Disclaimer.
The following information videos have been produced to improve the knowledge base of new and present WAOA
members. In all cases, if a member is experiencing any medical issues, they should contact their Stomal Therapy
Nurse or Doctor for advice.
1. WAOA Stomal Therapy Nurse Introduction and Terminology
2. Specific Colostomy Information
3. Specific Ileostomy Information
4. Specific Urostomy Information
5. Changing your Bag Demonstration
6. Hernia Prevention
7. I Have a Rash (skin care)
8. What I Can and Can't Do
9. What about Intimacy
10. Ostomy Accessories
Please scroll down this page and click on the appropriate link to watch these videos. There is information relative to each video under each link. To change text size, use the blue button slider at the bottom of the screen.
WA Ostomy Association distributes ostomy products and provides support to its 3,500 members all over the state. It is run almost entirely by volunteers who in the main have Ostomies themselves. A Stomal Therapy Nurse Service is available at the association to assist with problems you may have in relation to your stoma, skin and or appliance. Bowel & Stoma Health is an extension of this service by taking the clinics out to the rural areas all over WA and providing education to the nurses.
Where possible contact your own STN at your hospital in the first instance as they know you and have direct access to your medical history and the doctors.
New ostomate and ongoing support meetings are held at WAOA as well as regular meetings in Mandurah, Albany and Kalgoorlie.
We have direct access to an Exercise Physiologist, Dietician, Reiki practitioner, Reflexologist, Relationship Counsellor, Chinese Herbalist, Men’s health and Social workers/Councilors, please contact us for referral.
To add to this support, we have put together a short series of videos for your information and reference.
For further information please don’t hesitate to contact us either by telephone, email, letter or via the website
Link for education pamphlets, click here.
Different Terminology and products
An ostomy is a surgical opening into an organ to divert the direction of its contents, the prefix tells you
which part of that organ has been used. For example, a colostomy is formed from the Colon, an ileostomy from the
ilium.
An ostomate is a person who has a surgically created ostomy.
As for our friend the stoma it’s a Greek word for mouth or opening – therefore it’s the opening of your ostomy onto the skin. It is your bowel turned inside out so can bleed readily due to lots of superficial blood vessels – similar to the gum in your mouth.
A fistula is an abnormal connection or passageway that connects two organs that do not usually connect.
Otto
To assist in understanding the surgery you have had done we can use our model OTTO. It helps to understand how
things are connected and their names to help piece all things together.
Digestion starts in the mouth with chewing, food then passes into the esophagus and into the stomach. From there it moves into the small bowel otherwise known as the ilium. The main function of the ilium is to digest and absorb the nutrients from your food – an ostomy formed from here is called an ileostomy.
Following on from the small bowel is the large bowel otherwise known as the Colon. The main function of the colon is to absorb water, vitamin B12 and some electrolytes. It travels up the left hand side of your body, transverses across your abdomen, down your right-hand side to the sigmoid colon, rectum and then to the opening of your anus. An ostomy formed from your colon is called a colostomy and is usually on the left-hand side of your abdomen.
Colostomy
Temporary Colostomy
Sometimes a temporary colostomy may be formed if the surgeon needs to remove a diseased bit of bowel (often the
sigmoid colon) and you need to recover before the bowel can be rejoined.
Permanent Colostomy
A permanent colostomy can be formed if the cancer is too low down in the rectum to re sect without causing
incontinence. In this case the surgery involves removal of both the anus and the rectum and the anal canal is
over sewn meaning you will no longer have an opening in your bottom and you will pass your stool out through a
stoma on your left hand side.
If most of your large bowel is left intact after 4-6 weeks your stoma output will be like a normal formed stool.
Diet and fluids
For the first 4-6 weeks your dietician will have advised a “low residue diet”. This gives your bowel chance to
get used to working again, for the swelling to settle and therefore reducing your risk of blockages.
This is a diet low in “insoluble fibre”, that’s to avoid those foods that are difficult for the body to digest such as skins on fruit and vegetables, sweet corn, celery, wholemeal breads, beans pulses and lentils. After this time, you can gradually introduce all food groups into your diet including the insoluble fibre as you still may be prone to constipation.
While your output is thickening up you are at risk of dehydration if you have frequent watery stool. You need to monitor your urine output. If your urine is dark then you are already dehydrated, thirst and headaches are other signs. Often when your sodium is low (which happens with frequent watery output) you don’t absorb the fluids you drink and therefore you need to replace not only your fluid but electrolytes too. Tea and Coffee are diuretics and make the situation worse. Hydrolytes are available from pharmacies and contain the electrolytes your body needs, a litre of this with a reduction of other fluids will help to tip the balance. You can even make your own hydration drinks (see links on our website for brochures). This must be done in consultation with your STN, dietician or Dr.
Pancaking
This can happen once the stool becomes firm and instead of falling into the bag stays around the stoma
eventually getting underneath the adhesive causing the appliance to leak.
There are several things you can try.
- Ensure you are drinking enough fluids – 1.5-2 litres a day to keep the stool soft.
- Increase the insoluble fibre in your diet (wholemeal bread, brown rice and pasta, green leafy vegetables and fruit with skins on).
- Try some lube, available at the WAOA on the scheme or vegetable oil placed into the top of the bag to assist the stool to slide down.
- Place a piece of toilet paper into the bottom of your bag before you put in on to stop the bag sticking to your stoma.
Appliances for a Colostomate
In the first few weeks your output is likely to be quite lose so you will have been started off on a drainable bag. As time goes on the stool will more than likely thicken to a normal type stool and will be difficult to drain out of the bottom of the bag. Once this happens you will want to move to a closed pouch which can be removed with its contents and thrown away in a scented nappy sack or the like.
The bags come in one and two pieces- really a personal choice. One piece should be changed every one to two days and two piece the adhesive stays on your skin 2/3 days and the outer bag changed daily. Once your stoma has settled and if its round, you could consider a bag with an opening already cut- discuss with your STN.
If you have a difficult stoma that is quite flat against the skin and you have frequent leaks your STN may prescribe a convex bag to help push the stoma out. As these can cause pressure damage, they need to be used under the care of the STN.
Ileostomy
Loop Ileostomy
Due to advances in surgical techniques many stomas are now temporary. This is due to the surgeon being able to resect a cancer that is very close to the anus without causing incontinence. After the tumor has been removed the remaining bowel is connected to the top of the anal canal. To allow the new join to heal the surgeon creates a loop ileostomy (shown in the video) which directs the faeces onto your abdomen. This means that reversal is a much simpler operation as the ilium hasn’t been totally separated.
End ileostomy
You will have an end ileostomy if you have had all your large bowel removed- and generally the rectum will be removed too. Sometimes a new rectum can be formed (called a J Pouch) but this isn’t always possible and there can be complications.
Both of these stomas are usually brought out onto the right side of your abdomen and will be above the surface of the skin by about an inch.
As the main function of the large bowel is to absorb water and this is no longer in use the output from an ileostomy will be very watery. Over time your bowel will adapt, and the stool should thicken up to a toothpaste consistency but it will never be like a formed stool.
Diet and fluids
For the first 4-6 weeks your dietician will have advised a “low residue diet”. This gives your bowel chance to get used to working again, for the swelling to settle and therefore reducing your risk of blockages.
This is a diet low in “insoluble fibre”, that’s to avoid those foods that are difficult for the body to digest such as skins on fruit and vegetables, sweet corn, celery, wholemeal breads, beans pulses and lentils.
Your output is likely to be quite watery and frequent in the first couple of weeks. To thicken the output, you need more white starchy foods such as white bread, white pasta and white rice. Mash potato, stewed apple and mashed banana have also shown to help slow things down.
As a guide the normal output from an ileostomy we expect you to be emptying your appliance 4-6 times a day and should be of a toothpaste consistency.
If your output continues to be watery despite your diet and you are emptying more than every 3-4 hours you are at risk of dehydration and should consult STN or Dr. Your Dr may order bloods to check your kidney function as well as recommending taking /increasing gastro stop and perhaps introducing Benefibre powder to your diet.
You need to monitor your urine output. If your urine is dark then you are already dehydrated, thirst and headaches are other signs. Often when your sodium is low (which happens with frequent watery output) you don’t absorb the fluids you drink and therefore you need to replace not only your fluid but electrolytes too. Often dieticians advise ileostomates to add salt to their food. Tea and coffee are diuretics and make the situation worse. Hydrolytes are available from pharmacies and contain the electrolytes your body needs, a litre of this with a reduction of other fluids will help to tip the balance. You can even make your own hydration drinks (see links on our website for brochures), Again this must be done in consultation with your STN, dietician or Dr.
Medications
When an ileostomy is very active medications are sometimes not absorbed particularly those that are sugar coated (enteric). Keep an eye on your output and if you see any tablets in your bag speak to your pharmacist about changing to an alternative.
Appliances for the Ileostomate
As the output from an ileostomy is loose, you will need to wear a drainable bag, see sample on the video. These come in one and two pieces, really a personal choice. One piece should be changed every one to two days and two piece the adhesive stays on your skin 2/3 days and the outer bag changed daily. Once your stoma has settled and if it’s mostly round you could consider a bag with an opening already cut, discuss with your STN.
If you have a difficult stoma that is quite flat against the skin and you have frequent leaks your STN may prescribe a convex bag to help push the stoma out. As these can cause pressure damage, they need to be used under the care of the STN.
Urostomy/Ileal Conduit
This is formed when your bladder is removed, usually due to cancer. The bladder is removed, then a section of small bowel is taken, one end oversewn with the ureters placed at the end and the other end is brought onto the abdomen as a stoma. Initially you will have two pieces of long tubing coming out of the stoma (stents) which are removed around 5-10 days after surgery once the join between the ureters and bowel has healed.
Output
Obviously, you will have urine coming from the stoma, which may be initially stained with blood. There will also be mucous which can be expected most of the time as the bowel doesn’t know it's no longer required. Often the urine can have a strong odour, sometimes this can be related to what you have eaten (such as asparagus) or could be a sign that you have an infection. There will be bacteria in your urine due to it coming in contact with the bowel so often a urine test isn’t helpful in diagnosing an infection. If you feel generally unwell, have a temperature, have cloudy offensive smelling urine this is more of an indicator that you have an infection that needs to be treated. Always seek the advice of your Stoma Nurse or Dr if you have symptoms.
Diet and fluids
It’s very important that you keep your fluid intake at around 1.5-2 litres a day to keep the urine moving through the stoma and to help prevent infections. It can also help to acidify your urine by taking cranberry tablets as this creates an environment making it difficult for bacteria to grow.
Initially following this surgery, you will be on a low residue diet. This is a diet low in “insoluble fibre”, that’s those foods that are difficult for the body to digest such as skins on fruit and vegetables, sweet corn, celery, rhubarb etc. This is because the bowel has been handled and a portion removed which means there is likely to be swelling which would predispose you to a food blockage. You will have been advised how long this would be for – normally 4-6 weeks. Once this time has passed you should be able to eat a normal diet.
Appliances for a Urostomate
As the output is urine and watery you will need a bag with a tap or bung at the bottom for ease of emptying. The bags also have one-way valves to stop urine flowing back up towards the stoma. As with other stomas there are choices between a one piece and a two-piece system. One piece should be changed every one to two days and two piece the adhesive stays on your skin 2/3 days and the outer bag changed daily. Once your stoma has settled and if its mostly round you could consider a bag with an opening already cut- discuss with your STN.
If you have a difficult stoma that is quite flat against the skin and you have frequent leaks your STN may prescribed a convex bag to help push the stoma out. As these can cause pressure damage, they need to be used under the care of the STN.
To save having to get up and empty your bag during the night there is a night drainage bag that is attached to the tap/bung of your appliance. This can be placed into a bucket on the floor next to your bed. The bag can be washed with warm water and liquid soap, left to dry and reused for a week.
This is something that you will adapt to your own circumstances but for an ileostomate and urostomate it would be better to change your bag first thing in the morning before you eat or drink so that your stoma is least active. Once your wounds are healed it is preferable to take the appliance off whilst in the shower enabling you to wash your skin under running water, if the stoma is active the output will simply get washed away. Do not wash the skin around your stoma with soap as this alters the PH and will make your skin more susceptible to breakdown. It is not a problem however if shower gel or wash comes into contact with the skin whilst washing other parts of your body.
Have your equipment ready to apply your new bag as soon as you step out of the shower. See video for a recommended process.
What is a hernia? Can we prevent it?
A hernia is a prolapse of bowel through the muscle wall
A peri stomal hernia is where the bowel behind the stoma has prolapsed through the muscle wall, causing a bulge, which can be quite prominent. To help prevent this from happening its important in the first 3 months after surgery not to lift anything heavier than a kettle. It is also a good idea to get into the habit of wearing a support garment such a belt when exercising.
There are also undergarments that can be worn as everyday wear.
If you are a member of the ostomy association you are entitled to 3 belts or 6 pairs of pants or a mixture of the two every year.
It is best to be measured for a support garment by a STN who can discuss the best option for your circumstances.
If you haven’t been given any instruction in hospital on core strengthening exercises it would be well worthwhile seeing an exercise physiologist to guide you. If you get a chronic disease management plan from your GP this visit can be subsidised. We can put you in touch with an exercise physiologist who has experience in those with abdominal ostomies.
If you do develop a hernia the only way it can be reversed is by surgery and often the hernia ends up reoccurring. Surgery will only be performed if the hernia is causing problems with your output , blood supply to the bowel or giving you a lot of discomfort.
Preventing skin and stoma complications and what to do if concerned?
Skin problems can be an issue for many but can largely be prevented by careful removal of pouches and minimal use of products/accessories on the skin. Your skin under your appliance should look the same as the other side of your abdomen.
Remember that your stoma will shrink particularly in the first 6 weeks so remeasure your stoma at least once a week and ensure there is only a 2mm gap between the edge of your appliance and the stoma.
It is also worth noting that sometime the stoma can get bigger particularly if you put on weight or develop a hernia. Speak to your STN with any concerns.
What can /can’t I do?
Once you have recovered from your surgery there shouldn't be anything that you can’t do because of your stoma. There are lots of ostomates who go skydiving, swimming , surfing , travelling, running and even weightlifting.
We do have travel certificates that are in different languages for you to use at airports to help explain what your bag is for. You do however need to be prepared to show your bag but are entitled to ask to go to a private room. Body scanners are now operating at Perth Airport and if you have emptied your bag prior to going through they may not be detected. However, it is probably easier to divulge to the security staff that you have an ostomy to pre-empt any problems.
Always divide your appliances between your baggage and ensure you have enough spare in your hand luggage for several days, not forgetting to put your scissors into your main luggage.
See brochure on travelling with a stoma.
As a new member you are given a Disabled Toilet Card, if you need to change your appliance while out and about this could be useful as well as a “Find a toilet app”.
Want to talk about sex?
I’m sure sex isn’t the first thing on your mind following such surgery but intimacy, hugs and cuddles are just as important if not more so at this time. If you have a partner, do discuss your fears about perhaps the bag leaking and what you could do to prevent these embarrassments. If you don’t have a partner, then it certainly doesn’t mean that you can’t go on to meet someone when you have an ostomy. Obviously, it doesn’t have to be something that you tell someone on a first date but it would be something to discuss before you become intimate.
When you are ready there are pouch covers that can be bought to cover the bag (at WAOA or via insideoutostomy life), women can tie a silk scarf around your waist or wear crutch less pants. Some men like to wear the hernia support belt to stop the bag from moving around. There are also small bags that can be worn for short periods if you have a colostomy or ileostomy.
If there are physical problems with sexual function- such as erectile dysfunction in men or radiation damage to a woman’s vagina there are things that can be done so, do consider approaching a sexual therapist/councillor. We have access to these at the association.
Many ostomates have gone on to find partners, marry and have children.
Products and Accessories
There are over 2,500 different products available on the scheme as all stomas are very different, as individuals are- there isn’t one product that fits all. Your STN at the hospital has more than likely shown you a couple of different options.
The main differences of appliances are
- one or two piece , cut to fit or precut,
- convex or flat, closed or drainable, see the section on your type of ostomy for further details.
We are well supported by the companies who supply the products, they are more than happy to send you samples and often have displays of their products at the association. The company reps frequently support our rural visits so that as many ostomates and nurses can be kept up to date.
The government spends over 22 million dollars a year on the accessories that are available to each ostomate through the Stoma Appliance Scheme. We are one of the only countries that doesn’t have to pay for their products, so we need to limit the use of extras where possible.
The least you put on your skin the better for your skin and the easier it is to look after.
Your stoma nurse may have suggested that you use stomahesive powder around your stoma followed by a skin barrier wipe. This assists it to heal in the early days but shouldn’t be needed beyond the first 6 weeks after surgery. Other products you may have been advised to use are remove sprays and wipes (you are only able to order one or the other not sprays and wipes in the one month), lube (for colostomates), seals which may prolong the wear time of your appliance, tablets or drops to prevent the bacteria in the stool creating gas, belts that attach to the bag to assist with security, sachets that thicken the output in the bag.
It is advisable to speak to your STN before ordering any of these extra products so that you can be given the best advice and ensure that they aren’t overused and potentially cause skin problems.