Short list of helpful tips while expecting surgery
Does having a stoma hurt?
Like any surgery, you will have some discomfort during recovery. The pain is managed by medications while you are in hospital, and your doctor may give you a prescription to take home with you if s/he thinks you need it.
The stoma is part of your small or large intestine, which does not have any nerve endings, so the stoma itself does not hurt. Once recovered, you shouldn’t feel much of anything.
How will the stoma be taken care of? Do I do it myself or will I have a nurse helping?
An NSWOC (Nurse Specializing in Wound, Ostomy, and Continence) will show you how to care for your stoma. Typically, they will help you change the appliance at first, getting you involved as much as possible. Once you feel confident in changing your own appliance, you can do it yourself at home.
What are the types of surgery?
Learn more here
How long will it take to resume the activities I did before surgery?
This will be dependent on many factors and while returning to activity is important for everyone so is proceeding down the recovery path in a safe manner. Your surgeon and other healthcare professionals are the best source of information to guide your approach to taking on more activity.
I'm really scared, is this normal?
It is definitely something that many people experience along with a host of other emotions. Many people find that learning more about their surgery and how others have dealt with similar situations helps with their own journey. If you would like to speak with someone who has an ostomy, please check out our Facebook group or email firstname.lastname@example.org
Short list of helpful tips while expecting surgery
How often will I have to empty my bag?
This will vary from person to person depending on the type of ostomy they have. Right after surgery, you will most likely have a more active stoma. Typically, when you are fully healed from surgery, you will find out what is normal for you. It is usually recommended that you empty your bag / pouch when it is about ⅓ full.
How often do you have to change your bag / appliance?
We assume what is meant by this question is the part of the system that makes contact and “sticks” to the skin creating a seal - i.e. the flange. The distinction is important because with a two-piece system the skin barrier or flange adheres to the skin and the pouch or bag connects to the skin barrier. Therefore, with two-piece systems bags can be changed more easily because the flange can stay on the skin while a new pouch is swapped out. Flanges need changing before the efficacy of the system fails (seal is broken, adhesive is loose, or barrier is beginning to pull off). The ideal frequency between changes will be different for everyone. Most ostomates change their flange (or one-piece system) every 3-5 days. Some people find they require more changes and some people fewer.
How long does it take to change an appliance?
In the beginning, when you are learning, it will take a little longer. Once you’ve done it a few dozen times it won’t feel like it takes very long at all. Practice makes perfect. Most ostomates can change their appliance in 5 to 15 minutes with practice.
I can't change my appliance (pouch) very well due to - my large belly / my eyesight / the arthritis in my hands, etc.
Having a mirror - with a magnifying side - can make it easier to see to change your pouch. You can mount a mirror attached to an extendable arm around waist height in your bathroom so you can move it around to get the best angle to help you see.
I find changing my pouch uncomfortable and distasteful. Is it alright to have my spouse change the pouch for me?
You may find it helpful to have your spouse help you change your pouch at first, or if you have a flare up of arthritis in your hands, but it is best to learn to change the pouch yourself. You will be more independent; you will have more freedom; and you will have a sense of accomplishment.
As a urostomate when is the best time to change my pouch?
The kidneys drip constantly to drain the urine from your system. If you have just had a big glass of water or a cup of coffee or tea, the dripping will be faster and more plentiful. When you first get up in the morning give yourself a few minutes to walk around, maybe put the coffee on or brush your teeth, but do not drink anything. Give your pouch a final drain and this should be the best time to change as you will have drained most of the kidneys during the night and during your first activity in the morning. (As soon as you get up, the kidneys become more active - just like they did before you had a pouch, but as long as you have not had a drink within a few minutes they will just drain the last residue and this will make it easier to change.)
My bag keeps leaking, what can I do?
Your NSWOC is the best person to help you with leaks, they have expert knowledge on the products available and can guide you in troubleshooting for your individual issues.
What if my bag leaks while I’m asleep? Should I set an alarm?
If you have high output during the night, it can lead to a blowout, especially if your pouch seal has weakened. If you leak onto your bedclothes, throw them in the washer. There usually aren’t any stains left behind, even on white bedclothes. If this becomes a regular occurrence, you should consider setting an alarm to empty your bag before it gets too full. Some people will adapt and naturally wake up when their bag is full and do not find it necessary to set an alarm. You should do what works best for you.
I understand it is not uncommon to have leaks from the pouch. How can I best prepare?
Yes, most people have leaks from time to time. Especially for the first few months, carry a change of your pouch, a face cloth, an extra dry cloth, clean underwear and a small mirror. You can put these items in a small bag and have an emergency package in your purse, or briefcase, or lunchbox or your car so you are ready for an emergency.
A good emergency measure is to carry a man's incontinence pad. These are shaped like a triangle. The pad folds to about 4 x 4 and is individually wrapped. If you feel a leak start, drain your pouch and then place the wide base of the triangle under your pouch with the narrow end at the top. This should give you a half hour to get to somewhere where you can change the pouch.
I am a urostomate and have noticed that the drainage hose that is attached to the pouch at night gets cold against my skin - even in the summer. What can I do to make this more comfortable?
Make a tube from a piece of flannelette, or an old flannelette sheet. Cut it about 3 feet long and 4 inches wide. Fold one end over and stitch to make a tube where you can insert a tie. Sew the long sides together and slide the night drainage hose up the flannelette tube. Secure the hose with the tie.This will give a warm, soft surface against your legs rather than the cold plastic hose.
After urosotomy surgery, how long will it take to be able to sleep on my sides?
Urostomy surgery is a major invasion of your body. It has removed your bladder and perhaps other organs, impacted your bowel and created a major incision through your abdomen. While the pain eases after a few days, you will likely find it uncomfortable to sleep on your sides for up to six weeks.
I have questions about my flange and pouch. How do I get those questions answered?
There are many great sources to help with this. There are some really good videos that explore different types of appliances (flange and pouch = two-piece system). Manufacturers often have information phone lines where you can speak with people knowledgeable in this regard. NSWOCs (Nurses Specializing in Wound, Ostomy and Continence) can also be a good source of information as can fellow ostomates. To speak to an NSWOC see your local listing at https://memberscaet.ca/find.phtml
What are the advantages and disadvantages of one and two piece appliances?
There are as many opinions on what is better as there are ostomates. You may find this video and other similar ones helpful when weighing the benefits of one piece versus two piece appliances. https://www.youtube.com/watch?v=2KtmwJDhujU
The bag feels so heavy, I keep thinking it is going to fall off. How long will it take for me to get used to wearing this thing?
In time new ostomates will get use to wearing their appliance. The appliance may feel heavy or be heavy due to frequent output. One obvious way to keep your pouch as light as possible is by visiting the bathroom as often as needed to avoid your pouch from becoming over full. It is usually recommended that you empty your pouch when it is ⅓ full.
Appliances seem so expensive - how can I reduce my cost and is it possible to get some low cost or free samples?
Appliances can be expensive whether you have insurance or not. Appliances come in many shapes and types just like those wearing them, so it can take some time to find the right system for you. Factors like how often you need to change your appliance, whether you prefer a one-piece or two-piece system, etc. can affect costs. If you have health insurance with your employer check the fine print because ostomy supplies may be covered. Most provincially sponsored health-care plans have coverage for ostomy supplies. If you are a Nova Scotia resident, visit https://novascotia.ca/dhw/pharmacare/ for more information on provincial pharmacare. Many ostomy suppliers will send you samples to try free of charge. Check also if they offer compassionate supplies for those who cannot afford them. At Ostomy Halifax Society our members can receive a 15% discount when purchasing their supplies at participating retail locations.
Why are ostomates more susceptible to getting a hernia?
A hernia occurs when there is a weakened area in the abdomen. An ostomy comes through the abdominal wall, creating a weak spot in the abdomen. Hernias in ostomates usually occur in proximity to the stoma, as that is the weakest part of the abdomen.
What can I do to avoid getting a hernia?
You should listen to the recommendations that your surgeon and NSWOC give you for recovery to avoid getting a hernia. It’s easier to prevent a hernia than it is to fix it. Be smart during your recovery, and seek guidance from your health care team before beginning any physical activity. Most people (80%) will not develop a hernia due to their ostomy. And sometimes they occur even if you do everything right.
I got a hernia, Help!
Every hernia is different, the best thing to do if you suspect you have a hernia is to see your doctor or NSWOC. They will determine what the next step should be.
Will I ever get used to wearing this bag? I hate it!
Your appliance is now your artificial bowel or bladder. It will do its job while you learn to get used to it. Many ostomates eventually come to think of their appliances as blessings as opposed to curses. If you’re not there yet, just give it some time.
Why did this happen to me, I was really healthy and looked after myself?
Unfortunate things happen all the time to healthy and good people. Many people, who were healthy, end up with ostomies. Often people who end up with ostomies feel better after surgery, are healthier than they were before surgery, or end up happy that ostomy surgery saved or improved their life. Remember, it is not your fault that you have an ostomy.
What sorts of food can I eat after surgery? What should I avoid?
It is important to eat a nutritionally balanced diet to support you in your recovery. While your diet may be restricted at first, you should eventually be able to transition to a normal healthy diet. It is especially important that you consume enough protein and fluid to help your body heal properly. You may not have a large appetite right after surgery, so eat smaller more frequent meals until your appetite returns.
For the first four to six weeks after surgery, you should eat a low fibre diet and avoid foods with skins and seeds. Examples of foods that you should eat are white rice, potatoes, white bread, soft cooked meats, soft cooked or steamed vegetables without skins or seeds, fruits without skins or seeds, soy products like tofu and soy milk are great plant protein sources, and dairy products if they do not bother you. Food you should avoid are uncooked greens like lettuce, cabbage, kale, and sprouts; foods with skins and seeds like tomatoes, bell peppers, and fruits can be problematic but if deseeded and peeled they should be part of your healthy diet; mushrooms are problematic at first while the bowel heals, best to wait until fully recovered to eat these; meats that have casings like sausages and hot dogs should be avoided, as well as tough meats like beef jerky.
In addition to eating well, it is important you drink plenty of fluids. Right after surgery, your ostomy output will normally be mostly liquid. You should drink as much fluid as possible during this time, between 2-3 litres a day.
Are there recommendations for foods I can eat based on the type of surgery I have had?
For a complete list of recommendations please see the Nova Scotia Health Authority Ostomy Guidelines handout:
What should I do when I get a food blockage?
Blockages related to food not being able to exit the stoma are most common in ileostomates. Here is a PDF provided by the UOAA that may be helpful to Ileostomates. Blockages can occur in the bowel for other types of ostomates and may not be related to the stoma, such as when scarring occurs in the bowel. If you are experiencing pain and discomfort, seek medical advice.
Which foods cause blockages?
The food that can cause blockages varies from person to person, and depends on the type of ostomy you have, your disease activity and history, and the amount of functioning healthy bowel you have. Consult with your surgeon and speak with a registered dietitian to discuss which foods would be appropriate for your individual case. The most common triggers are extremely fibrous or tough foods. For information about how to eat right after your surgery, see the following brochures from the NSHA:
After your healing period, introduce foods one at a time, and in small amounts at first. Once you have healed fully, you shouldn’t restrict your diet unless you have identified a trigger food. A registered dietitian can help guide you through the process of safely reintroducing foods to your diet.
Will I need surgery to clear a food blockage?
Most blockages related to the stoma clear on their own. Fewer require a trip to the ER and fewer still require intervention. If you are experiencing pain and discomfort, seek medical care. If your pain is worsening, you should visit your local emergency room.
Bathroom odor! What can I do?
Some the ostomy suppliers have very effective deodorants that can be placed in the pouch or sprayed in the air after using the bathroom to mitigate odour. Some pouches have charcoal filters in them that helps eliminate odour. What you eat will affect the odour produced also.
What foods are likely to cause odour?
It is important to realize that your ostomy output is your body’s waste, so there will inevitably be odour when you empty or change your pouch. Some foods may cause more odour than others. These foods can include garlic, onions, cabbage, and fermented foods.
Can I do what I did before the surgery?
Most people are able to go back to everything they did before their surgery, though it is sometimes necessary to make some modifications. Consult your doctor or NSWOC about an appropriate timeline for you to safely reintroduce the things you love doing.
View our testimonials to learn more about living with an ostomy.
Can/how can I go back to work after surgery / how does the ostomy affect working?
Most people who worked before getting their ostomy end up going back to their work post-surgery. Check with your health care professional to ensure you understand if and when returning to work makes sense for you and whether or not there may be restrictions on what you can do and when.
I was pretty active before the surgery. Please tell me about continuing with Gardening, Swimming, Water Skiing, Dancing, Golfing, Hiking, Tennis, Pickleball, Baseball or Bowling.
Ostomy Halifax Society is full of people who do things on this list and more. If your body allows, you can probably do it. That said, you should check with your doctor first that it is safe for you to begin any new activity.
I enjoyed contact sports. Please tell me the challenges of returning to Soccer, Football, Basketball or Rugby.
You should check with your doctor before you reintroduce any activities after your ostomy surgery. It’s best to ease your way back in to your favourite activities under the guidance of a medical professional. They will help you prevent a hernia from forming, and ensure your body is healed and properly hydrated and nourished for physical activity. When playing contact sports, one of the most important things to consider is that your stoma does not get injured. It is wise to wear a guard over your stoma to prevent any direct injuries. Your NSWOC can help you decide what is best for your particular sport. Also, feel free to check out these links:
Will I have to wear special clothes?
Most people find they can adapt their wardrobe pretty easily. Many people require no change to the type of clothing they wear. Some people may find it more comfortable to wear pants that sit above their stoma and cover the bag entirely, while others prefer the waistband to sit below the stoma, allowing their bag to drape over the pants. Some people hire a tailor to adjust where and how their pants fit to allow for the positioning of their stoma and appliance. Tight fitting clothing with some stretch allows for expansion of the bag.
Can people with an ostomy fly in airplanes?
Of course! Many do. Check with your healthcare physicians to ensure there is no medical reason to abstain from flying. For most ostomates flying and travelling is simply a question of good management and planning. It is best to empty your bag before boarding the airplane, as gas expands when the plane ascends to higher altitudes. Wear a bag with a functioning charcoal filter to allow these gasses to escape if you’re concerned.
I am planning to go on vacation out of country. How many supplies should I take?
The rule of thumb is to figure out how many supplies you will need and then take twice what you think will be required, and then a few more. This is important even if you travel in Canada. In several provinces, the provincial government provides ostomy supplies. The supplies are mailed directly to your home. Therefore, it can be very difficult to find ostomy supplies in stores even in Canada. Always be prepared. Changes in temperature, water and food can mean you go through your supplies more quickly than normal.
When travelling, not all beds will have a side rail where you can hang your night bag (urostomy). If you pack a simple wire hanger, you can stretch it out and place it under your mattress then hang your night bag from the hook.
If you carry a couple of disposable waterproof pads, you can put one under your sheet to protect the bed at night. If you happen to spring a leak, you can just throw the pad away and have a fresh one for the next night.
Family & Relationships
Should I tell my school friends? I'm afraid they'll be grossed out?
Talking about your ostomy surgery, stoma and health circumstances surrounding these things is a personal decision and there is no one right answer. What is right for you may be different for others. Some people like to keep such things private and share only when necessary and some people like to tell everyone who will listen. Do what’s right for you. There is nothing gross about getting life saving or life improving surgery! Family and friends are usually extremely supportive.
I'm so afraid that my wife/partner will leave me. Does this happen?
Most significant others, family, and friends want to learn, help, and support those they love. People who attend Ostomy Halifax Society general meetings often bring their spouse, partner or significant other. There are cases of relationships dissolving after ostomy surgery, but they are not the majority of cases, and not always because of the ostomy itself.
Can I go on dates with an ostomy? I’m afraid they’ll be grossed out.
You are absolutely able to go on dates with an ostomy! It is usually better to disclose that you have an ostomy before becoming intimate with a partner. Disclosure is very individual to a person. Some like to disclose it right away and only date people who are immediately supportive. If you having an ostomy is a deal breaker for the other person, that is a good clue that you are probably dating the wrong person. You will not necessarily be or want to be intimate with everyone you date. You may wish to keep your surgery private until things go a little further in the relationship. There are plenty of wonderful, empathetic, and understanding people out there. Ostomates are incredibly resilient people and make fantastic partners!
Can I continue to be intimate with my partner?
If you are healthy enough to be intimate with your partner, having an ostomy should not stop you. Consult with your doctor about an appropriate amount of time to wait before you resume intimacy. Some people do experience sexual dysfunction after ostomy surgery. If you feel that you are experiencing this, consult with your doctor and NSWOC. Be open with your partner about how you feel. Some things that you can do to make intimacy more comfortable for you are: wear an opaque bag or pouch cover, empty your bag before being intimate, and to try different positions to find what works for you and your partner.
A short list of great websites to help inform and inspire.