Living With a Stoma or Ostomy
A stoma (or ostomy) is a surgical opening made in the skin as a way for waste products to leave the body. An stoma can allow wastes to leave from the intestines (ileostomy or colostomy) or from the bladder (urostomy). Get practical tips for managing a colostomy, ileostomy, or urostomy.
Learning to live with your stoma
Learning to live with a stoma may seem like a big challenge, but it will get easier over time. Just as with any life change having a positive outlook, patience, and a sense of humour are key.
There may be times after surgery when you feel discouraged. You may feel alone and isolated. Because the whole experience is so new to you, you may feel awkward, frustrated, and uncertain. Feeling discouraged is real and normal. You might cry, be angry, and react in ways that are unusual for you. Talking to a trusted friend, nurse, clergy, and certainly another person with a stoma may help you work through those feelings.
Your social life can be as active as it was before surgery. You can enjoy the things you did before, such as travel, sporting events, and eating at restaurants. Remember, you may feel the pouch on your body, but no one can see it.
Take your stoma supplies with you if you have to go to the hospital. The hospital might not have the same type you use. Be ready to do some explaining and teaching, especially if you go to a hospital where stoma patients are rare, or if you go for a problem not related to your stoma.
Do not assume that all hospital staff know a lot about stomas. Do not let the hospital staff do anything you think may be harmful, such as give you laxatives, give an enema through your stoma or rectum, or use a rectal thermometer. If you’re in doubt about any procedure, ask to talk to your doctor first.
Getting into and out of a chair
Following abdominal surgery, getting into a chair is more difficult than getting out of one. If you have undergone an anastomosis of the large bowel onto the rectum or an abdominal-peroneal resection, where the rectum is removed through your bottom, the local trauma may make sitting for any length of time painful, uncomfortable and problematical. For the purpose of this blog and to give some advice, I will assume that this is not the case for you.
The technique for sitting in a chair is firstly to choose your chair carefully. The kind of chairs provided in hospitals, with a high back and arms is the best choice. Once you have one, turn round in front of it and move backwards so that both your calves and back of the knees rest against the front of the seat. Feel behind with both hands to locate the arms of the chair. Once you have the arms in your hands, gently lower yourself into the seat. In the beginning placing a pillow or cushion in the seat before you sit, may be more comfortable. I found that a pillow placed sideways in the seat so that it was under my thighs and bottom made it comfortable for me to sit down. As a bonus, this also prevented me from slipping forward in the seat and down on the ground.
In order to get out of the chair, you need to do the reverse of what you did to get into in. First pull your feet back under your knees and the front of the seat, place both hands on the arms of the chair, pushing yourself upwards on your arms and legs and reaching up to a standing position. Remember that you may feel faint while doing this. So, take a few moments before letting go of the arms of the chair and beginning to walk.
Getting onto or off the toilet
Getting onto or off the toilet is the same technique as getting into or out of a chair. A toilet with disabled facilities in the hospital will have handrails either side. If you are elderly or unable to use your legs properly, portable toilet rails are available, and can be installed by social services for the home toilet. This can be arranged by your General practitioner doctor, the district nurse, occupational health or the social services. You can call in and ask the ward, call your GP or search the internet before going into hospital. These rails provide something for you to hold onto.
As an alternative, the sink, radiator or a cupboard at hand will be strong enough for you to hold on to. Grab handles are also readily available from Social Services or the internet. If the requirement is temporary, a grab handle with suction pads can be used on tiled bathroom areas. If you don’t even have that, the resort is to hold on to the toilet seat’s sides while you get on and off it. (Suction Grab Bar: www.nrshealthcare.co.uk/bathroom-aids, www.completecareshop.co.uk/bathing-aids )
While emptying an ileostomy bag, it will be necessary for you to approach the toilet bowl from the front. Ideally, you can use a small stool or footrest to sit on; so that you can lean forwards and the bag can be emptied into the toilet. If you are travelling and the bathroom doesn’t have a footrest or stool, I found that kneeling on one knee in front of the toilet bowl allowed me to easily lean forwards and empty my bag. To make it more comfortable, I used a folded up small hand towel and placed it under my knee to provide some padding. The technique is described in the advice sheet – “How Best to Empty Your Ileostomy Bag”.
Having a wash or a shower
I was very fortunate in having a fairly new hospital room with a spacious adjacent wet room with a tiled floor. I am sure that they used non-slip tiles but they did not look too non-slip to me. So, as a precaution, I made sure to take careful steps to avoid slipping on the floor. Even the toilet had railings, which I did not end up using. Regardless, the bathroom did make it easy for me to use the toilet. The shower, however, did not have any curtains. While this was probably more hygienic, the water went everywhere, soaking the whole floor of the wet-room. This made me very worried about slipping: which would have been very painful. So I was very cautious and careful when the wet room floor was wet. While there were plenty of hooks for my towel and clothes, there was no soap tray. So I had to balance my shower gel and shampoo on the rail fitting. There were handrails for the shower too. I didn’t need their support but rested my foot up on the rail to wash my legs and feet more easily.
My advice for showering is to get partially undressed before entering the wet room and taking only clean underwear and your towel with you. There were a plethora of towels already in the bathroom, so I used one for drying myself and one as a bathmat at the entrance so that when I left the wet room, my feet were dry and all the water left inside. I was amazed by the efficiency of the NHS cleaners as the wet room was cleaned or tidied perhaps three times a day. I felt a little guilty leaving the floor all wet but that was a design fault. Besides, I couldn’t possibly clean it myself as I was in pain, ill and immobile.
Once getting home, I was fortunate enough again to have a tiled bathroom floor and a 120 x 90 cm spacious shower. Although the shower tray is raised perhaps 100mm the access over that step is easy and was not a problem.
Shaving the hair’s from around the stoma
Hair in the skin under the sticky pad of the stoma bag may interfere with the adhesion of the bag to the skin, is uncomfortable when removing the bag, and the hair around the stoma became spoiled and may cleaning more difficult.
I initially used sensitive skin shaving foam in a thin layer, and then shaved it off using a conventional shaver blade. However the foam may interfere with the adhesiveness of the sticky pad of the stoma bag to the skin. Even when it is washed off. Latterly I only used soap and water, washing this off twice after the shave. The area must also be thoroughly dried before reapplying the stoma bag. I used toilet paper. When it was dry I then used the corner of a towel or flannel. Then I waited a few minutes for the area to thoroughly dry off before reapplying the stoma bag.
I have been told to use the inner cardboard tube from a toilet roll to protect the stoma while shaving. This seemed to work quite well, but I had modified it so that I first placed some toilet paper wrapped around the stoma to collect any effluent which may flow out. I then placed the inner cardboard tube of the toilet roll over the stoma. This was then pressed lightly down into the skin and could then be pulled, left or right to move the stoma and make it easier to shave the skin.
Shaving the hair is at the margin of the stoma was a little more difficult. I found the use of my electric shaver and the moustache trimming attachment to be useful in carefully trimming the hairs immediately adjacent to the stoma. It is also difficult to shave the hairs below the stoma as this area could not easily be seen. Over the weeks I have become more confident in pulling the stoma to one side in order to gain a better view. The exposed red mucosa of the stoma is very delicate. It may bleed when touches or cleaned, even when this is done gently with toilet paper. Be very careful not to damage the mucosa with a shaver blade or the electric trimmer.
After shaving the area. I then washed it again carefully with soap and a wet wipe before thoroughly drying the area and carefully reapplying the new stoma bag.
Improving your Walking
See “Walking is Not That Simple”
Return to Driving
The usual advice about returning to driving depends on several factors. Doctors generally will only give general advice because it is the driver who has to take responsibility for any risks. Insurance companies may suggest that it depends on doctors’ advice and doctors may suggest “when you feel safe”. Generally, you may be told six weeks is a safe time to return to driving. However, several criteria must be met. Keep in mind that with laparoscopic abdominal surgery, these criteria may be met sooner than with open abdominal surgery.
Anyhow, let’s take a look at the general criteria:
- Sitting, driving, sitting and especially braking must not be inhibited by pain or any hesitation. Think: would you be able to do an emergency stop if a child ran out in front of the car you are driving?
- Are you alert, fully able to concentrate and not under the effect of any pain killer or other drugs that might make you drowsy?
- Are you able to see properly and twist around to look sideways and backwards if necessary?
- Are you able to easily get into and out of the car? There are special pads available that assist with twisting round in the seat, which consequently may help to get in and out of the car.
As far as other practical advice goes, drive for very short periods in the beginning. You can gradually build up the time. Regardless of the distance you are travelling, remember to take your ileostomy bag kit with you as you never know when disaster may strike and you make have to change the bag in a hurry.
Returning to Work After Having a Stoma
As your strength returns, you can go back to your regular activities. If you go back to work, you might want to tell your employer or a good friend about your stoma. Being open about it will help educate others. Keeping it a complete secret could cause practical problems.
People with stomas can do most jobs. But heavy lifting could cause a stoma to herniate (the whole thing bulges outward) or prolapse (the inside falls outward). A sudden blow to the pouch area could cause the face plate to shift and cut the stoma.
Still, there are people with stomas who do heavy lifting, such as fire fighters, mechanics, and truck drivers. There are athletes who have stomas, too. Discuss your type of work with your doctor. As with all major surgery, it will take time for you to regain strength after your operation. A letter from your doctor to your employer might be helpful should your employer have doubts about what you’ll be able to do.
Sometimes people find that their employer thinks their stoma will keep them from doing their job. This can also happen when applying for a new job. You should know that your right to work may be protected by parts of the US Rehabilitation Act of 1973 and the Americans with Disabilities, and sometimes by sections of your state and local laws. If you feel you are being treated unfairly because of your stoma, check with a local legal advice line about discrimination and protecting your rights.
Telling Others About Your Ostomy
You might be worried about how others will accept you and how your social life may change. It’s natural to think about how you’ll explain your surgery. A clear, brief answer would be that you had abdominal surgery, or that you had part of your intestine removed.
Your friends and relatives may ask questions about your operation. Tell them only as much as you want them to know. Don’t feel as if you have to explain your surgery to everyone who asks.
If you have children, answer their questions simply and truthfully. A simple explanation is often enough for them. Once you have explained what an ostomy is they may ask questions about it and want to see your stoma or the pouch. Talking about your surgery in a natural way will help get rid of any wrong ideas that they may have. They will accept your stoma much the same way you do.
If you’re single and dating, you can pick your time to tell a new partner, but it might be better to do so early in a relationship. Stress the fact that this surgery was necessary and managing your stoma does not affect your activities and enjoyment of life. This not only lessens your anxiety, but if there is an issue that cannot be overcome, the letdown is not as harsh as it might be later. Do not wait until intimate sexual contact leads to discovery.
If you’re in a relationship, married, or considering marriage, talk with your partner about life with a stoma and its effect on sex, children, and your lifestyle. Going to an stoma support group meeting together may also be helpful. Talking to other couples in which one partner has an stoma will give you both an experienced point of view. See Intimacy and sexuality when you have an stoma for more on this.
Staying active and travelling when you have an stoma
Everyone needs daily exercise to stay healthy and keep good body function. An stoma should not keep you from exercising and playing sports, although athletes sometimes wear longer shirts or shorts with higher waistbands, depending on the location of the stoma. In fact, people with stomas are distance runners, weight lifters, skiers, swimmers, and take part in most sports.
There are a few safety measures you should think about. For instance, many doctors recommend avoiding contact sports because of possible injury to the stoma from a severe blow or because the pouching system may slip. But special protection can prevent these problems. Weight lifting could cause a hernia at the stoma. Check with your surgeon about such sports.
Swimming
You can swim with your pouching system in place. For sanitary reasons, you should use a stick-on pouch when you go swimming in fresh water or in the ocean. Remember these points:
- If you use a support stoma belt, you can leave it on if you want to.
- You may want to protect the barrier by taping the edges with waterproof tape.
- Before swimming, empty your pouch and remember to eat lightly.
Choosing a swim suit
You may want to choose a swim suit with a lining for a smoother profile. Dark colours or busy patterns can also help hide the pouching system.
For women:
- Consider a suit with a well-placed skirt or ruffle.
- You may also wear stretch panties made especially for swim suits.
For men:
- Try a suit with a higher waist band or longer leg.
- You may also wear bike shorts or a support garment sold in men’s underwear departments or athletic wear departments under their bathing suits.
- Some men may prefer to wear a tank top and trunks, if the stoma is above the belt line.
Travelling when you have a stoma
All methods of travel are open to you. Many people with stomas travel just like everyone else; this includes camping trips, cruises, and air travel. Here are some travel tips:
Take along enough supplies to last the entire trip plus some extras. Double what you think you may need, because supplies may not be easy to get where you’re going. Even if you don’t expect to change your pouch take along everything you need to do so. Plastic bags with sealable tops may be used for pouch disposal. Leave home fully prepared. Find out if and where you can get supplies before a long trip. A local stoma support group may be able to help you find stoma supplies and local medical professionals.
Seat belts will not harm the stoma when adjusted comfortably.
When travelling by car, keep your supplies in the coolest part of the car. Avoid the trunk or back window ledge.
When travelling by plane, remember that checked-in luggage sometimes gets lost. Carry an extra pouching system and other supplies on the plane with you. Small cosmetic bags or shaving kits with plastic linings work well. These should be kept in your carry-on bag. Air travel security will generally let you take on all medical supplies. To avoid problems with customs or luggage inspection, a letter from your doctor will help pass through the security check stating that you need to carry stoma supplies and medicine by hand. Further problems might be avoided by having this information translated into the languages of the countries you are visiting.
Before travelling abroad, get a current list of English-speaking doctors in the areas you’ll be visiting.
Traveller’s diarrhoea is a common problem for tourists in foreign countries, whether you have a stoma or not. The most common cause of diarrhoea is impure water and/or food. It may also be caused by changes in water, food, or climate. Don’t eat unpeeled fruits and raw vegetables. Be sure drinking water is safe. If the water isn’t safe, don’t use the ice either. Bottled water or boiled water is recommended, even for brushing your teeth.
It is important to note that for patients with an ileostomy the body may lose water and minerals quickly when you have diarrhoea. For this reason, you may need medicine to stop the fluid and electrolyte loss and supplements to replace the fluids and electrolytes. Your doctor can give you a prescription to control diarrhoea. Get it filled before you leave so that you can take the medicine with you just in case you need it.
Intimacy and Sexuality When You Have an Ostomy
Sexual relationships and intimacy are important and fulfilling aspects of your life that should continue after stoma surgery. But there is a period of adjustment after surgery. Your attitude is a key factor in re-establishing sexual expression and intimacy.
Stoma surgery may present more concerns for single people. When you choose to tell that someone special depends on the relationship. Brief casual dates may not need to know. If the relationship grows and is leading to physical intimacy, your partner needs to be told about the stoma before sex. If possible, empty the pouch beforehand.
Discuss any sexuality concerns you have with your partner. A stoma on your belly is quite a change in how you look and can make you feel anxious and self-conscious. It’s likely that your partner will be anxious about sex, too, and may be afraid of hurting your stoma or dislodging the pouch. Talk to your partner about the fact that sex is not likely to harm the stoma. Try to be warm, tender, and patient with each other.
Sexual function in women is usually not changed, but they could sometimes have pain during sex. Men may have trouble getting and keeping an erection. Their sexual potency may sometimes be affected for a short time. These problems usually get better with time.
Body contact during sex will usually not hurt the stoma or loosen the pouch. If the pouch or stoma covering seems to be in the way during sex, try different positions or use stoma accessories to support the pouching system.
Women may consider wearing open panties, “teddies,” intimacy wraps, or a short slip. Men may consider wearing a wrap or cummerbund around the midsection to secure the pouch. You can buy many types of pouch covers or you can make your own.
Pregnancy with a stoma
Pregnancy is possible for women who have had stoma surgery. But before you plan to get pregnant you should talk about it with your doctor.
The stoma itself is not a reason to avoid pregnancy. If you are healthy, the risk during childbirth appears to be no greater than for other mothers. Of course, any other health problems must be considered and discussed with your doctor.
Disclaimer: The views expressed in this article are not necessarily those of myIleostomy.com or the author. The information is provided for general background reading only and should not be relied upon for treatment. Advice should always be taken from your own registered medical practitioner for individual circumstances and for treatment of any patient in any circumstances. No liability is accepted by myIleostomy.com or the author in respect to the information provided for any reason or as a result of treatment in individual circumstances.