Post-surgery

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. 

How often does someone with a cecostomy do their routine? How long is it?

Depends on the person. It can range from every night without skipping, to every second night, to once a week. Length of routines also varies. Your ET Nurse or physician can help determine what is best.

My cecostomy site leaks? What should I do?

If it is stool, at a low quantity, this is normal. Different foods or caffeine may cause small leaks. If it is excessive, or there is blood or puss, contact your doctor/physician.

Will I feel the cecostomy all the time?

Nope! It is normal for you to not feel the cecostomy, to not constantly be aware of its existence

Help! My cecostomy turns?!

Turning is normal. However, do not let the tube come out of the hole too much, as this might be considered being “dislodged”.

Does the procedure to change out the cecostomy tube hurt?

It does not typically hurt, however, it is highly uncomfortable. Since the tube is in place for approximately a year, the area is used to the tube being there.

Nutrition

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:

For Ileostomy: http://www.nshealth.ca/sites/nshealth.ca/files/patientinformation/0554.pdf

For Colostomy: http://www.nshealth.ca/sites/nshealth.ca/files/patientinformation/0568.pdf

For Urostomy: http://www.nshealth.ca/sites/nshealth.ca/files/patientinformation/0247.pdf

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:

Colostomy:

http://www.nshealth.ca/sites/nshealth.ca/files/patientinformation/0568.pdf

Ileostomy:

http://www.nshealth.ca/sites/nshealth.ca/files/patientinformation/0554.pdf

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.

What foods are bad for cecostomies?

This depends on the person and how their body reacts to certain foods.

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.

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