Sally Wright has worked as a Stoma Care Nurse for over 15 years, providing specialist care, education, and support to individuals recovering from stoma surgery within the community. Sally recognises that every patient’s recovery journey is unique, and she has a particular interest in the psychological aspects of adapting to life with a stoma. Her previous role as a Dermatology Sister highlighted the importance of emotional wellbeing whilst coming to terms with changes to our bodies and the impact on self esteem.
The first few weeks: A time for learning and healing
The first few weeks are usually about recovering from major abdominal surgery and becoming familiar with your stoma.
It is expected that you will feel tired and weak, you may also be experiencing some abdominal discomfort or pain. It is important that you listen to your body and rest when you need to. Fatigue can be one of the most frustrating aspects of recovery. You may feel that you should be doing more because you are home from hospital, but your body is still healing.
There will be some swelling around your stoma, the stoma itself and the stomach, which will reduce gradually over the following few weeks as you recover. Regular contact with your stoma care nurse will help support you during this time and check your stoma bag fits well.
A reduced appetite is common, eating little amounts and often will help. Your dietary advice will depend on whether you have a colostomy, ileostomy or another type of stoma, as well as the operation you underwent.
Often it is difficult to get a comfortable position in bed which can disturb your sleep, try curling around a pillow to prevent you from rolling onto your tummy.
Changes in bowel output are common. Often the output is watery and loose to begin with. As you start eating, it will start to thicken naturally.
Anxiety about leaks or emptying the pouch are very common. Reach out to your stoma nurse for support if this happens.
Feeling that everything is unfamiliar and overwhelming is normal. To begin with, emptying or changing your ostomy pouch may seem complicated, but over time, people develop a routine and your stoma care nurse is there to support you.
Whilst it is good to rest, it is also helpful to start doing gentle walks, which can help you gradually rebuild strength and helps with your circulation and healing. Avoid pushing yourself simply because you have had a “good day”. Recovery often involves good days followed by days when you feel exhausted. If you are unsure how far you should walk, check with your surgeon or stoma care nurse.
Months 1-2: Finding a new routine
During the second month, you may begin to feel physically stronger. You might be able to do more around the house, go out for longer and become more independent with your stoma care. However, this is also when some people realise that recovery is not simply about the physical side of surgery.
You may start wondering what your life is going to be like now…emotionally, you may experience, relief. If your stoma has brought an end to severe pain, repeated bowel problems, accidents or hospital admissions, you may feel incredibly grateful.
You might worry about, whether your stoma will work normally, having a stoma leak in public, people noticing your stoma, smells or noises, sleeping away from home, returning to work, travelling, being intimate with a partner.
These concerns are common and generally become easier as you gain experience and confidence.
Body-image concerns
Seeing your stoma for the first time can be emotionally difficult. You may dislike looking at it or feel disconnected from your body. For some people, the pouch can initially feel like a constant reminder of illness or surgery. Be patient with yourself. You do not have to love your stoma immediately.
Months 2–3: Building confidence
By around three months, many people begin to develop more confidence in managing their stoma. You are starting to learn more about how your stoma works and about which pouching system works best for you and what you need from a stoma bag:
- Learning more about diet and what food to avoid with your stoma to prevent blockages or a loose output. Which foods can help thicken loose output and those foods which may help relieve constipation. Also learning which foods agree with you now, as this may have changed since your surgery.
- You will have learnt how to manage your stoma supplies and how to order them via the delivery company and how to gain a prescription from your GP.
- What clothing feels comfortable to wear with your stoma pouch. Being aware of companies which provide underwear and swimwear for ostomates.
- Reaching out to associations for support, reading about other ostomates stoma journeys online or through blogs, finding support by talking amongst friends and loved ones.
Months 3–4: Getting back to life
Around this stage, you may begin thinking less about recovering and more about living.
You may be ready to consider:
Returning to work – speak with your surgeon about when it is safe for you to return to work. Some people return gradually, building up their strength slowly so the work and environment does not feel too overwhelming.
Driving – check with your surgeon when it is safe for you to drive again
Longer walks – Being active can also help rebuild confidence. The important thing is to increase activity gradually and follow the restrictions given by your surgeon.
Going out socially – can feel daunting at first but being prepared helps. Wearing comfortable clothes, carrying spare stoma supplies, wipes and disposal bags, and know where toilets are can help. Empty your pouch before leaving. Choose foods and drinks you know suit you. Remember that most people won’t notice your stoma.
Swimming – swimming with a stoma is usually safe around the six-week period after surgery, once all wounds have healed. If you are unsure, check with your stoma care nurse. Use a waterproof or supportive stoma cover if helpful and empty your pouch beforehand. Choose swimwear that makes you feel comfortable and confident.
Holidays – Travel confidently with a stoma by planning ahead. Pack double the medical supplies you expect to need and divide them between your hand luggage and check-in bags. Carry a travel certificate explaining your condition. Research your destination's medical facilities. Stay hydrated, especially in hot climates.
Exercise – Your abdominal muscles need time to heal, and certain activities or heavy lifting may need to be avoided initially. Slowly returning to exercise and building up your core muscles is important for your physical and mental wellbeing. Your surgeon or stoma care nurse can advise you about when particular activities are appropriate.
Dating – A stoma does not mean that relationships, intimacy or a fulfilling social life are over. Dating with a stoma requires confidence. Focus on the connection. Be honest when you are comfortable with a special person…true partners accept you fully. Your pouch does not define your worth or romance.
Body image, intimacy and relationships
You may worry that your partner will find you less attractive or wonder how anyone will react to your stoma. You might also feel uncomfortable initiating intimacy because you are worried about, your pouch, scars, how your body looks, smells or noises, leaks, pain and your partner's reaction. These concerns are understandable.
Months 4–6: Finding your “new normal”
By four to six months, some people feel considerably more confident.
You may still have difficult days, but the stoma may no longer dominate your thoughts.
Your confidence is starting to return. Some people feel confident after a few weeks. Others need considerably longer.
Emotional adjustment can change, particularly during the first several months.
Some may experience complications, additional surgery, chemotherapy or radiotherapy, the underlying illness and the type of stoma can all affect your recovery.
Try to judge your progress over weeks and months, rather than from one difficult day.
Knowing when to reach out for help is useful: if you are experiencing leaks, sore skin or issues with your output contact your stoma care nurse for support and advise.
If you feel low in mood, hopeless or unable to cope, talk to a healthcare professional such as your GP or stoma care nurse.
Where to turn for support
- Stoma Care Nurses, GP, NHS 111 for out of hours care or emergency services according to the severity of your symptoms.
- Colostomy Association
- Ileostomy and Internal Pouch Association
- Urostomy Association
Also, if you'd like to read more about stomas feel free to check out our blog. Additional reading: