Living With a Stoma: Finding Comfort in a New Norm

Living with colorectal cancer is never easy, and even when treatment options are available, many of them are not without their drawbacks.

An ostomy is a potentially lifesaving procedure for colorectal cancer patients. It allows the body to continue removing waste in the event that the colon and/or rectum is partially or completely removed. To do so, however, requires an opening known as a stoma to be made in the abdomen. Any waste is then diverted through the hole into an external bag.

For some patients, getting an ostomy is a temporary measure to allow time for the colon to heal before the opening is sealed surgically. For others, the ostomy is permanent, and has an impact on their lives.

Living with a stoma can invoke very conflicting emotions. On one hand, the surgery may have removed cancer from your body, and you could be on the road to recovery. On the other hand, the stoma and ostomy bag you now wear has become a permanent reminder of the difficulties you’ve faced, and of how your life has changed.

Colorectal research has long looked into the long-lasting physical and emotional impacts ostomies have on patients. Through their study with eight permanent ostomy patients, Stavropoulou and team found that living with a stoma can negatively impact a patient’s quality of life. The problems ostomy patients or ‘ostomates’ face are complex and difficult. Many describe it as a traumatic experience, making it a hotbed for extreme emotions like fear and agony. One patient likened it to war scars that “remind you of that moment every day”.

Amidst the trauma are other feelings that often take root — feelings of repulsion, self-deprecation and shame, anxiety towards the change in body image, even anger, denial and sadness towards the situation. On top of that, adapting to a new way of living is easier said than done. Some patients struggle with their ostomy bags, while others experience social isolation and anxiety.

Living with a stoma is a challenging and daunting adjustment, but we want you to know that there are ways to adjust and with time, come to terms with the new norm. It’s okay to take your time.

Adjusting to life with a stoma will not happen in an instant. You may find handling your ostomy bag difficult. With time, patience and practice, managing your ostomy bag will become easier as you gain confidence. Remember that it is okay to rely on others for help.

Everyone's experience is different, and the most important thing is to be patient with yourself and to seek out help and support when you need it.

Throughout your colorectal cancer diagnosis and treatment, your body has many different changes. These changes can be emotionally harrowing and traumatic, leading you to feel anxious, depressed, or frustrated. Remember that your emotions are valid. Acknowledge these feelings and seek support from loved ones or mental health professionals if necessary.

Joining a support group or connecting with others online can also be helpful. Talking to others who have gone through a similar experience can help you feel less alone and provide a source of emotional support.

With time and support, it is possible to adapt and live a full and active life. Remember that you are not alone and that there are resources available to help you along the way. Talk to your medical team, stay positive, and take things one day at a time.

Living with an ostomy can also cause physical discomfort. Developing some healthy habits can help to prevent some of the common issues that people with a stoma may experience, such as constipation and blockages.

A healthy diet is essential for all colorectal cancer patients, but it is particularly important for those with a stoma. Certain foods can cause blockages or irritation to the stoma, or may cause constipation leading to abdominal cramps. Eating a balanced diet high in fiber and low in fat and staying hydrated is an important preventive measure. Following your ostomy, a dietitian or nutritionist will recommend specific foods that will work well for you.

Staying active can also help to maintain a healthy weight and prevent constipation. However, it's important to talk to your healthcare team before starting any new exercise regimen, as they can advise you on what level of activity is appropriate for you.

Besides looking after your physical health, keeping the skin around the stoma clean and healthy is essential. The skin should be cleaned with warm water and mild soap, and then thoroughly dried before applying the ostomy bag. It is also important to avoid using products containing alcohol or other harsh chemicals, as they can irritate the skin.

To avoid aggravating the skin around the stoma, choose the right type of ostomy bag. There are many different types and sizes of ostomy bags available, so it's important to find one that fits comfortably and securely. Your healthcare team can help you choose the right type of bag and provide guidance on how to use it effectively.

Throughout your journey with colorectal cancer, you may have experienced a loss of independence and autonomy. Perhaps relying on others has made you lose confidence, or feel like you no longer have control over your life. Even now, living with a stoma requires you to depend on others for help, and there is nothing wrong with that.

Nonetheless, you can slowly but surely regain your autonomy. It will require resolve to overcome your difficulties and fears, and may be challenging at first, but with the right information and resources, time and experience, you can succeed in managing your stoma and adapting to your new life and eventually, replicating that success will become second nature.

Bear in mind that you have been through and survived a harrowing experience with colorectal cancer. Now, you can take back your life, one baby step at a time.