Ostomy Articles

Articles Included:

· A Collection of Ideas

· Moderation

· Medication Errors

· Mucus in the GI Tract

· Questions and Answers

· Abdominal Noises

· No need to Sing The Pouch Poppin' Blues

· Winter Ostomy Concerns

· When You Know You've Got Trouble

· Gone With The Wind—TV Miniseries

· On a Light Note

· Ostomy Care Around the World

· Spouses of Ostomates

· What If No One Knows How to Take Care of My Ostomy?

· The Ostomate as a Total Person

· Waste Control for Special Occasions

· Titanic and the Ostomate

· What Kind of Ostomy is Best

· The Phases of Surgical Recovery

· How to go on a Doctor's Visit

· Family and Spouse

· Cough

A Collection of Ideas

--Internet Sources

· For colostomates, tranquilizers may make the colon lazy. It can be the cause of incomplete evacuation.

· If you are beginning new medication—for any reason—keep a close eye on your stoma discharge . Contact your doctor if you suspect the medicine is going in and straight out.

· Scraps and cut-outs from barriers are great to relieve pressure of blisters or corns on one's feet. Keep them in a small jar with a tight lid and the paper backing left on until you are ready to use them.

· Use a round clothespin to roll up your tube of paste. Works for toothpaste too.

· If you still have your rectum and have pain or a full feeling, you may have a collection of mucous which should be washed out. Check with your doctor regarding this.

· Bring your problems and questions to chapter meetings; don't be afraid or embarrassed to ask questions.

· An eight ounce bag of potato chips contains about six tablespoons of oil, more fat than you should have in a day.

· Some applesauce with breakfast sometimes controls stoma noise, and the pectin in it may have a thickening effect on a too liquid output.

· Seat belt tightness around your stoma can be relieved if you clamp a wooden cloths pin on the belt where it initiates. Just pull a little more of the belt out—about an inch—install the clip and then release. Always wear a seat belt.

· Your attitude about your image will affect the attitude of your family, friends and the people around you. Be happy . . . you've been given a new life.

· Sometimes the littlest things in life are the hardest to take. You can sit on a mountain more comfortably than you can sit on a tack.

· Discard expired medications to prevent any potential adverse effects. Aspirin can be toxic to the kidneys just two or three months after expiration. The same is true for tetracycline. Many drugs just lose their effectiveness.

· Laughing is healthy for your body as well as your mind. When you laugh, you exercise your heart, lungs and adrenal glands. You also breathe more deeply, increasing the body's oxygen flow. Laughter may ease physical pain by triggering production of endorphins—natures pain killers.

· Eating foods like apricots, bananas, kidney beans, potatoes, oranges, spinach and tomatoes provides excellent sources of usable potassium which can decrease blood pressure and eliminate cramping muscles.

· Gas from carbonated drinks can distend the bowel to a point where kinking can occur. Too many soft drinks thus can produce a painful bowel obstruction.

· Lack of bulk in a colostomates diet can be part of the difficulty in elimination. This may be caused by eating too much highly refined food and not enough bulk, like bran.

· Ileostomates should not give blood because they are always about a pint low on bodily fluids anyway. There is a high risk of becoming dehydrated and/or developing kidney stones after blood donations.

· Ileostomates should not sit in one position for a lengthy period of time. This may force pouch contents upward around the stoma and cause possible leakage. Stand up frequently.

· Sharks do get cancer; therefore, shark cartilage pills offer no protection against cancer.

· Urostomates will see mucous in their urine. The ileal conduit is made from a piece of your intestine, which normally secretes mucous.

Moderation

--Hamilton, Michigan Chapter

It is several months since you had your surgery, and you have adapted just fine to your new plumbing. You have a beautiful stoma.

Changing your appliance is almost routine. Your skin has now adapted to the patch you apply, and you may wear your appliance four or five days before changing it.

Boy, this is living again! No more pain! You can go out without worrying about bathroom locations and even your arthritis seems to bother you less (prednisone can do wonders). You accept an invitation to a party for the first time in two years and really rejoice in being out with your friends again.

You drink with freedom and down quite a few handful of peanuts. You wander to the table with raw vegetables and try them again and again joining in with your friends. The dinner is delicious—including the corn on the cob. This has been a truly great night—just like old times.

Two o'clock in the morning, and you haven't slept a wink. There has been a persistent pain around your stoma that won't let you sleep. And now it is getting worse. You recall that you have not had much effluent in your pouch. What you did have was mostly water.

By three it is much worse and by four you are considering going to the emergency room. You remember reading about blockages, and try to remember remedies that were mentioned. You drink some warm tea, pull your knees to your chest and rock back and forth.

You eat some crackers, drink some grape juice, and knead the area around the stoma. You drink some more, have a little mineral oil, get in the shower and let warm water roll down your back to relax. About the time you decide to go to the hospital, you feel a bit better.

You notice that your pouch is no longer empty. When you empty your pouch, it's like pouring out a bag of peanuts in the toilet.

You have learned a great lesson. Sure, you can eat nuts, popcorn, raw vegetables or corn on the cob—but common sense will now tell you in the future not to eat huge quantities of them all at the same time. Eat them in moderation, drink and chew your food better. Let me repeat: Chew your food better. Eat in moderation. Drink plenty of fluids.

Medication Errors

--Oneonta New York Chapter

Unfortunately, medication errors do occur. About half of the patient safety issues in health care are related to medications. These tips will help you prevent medication errors:

· Keep a list that includes the name, strength and frequency of each medication you take. Update the list every time your medicines change.

· Ask you pharmacist to print the name and purpose of the drug on the prescription. (Most pharmacies do this routinely.)

· Ask your pharmacist about your medications.

· Follow your doctor's instructions.

· Throw away old bottles so they will not be confused with current medications.

· Keep medications out of your grandchildren's reach.

· Don't share your medications with others.

Answer the following questions for each medication you take:

· What is the name of the medicine?

· What is the medicine's purpose?

· How am I suppose to take it

· How long am I to take it.

· Is it safe to take with other medicines or dietary supplements I am taking?

· What food, drink or activities should I avoid while taking this medicine?

Mucus in the GI Tract

--Internet Sources

Mucus is a thick secretion composed of water, electrolytes and a mucopolysaccharide. Though slightly different in the various parts of the gastrointestinal (GI) tract, it has several important characteristics which make it an excellent lubricant and protector for the wall of the gut.

It is inherently adherent. This means that in contact with food and other particles, it immediately adheres to and spreads as a thin film over the surfaces.

The lining of the mouth and esophagus are made of the same skin that is on the outside of our bodies. Mucus allows food to pass into our stomachs easily. It also offers some protection from irritants.

Coating the wall of the gut, mucus helps prevent active contact of food particles with these parts thereby providing protection to sensitive digestive parts.

Mucus has a property that allows particles to slide along the walls of the GI tract with great ease. It also allows particles to adhere to each other thus helping form the fecal mass that is expelled during a bowel movement.

Mucus is strongly resistant to digestion by GI enzymes. The mucopolysaccharide of mucus is capable of neutralizing small amount of acid or alkali.

These properties of mucus allow food to pass along the GI tract easily, preventing friction-caused or chemical damage to the tract lining.

Questions and Answers

--ReRoute, Evansville, IN

Is it safe for colostomates to take codeine?

Codeine affects muscle contractions and has unwanted effects.  It should be taken only on a doctor’s advice.  Also, colostomates who take antihistamines during the sneezing season may find that these drugs have a tendency to slow down intestinal action and the irrigation process becomes slower.  Some report relief from the drug reaction by increasing the fluid intake the day they irrigate, or by eating laxative food.

Should I wash fruits and vegetables with soap and water?

Cold water, yes;  soap or detergent , no.  Scrubbing with water (and perhaps a brush) will remove nearly all dirt, as well as bacteria and some pesticide residues, if any are present on the surface of fruits and vegetables.  There’s no evidence that soap is better than plain water at cleaning produce.   In  addition,   soap    can leave its own residues, which can cause nausea or diarrhea.  Soft items such as mushrooms or strawberries are most likely to retain a soapy aftertaste.  Some liquid cleansers claim to be "organic" and most claim (or imply) that they have a special ability to remove pesticides.  No evidence has been found to support this.  These cleansers are a good way to send money down the drain.

How often are stomal revisions required?

The need for reconstruction of a colostomy occurs infrequently, probably less than 5%.  The need for reconstruction of ileostomies on the other hand occurs much more frequently, probably between 10% and 15%.  This is due to a number of reasons:

First of all, average age of ileostomates is much younger than that of colostomates, so they must live with their ostomies for a much longer period of time during which factors can arise necessitating stomal revision (e.g. massive weight gain, trauma, unrelated disease and the like).

Secondly, many of the diseases for which ileostomies are done tend to recur and can sabotage a beautifully made functional stoma.  Our old nemesis, Chron’s Disease, is the greatest offender in this regard.

Finally, ileostomies are simply more "finicky" than colostomies, due to the looser and caustic character of the stool at that point in the intestinal tract.  Thus  they  will cause  problems  unless   things  are proper.

What is a revision?

The term applies to a surgical correction of the stoma.  This may be a small procedure done in out-patient surgery, or it may be a procedure requiring hospitalization. Four common reasons for revisions are:  a tight stoma; a prolapse, when the stoma becomes very long and large; a retraction, when the stoma becomes so short that it is below skin level; or in the case of a hernia so near the ostomy that it interferes with management.  But please bear in mind that these conditions may be present without causing much trouble—in which case a revision is not needed.

Abdominal Noises

Adapted by The New Outlook

Everyone seems to receive those certain messages from inside our tummy at some time or another. Rumbles, grumbles, growls and howls…these noises come from the abdomen and are sometimes noticed by anyone within hearing distance.

Since this happens to everyone, you would think that we could just laugh them off or ignore them. Instead, we are embarrassed. As ostomates, we wonder if something is wrong since it seems to happen more often with us. Or, at least we seem to be more sensitive to it than we were before we had surgery.

These abdominal noises are formally named barborygmi (bore-bore-rig-my). If pain accompanies these noises, it could be a sign of an obstruction, an ulcer or a gall bladder problem. It is necessary to see a doctor if these conditions persist. However, it is usual that all these sounds with all there fury really signify nothing important. The cause may be any of the following:

· You are hungry. Peristalsis goes on whether there's anything to move or not.

· You are nervous. Peristalsis increases with stress.

· You have been drinking coffee, tea, cola or beer. These also stimulate peristalsis. Since these are often drank on an empty stomach, they produce gurgles as peristalsis redoubles its movement.

There is literature about lowering ones cholesterol by eating a high fiber diet. You may have taken this advise and adder these high fiber foods to your diet. Digesting fiber produces gas therefore, abdominal noises will increase. If you wear an appliance, you will notice that it quickly fills with gas, and you are wearing a balloon.

Eating too many carbohydrates will also increase gas. Our digestive systems do not digest starches and sugars as easily as protein and fats. The concerns are often lactose, a sugar found in milk and mild products, sorbitol, a sugar free sweetener, and raffinose and stachyose, sugar in dried beans. The result is more gas gurgling.

You may be eating too fast, have your mouth open when eating or talking while eating. Your mother always told you it was impolite, but she didn't mention that you would swallow air. Air which makes grumbly noises as it is moved along the digestive tract.

To prevent gas eat a snack of healthy fruit or vegetables between meals if your are hungry. You may also eat smaller more frequent meals. And finally, eat slowly, chew your food well and don’t gulp.

No Need to Sing, The Pouch Poppin' Blues

Adapted by The New Outlook, Chicago's North Suburban Chapter UOA

Worried about your pouch popping off'?" Good! You're not dead, yet!

Take heart. These days with the advances in modern appliances, and if care has been taken when the pouch was applied, this will almost never happen. But we need to do our part.  Look, pouches pop off when they're full, and we move fast. So if you don't want to stop moving, better keep that pouch pretty empty. For this reason, some ostomates wear the big pouches. Many of our members wear 9" pouches because they show less and are more convenient. Some of the smaller pouches actually look sporty. I personally like a sporty looking pouch.

There is no real issue with having a full pouch, if you empty when you urinate. A male member said: "The biggest change my ostomy has made in my life is that I never use the urinal any more."

He empties his pouch every chance he gets, which means that he empties it when he urinates. Most of us don't make special trips to the bathroom just to empty a pouch, unless one has a urostomy. This statement applies mostly to ileostomates.

We're always asked, "How often do you empty your pouch?" We answer, "About as often as we urinate. Tell me, how often do you go now?" Virtually nobody counts this. Why should we. Wear a pouch size that you are most comfortable using. Manufacturers make 4" to 16" for the unique needs of all kinds of people. There is no one best answer. Pouches should always be emptied when you know they are about 1/4 to 1/3 full, or when you go to the bathroom for other reasons. This is only a guide. We all end up eating a bigger meal than we plan, or eat an ingredient or bacteria which temporarily and harmlessly speeds us up. We get up from the table, go to the bathroom and notice a ½ full pouch. We just empty it and go on our way. The huge benefit we have over our non-ostomy friends is that we go when we want, not when our body makes us.

Intimate moments pose another little challenge. It could be a bit tough on the pouch. Some feel a need to valiantly defend spontaneity. Most just resigned ourselves to simply emptying the pouch before getting started. Some find it's a good investment wear one of those commercial wide elastic fabric bands, or a cummerbund to hold the pouch.

As a practical note, it is most important to be intimate if you are otherwise able. Do not let the pouch become an issue. An easy way to keep it out of the way is to simple fold it up in half, and tape it to your stomach. No mini needed, only a few seconds of preparation, and you're ready for action. Believe me, there is no substantial delay to spontaneous sex caused from a minute empting

and taping your pouch. Overcome any psychological issues you have with your ostomy. There is no issue so substantial that it should keep you from having an active and satisfying sex life.

But the best defense is the truest--we need to stop taking ourselves so seriously. Once we've taken our best shot at responsible living, we need to stop worrying. Very rarely, trouble will come, and when it does, our lovers will smother us in tears and kisses and tell us the truth: "It's okay." Our friends will support us, and our enemies--well, our enemies will still be the same. One of our members tells a story about how she was giving a presentation at work and her pouch popped off. She said she quickly explained what had happened. Her career long nemesis saw this and busted out laughing saying, "I always told you she was full of it." She said, she just cleaned herself up, put on her spare pants and went back to finish her meeting. Go and do likewise.

Winter Ostomy Concerns

--Rock County, Wisconsin Chapter

For those of us who live in the northern climates and have undergone ostomy surgeries, it is important to use caution when shoveling snow. Because we have had abdominal incisions, we are at

higher risk for hernias than the general public, and must protect ourselves from stoma injury. Keep

in mind the following safety precautions when shoveling your way through the piles of snow that await us this winter:

.... Because we are all different, check with your physician to see if there are weight limitations for you to push or lift.

.... Do a little at a time and rest in-between, it does not usually all have to be done at once.

.... Pushing the snow may be easier than lifting every shovel full.

.... Hold the handle slightly to the side of your body as you push the shovel along; that way, if you were to hit an uneven part of the driveway or sidewalk, the handle would not suddenly poke into your abdomen or stoma.

....Drink plenty of fluids before, during and after shoveling. Shoveling is strenuous exercise.

....Don't hold your breath while straining to lift heavy snow; breathe through the lift.

.... Wear boots that have a good grip--not ones which may cause you to slip and fall.

.... If you are not physically up to shoveling safely, hire someone else to do it or ask a relative or friend to do it for you. It is not worth injuring yourself or facing additional surgery just to get it done!

Editor's note: You may not be aware of your stoma getting cold, as it has no pain sensors. Some people cover their stomas by wearing a longer length coat, some by carefully pinning a washcloth over the stoma and pouch as added insulation.   Don't forget the contents of the pouch--as any northerner with a stoma can tell you, the contents can get ice cold if not covered--observe caution that this cold stuff does not get up by your stoma when you empty your pouch. You wouldn't rinse with ice cold water, don't accidentally incur injury with ice cold contents.

When You Know You've Got Trouble

--Edmonton Ostomy Chapter, Inside Out

When You Know You've Got Trouble

Ostomates in general, as individuals, are happy and healthy

due to their surgery.

They are no longer in trouble due to illness.

So there should be a way to know when they are in trouble. . . .

You know you've got trouble when you:

     walk into a public washroom and the stalls have no doors.

     have a dream that you are swimming and wake up and you are.

     are taking a physical and the doctor says, "What's that thing?"

     can't laugh at the minor things that cause trouble.

Gone With the Wind TV Miniseries

The Ostomy Connection

--Better Together Club, ConvaTec

A Book about Barbara Barrie's story with a Colostomy.

It was a hot day in Charleston, and actress Barbara Barrie, dressed in petticoats, a taffeta dress and bonnet, was outdoors on the set of Scarlet, the TV miniseries Gone With the Wind sequel. The year was 1994.

Barrie, a television, stage and movie actress, had a busy career, a wonderful husband and two successful children. She had won a Tony nomination for her role in the Sondheim musical Company, an Academy Award nomination for best actress in Breaking Away, and had been acting the role of Mrs. Barney Miller in the television series for several years.

She was a woman of great vitality, but that day Barrie returned to her trailer after the shoot on the set of Scarlet feeling incredibly weak. The next day she began to bleed through the rectum, and not long after she was diagnosed with colon cancer.

She tells the story of her diagnosis, treatment and recovery in her new book…Second Act: Life After Colostomy and Other Adventures (Scribner, ISBN: 0-684-83587-8). She tells it with honesty, intelligence and a light touch. Like Rolf Benirschke's, Alive and Kicking, this is a poignant story for anyone who has had an ostomy.

Barrie's book has interesting twists and turns; the doctors who come and go during her treatment, the complications of her recovery, the impact the illness has had on her career and the way her husband Jay and her two children have dealt with her illness. The backdrop of the narrative is the New York theater and Manhattan, where Barrie and her husband live. There are also cameo appearances by Anne Meara, Rue McClanahan, Carl Reiner, Mike Nichols and other show business notables.

But the essence of the book is Barrie's illness, and she leaves out few details--what her X rays looked like, and what it was like evacuating before a procedure: "That night I drank a gallon of something called GoLytely...except you don't go-lightly." She also talks about her operation, stoma, appliances, love making, fears, frustrations and embarrassments. The unflinching detail makes her ultimate adjustment all the more inspiring.

And whimsical. This is Barrie talking about her ninth day in the hospital after her operation. "I had banned all visitors except Jay and the children. I prefer to heal on my own. I needed the quiet of an empty room, my books, my moisturizer, Public Television, classical music from WQXR in NY and Court TV. I didn't want to play the role of cheery, optimistic hostess in the bed. It would have been too tiring and hypocritical." The book also highlights the importance of the enterostomal nurse. In Barrie's case it was Terry Haus, a nurse at Columbia Presbyterian Hospital in NYC. The two developed a close bond forged on such occasions when Haus journeyed to Barrie's Fire Island vacation home for what the author calls "The Great Irrigation Teach-in." Amazingly, Barrie managed to work throughout her treatment, appearing in an off-Broadway play even on the days she had chemotherapy. And she is still acting. She just finished playing Brooke Shields' grandmother in the hit series, Suddenly Susan.

    Like all good autobiographies, Barrie's book introduces us to a singularly interesting individual who lives life to the fullest. Her disease, as the title points out, was only a second chapter.

On a Light Note:

Who says we Ostomates don't have a healthy sense of Humor ?

Dear Ron,

Thanks for your e-mail. I would be more than happy for you to publish my ramblings.  I started my typing tantrum one night when I found a website dealing with ostomy humor after I had an ordeal with "Mr. Pain in the Neck Ostomy" who decided it was time to fail right in the middle of Wal Mart. (Yes, it really did happen!) 

I'll tell you, there is nothing more traumatizing than feeling that warm feeling and knowing exactly what is happening, while you are wearing light colored blue jeans and a waist length jacket that doesn't cover the damage being done, knowing full well that your spouse is in the polar opposite end of the store in the automotive section. Did you know that the pockets on a short jacket will not stretch down to your knees?  Anyway, I located my husband and announced "oil change be damned, I have to go!"

As the long suffering husband of an ileostomate, no questions were asked and the oil and filter stayed in the store and we went home. Now, whenever you have a major appliance failure and have to traverse the entire length of a store to locate the person you came with, you just know that there is nothing you can do to hide the icky spot.  When that little puppy starts to erupt, ain't no one gonna stop it. 

After arriving home with the knowledge that numerous people more than likely noticed the woman with the short jacket and the strange blue jeans with those odd markings on the front, I did what anyone in the same situation would do.  I got "major league" ticked off.   After completing the "clean up ritual", I started searching the Internet for perhaps someone else who had "been there done that". After reading some of the other stories, I just started typing out my frustrations.

I had given the webmaster of that site permission to release my web address in case someone else out there was going through the same kind of nightmare and wanted to chat.  As a result of that, I have received numerous e-mails from all over the world and they all said the same thing.  "Been there done that!

"

I am thrilled that you would like to publish my story and as before, you are more than welcome to include my e-mail address for anyone who may want to chat. Thanks for caring,

Janice  aka:  The Lady from Glad

Ostomy Care Around The World

--Ostogram, Santa Clara, CA

In Russia, very little information is obtainable in ostomy care. We do know there are almost no skin barrier products. They also use the old, 1950's style, rubber pouches that are not odor proof. The more modern barriers and pouches are only available on the black market. Non are imported there. As for China, at the present time, the government is sympathetic toward ostomy needs, but there are other more pressing health problems. Ostomy care after surgery has the lowest priority. Generally, most colostomates anywhere overseas do not irrigate for the simple reason that bathrooms are often inadequate or non- existent, and water is poor in quality.

In Nigeria, for instance, sanitary facilities are very primitive, with street sewers serving as toilets. In Great Britain, and Sweden supplies are free to ostomates. Sweden also requires that all ingredients in any product must be labeled so allergies can be avoided.

Holland has a good range of ostomy products, and stomas here are still "rosebuds" not "tulips." France has free appliances, but the situation is unrealistic, for manufacturers get the same price for basic equipments as for the newer premium products. A manufacturer would receive the same reimbursement for an extended wear barrier as it would a standard wear barrier. This means that the best quality supplies are hard to find, or only available on the black market.

pain provides free supplies to patients, but there is 50% duty on imported supplies. Since the best products and the widest variety come from the U.S., or other European Countries, ostomates have very little choice. Interestingly, it was these manufacturers that formed the Spanish Ostomy Association for patients.

Eastern Europe is very limited in the availability of modern appliances. In India there are severe restrictions on the importation of appliances. It was only in 1975 that the first ostomy association in India was formed, and in 1978 when the first stoma clinic came into existence.

Japan and Africa in general do not have a large number of ostomates. Probably as a result of high roughage present in the diet and very little beef, fat, and refined flour consumed, although the numbers are increasing greatly. For those few ostomates, there is a definite stigma attached. Japan is just now starting to import quality ostomy supplies from the U.S. and Europe. Just a few years ago, mostly clear plastic bags or gauze are used. There are a few ET's in Japan who trained in the U.S., but they work for manufacturers not hospitals.

In Australia, the government provides free appliances and supplies for ostomy association members only. And, interestingly, in spite of the fact that there is the highest ratio of ET's to the population of anywhere else on earth, people in general do not accept stomas as readily as in the U.S.

New Zealand, Scotland, and Ireland have very high rates of colon cancer, probably due to the high beef and fat intake coupled with low residue. Free supplies are dispensed through the hospital and visiting nurse systems.

South America is hampered in getting supplies because of high import duties, which can run as high

as 30%. Patients pay for all their own equipment. The Union of South Africa provides very good care and modern appliances. As a side note, many natives in the hospital walk around with an IV in their arms and the IV fluid bag on their heads.

Argentina and Brazil are just beginning to get their first ET's. In contrast, Mexico is really in need of help. People who need ostomy surgery are considered terminally ill. They die. There are few ostomates in Mexico. The few are rich.

Editor's note: The world is changing very quickly. The information that is published is often obsolete as we receive it. At a recent visit to a major ostomy manufacturer in 2002, we found the market for ostomy equipment is growing, both in the U.S. and in the world. The real reason for this is education and acceptance of a new life with an ostomy. Currently, most people who need ostomy surgery, for all the dozens of reasons, do not get it done. They die.

Spouses of Ostomates

--Inside Out, Edmonton Ostomy Chapter

Recognition for the Spouse

At no time has a genuine and real recognition been given to the ostomate's spouse. The spouse deserves more credit than anyone can possibly bestow on him/her. Try for one moment, if you can, to imagine that the shoe is on the other foot; that is, that your spouse has the ostomy, and you do not. Now you will find yourself waiting to use the bathroom, waiting for your mate to get through irrigation or to replace the appliance. When you go out of town or make a visit, and your spouse has an "accident" you will have to cut short your outing, and go home so the ostomate may clean up, not to mention that all the way home there may be an odor attached with the drive.

The spouse of the ostomate should be given a great big orchid, and we should all thank God that we

have persons like our spouses in our midst...and that goes for families as well.

For most of us our spouse is very happy to have us alive. Ostomy surgery gave us a new life, and our life partner may be more thankful than we are to have us with them. For those of us with Crohn's or colitis, our lives are better than ever. Our mates may once again have us all to themselves, without sharing us with a disease. It's nice being married. It's nice being healthy.

What if no one knows how to take care of my ostomy ?

-- Baltimore Ostomy Bulletin

A Point to ponder...

During a recent hospitalization, I had "no hands" because of IVs, and when my appliance needed to

be changed, I found myself giving instructions to two cooperative assistants.   Each had a sense of humor, which was needed by the time I was patched, scaled and bagged. Later I thought, "What if I

had been unable to speak?" I had nothing written down; none of my family knows exactly how I prepare and change the appliance.

Then in another newsletter, I read, "Does anyone know how to care for your ostomy?" In case no one is available to help, have ready such specific instructions such as:

· What to do.

· Where supplies are kept.

· What not to do.

Anticipate such questions as:

· "Can you be placed on your abdomen for an extended time?"

· "Are you accustomed to daily irrigations?"

· "Should you not have an irrigation?"

Carry instructions with you--always. None of us is immune to accidents that can mess up your lifestyle. If you are unconscious, these facts will be especially important. Damage may be done to your body. Severe illness may result.

Likely, no one in your household knows what is done behind the closed bathroom door, and what shouldn't be done! How could they possibly help? What about while traveling, or an accident where

you are unconscious? Sound far fetched? I was just involved in a rear-end car accident with a paramedic, and had an emergency room trip. Teach someone at home--and make a procedure list so someone else can do it when you can't.

The Ostomate as a Total Person

By Albert Lyons, MD, Dallas, TX

The ostomate as a total person includes the worker, the family member, the social being, the sexual being, and the physically active being. To achieve this totality after surgery, the ostomate needs doctors, nurses, ET, friends, family, and his own individual will, to become a total person.

A proper mixture of optimism and realism is needed. Some modifications may be needed in one's lifestyle. It's all right to be upset by this drastic change, but it depends on how well this mixture is worked out, whether the person adjusts well or not. UOA chapter members can help with this.

Right after surgery, most people feel like a small person attached to a large stoma. Everything seems to revolve around this stoma--daily care, adjustments, even the simplest of movements. As days go by, the ostomate begins to feel once more like a person, this time with a stoma. Adjustment has begun. This may take a long or a short time, depending on the person. Anger and depression after ostomy surgery is perfectly natural.

Becoming a certified visitor is one of the best ways for the ostomate to adapt to his own surgery, as well as being helpful and providing support to a new ostomate. Each visit helps reinforce the visitor's own attitude toward his situation, while providing positive reinforcement for a new patient.

The spouse, or another family member, can be present when things are explained to the patient. They will all be involved and should be included. The family also requires some adjusting to the ostomy surgery. Questions can be answered privately if needed.

Most people will have some difficulty in making changes in lifestyle or body image. This is to be expected. However, if progress is not made in a reasonable time frame, then psychiatric help may be needed. If a relationship can be established with a counselor before surgery, it can help the ostomate make a smoother transition to his new life after surgery. Of course, this situation is not always possible, as some surgeries are done in an emergency with no prior knowledge of the illness.

Difference types of ostomy surgery may result in impotency and/or sterility. One's sexuality need not depend on one's capacity to perform sexually. There are many forms of sexual expression. One's sexuality depends on how one views himself.

Ostomates want to share and help others as well as maintain their own personal space. They may not wish to discuss their surgery with everyone. It is up to each person to decide who knows about his surgery. In the beginning, an ostomate may feel that "everyone knows," but this is not the case.

Participating in an ostomy association does not need to invade the individual patient's privacy. His wishes will be respected by the chapter. It is perfectly all right for an ostomate not to tell everybody he has had ostomy surgery, as long as this doesn't progress into hiding at home to avoid facing reality.

Remember--every day there are new ostomates who could use your help.

Waste Control for Special Occasions

This will help!! 

--The New Outlook, Chicago's North Suburban Chapter UOA

A new ileostomate once called an officer of our ostomy chapter to ask whether she was blocked. Nothing much at all had come through her stoma in 12 hours. Asked what she had eaten, she said, "A lot of things. Eggs for breakfast; a rice dish for lunch; cheese and chicken for dinner." Well, all those things make almost no residue at all. See was in no pain whatsoever. She was told to eat nothing and to call back the following day.

When she did, she said there was finally some activity. She was drinking water throughout this entire time. She never had any pain or other issue. Her ileostomy was not running like it usually did, and it scared her. This was the first time she tried to empty her pouch and nothing came out. Real blockages hurt. The food we eat may not leave the usual waste we are used to. Always monitor these situation carefully. It may just pass, or turn into something more serious.

It is far healthier to eat fruits and vegetables, but it is useful to know that juices, not milk, some meats, breads, eggs, cheeses and rice, not potatoes, will leave will your pouch quite empty.

Things that make a lot of residue contain cellulose. Melons, nuts, oatmeal and bananas all make for thicker stool.

We may not have bowel control, but we can occasionally decide how much we want to put out if a special occasion will keep us in tighter clothes, or away from a bathroom for a long time. But do not cut down on liquids. Extra liquid will leave the body through the kidneys, not the stoma. And as you already know, dehydration is dangerous. Remember, you've got your life back.

Titanic and the Ostomate

By Ron Gould, Chicago's North Suburban Chapter UOA

Many times life shows the character of us all. A revelation of our past tells us who we are today. A life story is an example, and many times, describes who we are as an ostomate.

The movie Titanic comes to mind. I did not see the movie, only the commercial of the couple standing at the bow of a ship, but that was enough for me.   As a young sailor I dared to try an experience, like the Titanic preview. It was 1960, and about 300 miles out to sea east of New York City, in the deep blackness of the night ocean, on the Warship, USS Cascade, AD16, a destroyer tender with 500 able men. She was equipped with electronics labs, dental and general surgery, torpedo repair, munitions and the like. She handled the jobs that destroyers were not equipped to handle.

That night, I left the electronics lab, on an absolutely dark moonless night, and felt my way in total darkness, with only starlight, blindly, holding onto the dark invisible starboard handrails, some three stories above the ocean. I worked my way to the bow, like the Titanic commercial, only 38 years earlier. The sea was as usual, totally black at night. I hoped none of the deck crew had removed any of the snap chains for any purpose, as I would fall several stories to the ocean, to my demise, unknown, into the dark seas, 300 some miles from land. I was progressing only by feel.

I passed the five inch gun turrets in the dark, not being able to see them, but remembering the pressure wave that would kick me in the chest when the shells would go off. Finally, I reached the bow, looking back at the red night running lights in the blackness about eight stories above me on the mast, and 150 feet back behind me above the bridge. I had been up there repairing, too. I knew I would be court-martialed for this stunt if the bridge spotlights came on.

Passing the giant anchor chain in the dark, I made it to the bow, and "rode the bow", holding on for dear life. The ship was diving maybe three stores into the waves as the engines surged, and I was swaying at the same time from starboard to port.  I watched the white starlight sparkled waves actually fly up above me in a V shape, as I held onto the bow, as we plowed into the heavy seas, swaying side to side, and up and down. I finally became very frightened, and slowly, blindly, felt my

way back. What a joy to see the warm inviting light, glowing in the porthole of the hatch of the electronics lab.  A few cups of coffee, and talk with friends, and I was "home" again.

How much does this describe you? I look across us at the meetings, and I see a lot of similarity. Have you not, in health, dared to go up to the "bow" in life?   It felt great! Then disease made you

very afraid, and you felt your way in the darkness of your life, holding with blind hope onto "handrails" in the darkness that you could not see? Feeling the "kick" in your chest from the impacts of the surgery on your entire future life.

As you learned how to cope at our ostomy meetings, The New Outlook, and from your ET, you started to see the warm glow of light of "home" at the familiar porthole? You were not lost at sea, you survived. Your strength shows.   You are at the Chapter meetings, because you have the intestinal fortitude to endure this little challenge ostomy surgery offered you.

The flickering light has returned to be that same gleam in your eye that lead you, in life, up to the "bow" in the first place. That is why you are at meetings. You are still strong, and still full of wonder at life's adventures. We can salute ourselves. We have gone to the bow, felt the raw fear, gone past it, and go forward to a meaningful life. A few cups of coffee, and a talk with understanding friends, and you are "home" again.

The warm glow of the porthole that you see is the rest of your  life. 

What Kind of Ostomy is Best?

--Lawton-Fort Sills, OK

Have you ever noticed at one of our meetings that everyone thinks his/her own ostomy is the best?

The irrigating colostomate says, "I couldn't stand to wear that pouch all the time. It would drive me crazy."

A colostomate says, "I like the way I only have to empty my pouch once or twice a day. I'd hate to have it always running."

The ileostomate says, "I couldn't stand having to irrigate or wonder when my pouch would get full. I'd rather just wear my pouch all the time and not have the bother."

The continent says, "I'd rather catheterize than have to wear a pouch all the time."

The pull-through says, "I couldn't stand having a stoma. I'd rather go to the bathroom several times a day."

The urostomate is strangely silent, but is thinking to themselves, "I'm so lucky, because I only have to use the bathroom once a day."

What kind of ostomy is the best? Why mine is of course!

The Phases of Surgical Recovery

By Dr. Albert G. Wagoner

Each patient, along with the family, usually goes through four phases of recovery, following an accident or illness that results in loss of function of an important part of the body. Only the time required for each phase varies. Knowledge of the four phases of recovery is essential:

The Shock Phase—The period of psychological impact. Probably, you remember nothing of this phase after your operation. Nevertheless, it is a phase that requires a lot of support.

The Defensive Retreat Phase—The period in which you defend yourself against the implication of the crisis. You avoid reality. Characteristic in this period is wishful thinking or denial, or repression of your actual condition. For example, an ostomate believes that his/her entire colon is still there and will be connected later.

The Phase of Acknowledgment—In this period you face reality. As you give up the existing old structure, you may enter into a period, at least temporarily, of depression, apathy, agitation, or bitterness and of high anxiety. You hate your stoma, yourself, you cry a lot, pity or condemn yourself. You may not eat, be unable to sleep or want to be left to die. In this phase you need all the support that can be mustered.

The Phase of Adaptation—Now, you actively cope with the situation in a constructive manner. You adapt, during a shorter or longer period, the adjustments that are necessary. You begin to establish new structures and develop a new sense of worth, with the aid of an ET nurse and an ostomy visitor, you can learn about living with an ostomy. Aided by your physician, social workers, ostomy association and family, you go about rebuilding and altering the life that brought about the condition. Sound familiar?

How to go on a Doctor's Visit

--Lutheran General Hospital

Have you ever gone to a medical appointment only to find yourself unable to remember the details of your health history or struggling to recall your questions for the doctor? If so, you are not alone. It can be tough explaining your symptoms or understanding your doctor's advise, especially if you are anxious or not feeling well. Medical professionals offer this advise when for making the most of your doctor visits:

Organize a health file: It is always useful to have information about your past history on hand. Bring a detailed list of previous medical issues; i.e., the dates you had surgery and what was done; medications taken and any reactions.

Also bring pertinent information about your family's health history and records of immunizations. Ask your doctor for copies of your medical records and any relevant test results to keep in your personal files. Don't forget to keep a list of previous doctors' names and addresses.

Schedule your appointment wisely: Plan ahead for your appointment by getting your medical records from laboratories or previous physicians transferred to your doctor's office. When scheduling appointments, ask if certain days of the week are less busy. Also ask about the expected length of the appointment so you can plan you time accordingly. If neither of you feel rushed, you are more likely to cover all the issues you want to discuss.

Bring your medication bottles: Your doctor will want to know about the medications you are taking, their dosage and frequency, how long you have been taking them and possibly contact the prescribing physician. Having the actual bottle provides all this information. Don't forget the over-the-counter remedies, vitamins and herbs you are taking. All of these can impact your diagnosis and your treatment.

Make a list: It is easy to feel tongue-tied, especially if it is your first visit with a new doctor. To ease some of this anxiety, write down your thoughts ahead of time. Having this information on hand will keep you from forgetting any questions you have. A list is particularly helpful for those with multiple health needs. It gives your doctor a complete picture of your concerns and helps prioritize issues that need to be addressed.

Be Prepared for questions about your symptoms: Before your appointment, take a few moments to really think about your condition. When did you first notice the problem? Have you had the problem before? What are your symptoms? How often do they occur? If you are in pain, would you describe it as a dull ache or a stabbing pain? What have you done for it? Does anything make it worse? Have there been changes lately in your life related to stress, medications, food or exercise? The more clearly you can define the health problems, the more likely your doctor will be able to find the best possible solution.

Bring your diary with you: At your appointment, having a diary is helpful for many reasons. Write down when the doctor thinks you will start noticing improvements in your health condition, the dates and directions for receiving any lab test results and the date and time of your next visit. You may also find a planner useful for jotting down your doctor's advice for taking prescribed medicines or preparing for lab tests.

Family and Spouse—Their Needs

By Donna Hoffman, LPW-ET, Blue Water NM

Much has been communicated about the person who must undergo ostomy surgery, his/her physical recovery from the surgery, and his/her emotional recovery—also important. But what about the spouse and children?

They suffer in their own way. In the hospital, doctors and nurses hurry around seeing to the new ostomate's physical needs, and the new ostomate's visitors see to the emotional needs. Who is there for the family?

Spouses suffer just as much—if not more. They must put up with our outbursts of anger, despair and depression. They work with us, giving love and support, and then go home to an empty house and wonder—what next?

There is usually no one to help them through their anxious days of worry and uncertainty. "How will my loved one accept me? After all, I'm not the one with an ostomy. Will he/she change or be the same?" After the ostomate comes home from the hospital, the family and spouse usually tolerate inconveniences; such as, pieces of skin barrier stuck to the floor, paste spilled on a favorite brush or comb, irrigating tubing hanging in the bathroom, leaning to leave the bathroom free at that certain time of the day, making extra "pit stops" when traveling, etc.

And on the spouse's end, "What about our sexual life? Will it be the same? Will it be worse, better, or maybe none at all?"

Spouses and families need the same support during the hospitalization and recovery phase as the new ostomate. They need to be included in the teaching of ostomy care, to feel they are still wanted and needed.

Children should have the surgery explained to them so that mom or dad will seem the same and love them all the more. They will not think anything of it if explained in a simple understanding way.

An ostomy is nothing to be ashamed about and it should not be treated any differently than someone who takes insulin or wears a prosthesis—false teeth. Spouses should also take advantage of opportunities to talk to other spouses of ostomates like at UOA chapter meetings.

Cough

Coughing is one of the most common reasons patients see a doctor. Doctors write more prescriptions for cough than for any other symptom.

In most instances, coughing is caused by an upper respiratory infection know as the common cold. But coughing can also be a symptom of other chronic medical conditions; most often, post-nasal drip syndrome, asthma and gastroesophageal reflux disease.

In a recent study published in the Archives of Internal Medicine, these three conditions accounted for 92% of all persistent coughs among a total of 88 subjects who did not have colds. Other causes of coughing include: acute bronchitis; chronic obstructive pulmonary disease; cancer of the lung and throat; congestive heart failure.

And, there is another frequently overlooked possibility. Examining the records of 307 adults suffering from persistent, unexplained cough, researchers found that whooping cough was the cause in 12% of the cases. The incidence of this common childhood infection is on the rise in young and old alike.

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