nurse specialists can make a significant difference in the quality of life for stoma patients, offering a reliable source of expertise and comfort. Therefore, ensure that you attend your appointments with them, and always seek advice if you have any concerns, both with your stoma or emotional wellbeing.
Support networks
Building a support network is also crucial. Connecting with others who have similar experiences can provide emotional support and practical advice. Support groups, both in-person and online, can be invaluable in this regard. Some notable support groups include Colostomy UK, the Ileostomy and Internal Pouch Association and the Urostomy Association, all of which offer advocacy, as well as lived experience advice. Online communities such as Facebook groups, the Reddit Ostomy Community and Meet an Ostomate provide platforms for sharing experiences and gaining support. Although support groups and online forums can be very helpful, it is important to always seek medical advice from a stoma nurse. Other ostomates might offer well-meaning advice based on their own experiences, but this advice could inadvertently cause harm, because what works for one person may not work for another.
Psychological support
Seeking help from mental health professionals can also be beneficial. Therapists can provide strategies to manage anxiety and depression and offer a safe space to express feelings. There are services that are designed to provide psychological support to ostomates. As the clinicians are trained and understand the needs of ostomates, they may be better suited to provide support than a conventional behavioural therapist.
Establishing routine
Practices such as mindfulness, meditation and deep breathing can also help manage concerns and anxiety, particularly in moments of acute stress. Establishing a daily routine for stoma care can help reduce anxiety. Knowing what to expect and having a plan in place can provide a sense of control. Learning how your stoma behaves and changing your stoma bag at regular times instead of waiting for it to leak, will help ease the anxiety by avoiding unexpected leaks. Most importantly, it is crucial to remember that the stoma is part of a new elimination process and remains part of one’s body. As such, the aim is to adapt to a life where the stoma fits into the daily routines and does not consume your day-to-day activities.
In conclusion, while living with an ostomy can bring about significant emotional challenges, especially in the first few months, it is possible to overcome anxieties and depression with the right strategies and support. Remember, you are not alone, and there are resources and communities available to support you on this journey. By taking proactive steps and seeking support, you and other ostomates can lead fulfilling lives despite the challenges of living with a stoma.