What is Stomiskolen?
Stomiskolen is a resource for anyone who has, or is about to receive, a stoma.
It is also a resource for those who love or care for someone with, or about to receive, a stoma. It is useful for relatives as well as healthcare professionals who wish to better understand the experiences of people living with a stoma. Here you will find a collection of experiences from people who have been in a similar situation to yours – experiences gathered to provide tips and advice during a difficult phase of life, and perhaps even answers to the questions you may have. Sometimes, it is simply about answering the question: Will it get better?
Medical and professional information about stomas can be found on this website.
The information here is experience-based and is meant as a supplement to medical and professional guidance.
Stomiskolen has been developed in collaboration with people living with a stoma. Personal, direct, and honest questions have been asked – and heartfelt, vulnerable, and genuine answers have been given – to support you in a situation that others themselves have once faced.
Here you will find experiences from people of different ages, from 18 and up, and with different reasons for having a stoma. Some received a stoma after emergency surgery, others as part of treatment for long-term chronic bowel diseases, and some in connection with cancer treatment. These experiences cover doubt, frustration, fear, grief, and hope – from both patients and relatives – all gathered in one place, for you, your loved ones, and healthcare professionals.
Stomiskolen has been developed with support from Stiftelsen Dam.
Before Surgery
Here you will find a collection of experiences that have been helpful for others in similar situations – or that they wish they had known about before their stoma surgery.
There are many emotions tied to the idea of receiving a stoma. Being ill is frustrating, frightening, and exhausting. There are also practical concerns. What should I do? How do I prepare? Who should I talk to? What should I wear? It can simply feel overwhelming.
A stoma can become necessary at any age, and experiences will vary from person to person. We have gathered stories from people aged 18 and over, sharing both challenges and advice to make everyday life with a stoma easier.
What can you do before surgery?
Some people receive a set date for planned surgery, while others wake up with a stoma after an emergency. A stoma may be necessary as treatment for chronic bowel disease, cancer, or congenital conditions, among other reasons. In any case, the experience can feel traumatic. But if you have time to prepare, these shared experiences may help make things a little easier.
Mental preparation:
If possible, preparing yourself mentally for both the hospital stay and the physical change can be helpful. It may sound obvious, but actually setting aside time to think about and prepare for such a major challenge – both physically and mentally – can be a valuable resource when you are in the middle of it.
Information:
Before your hospital stay, you will receive a lot of information, which can feel overwhelming and intimidating. But this information is there to help you. If you manage to sort and organize it, this time can feel less frightening. Being curious, asking questions, and writing things down are good strategies. Be open to receiving the guidance you are given and follow hospital instructions as best you can. Remember: no question is a stupid question. It may sound like a cliché, but it’s true.
Practical preparation:
Plan as much as you can, both physically and mentally. Reducing outside worries – such as arranging for someone to walk the dog or feed the cat, or sorting out finances – can relieve some pressure. Physical activity may also help, whether that means a tough workout or simply a short walk to a café.
Who can be a resource for you?
In difficult situations, it is easy to forget who your most important resources are. It’s also tempting to fall into the “Google trap.”
Although the internet can be useful, few things compare to the support of those closest to you. Talk with family and friends – they are often the ones who best understand how this affects you personally. If you don’t have close relatives or friends to lean on, there are support groups and professionals available. No one has to face this alone.
Healthcare professionals are another valuable resource. Doctors, surgeons, and stoma nurses often have deep knowledge and can be good conversation partners when you need to understand or process what you’re facing.
Those who live with a stoma also carry valuable experiences – and are often willing to share them if you ask. More than 24,000 people live with a stoma in Norway today, and many can be a valuable resource for you in a similar situation.
Talk with friends and family – questions and worries are bound to come up, and discussing them often helps. Living with a stoma is common, even if those around you don’t have direct experience. NORILCO also offers conversations with trained peer supporters. You don’t have to be a member to access this service.
A peer supporter is someone with personal experience of bowel cancer, a stoma, or a reservoir, either as a patient or as a relative. They use their experience to support others facing similar challenges. A peer supporter listens, cares, and shares their knowledge. They aim to help others adjust to a new life situation and manage everyday challenges. All peer supporters are trained and bound by confidentiality. It’s important to know that you are not alone, and help is available.
Remember, you are your most important resource. Even if it isn’t always clear what you need, you know yourself best. You probably have some sense of what motivates you, what gives you energy, and what may help you through difficult times. Allow yourself to focus on what matters to you, and be open to support. Share this with your family, friends, and healthcare providers so they can better support you.
What were you worried about?
Many concerns arise when facing stoma surgery.
Will I be able to travel? Will I stay active? What about work? What can I eat? Will I ever eat what I want again? What clothes can I wear? Will it hurt?
A major, traumatic change to the body and self-image naturally raises such questions.
Will my partner still find me attractive after I get a stoma bag? Will others accept me? How will intimacy and sex be? Am I different now? Am I no longer myself?
Feeling “different” can be heavy. Worries about smell, noise, appearance, leaks, and care can feel overwhelming.
Young or old, male, female, or in between – a change to your body is often a big burden. And while you may control many things, you can rarely control your thoughts and emotions. Know this: others have felt what you are feeling now. Others have felt what you will feel tomorrow, next month, or next year. Knowing you are not alone helps. Talking to someone always helps.
What information do you wish you had received?
In the middle of a traumatic situation, it can be hard to know what information you need. Looking back, many people realize what they wish they had known. That’s why Stomiskolen has created a list of tips:
- Contact a social worker and NAV to check what rights and benefits you may be entitled to.
- Explore stoma supplies by contacting suppliers and pharmacies. There are many variations – it’s not “one size fits all.”
- Prehabilitation can help prepare both body and mind ahead of surgery.
- Rehabilitation can be valuable, even if you don’t think you’ll need it right away.
- Try to understand how treatment may affect your body, your life situation, and your abilities – even if not everything can be predicted before surgery.
- Know that support is available: peer supporters for conversations, cancer resource centers (like Vardesenteret), and healthcare professionals who can prepare you for both normal and unexpected changes.
- Check private insurance policies – they may offer payouts related to receiving a stoma.
- There are physical restrictions right after surgery, but also check what you can do. What activities are possible before, right after, and once restrictions are lifted? Physical activity doesn’t have to mean intense exercise – even small things count.
Practical concerns
Sharing your thoughts and worries can be both relieving and helpful for body and mind. Practical concerns can feel overwhelming, but they are often less serious than they appear. Can I swim with a stoma? Can I sleep on my stomach? What kind of exercise is possible? Will I ever lift heavy things again?
Often, it turns out that most of our worries never become reality.
80% of the concerns you have today will never actually happen.
What tips would you give yourself today?
Whether you are waiting for your hospital stay or already admitted, know this: even if everything feels scary and overwhelming now, things will get better.
Here are some tips from people who have been exactly where you are now:
- First of all, relax – it will be okay.
- It’s okay to be sad. It’s okay to feel disappointed. It’s okay to feel anger, grief, and frustration. But be patient with yourself – it simply takes time.
- Start small. Talk with someone you trust – your loved ones, family, and friends.
- Remember, your body is still yours. Use it – for exercise and for everyday activities.
- Don’t forget: you are still you, no matter what.
At the Hospital
Some have pain, some have a catheter, some have undergone emergency surgery, while others have had a planned operation. What they all share is suddenly finding themselves in a very different situation, with everything that entails.
Before a hospital stay, many feelings and worries can arise. Some people have a long time to prepare, others almost none at all. Once you are in the hospital, new concerns often emerge, no matter how much time you’ve had to get ready. After surgery, your body may feel different, and starting a new phase of yourself can be frightening. You may be in pain, and it can be difficult to absorb information or manage tasks related to your stoma.
What practical worries did you have in the hospital?
Before and after surgery, many practical concerns may come up. Some worry about anesthesia, others about handing over control to the hospital. You may worry whether you’ve packed the right things, whether you’ll be confined to bed, or whether you’ll have to share a room with others when you’re not at your best. How will the scar look? Will there even be one? What can I eat, and when? Will I even feel like eating? When can I shower? Can I shower with a stoma?
For many, being in the hospital is unfamiliar. It can feel scary and uncomfortable. You may feel like you’re losing control, not only of the physical but also of the mental. You must follow schedules you have little or no control over – tests, measurements, mealtimes, and other appointments. Sometimes you might find yourself waiting without information. It’s a difficult time, but it will get better.
What was it like waking up with a stoma?
After surgery, you suddenly enter a completely new phase. You wake up not only with a changed body but with a new body part. Some find that old pain has disappeared, others experience new pain. You may feel groggy or disoriented. Seeing tubes, equipment, and bandages can be overwhelming. Both body and mind may feel exhausted. Some people are in denial, others feel relief. But all wonder what the future will look like with a stoma.
Lying there with a stoma, you may feel you’ve been changed for life. Having a stoma can feel unnatural and frightening. The long list of things you have to learn and take care of in the early days may feel endless. Yet for some, the stoma is freeing, and many burdens they carried before surgery may feel lighter now.
Some are lucky enough to wake up with relatives by their side, others wake up alone. But remember: more than 24,000 people live with a stoma in Norway. Whatever your situation, you are not alone.
What was it like caring for your stoma for the first time?
With your new body part comes a whole new care routine. Equipment, hygiene, plastic, and rubber. Unfamiliar products in different shapes and colors. At first, your stoma may not feel like part of you – but with time, it will.
The first time you care for your stoma, it can feel embarrassing, overwhelming, and confusing. Some want to be involved, others don’t even want to look. Both reactions are normal. What comes out of the stoma may feel unmanageable, and it can be hard to know what’s normal. Ask lots of questions. Ask about everything. Ask each time you wonder. The more you ask, the more answers you’ll get.
Practical tips for your hospital stay
When you’re about to go into the hospital, existential worries often leave little energy for practical planning. Just showing up can feel like enough.
That’s why Stomiskolen has gathered a simple packing list from people who’ve been through it before:
- Slippers or slip-on shoes: Hospital floors are often cold and hard, and you’ll be encouraged to walk. Easy, comfortable footwear helps.
- Comfortable clothing: Hospital gowns are fine, but it can feel good to wear your own clothes. Avoid tight jeans or fitted tops – bring soft, flexible clothes instead.
- Pen and notebook: You’ll get a lot of information. It can be overwhelming, hard to follow, and easy to forget. Writing things down helps.
- Book, crossword, knitting, or other hobbies: There will be waiting. A lot of waiting. Having something to do beyond scrolling on your phone is useful.
These are just suggestions – only you know what you’ll need. Making a packing list in advance can help you avoid forgetting what might bring you comfort.
Some want loved ones nearby, others prefer shorter visits. Both are okay. Accepting care is important during this time. It can be physically and mentally heavy, and it’s okay to be vulnerable. Talk to both your family and healthcare staff. Ask questions, and ask for support when you need it.
When you finally get out of bed
Don’t worry – at some point, you’ll get up. For some, this feels like a huge challenge; for others, a huge relief. Either way, you will get out of that hospital bed. Go at your own pace. At first, you may feel dizzy, weak, or nauseous. Your body and mind have been through a lot. Take it step by step. Walk as much as you can. Use aids if needed. Every small step is progress – sitting in a chair to eat, taking a first shower, or walking down the hallway.
Movement helps both body and mind. And if you’re in pain, remember to ask for pain management.
What did you think about your body when you woke up?
After surgery, many thoughts can swirl through your head. Whether your operation was planned or emergency, you wake up in a physical and mental space you never imagined.
Some may feel less attractive, ashamed of their stoma, or changed forever. Others may feel strong, natural, even sexy – more independent than before. Some are too focused on just getting through the day to process emotions.
But remember: 25,000 people are living proof – you can do this.
When reality sets in after stoma surgery
Before surgery, there are countless worries and expectations. After surgery, there are just as many. But once things settle physically and mentally, many realize life isn’t as they feared.
For some, life is better than expected. The stoma doesn’t limit them – it often gives freedom. Eating, exercising, traveling, swimming – things you may have worried about can become possible again. Stoma care may feel easier than imagined. It is a change, for better and worse, but things improve with time.
Feelings after surgery
A stoma can bring a flood of emotions – joy, sorrow, relief, anger, fear, and gratitude. If your surgery was cancer-related, there may be extra fears about the illness. If you have children, you may feel the need to hide your struggles. Emotions may swing wildly.
There’s no “right” way to feel. Whatever you feel is valid. Share your feelings with someone you trust.
Physical changes
Your body has been through a lot. Be patient with the changes. The stoma may be swollen at first, muscles may feel weak, and fluid may build up. Your belly may feel bloated and strange. These things improve with time.
Training and learning
Everyone needs training in stoma care – good days and bad. At first, it can feel impossible. Strange angles, unfamiliar equipment. Some don’t even want to look. That’s normal. But practice helps.
Hospital staff and stoma nurses have deep knowledge. The more open and curious you are, the quicker you’ll gain confidence. Try changing your bag yourself as soon as you can – it helps you feel in control. Use follow-up appointments, online videos, brochures, and support from others. Remember: stoma equipment is not one-size-fits-all. Explore your options.
What information did you miss from healthcare staff?
Many patients wish they’d received more or different information. Stomiskolen has collected common gaps:
- Information about patient associations and support groups
- Prescriptions and how they work
- Stoma equipment and its variations
- Access to peer support
- Details about the surgery and body changes
- What a bandagist does
- Local community services available
- Diet and dehydration
- Leaks and wound care
Remember: you can always contact the department where you had surgery, or associations like NORILCO, for more information.
Concerns about discharge
Leaving the hospital isn’t always just a happy moment. Even if you’re well enough, leaving behind medical staff can feel daunting. Practical worries may arise: How do I get supplies? What if I have a leak? What can I eat? How active can I be?
Some are discharged with injections or need follow-up services. You may worry about home life, family, weight changes, or pain.
Going home with a stoma can feel frightening. But information and support are always available. Seek reliable sources and share your worries with loved ones – it often helps.
At the hospital
Some experience pain, some have a catheter, some have undergone emergency surgery, while others have had planned surgery. But what they all have in common is suddenly finding themselves in a very different situation, with everything that entails.
Before a hospital stay, many feelings and worries can arise. Some have a long time to prepare for surgery, others almost no time at all. Once you are in the hospital, new concerns often appear, regardless of how much time you had to prepare. After surgery, your body may feel different, and it can be frightening to start a new phase of yourself. You may be in pain, and it may be difficult to absorb both the information and the tasks related to your stoma.
What practical concerns did you have at the hospital?
Both before and after surgery, you may have concrete and practical worries. Some fear the anesthesia itself, some worry about handing over control to the hospital. You may worry whether you have everything you need. You may worry about having to stay in bed for a long time. You may worry about having to share the room with others during a period when you are not at your best. How will the scar look afterward? Will there be a scar? What can I eat, and when can I eat? Will I even have the energy to eat? When can I take a shower? Can I shower with a stoma?
For many, being in the hospital is unfamiliar. It can feel frightening and uncomfortable. You may feel that you are losing control not only over the physical but also the mental aspects. You have to relate to schedules over which you have little or no control—examinations, measurements, mealtimes, and other appointments. Sometimes you may be left waiting without information. You are in a difficult period, but things will get better.
What was it like waking up with a stoma?
After surgery, you suddenly enter a completely new phase. You wake up not only with a changed body but also with a new body part. Some find that pain they previously had is gone. Others experience new pain. You may feel groggy and disconnected from yourself. The sight of equipment, tubes, and bandages can feel overwhelming. Both your body and mind may feel exhausted. Some are in denial, others feel relief. But both wonder what the future will bring with a new stoma.
When you are lying there with a new stoma, the feeling of being changed for life and being different can be strong. Having a stoma may feel unnatural and frightening. Everything you have to learn, and everything you must pay attention to in the first period, may feel like an endless list of things you must manage and overcome. But for some, a stoma can feel liberating. And many of the problems experienced before surgery may now feel lighter.
Some are fortunate to have relatives present when they wake up, while others wake up alone. But remember: there are over 24,000 people living with a stoma in Norway. So no matter what—you are not alone.
What was it like the first time you cared for your stoma?
With this new body part comes an entirely new regime for taking care of it. Equipment, hygiene, rubber, and plastic. Unfamiliar products with different shapes and colors. This body part is not something you are used to, but with time, it becomes as though it is part of you—part of your body.
It can feel embarrassing, overwhelming, and confusing the first time you care for your stoma. Some want to be involved, others do not even want to look at it. Both are normal. What comes out of the stoma may feel unmanageable, and it can be difficult to know what is normal. Remember to ask lots of questions. Ask about everything. Ask about each thing you are unsure of. The more you ask, the more answers you get.
Practical tips for those going to the hospital
There is enough to think about before going to the hospital. Deep existential questions may take up most of your mental capacity, so you may not even have the energy to think about the practical things you should bring. Just showing up can be hard enough in itself.
That’s why Stomiskolen has created a simple packing list from those who have been through similar experiences before:
- Slippers or soft shoes: Hospital floors are often cold and hard, and you are encouraged to move around as much as possible. Distances can be short or long, and shoes that are easy to take on and off—especially if you are in pain—can be very helpful.
- Comfortable clothing: Hospital gowns and mesh underwear are fine, but it can feel good to put on your own clothes. However, stiff jeans or a tight top may be the last thing you want to wear in a hospital bed. Bring comfortable and flexible clothes that make it easier to feel like yourself.
- Pen and notebook: You will receive a lot of information. Much may feel overwhelming, and much may seem irrelevant at the time. It can be hard to follow along and hard to remember. With pen and paper, you can quickly jot down questions that come to mind after a doctor’s visit.
- Book, crossword puzzles, knitting, or other hobbies: There will be waiting. Lots of waiting. And after scrolling through all the news and social media, it can be nice to have something else to occupy your mind.
These are just suggestions—you are the only one who knows what you truly need. Writing a packing list in advance can help you avoid forgetting things you might need—or simply want—during your hospital stay.
Some people need relatives close by, while others prefer to space out visits. Know that both are fine. It is important to be able to receive care during your hospital stay. This can be a difficult time both physically and mentally, and it is important to dare to be vulnerable. Talk to both relatives and healthcare staff. Ask every question you have, and request support—both physical and emotional—if you need it.
When you manage to get out of bed
Relax—at some point you will get out of bed. For some, this may feel like a huge obstacle; for others, it can feel like a tremendous relief. One thing is certain: you will get out of the hospital bed. Take things at your own pace, and stay calm and relaxed. You may feel nauseous at first, your balance may be off, and your body may feel weak. Your body and mind have been through a major strain, and it takes time to recover and get to know your “new” body. But you must get moving. Walk as much as you can and are allowed to. Accept guidance and use aids such as a walking frame if you need it. The feeling of moving again, even with small steps, is good for both body and mind. Every single step is progress. It may be the feeling of sitting in a chair to eat, taking the first shower, or simply walking down the hallway for a change of scenery.
Every movement is a step in the right direction. And remember: things may hurt during this period, so it is important to get help with pain management if you experience pain.
After Surgery
Coming Home
Now you have been discharged. Your time in the hospital is over, and suddenly you are back in your own life—with a stoma. This is where you will both succeed and fail. Mostly succeed.
This is where you will both doubt and find peace. This is where life starts again. It can be both frightening and uplifting. The most important thing you have done is to reach this point, whether it was an emergency or planned. You have received a stoma to solve a problem, and even if it doesn’t feel like it immediately, you will notice that life has just as much—if not more—to offer now that you are home.
Stoma Care
Now you face what may feel like a trial by fire—a challenging test of what you have learned and how you handle the situation. Caring for your stoma completely on your own, in familiar and unfamiliar surroundings. This can feel like one of the hardest things you face, away from the safety of nurses and doctors. There is all kinds of new equipment. But know that even though you are not in the hospital, there are countless places where you can find answers to your questions. Help and expertise are out there—in the form of ostomy suppliers, pharmacies, outpatient clinics, and other people with a stoma.
Finding the Right Equipment
There are many ways to find equipment that works for you. There is no “one size fits all,” and it’s important to remember that. Even if you were given equipment that worked well in the hospital, that doesn’t mean it is your final solution. A well-functioning stoma requires equipment that fits your life. Whether you are a fitness enthusiast, a jetsetter traveling from place to place, or someone who enjoys life to the fullest.
Experience makes mastery, and much can be learned through trial and error. Talk to others with a stoma. Get advice and tips from reliable online sources. Some even share their lives as stoma influencers.
However, nothing beats professional expertise. Remember that ostomy suppliers often have professional training, and many offer home visits. Stoma nurses and outpatient stoma clinics are excellent places to get answers to questions and suggestions for alternatives that may suit you better than what you currently have.
Becoming Confident in Stoma Care
Some are fortunate to feel confident before leaving the hospital. Others need both short and long periods to reach this point. Good guidance from professionals can increase your confidence, both at home and in the hospital. Ultimately, only practice makes perfect. A good mentor is reassuring, but it is your hands that must perform the care and gain confidence. Practice as much as possible in the beginning. Change your pouch when you can, not just when you must. Find information and share experiences with others. Try new techniques. It may be helpful to practice in different locations—at a friend’s house, at a café, in a bar, at the cinema, or in a shopping center. The more places you perform stoma care, the more confident you will become in handling the challenges you face—both real and potential.
Acknowledging that things may be unpleasant is also important. Accepting where you are and that you can manage it can be difficult—but it is crucial. Be open with those around you, lean on people you trust, both healthcare professionals and loved ones. Add a touch of humor, and you have a recipe for success. You can do this—your way.
Tips, Tricks, and Myths
Tips & Tricks
Here are some tips from other ostomy users that might be helpful in daily life:
- You can shower with or without your pouch.
- Check airline rules if you want to bring spray bottles in hand luggage.
- Thickeners are safe to use.
- If you have a pouch with a filter, remember to blow into it slightly before putting it on.
- Store ostomy supplies in a dry, cool place. Heat and humidity can reduce their effectiveness.
- A leak doesn’t necessarily mean a mess outside the pouch.
- Breathe deeply, especially if you have a know-it-all mother-in-law or father-in-law.
Tips for Sound and Odor
Sound and odor can be a concern. Here are some quick tips from other ostomy users:
- There are deodorants you can put in the pouch to reduce odor.
- Some pouches have filters that can reduce both sound and odor.
- This is something people without a stoma don’t experience.
- Vinegar in the room can help remove odor during pouch changes.
- A lit match can achieve a similar effect.
- Find ostomy supplies that you trust.
Remember: even before your stoma, your stool had an odor, and gas made sound.
Myths
There are many myths about having a stoma. You may have heard some before or after getting your stoma. Like folklore tales, these myths are rarely true.
“You can’t swim in a pool!”
This is not true. You can swim in pools or fresh water. Just make sure your equipment is secure. Change your pouch before swimming, and you can use a swim belt or smaller pouch to keep things discreet while swimming, diving, or floating.
“You can’t live an active life with a stoma.”
A few years ago, advice about exercising with a stoma was different. Today, a stoma is not a barrier to an active lifestyle. What it means to be active is up to you—but remember, physical activity can boost energy and reduce stress.
“You need a completely new wardrobe after a stoma.”
Only if you want to! Wear clothes that make you feel comfortable. There is no dress code—just choose what feels right for you.
“You can’t fly long distances after getting a stoma.”
One ostomy user flew 19 hours to Thailand without problems! You can travel by any mode of transport. Just bring enough supplies and remember that occasional gas is normal on flights.
“You have to pay for ostomy supplies yourself.”
This is not true. Ostomy supplies are covered by HELFO and the blue prescription system. Talk to your stoma nurse or doctor to know what is covered for you.
“You can’t eat certain foods with a stoma.”
Some foods may require caution, but this doesn’t mean you can’t try them, unless advised otherwise by your healthcare provider. Everyone reacts differently, whether or not they have a stoma. Discuss diet, alcohol, diarrhea, and constipation with your healthcare team, and experiment carefully. Eat and drink what you enjoy, in moderation.