Friendly Visitor Program
The Niagara Ostomy Visitor Program’s goal is to meet with people one-on-one (or by phone, email, or electronically) either before or after surgery. This lets the individual ask questions and voice concerns to a trained volunteer that listens empathetically, and answers non-medical questions. The Visitor can dispel a great deal of the worry and anxiety the person may feel regarding their quality of life following surgery; and can provide information about the Niagara Ostomy Association and how it provides on-going information and support.
Our Visitor program is supported by Ostomy Canada. Their program certifies Ostomy Visitors through on-going training.
- Helps the person with the ostomy to renew self-confidence as an individual, with all the qualities of self-assurance that were present prior to surgery.
- Offers reassurance, understanding and practical information from someone who has “been there, done that.”
- Helps to bolster morale.
- Assists the individual and their family members and caregivers in adapting.
Your request will be directed to our Program Coordinator. The coordinator will call:
-to get information that will help determine which volunteer is best suited to make the visit (ex. gender, age, type of ostomy)
-ask if your spouse or significant other may wish to speak with a volunteer about their concerns.
If you desire, the Visiting Coordinator will make a follow-up telephone call to see if you have any other questions or concerns, or if you require a follow-up visit.
Please be assured that any personal information collected by Niagara Ostomy is held in strictest of confidence, and only statistical information (not your personal information) is retained by The Niagara Ostomy Association and/or The Ostomy Canada Society, to help measure the visitor program activity.
Common Ostomy Terms
Appliance – collection device for waste eliminated from the body.
Cecostomy – opening directly into the cecum. Functions like an ileostomy.
Colectomy – removal of all or part of the colon (large bowel).
Colonic Conduit – this surgery differs from the Ileal Conduit only in the fact that a segment of the large bowel was used to form the conduit instead of the small intestine. The stoma is usually in the lower left portion of the abdomen.
Electrolytes – salts and minerals needed by the body for good health.
Excoriation – skin breakdown.
Fistula – an abnormal channel or connection between a body cavity or organ to another body cavity or organ, or to the skin.
Irrigation – an enema given through a colostomy stoma, either to promote regulation or as a prep for surgery or diagnostic tests.
Jejunostomy – an opening into the jejunum, the portion of the small bowel after the duodenum and before the ileum.
Nephrostomy – diversion of urine away from the ureter and the bladder by insertion of a tube into the kidney(s).
Obstruction – a blockage or occlusion of a structure, often of the bowel.
Ostomate – a person who has an ostomy.
Ostomy – a surgically created opening in the body.
Perineal Wound – space left by removal of the rectum.
Peristalsis – progressive waves of motion which occur without voluntary control to push waste material through the bowel or ureter.
Prolapse – an outward telescoping of the bowel.
Revision – surgical relocation of the stoma to a new site or reconstruction of the stoma at the present site of surgery.
Stoma – an opening or mouth.
Stenosis – a narrowing or shrinking of the stoma due to scar tissue.
Stricture – a narrowing along a segment of the bowel.
Urinary Diversion – any one of a number of surgical procedures which diverts the urine away from a diseased or defective bladder.
Urostomy – the bladder is removed or by passed due to disease or malfunction.
Vesiscostomy – opening directly into the bladder used for urine drainage.
A stoma is the opening that is created after surgery. It is basically a small part of the intestine that has been brought up through an incision in the side of the abdomen. The human body has an amazing capability of adapting whenever necessary. Within a few weeks, the stoma tissue has attached itself to the skin and most people usually do not have any problems with the healing of the site. Sometimes when the rectum is removed, healing will take much longer as it is often very difficult to avoid aggravating the incision. But for most people, this sacrifice of a little bit of patience and a lot of pain medication is much better than the alternative of death or suffering with a horrible bowel disease.
Ask most people what an ostomy is and they will probably tell you that it’s something that only old people get. Not true, there are many more young people who have ostomies than you think. If they don’t tell you about it, you wouldn’t even know! Having an ostomy is not the end of the world, in fact, to most people, it is the beginning of a whole new life. An ostomate can go swimming, hiking, biking, skiing, hey even rock climbing if you want to! You can say you have the guts to do anything!! Having a great mental attitude is the first step to recovery.
Usually, when a patient has been scheduled for ostomy surgery, they will have an opportunity to speak to a Nurse Specialized in Wound Ostomy and Continence (NSWOC). As with any type of surgery, there will always be many questions that need to be answered. The NSWOC nurse is there to help you as much as possible and alleviate any concerns that you may have. She will also make sure the surgeon puts the stoma in the right place. The NSWOC nurse will usually have you put on a pouch so that she can make sure it will not interfere with your belt line. This is a major problem with surgeries that are done under emergency situations, without the help of having a proper fit beforehand. Having a stoma along a beltline will make for a very uncomfortable fit. The pouch will not have a chance to fill up properly and will cause more leaks. The NSWOC nurse will also be able to lead you to any local support groups in the area. Being part of a support group is so very beneficial to the physical and emotional recovery of a person living with an ostomy. Knowing that you are not alone in this huge step in your life is the best feeling in the world.
So by now, you are probably wondering how having on ostomy will change your life. Yes, you will have to make a few adjustments, but pretty soon you will stop worrying about it and start loving life again.
There are two types of appliances for ostomies. There is a one-piece appliance, which includes the pouch and the wafer (the part that sticks to your skin) together in one piece. With the 2-piece appliance, the wafer is applied to the skin first and then the pouch is secured to the wafer. Most people prefer the 2-piece at first because it is much easier to see the stoma and therefore much easier to get the right fit. Usually, ileostomates and urostomates can go anywhere from 3-6 days before having to change their appliance. Because the output with ileostomies is fairly liquid, the adhesive and wafer break down quickly. With colostomies, the wear time increases anywhere from 7 to 14 days; this is because the output is much thicker and less frequent and, therefore, the adhesive will last much longer. Remember, these wear times are only estimates and there will be occasional leaks when you will have to change your appliance more frequently. For the most part, having an ostomy is just as much a part of your daily routine as brushing your teeth. After a while, you will start to forget about it.
It is very easy to get overwhelmed after surgery, the NSOWC nurses are showing you certain ways to change your appliance, or you might be hearing different stories from other people with ostomies about what works for them. Just remember that what works great for one person will not always work for another. Everyone’s skin reacts differently and everyone’s stoma is unique in shape and size. Don’t feel like there is something wrong with you just because it isn’t working the way you had expected. Try out different products and take notes at each change about what you tried and how it worked for you. Remember that this a time to learn what you are comfortable with. You would never just buy the first car or pair of shoes that you see, would you? No, you test drive the car or try on the shoes and walk around the store. The same goes for appliances, if it isn’t working for you, then try something else.
In Ontario if you are having problems, you can contact the local LHIN and self refer to ask for an NSWOC nurse to visit. You might be required to have a doctor’s referral. It’s worth following through and getting professional advice. You can also use the ‘Ask the NSWOC’ service on our website.
All the Ostomy Suppliers will be happy to send out samples to you. They usually have a nurse on staff who will be able to answer your questions and give recommendations. Don’t be shy about asking for samples. They want you to be happy in hopes that you will become a loyal customer.
The Ten Most Frequently Asked Questions Following Ostomy Surgery
By Jennifer Dore, RN, CETN
These are some of the most common questions I’m asked by my patients following ostomy surgery. I have provided very general answers to these questions. Please remember to discuss your specific concerns/questions with your ET nurse or doctor, as every person’s ostomy experience is unique and individual.
1. What about showering and bathing will soap hurt the stoma?
People with ostomies shower and bathe both with and without their appliances according to their personal preference. Normal exposure to air or contact with soap and water will not harm the stoma and water does not enter the ostomy opening. In the case of the ileostomate, you may want to choose a time for bathing when the bowel is less active.
2. What can I eat? Will I need to change my diet?
There may be some modifications in your diet, but in most instances, you should be able to eat a varied and well-balanced diet. Any dietary restrictions are highly individual. It is important to introduce foods a little at a time with plenty of liquids. For ileostomates, some less digestible or high roughage foods such as corn, coconut, mushrooms, nuts, popcorn, dried or raw fruits, and some vegetables are more likely to create potential blockage problems. People with colostomies and urostomies generally have fewer or no restrictions. It is important to drink lots of liquids and to chew your food thoroughly before swallowing. Ask your ET for a list of recommendations before or soon after you leave the hospital.
3. Will there be an odour coming from the pouch?
Generally, there should be no odour coming from the pouch as it is designed to be odour proof. Depending on the type of ostomy you have and what you have eaten, you may have gas and odour when emptying the pouch. There are a lot of products that can be taken orally or placed in the pouch to combat odour. Some people like to use room deodorizers preventatively before emptying.
4. Will I be able to wear the same clothes as before? How about belts, pantyhose, girdles, tight clothes, and swimsuits?
After ostomy surgery, many people wear the same clothes as before. Depending on your stoma location you might find belts uncomfortable or restrictive. Some people chose to wear higher or looser waistbands on trousers and skirts. Some men may prefer to wear braces rather than a belt. Pantyhose, girdles, and tight clothes will not injure the stoma, but they could inhibit the normal flow from the stoma to the pouch thereby breaking the adhesive seal and creating a leak under the wafer. Often people will wait a number of hours after applying a new wafer and pouch before wearing tight clothing or going swimming to make sure the paste or cement has set. As for swimsuits, steer clear of white ones, as the outline of the pouch may be visible when wet. Many women prefer patterned suits with an inside panel for extra tummy control. Recently underwear and bathing suits that contain a provision for a pouch have been introduced for both sexes. Various items are available to cover the appliance if it extends above the swimsuit.
5. How long can I or should I wear one appliance between changes?
The adhesiveness and durability of systems vary. Anywhere from three to seven days is to be expected, or whatever makes you and your skin comfortable. Specialists say that changing an appliance unnecessarily or wearing one too long, may be damaging to the skin. After a few months, most people learn how long a single appliance will last.
6. How many times a day will I empty the pouch?
It depends on the type of ostomy, what you eat, and how quickly it passes through your system. For most people, two to six times a day is to be expected. People with ileostomies must empty more often than those with colostomies. People with urostomies will empty even more frequently.
7. Is there a correct way to empty an ileostomy or colostomy pouch?
Most people with a colostomy or ileostomy find the easiest way is to sit on the toilet with the pouch between the legs, although there is no right or wrong way. Make sure to hold the closing clip and bottom of the pouch firmly before opening. It is a good idea to place some paper in the bowl before emptying to prevent backsplash. For urostomies, emptying is the same but some men may prefer to stand or use a urinal.
8. Will I be able to continue my daily activities once I recover from surgery?
Yes. Generally, after surgery you can gradually resume the daily activities you were doing before. You may need to plan on doing certain things in a different way. For instance, people with ileostomies and urostomies need to take in a good amount of liquids. Unless there is a specific problem, your ostomy should not restrict daily living. With some people, such as those who have suffered from ulcerative colitis, an ostomy can greatly enhance the quality of that person’s life.
9. Will I be able to resume or maintain an active lifestyle if I chose? Travel, camp, swim, etc.?
Most people with an ostomy lead active lives. Indeed, some are professional athletes. Unless you have a particular problem, you can look forward to travelling, swimming, and most other activities. You may have to plan ahead more carefully, such as making sure you have extra ostomy supplies with you when travelling. Some doctors recommend avoiding contact sports to prevent injury to the stoma and may prescribe a plastic protector cap for the stoma during some activities. It’s common for people to reinforce the edge of the wafer with waterproof tape and/or wear an ostomy belt during physical activities such as running or swimming.
10. What about medications? Can I take vitamins?
Time-released and enteric-coated medications may pass through the system of those with ileostomies too quickly to be effective. Remind each of your doctors that you have an ostomy. Checking with your doctor is a good idea before taking any medication, vitamins included.
via Edmonton OA’s Mail Pouch, April 2002, via Inside Out On-line Nov/Dec 2002
Hints & Tips for Living Well
Note: Products and methods mentioned may not be suitable for everyone. Consult your doctor or NSWOC nurse before deciding to use any of them.
- Always have a change of clothes and extra ostomy supplies at work.
- Set out your supplies on the counter when it is time to change your appliance before you remove the old one.
- When travelling, always take 3 times as many supplies as you think you will need.
- Keep a list of all important phone numbers, product codes of your supplies (and sizes), name of your NSWOC Nurse, if you have one, and a step by step note of how to change your appliance in case you are unable to.
- On an airplane, always carry your supplies with you. Lost luggage is an all too common occurrence.
- When travelling in a vehicle, never store your supplies in the trunk or glove compartment. Excessive heat and cold can greatly affect your wear time. Keep them in a soft-sided cooler in the car, use an icepack if the interior of the car gets too hot (making sure that the icepack is in a plastic baggie as not to get your supplies wet).
- Skipping meals may cause your pouch to fill up with gas.
- Drink 8 glasses of water a day. People with ostomies get dehydrated very quickly.
- Medications that are time-released or long-lasting are not effective in for people with ostomies. Ask your pharmacist or doctor for liquid or chewable form.
- Make sure a family member or friend knows where you store your supplies at home, in case they need to get them for you in an emergency.
- Always take your own supplies to the hospital with you.
- Hernias are very dangerous for ostomates. Never lift more than 20 lbs if possible and always lift with your legs. When shovelling snow, use your hips as leverage against the shovel, not your abdomen. Better yet, let someone else do it for you!
- When swimming for longer periods of time, use a skin barrier wipe on the paper tape of your flange to make it waterproof.
- Itching under the flange is one of the first signs of a leak. If you detect a bit of odor along with the itching, then you can almost be sure that the seal is starting to break down and it’s time to change your appliance.
- Don’t wait until you run out of supplies before you order more. Your supplier might be out of stock and then you are really in trouble. a general rule of thumb could be, when you reach half of the box, order more.
- When using a public restroom, attach the pouch clip to your watchband or belt loop. There is nothing more frustrating than having to fish it out of the bowl. It is also a good idea to carry an extra clip in your purse or pocket for that very reason.
- A small amount of mouthwash in your pouch after emptying will keep it odour-free for the next time when you have to empty it.
- Eating a few large marshmallows may slow down output, which is helpful when it is time to change the appliance.
- Chew, chew, chew your food to avoid blockage.
- The first sign of blockage is either no output or very liquid output. Severe abdominal pain and vomiting will almost always accompany a blockage. Go directly to the Emergency Room if you have all these symptoms.
- Leg cramps are a sign of not having enough fluids.
- Wearing tight clothing for a long period of time will affect the wear time of the appliance.
- Keep a diary of when you last changed your appliance in order to know whether the time has come when you should change it again.
- To protect your skin from damage, don’t wait until your pouch starts leaking. Try to figure out how many days you usually get out of your appliance and change it before you get a leak.
- Remember that your stoma might change its size and shape over time. Periodically check it with a mirror to make sure that your flange fits properly. The hole in your flange should be no more than 1/8″ larger than your stoma.
- Try to avoid bending over at the waist for long periods of time. This might cause some discomfort and might also affect the seal of the appliance.
- If you notice large amounts of blood in the pouch, see your doctor immediately. Your stoma will bleed a little while you are cleaning around it, but it should stop within a minute or so. If it doesn’t then keep an eye on it and let your doctor know if the bleeding continues.
- Your stoma should be a bright red color, if it starts to look pale or grey, seek medical advice.
Skin Excoriation – is caused by contact with stool or urine. This is often uneven in appearance. Excoriation may occur on one side, especially where leaks occur. Duoderm may be used below the faceplate to absorb moisture and protect the skin. A thin coating of Maalox or calamine (for itching) will protect and soothe skin. These can be dried with a cool hairdryer. Nothing will stick to wet skin.
Solutions also include finding a better wafer fit. A flat or rounded abdomen can achieve a better seal and result in less leakage. A concave abdomen may require a convex appliance. If the skin has folds, a more flexible appliance may be required. Remember, a flexible appliance needs a larger opening. Exposed skin must be protected with products like Skin Prep, Skin Bond, Karaya Rings or Eakin, a dough-like washer. Skin protection does not last as long as an appliance and should be replaced after 3 or 4 days. Difficulties with stomach shape can also be addressed by a floating flange.
Allergies – occur with contact, and may be indicated by a ring around the stoma where the paste is used or tape makes contact with your skin. This can be treated like excoriation. Your NSWOC Nurse can create test spots for paste, wafer, plastic, and tape and judge your skin’s reactions to isolate the problem. It may be necessary to switch products. Appliances without tape are made by every company. Pouch covers can aid in allergies to plastic (and are a good idea when it is hot). If you use soap on the skin around your stoma, be sure to rinse well. If necessary, your NSWOC Nurse will refer you to a dermatologist. Be sure to take your own supplies for testing purposes.
Monila – is a yeast infection. The skin will peel and may look purple. Monila often occurs after treatment with antibiotics or a yeast infection elsewhere. Treatment includes washing and drying the skin thoroughly and applying micostatin powder, (not ointment or oil,) which is available over the counter. Yogurt in your diet helps fight yeast infections.
Infection – is caused by prolonged exposure to stool and is rare.
Folliculitis – is infected hair follicles, and is usually seen in men who shave around their stoma. Using Skin Prep to protect and coat the skin will help.
Chemotherapy – may cause a cycle of skin irritation. Using Duoderm under your appliance helps to keep the skin dry and protect it.
Crystal Formation – can occur for those with urinary diversions. Washing the skin and soaking it with vinegar each time the appliance is changed can prevent crystal formation. Vinegar is a mild acid that breaks down the crystal.
Pyoderma Gangrenosum – seems to be connected to ulcerative colitis and Crohn’s Disease. This entails ulceration of the peristomal skin. Prednisone injections have been used and new ointments are proving effective. Skin breakdown due to Crohn’s can occur anywhere on the body.
If possible, see your NSWOC Nurse once a year. They may notice a change before you do. There may be a new product you should know about. Even if everything is going well, your Nurse would love to know everything is OK.
Join a support group. Support groups allow you to talk about your ostomy experience with people who understand and can share helpful information. Presentations from professionals will keep you updated on new products and other helpful information.
Source: Phyllis Stephens, RN ET (based on a presentation in September 1999); Saskatoon, SK. Metro Halifax News, November 1999 via Inside Out On-line March/April 2000
By Robert Phillips, Ph.D.
You’re living with an ostomy. But that’s not good enough. You want to learn how to live well with an ostomy. You want to start getting back into the swing of things. Smart move!!!
Thousands of people have had ostomy surgery. But regardless of how this surgery has afflicted others, you want to do everything you can to take responsibility for your own life. You can help yourself to feel better both physically and psychologically!
How can your surgery affect you?
Each person is unique and deals with the circumstances surrounding, ostomy surgery in a different way. You need to analyze your situation to determine how to best live with your illness.
Because having ostomy surgery affects different people in a number of ways, you may experience some or many of the following concerns:
- Interference with daily activities.
- Interference with physical functioning.
- Changes in lifestyle and/or personality.
- Emotional reactions such as depression, anger -anxiety, helplessness, or guilt.
- Changes in relationships with family members.
- Alterations in your social life.
- Interference with your sleep.
- Feeling that you have less control.
What can you do?
Your ultimate goal is to take charge and live a happier life – despite having an ostomy. Here are a few strategies that can help you to better handle your ostomy and improve your overall health, happiness, and productivity.
1. Be a person – not a patient »
Make this the foundation of your thinking. You are a person who has had ostomy surgery, not an ill person. The only time you are a patient is when you are in the doctor’s office or in a hospital. The way you see yourself living with an ostomy is an essential part of coping successfully.
2. Understanding the unique way that your ostomy affects you and your life »
Identify the ways that your ostomy causes problems for you. Are you experiencing any problems with the pouch system, leakage, odor, skin breakdown? How does having an ostomy affect others around you? Does it limit your activities? There are many other factors that may affect you. You’ll want to identify them and determine how you’re going to deal with them.
3. Set overall goals for improving your life »
You’ll find that your efforts can include many of the following:
– Improving your ability to adapt to your situation.
– Setting reasonable, realistic, and achievable goals.
– Aiming to control your life.
– Improving day-to-day functioning.
– Improving your perspective on any problems you may be facing.
– Being more assertive and taking an active part in your health care (including dealing with medical personnel).
– Accepting and improving your ability to deal with the emotional consequences of your ostomy.
– Increasing your ability to handle negative emotions.
– Focusing more on your strengths and diminishing the impact of any weaknesses or limitations imposed by having an ostomy.
– Doing things that you like and spending less time with things you dislike.
– Enhancing positive relationships.
– Improving participation in your social network.
– Improving your life satisfaction and quality of life.
4. Pinpoint what you need to help improve your life »
Think about all the difficulties you are having living with an ostomy. Write these down on the left side of a folded piece of paper. On the right side, next to each item, write down things you can do to improve each one. Note as many alternatives as you can. Ask others for additional ideas, especially if you are not sure what to do about certain things. Keep adding to your list and plan how you will use these ideas to improve your life.
5. Anticipate the negative »
There are negative things that can happen during your life with an ostomy (leakage, skin irritation, depression, fear, sexual concerns). But some of these could also happen if you didn’t have an ostomy! The more you anticipate and prepare, the better you will cope. Isn’t this true of us all – ostomates or not?
Source: Boston, MA OAB Bulletin, via Vancouver Ostomy Highlife May/02, via Inside Out On-line Nov/Dec 2002
Assistive Devices Program (ADP)
Ontario residents may qualify for help paying for ostomy supplies through the Ontario Assistive Devices Program. The ADP helps to cover the costs of supplies for permanent ostomies, including:
• ileal conduit
• urinary continent reservoir/pouch
If you qualify, and your application is approved, you get $975 per ostomy each year. The amount is paid to you in two instalments (every six months).
If you live in a long-term care home, or receive social assistance benefits through one of the following programs, you will receive $1,300 per ostomy each year (paid in two instalments every six months).
• Ontario Works
• Ontario Disability Support Program
• Assistance to Children with Severe Disabilities
You must pay any costs over the maximum amount you receive under the program.
To qualify, you must
• be an Ontario resident
• have a valid Ontario health card
• have an ostomy requiring the equipment or supplies for six months or longer.
Note: your income is not considered in this grant
Who does not qualify
You do not qualify for the ADP if you
· already qualify for or are receiving financial support for the same equipment or supplies from the Workplace Safety and Insurance Board (WSIB);
• are a Group A Veteran and already qualify for or are receiving financial support from Veterans Affairs Canada for the same equipment or supplies.
Follow these three steps to apply:
1. See your doctor or a nurse practitioner for an examination to confirm you qualify for financial support through the ADP.
2. Fill out the application form with the help of your doctor or the nurse practitioner. They may also refer you to a specialist who can show you how to use the supplies if needed.
You choose where to buy the supplies. Your doctor, the nurse practitioner or specialist can help you find a retailer near you.
3. Mail the completed application form to:
Ontario Ministry of Health
5700 Yonge St, 7th Floor,
North York, ON M2M 4K5
1-416-327-8804 / 1-800-268-6021
After you apply
You will receive the first payment for ostomy supplies, or an enteral-feeding pump and supplies, within 30 days of the date your application is approved.
You can have payments directly deposited into your bank account. Please fill out and submit the Application for Direct Bank Payment to the address on the form as soon as possible.
Otherwise, you will receive payment by cheque in the mail.
by Barbara Skoglund of Maplewood, MN
I had ulcerative colitis for 14 years before I became so ill that my colon had to be removed. I was so afraid of having an ostomy that I postponed treatment and nearly died. Knowing my feelings about ostomies, my Doctor performed a rarely done straight ileoanal anastimosis when he couldn’t make me a j-pouch.
I lived 3 years of hell with that “straight shot” and had an ileostomy installed in December 1996. It was the best Christmas gift I ever gave myself! I had many misconceptions about living with an ostomy and I frequently encounter others with those same misconceptions. After one person too many told me that it would be better to be dead than to live like me, I decided to start a series of short articles for the internet newsgroups alt.support.ostomy and alt.support.crohns-colitis covering the facts and fiction of ostomy life.
Myth #1 – People with Ostomies Smell Bad
Modern ostomy appliances are made of lightweight odour-proof materials. No one has ever walked up to me, sniffed and said, “Boy you smell terrible. You must have an ostomy.” I spent the first year of living with an ostomy thinking everyone could smell me. Every time we drove past one of the many Minnesota cow pastures, I was sure it was me–it wasn’t.
Some ostomates worry about the smell when they empty. Our stool isn’t any more toxic than other people’s–we just empty up front–where our noses are. A touch of the flush handle and away goes the smell. The roots of this smelly myth probably stem from old time appliances. Early ostomy supplies were made from non-odour proof materials. Many ostomates had trouble controlling the odor from these old-time appliances. Thank goodness for modern technology!
Myth #2 – New Clothes Optional
While the shopaholic ostomates among us, myself included, may harbor thoughts of having a perfect excuse for buying an entire new wardrobe – it’s really not necessary. I have only had to make one change in my attire as a result of my ileostomy.
I used to wear French-cut undies and now wear briefs. It’s just more comfortable for me that way. There are some men whose stomas are poorly placed at the beltline. They frequently find suspenders easier to deal with than belts. If you have an experienced ET nurse who pays attention to such things–stomas at the beltline can be avoided. What about spandex, skin-tight leather, and bikinis? None of these items were in my wardrobe, to begin with.
But I do know a young woman from alt.support.ostomy who still wears a bikini–she just found a new style. I’m sure every ostomate has stories to tell about folks who stared and stared and still couldn’t see our pouches through our clothing! So–if you find yourself facing ostomy surgery, don’t waste time worrying about wearing muumuus or overcoats. At most you may have to buy a new swimsuit or some new undies. Though feel free to be like me and use it as an excuse to buy more clothes!
Myth #3 – Somebody to Love
A couple of times during my single days, I placed personal ads as a way to find potential mates. Before I’d write my ad I’d sit down and list all the qualities I was looking for in a mate. I wanted a partner who was smart and funny, someone who shared my interests, who shared my values, etc. NOWHERE on that list did it mention “my partner must not have an ostomy.”
But I used to think that no one out there would be interested in me if I had an ostomy. I was convinced that ostomates sat home, stinking in baggy clothes (see myths one and two) lonely and friendless. You’d think I’d still harbor this myth considering my first fiancé took a walk when I had my temporary ileostomy while my ileoanal anastimosis was healing. But it was pretty clear that we didn’t split over how I went to the bathroom.
We split because we weren’t right for each other. I’ve since found my soul mate and life partner and he couldn’t care less how I go to the bathroom. What he cares about is that I’m healthy! You see he loves me, not my body or my bowel.
BUT, BUT, BUT don’t single ostomates have a hard time with dating. Some do and some don’t. However, what I’ve found is that those who don’t date are too afraid to get out there and try. And yes, I wouldn’t be surprised if an ostomy limited someone’s casual exploits. But–If you are interested in finding a life partner who loves you, not your shell- then an ostomy won’t stop you.
If anything it’s a good test of really what a potential mate is interested in. I never think to myself, “Will you still need me when I’m 64.” I know my husband is with me for the long haul.
Myth #4 – Let’s Talk About Sex
Warning — these are the frank comments of an adult — though less racy than recent US news stories. Ok, ok, perhaps ostomates can find a life partner out there. But what about sex? This is actually one of the top questions people ask me when they find out I have an ostomy. “Can you still have sex?” Of course, I can. Reasons why my sex life has improved since the installation of my permanent ileostomy:
I am no longer in pain. Once I got healthy I no longer have those times when I just don’t feel up to making love.
When I had ulcerative colitis and when I had a straight ileoanal anastimosis, I often had perianal pain that made sex uncomfortable at the least and painful at times.
I no longer waste time worrying about having an accident during sex.
I no longer have to excuse myself to go to the bathroom “just one more time.” There can be some challenges. It’s always wise to empty your pouch before sex. While my dangling bag isn’t a problem for me, some folks find wearing cummerbunds or crotchless panties helpful. Some who wear two-piece pouches switch to a smaller pouch during intimate moments. I do have a lovely lace pouch cover I wear for some special occasions. Though I don’t feel the need to wear it every time I make love.
A very small percentage of men have sexual dysfunction problems after j-pouch, ileostomy or colostomy surgery. The type of problems ranges from total impotence to those who continue to have erections but do not ejaculate. The odds of trouble are dramatically reduced if you have an experienced surgeon. These problems don’t come from the ostomy, but rather from sloppy snipping around the rectum. Those who have their rectums and anuses removed can no longer receive anal sex (not that I’ve found too many UC/CD folks who do anyway.)
I think the biggest impact an ostomy has on one’s sex life is in the area of self-image, not in terms of physical functioning. I’ve had my ostomy for almost 2 years now and I still have days (though they are few and far between now) where I look in the mirror and cry. Where I feel ugly and damaged and very unsexy.
Then my husband will walk up behind me and kiss the back of my neck and tell me and show me how he feels about me. I know that I’m so lucky to have him. He has helped me deal with the self-image issue and picks my spirits up on those days when I feel so low. As I said before, over time I have fewer and fewer problems with the impact of my ostomy on my self image. I am able to feel sexy and act on those feelings without the pain and worry I often had when I was sick.
Myth #5 – Limits? What limits?
Whew, my legs sure hurt. I just spent the day at the Minnesota Renaissance Festival–the largest and most popular of its kind in the world. What fun! We grazed on tasteless, overpriced festival food. I found a beautiful Celtic necklace and bought 3 pairs of earrings. We saw jugglers, magicians, comedians, dancers, jousters, jesters, and much more.
My favorite was the Scottish dancers. Oh! I suspect you are wondering what my Sunday activities have to do with Ostomy Myth Five. Well–before my ostomy I wouldn’t have dared to go to such an event. I avoided any activity where bathroom availability was unknown- or known to be a problem. I just couldn’t risk it. I’ll never forget the time I went to the Wisconsin State Fair when I was in college. I went with my aunt and spent much of the day worrying–waiting for–expecting trouble.
Trouble hit in the dairy building. I rushed into the women’s room only to be confronted by the long, long, long line to the bathroom. Frankly, I didn’t make it. By the time I got into the stall, I had a mess. So there I sat crying, trying to clean myself, my bowels still pouring out. Then the pounding on the door started. “Hurry up. Don’t you know there’s a line out here.” There I sat, my eyes filled with tears, desperately trying to deal with a horrid situation and this woman was pounding on the door, yelling at me. Only one thought pounded in my head… “I wish I were dead, I wish I were dead, I wish I were dead.” Well, I don’t have experiences like that anymore. I used to think that an ostomy would limit my life — I’ve already shared my misconceptions about love and sex.
Well, the opposite is true. I spent so many years tied to the bathroom. In the last 21 months, I’ve got to live life to the fullest for the first time. I can do ANYTHING I want to now. There are many things ostomates enjoy doing–swimming, sitting in a hot tub, sports. There have been professional football and golf players among our ranks.
Let’s not forget the actress and political leaders among us. One of the active members of alt.support.ostomy participates in martial arts and another is an adventure athlete. Believe it or not–there is even a stripper in Florida with an ostomy. Those of us who spent years ill, find living with an ostomy to be a joy compared to what we endured as a result of our disease. Limits? HA! My ostomy opened that bathroom door and set me free to do anything I wanted to do.
Myth #6 – Time, time, time
Whew! Is life hectic? My job is busy, busy, busy. My grad school class starts next week and I need to somehow get over to the U to buy my books. (Their concept of evening hours for adult students is staying open to 5 pm.) I’m also trying to get a different job in the same agency, but I’ve got to get a teaching license first, and I had to fill out paperwork, and then send it to my undergraduate school to get them to fill in their part — it’s weird having to get a license for a job where I won’t be teaching, but since the job is doing professional development for teachers and they usually recruit teachers for the job, it’s one of the requirements.
That reminds me, I’ve got to revise my resume. Meanwhile, winter is coming soon to Minnesota and we have tons of leaves to rake up in the yard. We just moved into our first house this May and still have quite a list of house things to do yet. A boy to houses takes a lot of work. I’ve got to get the roses covered and the lawn furniture put away. Not to mention the laundry. My husband’s in a wedding on Saturday and we have to get his suit cleaned.
I’m also trying to redo our Web Pages. I just learned how to use FrontPage, and I am excited to be able to make my homepage much nicer. Tons to do and not enough time — Ah! Life. “What does this have to do with ostomy life?” you ask. My life is busy and hectic. I’m involved in a lot of things that take up time. Dealing with my ostomy isn’t one of them. I empty my appliance 5-7 times a day- usually when I urinate. I tend to empty more often than necessary.
According to my ET nurse, as time goes by, I’ll be less self-conscious and empty less often. I spend far less time in the bathroom than I did when I had ulcerative colitis, or when I had a straight ileoanal anastimosis. I change my appliance every 4-5 days. It takes me about 10 minutes. Because of my allergy situation, I have to change my appliance more often than most. It also takes me a bit longer because of the system I use. Most folks use a much simpler appliance system than I do. The two times I tried to switch to a different appliance were the only two times I’ve ever had a leak–so, I’ve decided to stick with what works for me. The experiences of other ostomates will be a bit different.
Many colostomates choose to take time to irrigate so they don’t have to wear an appliance. Although most ostomates have a longer wear time than I do, some have to change their appliances more often. When I hear horror stories of ostomates who have to change their systems hourly or daily–the first thing I ask is “When did you last see an ET nurse for a proper fitting?” Their answer is always the same… “never” or “years ago.” An experienced ET nurse can help an ostomate find a properly fitting appliance.
My wear time is considered short at 4-5 days. If you are getting less than 3 days then see and ET nurse ASAP. Odds are you are not using a properly fitting appliance. Managing an ostomy-emptying it and changing it–does not cut into my time. Actually, since I spend so much less time in the bathroom and doubled over in pain–my ostomy has expanded my available free time.
Myth #7 – Misconceptions
This one is more of a misconception than a myth;
Nurse – “How long have you had a colostomy?”
Barbara – “I don’t have a colostomy. I have an ileostomy.”
Nurse – “What’s that?”
There are many different types of ostomies and continent ostomies and internal pouches. Yet some people seem to call them all colostomies. Doctors, nurses, ostomates themselves seem to lump ostomies together. One type of ostomy isn’t inherently any better than another (except the loop– anything is better than a loop) but they are all a bit different. Colostomy, Ileostomy, Loop ileostomy, Urostomy, Continent Ileostomy, Koch pouch, BCIR, Indiana pouch, J pouch, S pouch, W pouch, kangaroo pouch–What are the differences?
OSTOMY – The word ostomy signifies a type of surgery required when a person has lost the normal function of the bladder or bowel due to birth defects, disease, injury or other disorders. Such operations include colostomy, ileostomy, and urostomy. The surgery allows for normal bodily wastes to be expelled through a new surgical opening (stoma) on the abdominal wall. Most persons with ostomies must wear special appliances over the stoma.
COLOSTOMY – The most common type of ostomy is a colostomy. Depending on the location and nature of the individual’s problem, a stoma may be constructed in any of the parts of the colon. While there was a time when most colon cancer patients ended up with a colostomy, today they rarely do. The key is location, location, location. If the cancer is in the anus or rectum then a colostomy is probably part of the cure.
Other diseases often resulting in colostomy, are diverticulitis, inflammation of small pockets in the wall of the colon that becomes inflamed, and sometimes cause obstruction, bleeding or perforation. There are also accidents and gunshot victims who have temporary and permanent colostomies. Birth defects can also require a colostomy. Some colostomates can “irrigate,” using a procedure analogous to an enema. This is done to clean the stool directly out of the colon through the stoma. Folks who irrigate can avoid wearing an appliance.
ILEOSTOMY – An Ileostomy is a surgically created opening in the ileum. The ileum is surgically cut into two pieces, usually as close to the end of the ileum as possible. The proximal portion of the ileum is brought to the surface of the abdomen and a stoma is created. In most cases, the distal ileum and the entire colon are then removed. The greater the length of the small intestine removed, the greater the loss of nutrient absorption. Over time, the remaining ileum will adapt and take over part of the absorptive capabilities of the colon. Ileostomies can not be irrigated and the flow of stool can not be controlled. We must always wear an appliance.
LOOP ILEOSTOMIES are temporary ileostomies where a loop of the small intestine is pulled through the abdominal wall to create a stoma. From my experience, it can be very difficult to find a properly fitted appliance for a loop ileostomy.
CONTINENT ILEOSTOMY – Here a reservoir pouch is created inside the abdomen with a portion of the terminal ileum. A valve is constructed in the pouch that is brought through the abdominal wall. A catheter or tube is inserted into the internal pouch several times a day to drain feces from the reservoir. Koch and BCIR are the most commonly performed continent ileostomies. They are named after the Doctors who designed them. The BCIR is a revision on the Koch and is only performed in a few facilities in the US. Continent folks don’t wear an appliance.
UROSTOMIES result when the bladder is removed or the normal structures are being bypassed and an opening is made in the urinary system to divert urine. A piece of ileum is used to create a urostomy stoma from which urine flows. Birth defects can also require a urostomy. Urostomies can not be irrigated and the flow of urine can not be controlled. They must always wear an appliance.
CONTINENT UROSTOMY – There are two main continent procedure alternatives to the ileal or cecal loop (others exist). In both the Indiana and Kock Pouch versions, a reservoir or pouch is created inside the abdomen with a portion of either the small or large bowel. A valve is constructed in the pouch and a stoma is brought through the abdominal wall. A catheter or tube is inserted several times daily to drain urine from the reservoir.
In the Indiana Pouch version, the ileocecal valve that is normally between the large and small intestines is relocated and used to provide continence for the pouch that is made from the large bowel. With a Kock Pouch version, the pouch and a special “nipple” valve are both made from the small bowel. In both procedures, the valve is located at the pouch outlet to hold the urine until the catheter is inserted. Continent folks don’t wear an appliance.
J POUCH, S POUCH, and W POUCH are internal pouches formed from the terminal ileum and connected to the anus. The j-pouch has become the surgery of choice for people with severe ulcerative colitis or familial polyposis. These procedures are not done on folks with Crohn’s Disease since Crohn’s disease can pop up anywhere.
This procedure is done in 1, 2 or 3 steps. Folks who have the 2 or 3 step procedure have a temporary loop ileostomy while their internal stitches heal. These internal pouches are named for their shapes. They are also called ileoanal anastimosis, pull through, endorectal pull through, pelvic pouch, or a combination of these terms. I lived for 3 years with a straight ileoanal anastimosis–I also frequently refer to it as a straight shot. Straight shots are rarely performed (because they rarely work.)
KANGAROO POUCH – where baby kangaroos nourish and grow.
(Thanks to UOA and ConvaTec’s Web Sites for some of the more technical definitions.)
Myth #8 – “I’ve never met anyone with an ostomy.”
HA! That’s what you think. There are only two ways you can “tell” if someone has an ostomy:
1. They tell you.
2. You see them in the nude.
Believe it or not, you have met many ostomates in your lifetime. You just don’t know it because they haven’t told you. I used to think I’d never met any ostomates. The week before my surgery to install my permanent ileostomy, I was in a union meeting at work. I was sitting next to the president who was also taking leave during Christmas for surgery. She was having glaucoma surgery and asked me what I was going in for. Although I’d made up my mind to have the surgery, I wasn’t going to tell anyone. So I mumbled something about intestinal surgery.
She said, “Oh. do you have Crohn’s?” I said, “No, colitis.” “Oh, are you having an ileostomy?” asked Susan. “Umm. yes,” uttered honest Barb. “Rob (her partner) has Crohn’s. He’s had an ileostomy for years.” OH, my. I’d outed myself for the first time, lo and behold it was to a woman whose partner had an ileostomy. I still wasn’t going to tell anyone.
Well–I told folks on the internet, but it’s a lot easier to tell people via a computer than in person. It was nice that Susan understood, but I sure wasn’t going to say anything to anyone else. Then my health insurance company told me that my ostomy supplies were unnecessary convenience items. Mind you, if I was a man who needed a penile implant, or if I wanted a bedpan they would pay for it.
So out I came in full force. I told everyone–my legislators, all of the state employee unions (I’m a state employee), the newspapers, any and everyone who might be able to put pressure on my insurance company. It worked, and after 5 months, I won ostomy supply coverage for all State of Minnesota employees–no matter what insurance company they had chosen. Four of our six plans cover supplies. Just mine didn’t. I’m now very OUT about my ileostomy. No, I don’t walk up to strangers and say, “Hi, I’m Barbara and I have an ileostomy.”
But I don’t hide it. I mentioned it in my annual holiday letter when I had my surgery. When a co-worker lost her dad to colon cancer, I offered my condolences and noted that I understood a bit how difficult it was since I had started developing cancer, and had to have my colon removed. “Oh, how can you live without your colon?” I said, “I have an ileostomy.” When it’s appropriate I discuss it. I’m open to share my experiences with others and share how much better my life is now.
I’d speculate that I’m much more “out” than many of my fellow ostomates. I felt forced into that situation when I had to fight my insurance company, and I’m also a very self-disclosing person, to begin with. Some ostomates only tell intimate family members. Others are out like me. Most probably fall somewhere in between. I’m sure they have met an ostomate–they never even knew it. We are everywhere.
Myth #9 – Only “OLD” people have ostomies
I’m going to be 36 in November. I’m not “old” despite what the teenagers on alt.support.ostomy think. I was 30 and living in Fargo, ND, working as the student organization and Greek adviser at NDSU when my ulcerative colitis got so bad my colon had to go. My ET nurse arranged for four friendly visitors to see me before my surgery. I was going in for a j-pouch and temporary ileostomy, but as we know came out with a straight shot.
Anyway, there I was–lying in my hospital bed…depressed and feeling sorry for myself. In walks one of the most beautiful young women I’ve ever seen. Even though it was late September, she still had a tan and sun-bleached hair. Young and perky, she wore tight jeans and strut into the room as if she owned the world. She was carrying a lovely plant and said she was looking for Barbara. “That’s me I said.” She sat down and asked, “How are you doing?” “Been better I said.” I thought she was delivering the plant as a gift from one of the sororities or student groups I worked with at NDSU.
Boy was I shocked when she said, “Your nurse Jill asked me to stop by to chat with you.” “Huh?!?” I gasped. She said “Well I was born without a bladder and I’ve had a urostomy since I was an infant. I’m 23 now. What kinds of questions do you have?” My expectation of an elderly, grandmother ostomate was blown right away. Two of my other visitors were in their 30s and the fourth was in her early 40s. Two of them had had their ostomies for years. Just as ostomies are needed to deal with a variety of medical problems, ostomates are represented in all age groups.
Granted, UOA (United Ostomy Association) studies have shown the average age of ostomates is increasing. Innovations like the j-pouch and better cancer treatments have reduced the number of ostomy surgeries. But there are still many of us, of all ages, who live with ostomies. I was surprised to learn about kids who have ostomies in childhood, but who are able to have reconstructive surgery, or for other reasons are able to be reconnected later on.
When one of my former coworkers learned I had an ileostomy she said, “One of my sons had an ostomy when he was a little boy.” Some people, like my friendly visitor in Fargo, spend their entire lives as an ostomate.
Myth #10 – Mysterious Contraptions
When my ET nurse in Fargo walked in and showed me an appliance, I was shocked! Not shocked at how it looked, rather shocked at how it didn’t look. I envisioned a large, thick, rubber bag similar to a hot water bottle. Well– it wasn’t large– just a bit bigger than my hand. It wasn’t thick–the thickness and texture were a tad thinner than a Ziploc freezer bag.
It wasn’t a red rubber either. I also didn’t know what to call the thing- ostomates use a variety of names–appliance, pouch, bag, prosthesis. Depending on your insurance company, it can also be labeled a durable medical product or a convenience item. Appliances are produced by a variety of manufacturers to meet a variety of needs. Some are one piece–where the bag and the adhesive faceplate/wafer (I think faceplate is a more descriptive term–but most folks call this a wafer) are one and the same.
Others are two-piece–a faceplate/wafer and bag that connect together with a Tupperware type seal. One-piece or two–the opening that the stoma fits through can either be precut or cut to fit. Faceplates typically have built-in skin protection called a wafer and are approximately 4″x 4″. Pouch sizes vary. Some pouches are closed-end, and others are open-ended.
Most of us use open-ended pouches that close with a plastic clip. Others prefer to use a rubber band or a twist tie. (I’m a die-hard clip woman myself.) Colostomies, ileostomies, and urostomies are all a bit different and there are appliances specifically designed to meet their specific needs. There are also different designs and options to fit the contours of your body–convexity is a word you may hear a lot–in simple terms a convex appliance helps to hold the tummy down and make sure the stoma sticks out so the stool or urine stays as far away from the wafer as possible.
And as I mentioned in Myth One–modern appliances are odor proof. Many folks just peel off the paper backing on the faceplate/wafer and stick it on. However, there are also a variety of other ostomy supplies that some of us use. Many use paste or a seal (looks like a thick O ring) to give us some extra protection around the stoma.
Many use a skin barrier to add an extra layer of protection. Some of us wear a belt that goes around the waist and clips to the faceplate/wafer. Some folks “windowpane” their appliances–by taping down all four sides with fabric or paper tape. Those of us who use these “extras” do so to extend our wear times or to give some extra protection to our skin. (It’s very important to keep the stool or urine off the skin around the stoma.)
If you are curious–one of the leading manufacturers has a web site at www.convatec.com with photos of appliances. There are still some ostomates out there who use older appliance systems that indeed were made of rubber. My ET nurse told me of the patient he met who used bread bags and duct tape! If you run into someone who hasn’t modernized, encourage them to see an ET nurse. There have been many appliance innovations over the years.
Myth #11 – Birthing Babies out my Anus
As I shared in “Let’s Talk About Sex,” the number one question I get is “Can you still have sex?” Guess what number two is? “Well, you can’t have children now can you?” HUH?!?! Since when do women give birth via their anus? Babies grow inside a woman’s uterus, not her colon! Many female ostomates give birth after their surgery.
Many male ostomates father children after their surgery. Can ostomy surgery cause infertility problems? Yes. So can other abdominal surgeries, so can other issues, so can Crohn’s disease. As I indicated in an early myth posting, some men have impotence problems after surgery. When I say “some”, I’m talking about a very small percentage.
Studies have shown that the less experienced the surgeon, the more likely the problems. It isn’t the ostomy that causes any physical problems, but rather sloppy cutting near the rectum. Patients can reduce the odds of these problems by finding an experienced surgeon.
Women may also have problems resulting from surgery. There may be fertility issues caused by adhesions, the internal scars from surgery. If an adhesion appears near the opening of the fallopian tube it could block sperm from finding their way to eggs and/or eggs finding their way into the uterus. There are surgical procedures to help clear away problematic adhesions. In-vitro is also an option.
Infertility rates are higher for women with Crohn’s Disease than women with ulcerative colitis or healthy women. However, in some cases, an ostomy could improve the fertility of a woman with Crohn’s disease–especially if she suffers from vaginal fistulas and surgery puts her into remission and clears away the fistula problem. I want to be a mother and was quite concerned about adhesions since I had 5 abdominal surgeries.
I recently asked for feedback from other ostomates. I received many notes from female ostomates who have and who have not been able to have children. Most women reported they had no fertility problems as a result of their ostomy. Of the women who discovered they were infertile, most were infertile for reasons unrelated to their ostomy. I am looking forward to the day when I can bust this myth for myself.
Myth #12 – Just a Few of Us
Many ostomates think they are all alone. This myth if fueled by comments like “I’ve never met an ostomate.” Intellectually we know we aren’t alone, but somehow we think there aren’t very many of us. According to the WOCN (ET nurse professional association)web site, “There are an estimated 500,000 persons with ostomies in North America, and more than 50,000 new ostomy surgeries are performed annually in the United States and Canada.”
Of that number, less than 25,000 are members of the UOA (United Ostomy Association – a support group in the US.) Mind you, our numbers in North America are declining because of improved surgical procedures like j-pouches and cancer resections, but there are far more ostomates than most people realize. According to the IOA, “They don’t even count people with stomas in the US, let alone Burma, BUT an estimate developed from among the 70 member countries of the IOA totals about 2.5 million.” You are not alone…
Myth #13 – Leaks
I saw a puzzling post one day on the alt.support.ostomy newsgroup. The poster asked, “other than leaks, what problems do you have?” Everyone, myself included, seems to presuppose that all ostomies leak. Well, folks, I hate to burst your bag but–ALL OSTOMY APPLIANCES DO NOT LEAK!
I cannot say I’ve never had an accident. I have had four in the nearly two years I’ve had my ileostomy. Three of the four was during a brief period of madness where I decided I knew better than my ET nurse, and I ordered a bunch of sample appliances to try. I’d heard all about the wonders of the two-piece so I wanted some Tupperware of my own–lo an behold they leaked on me. They just aren’t built for my body shape.
I also tried lightweight pouches that didn’t have convexity. Guess they didn’t fit me right either. If I’d stuck to what my ET prescribed, I’d never have had these leaks. Now I stick with what works. The fourth accident wasn’t due to appliance failure, but rather due to my own stupidity! I lifted a heavy suitcase, leaned it against my abdomen, and let it slide down my body onto the bed. The suitcase became hooked onto my pouch clip and snapped it open. Ostomates–it’s not a good idea to slide heavy objects down your tummy. It can lead to a messy situation.
So, all four of my accidents were of my own doing. If I’d stuck with what my very competent ET nurses told me would work for me, and if I’d not been silly enough to slide a suitcase down myself, I could say with confidence…I’ve never had a leak. BUT, what if I got a leak again?? I’d deal with it. Two of the four accidents I had were at home and two were not.
Actually, the first one took place at Murphy’s Landing, a recreation of a 19th-century farming village, over an hour from my home. Luckily that had a bathroom with running water, but it sure wasn’t private. I had to stand before a sink in a public restroom and change my appliance in a bathroom filled with other people.
AND I DID IT! I know I could do it again. So I do carry my emergency kit–but I haven’t had to use it once since I decided to stick with the appliance that was prescribed for me. Whenever I see ostomates post about leaks the first thing I ask is “When is the last time you were fitted by an ET nurse?” They always respond, “Never.” or “Years ago.” Phone ET, and get a properly fitted appliance.
Myth #14 – Bread and Water
What’s for Dinner? I’ll just be having a piece of dry toast and a glass of water. Maybe I’ll have a saltine for dessert. Ostomates have a special diet you know. HA! That’s what you think. Actually, that’s what I thought until I had my ileostomy. From my personal experience, my diet has expanded since I had my ileostomy put in. I’m slowly trying to add things to my diet that I avoided when I had UC.
OK, OK, I admit–I added ice-cream real quickly, it’s the vegetables I’m adding slowly. I still remember when I had ulcerative colitis how I’d have one ice cream cone a summer. My mom would take me to the Dairy Queen, and then rush, rush home so that by the time I had to go, I could make it to the bathroom. Now I can eat ice cream and pizza and other dairy without having to break any land speed records getting to the bathroom. Some of the things I eat fill me up fast, but it’s my own fault, and I choose to deal with the consequences.
I’m a cola drinker, and the caffeine does make things flush through pretty quickly. I also know some particular foods (Panino’s – yummy, yummy) fill my appliance up quickly. So when I choose to eat these things, I plan accordingly. No dinner and a movie…just dinner and home. Some ileostomates have difficulty with dehydration. I’ve experienced it myself sometimes, usually when I’m not paying attention. i.e. I walked around the Minnesota State Fair for hours in the sun without drinking anything. Dumb move.
One of the two main functions of the colon is water absorption, and although our small intestines do learn to absorb water, it is recommended that we drink a lot of water. Urostomates are also encouraged to drink a lot of water. On the plus side, I don’t have to watch my salt intake at all. My husband rarely sneaks my French fries anymore. They are way too salty for him. Some ileostomates and colostomates experience blockages with some high fiber foods.
I’ve only had a blocked feeling once–when I ate a raw apple without drinking anything at the same time. Most blockages can be freed without a trip to the Doctor. Rarely does a blockage lead to more surgery. Participants on alt.support.ostomy frequently post-diet suggestions and home remedies to release blockages. However, everyone is different. Just as with ulcerative colitis and Crohn’s disease, the impact of diet varies from individual to individual.
For example, on the top of the standard list of ileostomy no-no’s is popcorn. Well, I love popcorn and have no problems eating it. The bottom line is ostomates are just like everyone else. There are foods we can tolerate, foods we can’t, and foods we can’t tolerate but eat anyway. What those foods vary from person to person. Just as with non-ostomates.
Myth #15 – Doctors Know
An ET is my friend. This one isn’t really a myth, but rather a description of the health care professional I trust more than any other. My ET (Enterostomal Therapy) nurse! GI doctors may know when to recommend surgery, and colo-rectal surgeons may know how to make ostomies, but neither knows a damn thing about living with an ostomy.
I’ve been misinformed by many doctors over the years. I read post after post from non-ostomates quoting their doctors spreading misinformation about ostomies and ostomy life. While good doctors are willing to admit they don’t know how to manage an ostomy, arrogant ones pretend they do. They don’t. They just aren’t trained in ostomy management- ET nurses are. For more information about ET certification, see the Internet site: www.wocncb.org.
ET nurses do many things »
- They mark the proper spot for ostomy placement, paying attention to factors like belt lines and belly folds.
- They determine the appropriate appliance for patients.
- They help patients deal with any problems they are having. For example, it was an ET–three years after it happened–that figured out it was a paste allergy that caused my severe rash with my temporary ileostomy. A rash is so bad that it caused me to have my ostomy moved to the other side.
- They provide counselling and advice for patients dealing with ostomy life.
- They coordinate friendly visitors so new ostomates can ask questions and find out what to expect.
- ET nurses also deal with open wound patients.
Most ET nurses are RNs who have additional training in ET nursing. There are a few LPNs who have gone through ET training. There are a few major programs around the U.S., and I’m lucky enough to live in an area where ET nurses are plentiful since one of the schools was located in the Twin Cities. The first ET nursing program was in Cleveland, Ohio at the Cleveland Clinic. I know there are some parts of the U.S. and the world where ET nurses are not available.
If you are living in one of those areas and are having trouble with your appliance system, I suggest you try to find an ET to see. The UOA national and regional conventions typically have stoma clinics where you can see an ET nurse during the convention. Most supply companies also have ET nurses on staff to answer your questions–a phone consult isn’t the best, but it better than nothing–and it’s FREE.
The professional association for ET nurses is the WOCN. The Wound, Ostomy and Continence Nurses Society (WOCN) is a professional, international nursing society of more than 4,000 nurse professionals, who are experts in the care of patients with wound, ostomy, and continence problems. Wound, Ostomy and Continence (WOC) Nurses manage conditions such as stomas, draining wounds, fistulas, vascular ulcers, pressure ulcers, neuropathic wounds, urinary incontinence, fecal incontinence, and functional disorders of the bowel and bladder.”
The WOCN Internet site is www.wocn.org. Check it out to learn more about ET nursing. The Internet site features a search engine that can help you find an ET nurse near you. I encourage anyone contemplating ostomy surgery to find a doctor who works with an ET. If your surgeon doesn’t work with an ET nurse, then your cutter isn’t cutting edge.
Myth #16 – Ouch
“Ohhh. Doesn’t that hurt?” No.
OK, …surgery wasn’t a picnic. But when is any surgery totally pain-free?
Recovery wasn’t a walk in the park-though I sure had to walk a lot!
But day to day life with my ileostomy is pain-free.
Peeling off my appliance doesn’t even hurt. Though I do admit, I’m not hairy around my stoma. I’m sure some folks feel a bit like screaming. Imagine pulling a band-aid off a hairy body part. Some ostomy products have made my skin burn and itch– I was allergic to them, and now I avoid them. Many ostomy skin barrier wipes and pastes have alcohol in them and can sting. Recently, 3M invented a wonderful skin barrier wipe whose name says it all–”sting-free.”
99% of the time, I don’t even feel myself passing stool. When I do, it doesn’t really feel any different than passing stool through an anus. Take that back. With no hemorrhoids, fissures, or perianal tenderness passing stool through my old anus was pretty painful. But what about the burning and itching?
If you are having pain, burning or itching–then something is wrong and you should see your ET nurse to find the cause. Perhaps you are allergic to an ostomy product. Perhaps you are using an ill-fitting appliance. Perhaps you have developed adhesions or a hernia. Ostomies should not hurt–get yourself checked out if yours does.
Myth #17 – “Yuck! What a totally gross idea.”
This one is by request. I’ll be the first to admit I thought this myself. But when I really think about it, I see things a little differently. How is wiping the tail of my pouch any different than wiping my bottom? At least I can see what I’m doing now.
When I change my pouch, I have to wipe stool off my stoma. It’s a lot easier and a lot less gross than pulling down messy underwear and washing the feces off my legs from UC accidents. Ostomates may carry a bag of urine or feces. Non-ostomates just keep theirs inside. To paraphrase a wonderfully funny article on the Winnipeg Ostomy Association Internet site–So stomas aren’t real pretty. Well, your anus doesn’t look like Miss America either.
Nothing that I live with now is grosser than my colon. When they pulled that damn thing out of me it crumbled like hamburger. Talk about gross! You know what else? NOTHING is grosser than death. I’ll take this kind of “gross” over that any day.
Myth #18 – All Colon Cancer and UC Patients Need Ostomies
I was 18, when I was first diagnosed with UC, and I was sure I was going to be dead before I was 28. Why? Well, I was bound and determined to die rather than have an ostomy and ileostomies were routinely performed on UC patients after 10 years of disease–hence dead before 28.
Times have changed. Although we still haven’t found a cure for UC or CD, we have gotten closer. Asacol wasn’t even around when I was first diagnosed–let alone all the other drugs that are now available. Proper treatment can keep UC and CD in remission for many people. Research has shown that although UC folks are more prone to colon cancer than healthy folks–the odds of developing colon cancer are not high enough to merit the preventative colectomies doctors once mandated at the ten-year point.
New surgical procedures for UC patients have further reduced the odds of someone with UC needing an ostomy. J-pouches are now the surgery of choice in the U.S. There was also a time when colon cancer was an automatic ostomy. Not so these days. Improved treatments and surgical techniques can now cure early detected colon cancer pretty easily.
Most colon cancer patients do not need an ostomy. As Jim Rice is fond of saying–” location, location, location.” Rectal and anal cancers patients are more likely to need an ostomy.
You may be thinking to yourself, “Why after 17 myths telling us that ostomy life isn’t so bad are you now saying most folks won’t ever end up with an ostomy?” Well –
This is a big myth. Since I started posting my myth series, I’ve gotten a few notes from folks saying, “I don’t have an ostomy yet but.” That “Yet” most likely will never even come.
Many folks avoid necessary medical treatment out of fear of an ostomy diagnosis. This is particularly a problem with colon cancer. This is one of the leading killers in the U.S. even though it is one of the most easily treated and curable cancer. I also avoided doctor visits, as a UC patient, because I was mistakenly convinced that death was better than living with an ostomy.
My point in debunking these myths for UC/CD folks is that if–worst-case scenario–you end up with an ostomy, it isn’t the end of the world. It is the beginning of health. UC folks will be cured. Colon cancer folks are likely to be cured if caught in time. Most CD folks enter remission, and even if they flare again, their flares will be without many of the traditional effects. i.e. no rectum = no vaginal/rectal fistulas; lack of bowel control isn’t an issue with an ostomy, etc. If you end up joining our little club, it’s likely ostomy life isn’t the way you imagine it to be.
Myth #19 – Just me and my TV and lots of bills to pay
As I laid in my hospital bed, fighting to get strong enough for surgery one of my many fleeting thoughts was, “Well if I end up with an ostomy, I can stay home and watch television all day.” I worried and fretted over how I was going to be able to pay my bills. Of course, I couldn’t go back to work. Ostomates can’t hold down jobs, can they? Here are a few of the many ostomates in the world. Notice the wide variety of occupations we hold:
- Paul Ashley – management consultant
- Fred Astaire – actor/dancer
- Barbara Barrie – actress
- Rolf Benirschke – professional US football player/game show host/ConvaTec spokesperson
- Napoleon Bonaparte – a world leader and military conqueror
- Marvin Bush – financial adviser and son of former US president
- Earl – Dutch retired Air Force officer with 30 years of service in WWII, Korea, and Vietnam
- Al Geiberger – professional golfer
- Bob Hope – entertainer/comedian/actor
- Robert James – I.T. Consultant
- Bob Lee – police sergeant
- Tip O’Neil – US Speaker of the House and Ambassador to Ireland
- Kevin McHugh – the owner of research consulting company-McQ Research Services, coordinator of the CCFC IBD Research Network, educational/inspirational speaker, etc.
- William Powell – actor
- Queen Mum (colostomy since 1966)- British royal
- Suzanne Rosenthal – CCFA founder
- Red Skelton – comedian
- Barbara Skoglund – government communicator
- Ed Sullivan – TV host
- Loretta Young – actress