A stoma changes your life and with it a lot of questions arise
Having a stoma implies a lot of questions especially about taking care of your stoma and how to manage your every day life in the best possible way. Below you'll find some useful information which will help you to have a better understanding about how to manage your stoma and to maintain a family / social life. More specific questions which you could have as colostomate or ileostomates are answered here. If you are urostomate probably find further answers on this specific page.
Taking care of your stoma on a daily basis
Can I change my stoma appliance on my own?
Yes! You will need a little bit of training at first, but changing it on your own will allow you to remain completely independent. This will also help you if you are facing at a small leakage problem, you'll know what to do (clean with water and soap) in that situation without asking for help. By the end, 5 minutes will be all what you will need to prepare your equipment and to change your appliance.
Do I need specific equipment?
5 minutes is all you need to prepare your equipment and to change your stoma appliance.
Get into the habit of always taking the few items required to wash with you; a spare bag and, at the beginning, some spare clothes as this will avoid any accidents or discomfort. Your stoma is not a wound, it is a mucous membrane, therefore the daily care is a simple clean up that is done with bare hands using water and soap. To be as independent as possible at home, it is recommended to perform the change of stoma applicanc yourself.
Suggested Bathroom Wash Kit Contents:
1. A good pair of quality surgical scissors. Preferably with rounded edges.
2. A Razor. Not necessary if there is no hair growth around your stoma.
3. A pen to draw the stoma template onto your new bag or flange.
4. A small mirror to check the positioning of the appliance on the underside of stoma.
5. A supply of disposal bags.
6. Cleaning wipes.
7. If you are using a 1 piece system; a new bag
8. If you are using a 2 piece system; a new bag and/or a new wafer
9. All your pastes and creams (if used).
10. A clothespin to hold up your clothes when changing bag.
I often have leakage problems. What can I do?
A leakage problem is strong inconvenience, know that there are numerous reasons behind a leak. You must therefore quickly contact an E.T. nurse in order to determine the actual cause of the leak and to remedy it immediately. Depending on your type of stoma and the nature of your stools, the consequences of these leakage problems will differ.
You can also try to find the cause:
- Is your wafer or bag properly centered?
- Has the protective paper of your skin protector / wafer or bag completely come off?
- Is your appliance adapted to the size and shape of your stoma?
- Did you properly dry your skin when you attached the skin appliance?
- Are you feeling discomfort due to too much peristomal hair?
- Could you have let a drop of stool or urine fall between the skin and the appliance?
- Could you have placed your fingers on the skin protector?
- Are the wafers or the stoma bags damaged from poor storage?
- Pay attention to changes in temperature (they must be preserved in their original box, in a room at 18 °C that is not humid).
- Has care been performed with the product that could cause irritation or dryness of the skin and preventing good adhesion of the equipment?
- Has the skin protector or wafer been in place for too long, or it is used?
- If you are urostomate: Is your urine too alkaline or too acidic right now (check the pH) (see the question on urinary tract infections) and could it be destroying the skin protector too quickly?
- Is your stoma located in a fold or on an irregular surface?
Knowing the reason behind the leak will help you and your E.T nurse find the solution. If the leaks persist, don't hesitate to consult your stomatherapist, who can provide advice and, if necessary, change the equipment.
How can I prevent irritation and redness of the skin surrounding the stoma?
If the daily care is carried out simply, the risk of irritation is lesser. Keep in mind that the adhesive part of the pouch is also a skin protector meaning that its role is both to keep the bag in place, but also to protect your skin.
So changing it daily doesn't constitute a risk of irritation. Irritations are often due to leaks or improper care. However, there are ways of reducing the risk of irritation to the minimum:
- Clean your stoma with water and soap- neutral pH, perfume free soap.
- Do not use disinfectants or alcohol.
- Look for allergic reactions around the adhesive for example.
- You can also use skin protective products such as B. Braun Askina® Barrier Film.
- If you have itchy watery stools, fill the gap of uncovered skin using a protective paste such as B. Braun's Superfiller.
- Finally, you can also choose to use protective rings which makes the appliance user-friendly while maintaining a good skin protection.
Where can I order my ostomy appliances?
Before you leave the hospital, your E.T. nurses will give you at least a week supply of stoma products. They will give you specific advice about obtaining further supplies at home, as each nurse’s practice may be slightly different regarding this. Order new supplies when you start your last box, this way you will never run short. But don’t accumulate supplies, they can be damaged by moisture and temperature changes. You can get your supplies from the local chemist, from delivery services or directly from the manufacturing companies.
You can obtain samples of stoma appliances to try out. Your E.T. nurse can give you the free phone numbers of the manufacturers (or by email through their website). Tell them what kind of stoma you have and they will send you samples. If you try various pouches, keep a written note of the ones you like and those you don't. If you choose to use any new appliance, just give your E.T. nurse a phone call if you require the ordering information.
Where can I throw my used stoma bags?
The current equipement is not biodegradable and therefore cannot flushed in the toilets. Used ostomu bags can be placed in a plastic bag closed in the most airtight manner possible and then throw away the bag in the garbage with household waste. Regarding drainable bags, it is advisable to empty them before disposing of them.
Can I customize my stoma bag?
Of course! You can customize your ostomy bag any way you want using different materials (duct tape, fabrics, ..). You can even find videos and tutorials on the web by searching “fashionable ostomy”, or “homemade ostomy bags” or "stoma bag covers". If you use airtight materials, make sure that the filter is not blocked.
Managing your everyday life with a stoma
How can I recover once home?
When you go home at first, you may feel tired and should take a rest each afternoon. Try to avoid staying up all day as this can tire you out of the point where you cannot sleep at night. When you do start to exercise again it's advisable to start gently for exemple, going for daily walks or swimming is good.
How can I adapt myself to this new situation?
Depending on the reasons for your stoma surgery you may feel that you are on an emotional rollercoaster, being weepy sometimes for no apparent reason especially in the first weeks after the surgery. It is important that you talk to someone you feel comfortable with, to help you cope. If you don't find the right person to begin with, don't give up. There are lots of people to help, and remember, you're worth it!
Having a stoma makes your body look and work differently, and there will be times when you find this difficult to cope with. You may find yourself feeling quite angry about having the stoma, and thinking that you will never live a 'normal' life.
It seems that during these first weeks all you can think about is having the stoma, and you find yourself thinking 'Is this how it will always be? ' But through time you will most likely become less conscious of your pouch. It's common to feel disgusted when dealing with the stoma output also.
Most people are not used to having such close contact with their bodily functions, and so it can take quite a time to adjust to. Talk to your E.T. nurse or another ostomate who will understand how you feel and may have useful ideas on how to combat these problems.
If you have a partner, they may also feel upset and emotional about all that is happening to you both. Sometimes your partner can be more upset than you are, and might also need some support. The E.T. nurse can arrange to speak to your partner either while you are in hospital, or when you get home.
What about showering or bathing?
As the equipment is fully waterproof you can shower or bath. Keep in mind that the heat of the water can have an impact on the adhesive power of the skin protector (1-piece system) or the base plate (2-piece system).
In all cases, avoid using products such as shower gels or bubble bath as they leave a greasy film on the body making it harder for the equipment to hold properly. This can lead to possible irritations.
Choose products with a neutral pH, preferably without fragrance and without colorant.
Additional tips for colostomates and ileostomates:
If you decide to keep your stoma bag while taking a shower, remember to close the filter to maintain its effectiveness.
Be aware that if you decide to shower or bath without your stoma bag, possible stool output can occur.
Can I wear all kinds of clothes?
Yes! However right after the surgery you may at first feel more comfortable in loose fitting clothes as your abdomen will be swollen and you will still be feeling a bit sore. This will gradually settle during the first couple of months, after that you will then be able to start wearing the type of clothes you want as the stoma bag will be perfectly hidden under your clothes. You might feel a little self-conscious about the bag the first few times you go out, but no worries this is perfectly normal! With time and as you go back to your usual lifestyle this feeling will gradually disappear.
You can be fitted for a girdle which will be made-to-measure. You should be able to wear tight fitting clothes and swimwear. Ask your E.T. nurse to advise you about the best mini bag for you.
Don’t be afraid to discuss any clothes preferences or any clothes related questions with your E.T. nurse before the operation (see pre-operative consultation). If your operation was done in emergency or if the location of your stoma was not marked before the operation some slight adjustments to the waistline may be needed. Again ask your E.T. nurse for advice.
When can I start driving/travelling again?
Start driving when you feel comfortable while performing an emergency stop without hurting your abdominal muscles or wound (this can take up to 8 weeks). To be safe, the first time you start driving either start with a short distance or ask another insured driver to come with you in case you are unable to continue.
Having a stoma shouldn't prevent you from travelling, but you will need a bit of preparation to make sure that everything goes smoothly. At the beginning, start by going away for a weekend or going back to a familiar place where you will be able to relax.
Following these simple guidelines will help you go on vacation with peace of mind:
- Check that you have adequate insurance, which covers any pre-existing illnesses.
- Ensure you have adequate toilet facilities within your accommodation.
- Pack the needed material for the length of your vacation, take on a bit more then usually needed to be on the safe side.
- For your comfort empty or change your stoma bag before boarding on a plane or train etc.
- Plan your best opportunity to empty or change your appliance
- For longer breaks send appliances in advance to your destination or have them delivered to you while you are there.
- Divide supplies between hand luggage and your suitcase, in case you lose them.
- Bring your prescription with you to have the references of your products.
Prepare a bag:
- A new stoma bag (preferably already cut to your current size)
- A disposal bag and a few wipes
- Clothespin to hold your clothes while changing the appliance
- A small packet of wet wipes (in case you have no access to water)
- A second skin wipe (if used)
Additional tips for colostomates and ileostomates:
- Take a couple of drainable bags in case you have diarrhea.
- Mini bags are available for swimming and sun bathing. Most standard bags have a mini version that will suit you. See your E.T. nurse for further advice.
- Avoid alcohol and fizzy drinks on the plane and drink plenty of water.
- To avoid over production of wind before flying eat yoghurt daily and avoid yeasty foods.
- If the local water should not be drunk avoid salads and ice in drinks.
Additional tips for urostomates:
For long trips and for more comfort pack a urine leg bag.
Is going back to work possible?
There is no reason why your stoma should prevent you from working (unless your doctor or E.T nurse says otherwise for a specific reason). Before going back to work think about the practical things. For example think about how you will change or empty your pouch in the toilets at work. Think of the time you will need, the equipment you will need and look to see if there is a specific toilet that would be best to use (one that may be larger, or that has a hook on the door, a shelf, a window, or simply one that is less used). If the trip from your home to your work is a long one look to see if there are available toilets that you could use to empty your pouch if necessary. By doing that you won’t feel rushed or worried so your level of anxiety should be low. Also think about who you will tell and how much you want them to know. Remember no-one except your employer needs to know unless you want to tell them. The decision is yours.
If you are worried about going back to work, ask you employer if you can start by working part time. Start by working only in the morning, or only in the afternoon or on certain days of the week. Talk with your employer to find out what works best for you both. Most people are able to resume their previous employment within 3 months depending on their surgery and type of work.
Before going back to work, check with the person in charge in your company to make sure that your job is compatible with your stoma ( physical efforts needed, place of work…)
What about practicing a sport activity (swimming,...) and having an active lifestyle?
After your surgery, you may think that going out with friends, participating in parties or other events isn't anymore possible with your stoma. Far from it! Consulting your social life is actually very important to your recovery and will help you to gain back self-confidence.
Exercises such as swimming, cycling, hiking or skiing are strongly encouraged. However, avoid any sports that put too much stress on the abdominal muscles such as weight lifting, rowing, fighting sports or rugby as it may injure your stoma.
You should start exercising progressively in order not to strain your stoma too much especially right after your surgery. Avoid any heavy lifting as your abdomen has been made more fragile by the stoma also.
In the same way that you can shower or bath yourself with your pouch, you can just as easily go swimming either in a pool or in the sea. However, avoid staying in the water more than 30 minutes straight.
Actually, practicing a sport activity and maintaining an active life style are the key factors to your recovery and will help you to gain back your confidence.
Tip: Wearing a belt or a protection band is sometimes useful.
Family, relative & sexuality
How to talk to my kids and relatives about my stoma?
Children need a climate of trust, you have to speak to them and explain the situation in a simple way. They must not have the feeling that something is being hidden from them. Sometimes, what they are imagining is often far worse than the reality. Saying that you have a stoma does not mean one have to show it! Regarding relatives, it is up to you to judge whether you find it necessary to talk about it.
Can I have intimity and sex with my partner?
Of course! Just remember to change or empty your bag before going to bed. Initially, you might be worried but gradually you will gain confidence in yourself and bedtime will no longer be synonymous with fear and apprehension but will be a moment of intimacy.
However, if the presence of the bag is a problem for you or your partner, discuss this with your E.T. nurse who can suggest various options, one of which may help you.
Contraception, pregnancy and childbirth- Will the situation be same as before my surgery?
As colostomate or ileostomate you may need to change the type of contraception you were using prior to the surgery as in the case of oral contraceptives for example, you may no longer be able to absorb the full dosage of medication (see also "What should I know taking medicine?"). You should ask your E.T. nurse about contraception following surgery.
Regarding contraception being a urostomate, you will most likely be able to keep the same as before. For more information do not hesitate to ask your doctor for advice.
However, having a stoma doesn't prevent a woman from falling pregnant or giving birth. Many women have had successful, uncomplicated pregnancies after their surgery. Indeed, in many cases they have had several children following stoma formation.
Finally, it is usually advisable to wait for about a year after your operation to have a baby, this gives you time to heal after the surgery and allows you to recover psychologically from the operation. If you have any concerns, ask your E.T. nurse.