Whether your stoma surgery is upcoming or you are considering it as a possibility for your future, it’s natural to feel anxious about what lies ahead. A stoma changes how your body works, requiring adjustments and a new routine. However, the right preparation can help you to know what to expect and increase your confidence. This guide explains how to prepare for stoma surgery, from the research you should do beforehand to practical tips for recovery.
We’ve included insights from ostomate Harvey, who shares his honest experience of adapting to life with a stoma.
Understanding your surgery
Where do you start with understanding what stoma surgery is and how it will affect you? This can feel overwhelming, especially if it is an entirely new concept to you. It’s a good idea to do some research, but don’t worry if you feel confused. Harvey advises: “Read up about stomas and positive stories. Take things slow and digest the information at your own pace.”
Our Stoma Advice and Support hub could be a good place to start.
Understanding your stoma type
There are three main types of stoma, each serving a different purpose:
- A colostomy redirects faeces from the large intestine and is positioned on the left side of your abdomen.
- An ileostomy redirects faeces from the small intestine and is typically placed on the right side.
- A urostomy is an opening for redirected urine and is also positioned on the right side.
Which of these you have will depend on what has caused you to need a stoma. They all work slightly differently and require different types of stoma bags. Ensure you understand what type of stoma you will have and why. Many people tend to mix up colostomies and ileostomies because they are very similar. You can begin by reading our guide to What is a stoma?
Colostomies and ileostomies can also be formed as either a loop or end stoma. With a planned surgery, you’re more likely to have a loop stoma, which is often easier to reverse in the future if that becomes an option. You can read more about that in our guide Is a stoma permanent?
Ask questions
You should ask your doctor all the questions you have, but it can be hard to know what you don’t know. Here are some ideas for questions you may want to ask before your stoma surgery:
- What type of stoma will I have?
- Will I have a loop or end stoma?
- Will it be possible to have it reversed in the future?
- Is it likely to be open or keyhole surgery?
- How long will the surgery last?
- How long will I be in hospital?
- How long will recovery take?
- Are there any potential complications?
- Do I need to do anything to prepare for the surgery?
- Will I have a stoma siting appointment?
- What products will I be sent home with?
- How will I go about getting my stoma supplies delivered to me?
- Will I have follow-up appointments?
- Will the medications I am currently taking be impacted by the surgery?
- What further treatment will I need after my stoma surgery?
It can be overwhelming to remember to ask all your questions, so you may wish to write them down or bring someone with you to appointments.
Join the ostomate community
There is only so much medical information you can learn about stomas. Perhaps the most important thing is to get an idea of what life with a stoma is actually like. Why not start by exploring our Stoma Stories?
You might also consider joining a local stoma support group. Colostomy UK has a list of support groups here. This can be a chance to make friends who understand what you are going through, get advice and tackle any feelings of anxiety or loneliness.
Reading online discussions can also help. For example, there is the r/Ostomy Subreddit, many Facebook groups and plenty of ostomates on Instagram and TikTok. You could ask them questions you have about life with a stoma.
However, remember that everyone’s stoma journey is unique. While it’s helpful to learn from others’ experiences, try not to worry if your diagnosis, surgery and recovery don’t follow the exact same pattern as someone else’s.
Preparing for stoma surgery
So – your stoma surgery is approaching. What can you expect and what can you do to prepare?
Pre-operative assessment and preparation
You will likely have many pre-operative appointments with a range of medical professionals, from a colorectal surgeon or urologist, to an anaesthetist and your stoma nurse.
A pre-operative assessment ensures you’re ready for surgery. You’ll sign consent forms after discussing the risks and benefits with your medical team. This is also when you can discuss pain management options that will keep you comfortable during recovery.
The assessment may include blood tests and an ECG to check your fitness for surgery. You might need to take laxatives beforehand to prepare your bowel, but not all hospitals ask for this.
Stoma siting appointment
You may also have an appointment with a stoma nurse to determine the optimal position for your stoma. This process, called stoma siting, considers your abdominal muscles, any skin creases or dips, and where you typically wear your waistband. The nurse will use a pen to mark on your abdomen where they recommend the surgeon creates the stoma.
During this appointment, you might wear a practice stoma bag to see how it feels against your skin. This gives you a chance to understand how the bags work and raise any concerns about positioning.
How to prepare for stoma surgery
So what practical things can you do to ensure you are prepared for stoma surgery? Here are our top tips:
- Pack your hospital stay essentials such as comfortable clothes, an extra-long phone charger or battery pack, earplugs, and an eye mask.
- You may wish to batch cook and freeze meals before surgery so you won’t need to worry about cooking during recovery.
- You may want to arrange for someone to help with basic tasks like shopping, cleaning and cooking for your first few weeks at home. Even if you feel well, it’s important not to rush back to these physical tasks to avoid causing a parastomal hernia.
- Plan for adequate time off work to recover properly.
- Consider buying a mattress protector or bed pads in case of leaks while you’re learning to manage your stoma.
- Harvey also suggests, “Look at pictures of stomas, then maybe it’s not as big of a shock when you see your own.”
What to expect after stoma surgery
What will life be like following stoma surgery? These are the things we think you need to know.
Immediately following surgery
- This is major surgery, so expect some soreness and discomfort as you heal. It should be manageable with painkillers.
- Plan for plenty of rest during your initial recovery period.
- Follow your medical team’s advice regarding exercise, eating and medication. Our guide to eating with a stoma has some general advice for eating straight after surgery.
- If showering feels too challenging at first, wet wipes and no-water shampoo caps can help you feel clean and refreshed.
- Harvey explains: “Your stoma nurses will carry most of the weight in the early days. Sometimes they will change your bag for you.”
- It changes from person to person, but it will likely take weeks for the surgical site and tissue to heal.
- Your stoma will appear swollen initially, but this will reduce as healing progresses.
- Harvey says: “From day two, I was walking around the hospital ward and then it progressed around the corridors. It will be painful, but it does get better.” You may only go a few steps a day, but those steps are important progress. This could help you to recover quicker.
- You should feel significantly better by around eight weeks, though recovery times vary depending on the specific surgery you’ve had and why you needed the stoma.
- Harvey notes it took about six weeks to fully process and get used to his stoma.
- You might experience weight loss or gain.
- You may need further treatment depending on your reason for needing a stoma, such as chemotherapy.
- It’s okay to lean on family, friends or your stoma nurse. You may feel overwhelmed and emotional at this time which is completely normal.
You can learn about when you can start being active again in our guide to exercising with a stoma.
Adjusting to your stoma bag
While the stoma bag may feel uncomfortable on your abdomen at first, and you may want to constantly check it, most ostomates quickly forget it’s there. Harvey says, “I’ll go through the entire day and not feel like I’ve got a bag on.”
Harvey compares the experience of getting used to your stoma to learning a foreign language: “You don’t really have any clue at the start, but after a few weeks, you can probably speak a few sentences. It’s very much trial and error, just finding new ways of doing things and a new way of life. You have to stick with it. You have to find what’s good for you and what works.”
Dealing with leaks
You are likely to experience leaks at first, because you are not yet used to your stoma: “The world does feel like it’s on your shoulders at that point, it just ruins your day when you’re having lots of leaks. But it does get better,” Harvey says.
Try not to worry – your bag change routine will become second nature with practice. You’ll learn about the way your stoma behaves and the best way to manage it, and you shouldn’t experience many leaks going forward.
Once you’re settled, you can experiment with different products to find the pouching system that works best for you. Harvey said: “The bag you start with might not be the one you actually end with. I’m always open to trying new products.” Read our ultimate guide to stoma bags to find out more.
Life with a stoma
After your recovery, you should be able to live life as normal. Your stoma should not stop you from thriving and doing the things you love – including travelling, exercising, and going to events. Most people with a stoma can also eat whatever they like.
There is a range of unique stoma problems that you may encounter, but by paying attention to your stoma and being proactive, these should not impact your quality of life. If you experience persistent problems like leakage or skin irritation, speak to your stoma nurse. They’re there to help you troubleshoot and find solutions. Your stoma should not have a negative impact on your life; if it does, get help.
Telling others about your stoma
Sharing news about your stoma with family and friends can feel daunting. You can choose how much or little to share, and there’s no rush to tell everyone at once. Remember that true friends and family will support you regardless.
Harvey offers this perspective: “It can be a difficult conversation. Having someone close to you who can open the conversation for you can help. It’s just finding a way of doing it, but not putting too much pressure on yourself, and that’s the hardest thing.”
“If someone doesn’t like it, you don’t have to be friends with them. That’s just life.”
Today’s stoma bags are designed to be discreet, so unless you choose to tell someone, it’s highly unlikely they will ever realise you have one.
Getting support
Your stoma nurses are your primary source of support and expertise, especially in the early days. Don’t hesitate to contact them with questions or concerns, no matter how minor they might seem.
Consider connecting with stoma support organisations that offer helplines, one-to-one support, support groups, and online communities. These organisations provide invaluable support from people who truly understand what you’re experiencing. For example:
- Colostomy UK – including a 24-hour stoma helpline (for anyone with any type of stoma)
- Ileostomy and Internal Pouch Association
- Urostomy Association
- Bladder and Bowel UK
- Bladder and Bowel Community
Final thoughts
Preparing for stoma surgery involves both practical planning and mental preparation. While the prospect of major surgery and life changes can feel overwhelming, remember that thousands of people successfully adapt to life with a stoma every year and it is often a life-saving surgery.
Take things at your own pace, ask questions when you need clarity and don’t hesitate to seek support from your medical team and fellow ostomates.
Although all our articles are written alongside qualified medical professionals, this information is for guidance only and does not replace advice given by your healthcare advisors.
