It can be hard to know how to support your loved one when they have a stoma. Relationships can be complicated at the best of times but adding in stoma surgery may create feelings of fear, anxiety, and stress from both sides.
The important factor is to keep communicating with each other, talk things through, listen to each other’s questions and support each other. Encourage your loved one to open up about any concerns they may have. Providing support can have a positive impact in your partner adapting to living with a stoma.
Here are some tips on how to help your partner on their stoma journey.
Understanding why your partner needs stoma surgery
The first step in supporting your partner is to try and understand more about their bowel issue which has led them to needing stoma surgery. Offer to attend hospital appointments with your partner so you can listen to the advice given to them by their surgeon and ask any questions of your own which may help and support you both, through the next steps.
There are different types of stoma surgery, so understanding the type of stoma surgery which your partner is having, will also help you. The Stoma Care Nurse will provide plenty of advice and give you both some literature/booklets to read on stoma care, the changes in diet and what exercise your partner can do and when. These booklets are packed full of valuable information to support you both, so take the time to read them.
Possible stoma related questions to ask:
- What type of surgery will my partner have?
- How long does the stoma surgery take?
- What can we expect after stoma surgery?
- Is there anything we should know to help my partner after we leave the hospital?
- How will the surgery impact on daily activities?
- When is it safe to go on holiday with a stoma?
- Can we travel? Is flying safe? Are long car journeys safe?
- What happens after stoma surgery? Will my partner need further treatment?
Will there be side effects to the treatment?
- Will the stoma surgery interfere on a sexual intimacy?
Knowing what a stoma looks like
Understanding the basics of what a stoma looks like, can be helpful in knowing what to expect. The Stoma Care Nurse will have pictures of a stoma or a mould to show you. It is good to know that stomas are red in colour and are moist to the touch. They are all different sizes.
Generally, a stoma should not be painful, but in the first few weeks following surgery the stoma, surrounding skin and abdomen will feel very tender and appear swollen. The stoma will also have dissolvable stitches around the edges, which usually dissolve within the first 6 weeks. There will be other small scars, where the surgeon has gained entry to the abdomen to complete the surgery.
The swelling reduces over the first 6-8 weeks and the size of the stoma will also reduce with the general swelling. The Stoma Care Nurse will help to make sure the stoma appliances fit correctly during this time.
Do research on stomas to be prepared
Familiarise yourself with stoma bags, this will help once your partner is home. Offer to help get all the accessories ready for them when they are changing their stoma bag. If you feel brave enough, offer to help change or empty their stoma bag especially if they are feeling weak in the first few days once they are home.
Everything is quite exhausting and overwhelming at first and they will be grateful of the help. Remember to keep your facial expressions positive too… no one wants to see their partner grimacing at their new stoma. Encouragement maybe needed so the person with the stoma feels they are doing things correctly and independently.
Be prepared to encourage your partner to eat and drink following stoma surgery, they may have very little appetite and feel quite fatigued. Help with cooking nutritious and easily digestible food. Little and often is the key for the first few weeks and it is important to keep hydrated. Check the literature given to you on hospital discharge to ensure you are cooking digestible foods which won’t affect the stoma output.
Encourage your partner to be mobile during their stoma surgery recovery. It is important to rest, but it is also important keep moving to prevent further complications. Walking with a stoma is a great way of gently mobilising as you can build up the distance and time slowly and gradually. Just remember, wherever you both walk to, the is the return journey to complete too!
Intimacy and self-esteem
Most ostomates will experience a process where they have to come to terms with the bodily changes that will happen after stoma surgery. Adapting to a new stoma can have huge psychological effects and a stage of trying to adapt to how your body has changed.
Be prepared for your partner to feel a loss of self-esteem and have a low self-image after they have been through stoma surgery. Some days your partner may feel emotional about what they have been through, and their new stoma and scars may affect how they view their body. There maybe be a period of adjustment needed for them. Try keeping a positive attitude for them. Concerns could be discussed together, openly to support one another.
Reconfirm emotional intimacy, do things together which you used to enjoy, connect through the enjoyment of being together. Talking it through together and take things slowly, making sure you have had the green light from the surgeon before you embark on sexual relations.
Join stoma support groups
Stoma support groups, such as the Colostomy UK, Ileostomy and Internal Pouch Association and Urostomy Association are national charities who also provide support and advise to people living with stomas, their families, carers and friends. They are easily accessible if you want to talk to someone who has been through the experience.
If you are worried about your partner’s physical and emotional wellbeing, contact their Stoma Care Nurse for advice.
If you want to read more about relationships with a stoma, visit our advice centre.