Caring for an ostomy, whether temporary or permanent, can be a challenge both physically and emotionally. When the idea of wearing a pouch with stool being collected on the outside of the body is first presented, most people want to avoid it at all costs. However, surgical procedures can often alleviate symptoms and actually improve quality of life.
Take the time to make your decision
Unless emergent surgery is necessary, the next step is to take some time to think about what you have been told and find out what an ostomy is all about. Surgical procedures can often alleviate your symptoms and actually improve the quality of your life. Do not hesitate to ask questions of your physician or have him direct you to a nurse who specializes in the care of ostomies (WOCN, Wound, Ostomy, Continence Nurse).
What are some important questions to ask before having surgery?
- What does the surgery involve? Is the ostomy temporary or permanent?
- How will it affect me in the future?
- What is a pouch (ostomy bag) and what does it look like? Will I have problems with odor?
- How will having the surgery affect my diet, activities and personal relationships?
- Can I wear my regular clothes? What about bathing suits?
When you have had your questions answered and decide to have surgery, it is time to schedule the actual procedure
- Be sure to ask if an ostomy nurse will be marking a stoma site prior to going into surgery. Even if the surgery is temporary, proper placement will allow for better pouch adherence and the ability to see the stoma when caring for it.
- Identify a person who would be willing to assist you and support you during the recovery period. If you are comfortable asking someone to learn ostomy care along with you, it will be helpful when you return home.
- Most people will not have any knowledge of what an ostomy is all about, so ask your ostomy nurse to repeat any information that you don’t understand. Printed materials from your nurse should be kept with your ostomy supplies for quick reference.
- Ask your insurance company if there is a specific company that you should use to purchase supplies. If there is none designated, a mail order supplier will most likely be able to bill your insurance company directly. Uninsured people who are not working and cannot afford supplies will need to discuss their situation with the ostomy nurse.
When seeing your doctor after surgery
- Take an entire change of ostomy supplies with you in case the doctor wants to remove the pouch to check the site.
- If you are having skin problems or the pouch is leaking, don’t wait until you see the doctor, call your ostomy nurse for suggestions. Once your skin has become sore, it will be difficult to obtain a good seal.
You can maintain a healthy lifestyle with an ostomy
Living with an ostomy can be a bit challenging at times. Adjusting to wearing a pouch on your abdomen may be easier for those of you who have been ill and feeling poorly before surgery. In any event, there are some changes that need to occur in order for you to be successful in managing and adjusting to life with an ostomy. Identifying a support person to help you through recovery and adjustment can make the experience easier and quicker than you may expect. Your support person can be a sibling, adult child or close friend; that person does not always have to be a spouse if you are married.
Everyone is different
One of the most important things to remember is that EVERYONE’S OSTOMY IS DIFFERENT!! Some of the information shared is not reliable and may not be helpful to you. If something sounds strange or totally different from what your doctor or ostomy nurse has told you, check it out before making any changes in your routine eating or pouching system.
Updating your pouching system
Those of you who have permanent ostomies may need to “update” your pouching system periodically. Ostomy supply companies are constantly trying to improve products to improve your quality of life and success in managing your pouch. Look at change positively! Your current ostomy supply company or the company that manufactures your brand may offer free sample packs. If you have a complex pouching situation, it may be necessary to seek some help from your ostomy nurse prior to considering a change.
Do you have an ostomy nurse?
If you do not have an ostomy nurse or have moved to a new location, you may be able to find one who accepts referrals through the Wound, Ostomy, Continence Nurses Society. Visit the website at www.wocn.org.
To search for a specialist, visit the find a nurse in your area page.
Remember when you travel
When traveling, always carry extra supplies with you and hand carry them, do not check bags when using public or commercial transportation. If you leave your supplies in a car, be sure to protect them from excessive heat or cold by placing them in an insulated bag. In the summer when temperatures become very hot inside a vehicle, you will probably need to use an ice pack. Place several layers of a towel between the ice pack and your pouches and accessories. If you cut your own wafers, pre-cut them before travel because you may not be allowed to carry scissors through security devices.
When you visit your doctor or nurse
Most companies offer introductory sample kits with a small carrying pouch (no advertising). This can be very useful when you are going to the doctor. Take one of everything you will need with you in the event the doctor or ostomy nurse wants to check your stoma site. Take a plastic zip-close or small grocery bag with you for pouch disposal.
Tips for changes in public restrooms
When emptying your pouch or in the event you need to change your pouch in a public restroom, use the handicap stall. It will offer you more room and may even have a sink for your use. Spray the stall with a couple of squirts of deodorizer before you start, then afterwards to control odor.
What to do if you have a leak
In the event that you have a pouch leak, ileostomy drainage is especially noted for leaving stains on clothing. Try to soak the clothing as soon as possible in cool water. White cotton products can be lightly bleached. Products like Oxy-clean, Chlorox II and Wisk may be helpful. Be sure to read the label inside of the clothing for instructions on which products can be used without damaging the material. Prevent leakage by changing the pouch on schedule. It will need to be changed more frequently if you are very active, have any wrinkles or folds near the stoma, if you have a fever or take hot baths/showers and during the summer months when you are exposed to very warm temperatures.
Summertime activities can cause excessive perspiration on your abdomen. That added moisture under the skin barrier can lead to fungal (yeast) rashes. Fungal rashes start out with a little itching and red bumps which turns into solid redness, then additional bumps. Left untreated, the skin becomes very sore, weepy and the pouch will no longer stick to the skin. Your physician can order Nystatin powder for you to use beneath the pouch. Apply the powder the same way you would use ostomy powder for minor skin irritation, then seal in with a non-sting skin barrier wipe.
Place additional Hypa-fix tape or other waterproof tape around the edges of the barrier to ensure adherence of the seal when swimming.