September 2009

 

Last Month’s Meeting

  

     We had a perfect day to enjoy the last general meeting of the summer.  To add to the festivities, Mike and Rhoda Gordon celebrated their 47th wedding anniversary August 27, the day of our meeting.  Not only that, but Jane was able to join us at the meeting to celebrate her birthday on this same day.  We enjoyed a wonderful time.

     We had special visitors from Hollister, Inc., Sonia Gonzalez, Nate Neau and Jeff Teiwes.  They all are involved with actively providing solutions for ostomy concerns to people who have challenges in managing their pouching system.  They are specialists in ostomy care, and we are always grateful when they visit us and share that cutting-edge knowledge.

     Our featured speaker for this evening was Alan Sear from Mark Drug Medical Supply.  They are one of the premier retailers of ostomy supplies in the greater Chicagoland area.  One of the added values they bring to their clients includes the expertise they share with people with ostomies that have special needs.  For instance, if an ostomy nurse recommends to a patient that a hernia belt may improve his/her quality-of-life, he/she could send them over to Mark Drugs to be personally fitted.  They provide many services such as this to serve personally the ostomy community.

      Alan showed us some of the new products that people have been purchasing along with a demonstration of how they work.  He, along with our visitors from Hollister, Inc., talked about the very high quality of products being produced and encouraged our members to explore some of the new options available.  You see, many of us with ostomies tend to use the same products year after year.  We become very myopic and do not see better possibilities for ourselves.  One of the advantages to coming to our monthly meeting is to see and explore the new product offerings along with how they may serve us. 

     Alan also talked about the new competitive bidding process instituted by Medicare in ever-increasing product categories.  This is a most important issue for everyone who uses medical services.  Stay tuned for the dope on how this new process for providing medical supplies to patients will affect you.  Unfortunately, the free market system providing the individual choices you and your doctor can now make for servicing your health needs is being replaced with a rigid system designed to save a few pennies yet greatly reduces your choices.           

     The parking situation at Lutheran General has your board considering different meeting options for 2009.  We are thinking of having a bi-monthly get together at Tiffany’s Restaurant on Touhy Ave. in a Gladbaggers format.  In February, April, June, August and October, we would return to Lutheran General to have a meeting in our usual format.  Another alternative is joining our friends at the DuPage group in alternate months.  If you would like to offer your opinion or an alternate solution, please e-mail Renard at renard22@att.net .

     We would like you to know that The Cancer Wellness Center offers quality programming to meet the emotional needs of newly diagnosed patients and their families, all at no cost.  Peggy Bassrawi, RN, one of our board members, is an active supporter and recommends referring currently diagnosed oncology patients to this vital new program.  For more information, please call 847-509-9595. 

 

2008 Meeting Dates

 

September 24—Madelene Grimm, WOCN,

     “The Gas We Pass—living beyond the child's

     story book.”

October 22— Lorraine Compton, WOCN     

December 10 (Holiday Party)

 

Southwest Suburban Chicago

 

     The Southwest Suburban Chicago Ostomy Support Group is an entirely volunteer ostomy association dedicated to the mutual aid, education and moral support of people with ostomies and their families.  Meetings are held at 7:30 PM on the third Monday of each month throughout the year, except July, August, December and January.

     For information regarding this special ostomy group serving Chicago’s greater southwest side, please call Edna Wooding, WOC nurse and association President, at 708-423-5641. 

 

Northwest Community Hospital

 

     A new ostomy support group has formed at Northwest Community Hospital in Arlington Heights.  They have already had a few meetings and wish to extend a welcome to all of our readers to visit them.  The WOC nurses at the hospital lead the group.  For more information, please contact Diane Davis-Zeek, 847-618-3215, ddavis@nch.org .

     They meet every other month on Thursdays about 1:00 PM at 901 W. Kirchoff in the Diabetics Exercise Room on the first floor.  This building is located on the hospital grounds at the west end.  It is easiest to enter from Central Road. 

 

2008 Meetings

October 9

December 11

 

Frank Talk about Colon Cancer

 

     The Robert H. Lurie Comprehensive Cancer Center of Northwestern University is collaborating with the Wellness Community to host a free workshop for patients, family members and caregivers titled Frankly Speaking about Colorectal Cancer.  The program provides support, education and hope to people affected by colorectal cancer and their loved ones.  Its purpose is to provide the tools and confidence needed to be able to discuss colorectal cancer with healthcare providers as well as friends and family.  A boxed dinner will be provided for all pre-registered guests.

Featured speakers and exhibitors include:

Mary Mulcahy, MD—GI Medical Oncologist

Lynne Wagner, PhD—Director, Supportive Oncology Program

Candace Henley—Colon Cancer Alliance

When: September 18, 2008, 5:00 p.m. to 8:00 p.m.  Where: Prentice Women's Hospital—Third Floor Conference Area, 250 E. Superior, Chicago

Registration: Registration is encouraged, simply call 312-908-5250 or cancer@northwestern.edu 86866) Additional Information:

·         Boxed dinner provided for all registered guests

·         Discounted parking will be available at the

      Huron/St. Clair garage

To Order Call

1-800-826-0826

 

 

Urostomy Concerns

Circulated by ostomy publishers in the U.S. 

 

     Germs are all over the world.  Nevertheless, when they are in the urinary tract, either in the conduit, the ureters or the kidneys . . . they are in an abnormal location.  This is what causes a urinary tract infection.

     What causes infection?  Mostly, the reasons are unexplainable.  Why do some people get more colds than others do?  Infections can be caused by obstructions, kidney stones, tumors, cysts or scar tissues.  Almost synonymous with urinary obstruction is infection, and then along with this comes stone formation.

     Once you have stone formation, it is hard to get rid of the infection.  It is a kind of a cycle that goes around and around.  Infection can be caused by urine being forced back to the kidneys through the conduit.  This could happen if you fall asleep with the appliance full of urine and accidentally roll over on the pouch, causing urine to be forced back through the stoma and the urinary tract with tremendous pressure.

     Invariably, the urine in the pouch is contaminated.  In general, to prevent and treat the infection, you need a good flow of urine, much like a stream.  That not only dilutes the bacteria or germs in the urine but also helps wash them out.  Two quarts of fluids daily are required for the average adult but if you have had problems with infections, you need to drink more water.  Night drainage is necessary for everyone with a urostomy.  Otherwise, one runs the risk of urine backing up into the kidneys, which can cause irritation or infection.  This is especially important for people with urostomies with only one kidney. 

     It is important to be aware of the symptoms of a kidney infection . . . elevated temperature, chills, low back pain, cloudy urine, and decreased urine output.  It is normal for people with ileal conduits to produce mucus threads in their urine, which give a cloudy appearance.  However, is will be different with an infection.  Moreover, be aware that bloody urine is a danger sign.  You must see your doctor if any of these symptoms occur.  He/she will usually prescribe an antibiotic—which will be very efficient—to clear a bacterial infection in the urinary tract.  This will not prevent future invasions but will cure the immediate infection. 

 

Fungal Rashes

By Lyn Kramer, CWOCN

 

     Fungal rashes are more prevalent in late spring and summer.  This rash is the same as the one you can get on your feet, groin or in any dark moist skin fold.  This is the perfect place for this natural body organism to flourish—it is also called a yeast or candida infection.

     People, who have high blood sugar, eat high quantities of sweets, those with diabetes or people who take prednisone type medications are more prone to this rash.  People with an ostomy—all of whom wear a plastic pouch on their side—are also more prone to fungal infections. 

     The plastic ostomy pouch, plus the contents of the pouch, increases the body heat and perspiration in this area especially during the warmer months.  Everyone who wears a barrier can experience this by feeling the face of old barrier when one removes it.  It will be warm to the touch.  The old adage of “an ounce of prevention is worth a pound of cure” comes to mind.  If you know you fit into the above-mentioned groups with these indications, and then take action before you get the rash.  Some simple things that you can do are:

·         Make sure the barrier that sticks to your body is kept dry after showers and baths.  You may use a hair dryer set to cool or dry this area very well with a towel.

·         Use a micro-granulated, anti-fungal powder around the intact barrier area as well as under the pouch area.  The area under the pouch may be applied daily.  There are many over-the-counter brands available.  The main active ingredients to look for are miconazole nitrate 2% or zinc oxide.  These are not prescription items and are less expensive than Mycostatin powder that is often prescribed by a doctor for treating fungus.

·         Use a pouch cover between you and your pouch.  Some newer style pouches have an extra layer of material on the back that is called a pouch cover, but it is still made of plastic.  You need a cloth or a very good quality absorbent towel cut to fit under the pouch area.  You need to change the cover when it becomes moist or it can also grow the fungus.

·         If you do develop a rash, do not use a cream on your skin area that is under your barrier.  The barrier will stick to the cream . . . not to your body, and may make the barrier seal unsatisfactory.  There are creams that may be applied under the barrier, depending on your particular body chemistry.  However, they must be gently rubbed in until completely absorbed so as not to interfere with adhesion of the barrier.

You only need to use the miconazole nitrate 2% powder on the infected area.  If the manufacturer’s application instruction on your skin barrier allows it, you may seal the powder in with a skin sealer or prep.  You may need to change your pouch more frequently until the rash clears.  It should clear in one or two changes.  The skin actually heals better under the barrier than it does when it is exposed to air only.  Remarkable isn’t it. 

 

Doctors, Learn to Listen

Contributed By Jane Michnik

 

     Studies shows doctors rarely let a patient finish what he/she is saying, and most interrupt in a matter of seconds of the patient's starting to speak.  Researchers specializing in communication studies, say surveys of doctor-patient exchanges found about a third of those polled were reluctant ever to question their doctor's opinions.

     "We're ultimately responsible for our health," researchers say.  "We can find another doctor, we can get second opinions but psychologically that reality doesn't exist for many people."  It is the patient who speaks up who lives longer and gets the treatment he/she needs.  Their advice:  "Before your doctor's appointment, write down all of your questions so you'll remember what to ask, and don't hesitate to ask plenty of questions."

 

Colostomy Question

UOAA discussion board

 

     Question:  My mother, age 91, has recently had surgery for colon cancer that left her with a colostomy.  We are looking for an ostomy pouch for her situation.  She is in an assisted living facility (which she loves) and they have just told me that they cannot empty her pouch because of state laws.

     They told me that they require that she use a two-piece closed pouch that can be removed once or twice a day and discarded.  They claim that they are allowed only to do this and not to empty her pouch.  Right now, they have been changing her entire pouching system every day, even though the barrier is meant to stay on for 3-5 days.

     Consequently, her skin is in pretty bad shape now.  Therefore, what we think we need is a pouching system that is made to be removed more often, which would not cause the skin problems she is having.  Thanks for any help.

     Response:  First off, if the two-piece closed-end pouch is being removed/changed frequently enough now to cause skin damage, then the facility staff is doing the wrong thing.  They are causing harm that should not be taking place!

     It is ludicrous to suggest to you that emptying a pouch is prohibited while changing one is acceptable!  Would your mom have encountered skin breakdown if they merely emptied the pouch as needed . . . No!

     I would challenge the protocol that prohibits staff from assisting with regular pouch emptying.  Look at it this way, if other residents at the facility are assisted in their toileting needs by the staff, why is your mom not also accorded the same toileting assistance?  An ostomy and its corresponding pouch routine is now your mom's toileting norm.  Oh, and by the way, it is much easier for the staff to empty a pouch on a patient every occasionally than to assist in the toileting of people with normal evacuation.

     Press these folks for common sense and clarity regarding their prohibitions and hold them accountable for the subsequent harms.  Good luck,

                                           Mike the ET

 

Ileostomy Retraction

By Gail Wilhite, CWOCN

 

     An ileostomy stoma should be at least 3/4” in length and some surgeons advocate a longer length of 1” to 1 1/2 “.  A spout-like stoma is necessary to deposit the effluent into the pouch preventing pooling of contents at the base of the stoma.  Conversely, a stoma that is too long is subject to external trauma and injury.  Weighing the consequences, it is preferred to have a stoma somewhat too long than one too short. 

     There is a difference between the creation of colostomy and ileostomy stomas.  Frequently, when fashioning a left-sided colostomy, the surgeon will create a flush stoma.  The contents of the left colon are relatively inert and in times past were often regulated with irrigation; therefore, little or no functional problems occur with a flush colostomy stoma. 

     An ileostomy stoma is never constructed as a flush stoma; nevertheless, sometimes the stoma may retract for various reasons.  The common cause of stomal retraction is post-op weight gain.  Prior to their operations, most people with ileostomies have lost considerable weight.  Following surgery, weight gain can be rapid, and, many times, excessive.  What once was an adequate stoma now retreats within the expanding environment!  Another cause of retraction may be inadequate fixation of the opposing serosal layers following eversion.  If these layers fail to adhere, healing and subsequent scarring may tend to draw the stoma into the abdomen.

     Problems resulting from retraction are decreasing adherence of the skin barrier and skin breakdown.  The pooling of the excoriating intestinal contents causes the loosening of the adherent bond resulting in leakage of ileal effluent on the skin.  This skin effluent contact naturally produces breakdown.  The combination of irritated, weeping peristomal skin and continual pooling leads to an unbearable situation, which must be remedied. 

     One treatment for a slightly retracted stoma is the use of a convex skin barrier.  The convexity applies pressure on the skin surrounding the stoma, thus pushing the stoma up.  When using a convex skin barrier, it is important not to lose the convexity by applying thick barrier layers under it.  The skin and skin barrier should suffice to maintain the advantages of both convexity and skin protection.  If the use of a convex skin barrier proves unsuccessful or if the retraction is severe, then surgery is advised to create a new, longer stoma.

 

Thoughts on Odor Management

 By Rosemary Van Ingen, CWOCN

 

     Is it not interesting that people with normal intact bowel tracts and urinary systems manage odor problems in an acceptable manner in our society?  But when disease or trauma strikes and the person is the owner of an ostomy, the biggest concern he/she has is the fear of offending society with an odor.

     What is an ostomy?  Basically, an ostomy is a manufactured exit site that changes the point of exit from the bottom or back of our body to the front.  Our eyes and noses are obviously on the front of our body, which leads us to be more aware of our changed body image and our odor-producing products.  I am sure you have heard the statement, “You’ve come a long way, baby.”  Yes, ostomy management has come a long way-considering that as little as twenty-five years ago, we had very few 100% odor-free pouching systems.

     Ostomy Collecting Receptacles.  When ostomy surgery was first developed, people with ostomies wore anything to collect output.  Tin cans, rubber gloves, cups of all shapes and sizes, bread wrappers, and plastic margarine cups . . .  just to mention a few, were standard equipment for the person with an ostomy.  Not only the feasibility, but also the odor problems this type of equipment produced, was enough to give ostomy surgery and people who had ostomies a very deplorable place in our society.  Presently, virtually all the pouching systems available to us today are made of odor-barrier materials.

     Odor Detective Work.  Therefore, if a person with an ostomy does have a fecal or urinary odor about them, some detective work should be done: Check out the application of the pouching system to the body.  Is it leaking?  Check out the closure of the pouching system—is it closed properly so that no fecal matter is oozing out after the closure?  Do not put holes in the pouch, as gas will seep out continuously.

     Urostomy Odor Cautions.  A person with a urostomy should rinse or wipe off the spout of the pouching system with a bathroom tissue after emptying.  Those few drops left in the spout after closing the pouching system can cause a urine odor under clothing.  It is interesting to note that most urostomy pouching systems on the market are odor-proof, but the connecting tubing and bedside and leg bag are not.  You must dispose of and replace these products when they take on urinary odors, or else your entire living quarters will smell.

     Elimination in People with Ostomies versus Others.  Emptying a pouching system is comparable to a person with an intact bowel or urinary tract having a bowel movement or emptying their bladder.  How does the person without an ostomy handle the odor produced by the normal function of their body?  Room deodorizing sprays are popular, a quick flush of the toilet when defecation occurs and opening a window are some acceptable methods that have been used for odor management.

     Why are People with Ostomies so uptight about elimination odors when our pouching systems are emptied?  This constant complaint has encouraged ostomy supply manufacturers to create products to meet the need for odor control.  Just remember, there is not a man or woman on this earth whose wastes do not smell.  If someone tells you that their waste products are odorless, then a nose overhaul is in order for them!

 

 

Which Pouching System for You?

 By Gwen Turnbull, ET (A pioneer in ostomy nursing)

 

     With so many ostomy products available, it is hard to know which one is right for you.  Regardless of the brand of product or type of surgery you have, there are a few basic features a pouching system must have to give you a sense of security and confidence.  First, it must contain urine or stool, gas and odor without leaking.  Second, it must help protect the skin around the stoma from damaging effects of stool or urine.  Third, the pouching system should remain in place for a sustained and predictable wear time.

     Wear time—this means you should be certain your pouching system would remain intact without leakage for a definite period.  That period varies among individuals and ranges from 24 hours to a week.  One should never wear a pouching system for over a week without changing it.  Wear time has much to do with the amount and character of your output, the climate in which you live, your daily activities and the type of skin barrier you use.

     Output—High volume liquid output will melt standard, pectin-based barriers faster than the more modern synthetic extended-wear barriers.  Using a skin barrier paste as “caulking” around the stoma or a “bead” on the back of the skin barrier, may help increase wear time and skin protection.

     Visibility/Intimacy/Cost—Once the above criteria have been met, look at other pouching system features that might affect the way you feel about yourself.  For example, is the pouch visible under your clothing, and does that determine your feelings about yourself during periods of intimacy?  Do ostomy supply costs, or worry about them, overwhelm you?

    Your Adjustment—Researchers believe that such concern can affect your adjustment to, and satisfaction with, your life after ostomy surgery.  That is why it is important to look at the fine distinctions about pouching systems.  Consider a system’s wear time as it relates to its costs.  Calculate your ostomy supply costs on a yearly total-cost basis rather than a cost per change basis.  You may find that an inexpensive pouch that must be changed daily costs more in the end than the more expensive pouch you can wear for three days.

     Conclusion—Investigate the size, shape, color, contour, profile and ease of application and emptying of a variety of pouching systems.  Which one will be right for you?  The one you feel is right for you!

     Editor’s Note: All manufacturers of quality ostomy products will be glad to send you free samples if you contact them.  You can find every manufacturer of ostomy products in the entire world—the ones we heard about anyway—on our Internet site at www.uoachicago.org under “Useful Links”

 

Do You Obtain All Your Benefits?

Adapted via UOAA Advocacy

 

     More than 5,000,000 seniors are currently missing hundreds of state and federal benefits programs.  A Web site by the National Council on the Aging may help.

     A pioneer in helping seniors find the correct benefits programs to meet their needs is www.BenefitsCheckUp.org .  The site contains fast, free and confidential tools to determine eligibility for nearly 1,000 unique state and federal programs, and detailed instructions on how to apply for them.

     More than 3,000,000 seniors are eligible for—but are not receiving—food stamps; 1,200,000 elderly are eligible for—but do not participate in—the Supplemental Security Income Program; and as many as 3,000,000 eligible seniors do not participate in Medicaid.  Most states even have underutilized pharmacy assistance programs.

     Seniors can fill out a confidential questionnaire at www.BenefitsCheckUp.org, which then compares their information with eligibility requirements for federal programs such as Social Security, Medicaid, Food Stamps and Weatherization or state administered programs, such as, pharmacy assistance, vocational rehabilitation and in-home services.

     Users then receive a printable report that tells them which programs they may likely qualify for and where to go to enroll.  What used to take days, weeks or longer to find out, www.BenefitsCheckUp.org can do in minutes.

 

     The next time you are at your pharmacy, go to the thermometer section and purchase a rectal thermometer made by Johnson & Johnson.  Be very sure you buy this brand.  Open the package and remove the thermometer.

     Take out the literature from the box and read it carefully.  You will notice that in small print there is a statement:  “Every Rectal Thermometer made by Johnson & Johnson is personally tested and then sanitized.”

      I am so glad I do not work in the thermometer quality control department at Johnson & Johnson.  There is always someone else with a job that is worse than yours is.

 

A Common Question

By The Pensacola Stoma Gram

 

     One of the most frequently asked question is what is the correct way to empty a pouching system— regardless of the type of ostomy?

     So many people with ostomies want to make this so complicated and unnatural.

·         Some kneel on the floor in front of the toilet . . .   

·         Others take off the pouch, empty and then rinse it in the toilet bowl

·         Some remove the pouch, empty it in the toilet and then wash it in the sink . . .  

·         Still others fill the pouch with water, swish it around and then empty it again

We could go on and on about the way pouches are emptied.  Name it  . . . it has been done before.

     Why not make life as easy as possible.  Make pouch emptying as natural and stress-free as a normal trip to the restroom.  When the pouch is less-than one-third full, empty it.  Otherwise, the weight may cause tension and loosen the adhesion of the skin barrier resulting in leakage. 

     Throw away the syringes, plastic bags, tin cans and whatever else it is that you use.  Maybe the nurse at the hospital told you that you had to wash it out or that you had to kneel or face the toilet.  However, think about an easier system . . ..  One suggestion when using an open-system is:

·         Sit on the toilet with the pouch between your legs

·         Lean forward

·         With the enclosure clip on, turn the contents upward away from the body

·         Remove the clip carefully, aim the end of the pouch into the toilet and empty

·         Wipe off the end of the pouch with toilet paper.  Refasten with the clip and . . . presto!

Editor's note: Place a removable clip away from harm's way when emptying your pouch.  The top of the toilet paper dispenser, inside your watchband, between your lips, etc., all work from time-to-time.  Always carry a spare pouch clip with you when you will be emptying away from home or are traveling.  Take your time when refastening the pouch clip, as you may be more apt to fumble the clip into the toilet when you hurry.

     In addition, there are pouching-washing systems that attached to your household plumbing that make rinsing out a pouch fast and easy.  These are excellent products and offer a fresh alternative.

 

In the Face of Adversity

By Hubert H. Humphrey

 

     The worst moment of my life was when I discovered I had bladder cancer.  I know what this dreaded disease can do to a person and what the chances of survival are.  However, if you think of yourself as a statistic, then you are really in trouble.  You have to believe you can win this fight.  You have to gear yourself to the continuity of the struggle, knowing that there will always be days when you will not feel good.

     My faith and hope gets me from day to day.  Deep down, I believe in miracles.  They have happened to many people who were given up to die and then were restored to good health.  However, there are days when I get discouraged, when I start feeling sorry for myself, I tell myself, “the doctors told you this would happen.  You can’t do anything about it, so get on with living.”  If you can’t get over self-pity, the games all over with.

     I think the biggest mistake is giving up.  Adversity is an experience, not a final act.  Some people look on any setback as the end.  They are always looking for a benediction rather than an invocation.  Most of us have had enough problems so that almost any day we could fold up and say, “I’ve had it!”

     But you can’t quit.  Life is a struggle.  If anything is easy, it’s not likely to be worthwhile.  The important thing in any setback is whether you can pick yourself up.  That helps me with my illness.  I keep thinking, “Well, tomorrow’s another day.”  There are many people who say, “It’s all right for you to talk about tomorrow being another day, but if you knew how much pain I suffer…..”

     I do know.  Let me tell you something.  When you give, you receive back a thousand fold.  If you have a well and draw water from it, it fills.  If you don’t draw water from it, it gets stagnant.  You have to learn to give to yourself.  I hope that I can demonstrate for others that you don’t have to throw in the towel when you have something like bladder cancer.  Be grateful for every day of your life.  Be buoyant about it, and do the best you can with what you have.

Former U.S. Senator Hubert H. Humphrey had a urostomy due to bladder cancer probably caused by years of cigarette smoking.  He was an inspiration to many on how successfully to embrace life after ostomy surgery.  He stood out as a courageous person who was open about his surgery at a time when there was a significant stigma attached to it.


The Risk of Being Set in Your Ways 

 By Sharon Williand, CWOCN

 

     Sometimes, it takes a catastrophe to shake us out of our complacency.  It is easy to fall into the “ostrich syndrome.”  This is unfortunate, particularly when it comes to ostomy management.  It is only through education that individuals grow, learn and reach their fullest potential as people with ostomies. 

     While writing this column, I was reminded of several examples of individuals recently seen by our ostomy nurse team.  One man had a sigmoid colostomy performed many years ago and had developed a huge peristomal hernia.  He irrigated his colostomy daily and used what now classifies as an antique set. 

     The irrigator was a latex bag with no measuring guide to gauge the amount of solution being given.  There was a hard rubber catheter with no shield present on the irrigator tubing.  He had been forcing the tubing into its full twelve-inch length.  He poked and poked until it finally went in.  Overall, it was a miracle that he had not perforated the herniated bowel.  He had not been successful with irrigations, continually losing as much water around the catheter as he was instilling. 

     It was difficult for him to accept an explanation of why he was flirting with danger.  After all, he had always done it this way!  Only after a great deal of persuasion was he agreeable to trying a new set with a measuring guide on the irrigator and a cone in place of the catheter. 

     One elderly woman called the ostomy nurse office in a state of panic.  She was no longer able to obtain the rubber pouches she had been using for 25 years.  She had been ordering through the mail from a distant state.  She had no idea of any other pouch that could be substituted and had no idea of what supplies were locally available.  She was totally amazed at the new lightweight odor-proof disposable pouches now on the market. 

     Another case involved a man who had put up with a continued skin irritation from a cement he had been using for many years to adhere his ostomy pouch.  He was obviously allergic to this preparation and would periodically have to discontinue wearing a pouch to allow his skin to heal.  Had he known several years ago about the new hypoallergenic skin barriers when these became available, how much more comfortable his life could have been. 

     In conclusion, being an ostrich with your head in the sand is for the birds!  Keep updated—read the UOAA publication The Phoenix; attend your local ostomy support group meetings; ask your doctor, WOC nurse and pharmacist “What’s New?”  You may be surprised at the improvements you will discover.

 

     As a woman, I ask myself if people have ever been guilty, like me, of looking at others your own age and thinking, “I can’t look that old.”

     Well, I was sitting in the waiting room to see a new dentist.  I noticed his diploma, which bore his full name.  Suddenly, I remembered that a tall, handsome, dark-haired boy with the same name had been in my high school class some 30 odd years ago.  Could he be the same person that I had a secret crush on?

     Upon seeing him, however, I quickly discarded any such thought.  This bald, fat man with a deeply lined face was way too old to have been my classmate.

     He examined my teeth and I asked him if he had attended Morgan Park High School.  “Yes, Yes I did.  I’m a Mustang,” he gleamed with pride.  “When did you graduate?”  I asked.  He answered, “In 1975.  Why do you ask?”    You were in my class!”  I exclaimed.  He looked at me closely.  Then that ugly, old, bald, wrinkled, fat-ass SOB asked, “What did you teach?”

 

MRSA Found in More Locations

 

     MRSA—methicillin resistant staphylococcus aureus—is one of the bacteria that is antibiotic resistant.  It was usually seen only in hospitals.  However, now it has been discovered in such unlikely locations such as health clubs, as reported in The Denver Channel. 

     This “super bug” exists on human skin or in the noses of healthy people where it is fairly harmless.  However, if there is the slightest cut or abrasion on the skin, MRSA is able to enter the bloodstream.  It can be deadly.  It will attack anyone, young or old, male or female, healthy or sickly. 

     The Center for Disease Control says that MRAS is virtually always spread by direct physical contact and not through the air.  It can be spread through indirect contact by touching objects such as towels, clothes, workout areas or sports equipment that have been contaminated by the infected skin of a person with MRSA.  It begins as a small pimple or boil on the skin.  It can be successfully treated with antibiotics at this stage. 

    People with ostomies have the added risk of contacting MRSA under their skin barrier.  It is advised always to wash one’s hands with soap and water before touching the peristomal skin.  This reduces the possibility of transferring some bacteria or fungus to the skin under the skin barrier, an ideal location for bacteria or fungus to grow; i.e., dark, warm and moist.

     The Center for Disease Control Recommend the following to reduce the risk on contracting MRSA:

ü      Wash your hands frequently and thoroughly with soap and warm water, especially if you are in a public place.

ü      Wash towels, uniforms or gym clothes frequently.

ü      Clean wounds and scratches immediately.

ü      Do not share personal equipment with friends.

ü      Keep cuts and abrasions clean and covered with bandages until they are healed.

ü      Avoid contact with other people’s wound or material contaminated from wounds.

ü      If you think you may have a MRSA infection, contact your doctor immediately.

 

Bridges

By Joe Rundle, Aurora, IL Ostomy Support Group

 

     I recently read a book by Don Piper entitled Heaven is Real, which he relates his experiences in for form of bridges in our lives that we must cross—some for the better and some for not.  I would recommend this book to anyone who has experienced some traumatic periods in his/her life—I guess this would be everyone.

     Piper’s first book, 90 Minutes in Heaven, offers a background to the second.  He talks about all the bridges he crossed following his accident leading up to the point that he felt he was nearly fully recovered.

     As people with ostomies, we had to encounter many bridges when we were first diagnosed with the conditions that lead to our surgery—at least I did.  First comes the “Why me?” followed by “Now what will my life be like?”  As we approach these bridges, we do not know what will be on the other side of that bridge.  We must trust that everything will work out in our best interests.  We must optimize our new situation. 

     In the chapter entitled Prayer Power, he stresses the power of support groups.  “We also need to consider support groups.  Some people have a fear of sharing intimate details, but that is part of the issue of trust.  It is part of learning to share with one another.  I do not suggest babbling about everything in our lives, but often in support groups when a person opens up, it is exactly what another person needs to hear.  I believe we all need support groups of some kind.  Another thing about support groups is that it works both ways—as we support, we are supported.  As we give, we also receive.”

     If you do not believe him or think it is just silly, you should attend one of the many support groups out there.  Witness for yourself the outpouring of love and information that comes out of one of these meetings.  As for our own ostomy support group, you would be surprised at the conversations that go on way after the meeting is over.  I have had many members, friends of and spouses of people with ostomies tell me afterwards how much they have learned by just listening or becoming involved in one of the many conversations.  We can go it alone, but it is usually much easier to share one’s burden with another person that has walked down that same path.

     Don closes this chapter with a thought, “As we pray (support) for others, God smiles on us and connects us more closely with each other.”  Will you be at our next ostomy support group meeting?  I sure hope so!

 

Instructions for Life

Forwarded By Peggy Bassrawi

 

ü      Take into account that great love and great achievements involve great risk.

ü      When you lose, don’t lose the lesson.

ü      Follow the three R’s . . . Respect for self, Respect for others and Responsibility for all your actions.

ü      Not getting what you want is sometimes a wonderful stroke of luck.

ü      Learn the rules so you know how to break them properly.

ü      Don’t let a little dispute injure a great relationship.

ü      When you realize you’ve made a mistake, take immediate steps to correct it.

ü      Spend some time alone every day.

ü      Open your arms to change, but don’t let go of your values.

ü      Remember that silence is sometimes the best answer.

ü      Live a good and honorable life.  Then when you become older and think back, you’ll be able to enjoy it a second time.

ü      Share your knowledge.  It is a way to achieve immortality.

ü      Be gentle with the earth.

ü      The best relationship is one in which your love for each other exceeds you need for each other.

ü      Judge your success by what you had to give up in order to achieve it.

ü      One moment of patience may ward off great disaster.  One moment of impatience may ruin a whole life.

ü      Faith is taking the first step even when you don’t see the whole staircase.

ü      Why choose to assume a negative outcome in an unknown situation?

 

I was shocked, confused, bewildered

As I entered Heaven's door,

Not by the beauty of it all,


Nor the lights or its decor

But it was the folks in Heaven

Who made me sputter and gasp—

The thieves, the liars, the sinners,
The alcoholics and the trash.

There stood the kid from seventh grade
Who swiped my lunch money twice.
Next to him was my old neighbor
Who never said anything nice.
Herb, who I always thought
Was rotting away in hell,
Was sitting pretty on cloud nine,
Looking incredibly well.
I nudged God, 'What's the dope?
I would love to hear Your take.
How'd all these sinners get up here?
God must've made a mistake.

'And why's everyone so quiet,
So somber—give me a clue.'
Hush, child,' He said, 'they're all in shock.
No one thought they'd be seeing you.'

 

Pregnancy with an Ileostomy

By Kathy DiPonio

 

     In 1989, at the age of 18, I was diagnosed with Crohn’s disease.  I had two-thirds of my colon removed in November 1994, when I was 24.  Over the next several years, my Crohn’s was active and in full force.  I tried all the medications that were available and did not respond well to any of them.

     I then tried Remicade and had no luck with that either.  Having been hospitalized several times due to severe flare-ups of my Crohn’s, I was told not to go without medical coverage and absolutely to not become pregnant.  A few years later, as a last resort, I joined a study for an experimental drug.  I suspect I received the placebo because I noticed no change in my health.

     Shortly after this last hope of a medicine controlling my Crohn’s, I saw a surgeon and agreed to have the rest of my colon, rectum and sphincter muscle removed.  That happened in January 2003.  I was 32 years old and forced to make the decision to have ostomy surgery that ultimately saved my life.

     For the most part, I felt well after ostomy surgery with what I considered minor flare-ups of Crohn’s disease.  It was nothing like before surgery and nothing that I could not manage by carefully watching my diet, managing stress and getting enough rest.  My then boyfriend was beside me through the whole thing.  Two weeks prior to surgery, we became engaged, and we were married six months later.  My colon-rectal surgeon said that I should wait at least a year before becoming pregnant so that my body could heal.  I started taking prenatal vitamins in January 2004.  I knew that this would be the year that my husband and I would try to conceive.  I wanted to make sure I had enough vitamins and minerals in my system for when the time came.

     When my husband and I felt that we were ready for a child, I went to see an ob/gyn that had experience in delivering babies to women with both Crohn’s disease and ostomies.  That was in June 2004.  He was very patient with me and answered all of my questions.  I asked him if there was anything that specific I needed to do.  He told me to keep taking the prenatal vitamins, go home and get busy.  He also told me to be patient because my uterus was tipped and due to my previous surgeries, I have a considerable amount of scar tissue so it might take me a while to get pregnant.

     He said this is normal for someone with my medical history and he did not want me to be discouraged.  It was a time to be patient.  So, I stopped at the store on my way home and got an ovulation kit and a pregnancy test.  When my husband came home from work, I insisted that we get right down to business.  I thought if this could take a while, we should not waste any time.  That was at the end of June.  To everyone’s surprise, I was pregnant by August!

     It was not very long before my Crohn’s disease started flaring up.  Only now, the flare-ups would last two to three weeks and were severe.  I had horrible fatigue and pain from ulcerations in my mouth and throat.  I had trouble eating and drinking.  I went to see my gastroenterologist at the beginning of November 2004, for the first time since my ostomy surgery.  I had ulcers in my mouth, throat and nose, those red bumps on my legs and I felt tired like I had never felt tired before.  I was so tired that I would have a hard time staying awake when driving home from work after a long day in the office.

     The doctor prescribed me medication to help keep my Crohn’s under control.  I had to change the medication after just over a week because it would not dissolve before passing through my system.

     Several weeks went by and I was not feeling much better.  At my next ob/gyn appointment, in late November 2004, I was in tears because my Crohn’s was so bad.  We discussed in detail the issues I had, and I expressed my concerns about my health and my baby’s.  I had a very demanding high stress job.  The added stress to my body from my pregnancy was more than I could handle both physically and emotionally.  

     The doctor decided that it was in the best interest of my pregnancy and my health for me to stay off work until after the baby arrived.  Once I was off work and home for a few weeks, I started to feel better.  I was able once again to manage my Crohn’s disease by taking medication, obtaining enough rest, watching my diet and keeping my stress low.  When I could feel a flare up starting, I would do as little as possible and rest as much as possible.

     The remainder of my pregnancy was not too bad.  I made sure that I ate right; obtained than enough rest, kept my stress low and I did exactly what the doctor said I should do.  I developed a hernia during my pregnancy.  I vomited on a daily basis during my whole pregnancy and that could have caused the hernia.  Because of the two abdominal surgeries I had prior, I could have gotten the hernia from my stomach growing, sneezing or coughing.  There was no way to pin point the cause.

     I had concerns of my stoma prolapsing because of pushing the baby out via vaginal delivery.  I did not want to risk having surgery to correct that problem even though the risk was low.  My ob/gyn and I decided that I would deliver my baby via cesarean section and we scheduled a date.  In addition, at the end of nine long months, I delivered a healthy baby boy!  Hurray!  I had my hernia repaired at the same time . . . a two-fer.  I had no complications during surgery and was awake for the whole thing.

     At the UOA National Conference in August 2004, there was a session on pregnancy.  The women that spoke were very open and answered everyone’s questions.  My concern was that my stoma would prolapse and not go back down to its normal size.  I was also concerned about the increased gas being produced.  They said that the stoma does get larger but assured me that it will go back down to normal size as one heals.

     It turned out that my stoma size did not change at all.  It looked exactly the same when I was nine months pregnant as it did before I got pregnant.  It did not make any more noise than normal either.  The only thing that I did different was change my pouching system more frequently—twice a week—and this was because my stomach was growing.

     Prior to pregnancy, I only had to change my skin barrier about once a week.  I did not have any accidents or leaks, either.  As far as my stoma and ileostomy were concerned, I had no issues whatsoever.  I did have to be a little creative during intimate times because my belly would get in the way.

     Ileostomy surgery has been a positive change in my life.  I am currently in better health than I have been in years.  I can do virtually anything I want to do without limitations.  I have been able to do things that I could not or would not do prior to surgery.  I travel all over including foreign countries.  Moreover, I am active in my community and church; I am the Vice-President and Visitor Coordinator of my local ostomy support group; I am also the Co-Chairperson of The 30+ Network that is affiliated with The UOAA, Inc.  I have wonderful family and great friends that have all proven their unconditional love for me.

     Most importantly, I am the mommy of a healthy, happy baby boy who is the absolute light of my life.  I am truly blessed and very grateful to have the wonderful things in my life that I do.  I am living proof that ostomy surgery is not the end of the world but a second chance at life and the beginning of a new and exciting chapter in my book of life.  Looking back over all that I have gone though, I would not change a thing!

     Always  wear  clean  underwear  in  public, especially  when  working  under  your  vehicle.  From  the  Northwest  Florida  Daily  News comes  this  story  of  a  Crestview  couple  who drove their car to WalMart, only to have their car  break  down  in  the  parking  lot.  The man told his wife to carry on with the shopping while he fixed the car in the lot. 

     The wife returned later to see a small group of people near the car.  On  closer  inspection, she  saw  a  pair  of  male legs  protruding  from under  the  chassis.  Although  the  man  was  in shorts,  his  lack  of  underwear  turned  private parts  into  glaringly  public ones.  Unable to stand the embarrassment, she dutifully stepped forward, quickly put her hand up his shorts and tucked everything back into place.

     On regaining her feet, she looked across the hood and found herself staring at her husband, who was standing idly by.  The mechanic, however, had to have three stitches in his forehead.

 

A Letter

Received By the Ostomy Association of Greater Chicago

 

     I have just read the article Ileostomy and the Closed End in the August edition of The New Outlook.  Maybe it is just me and my good luck because for the past 17 years that I have been fortunate to have lived with a skin barrier and pouch attached to my side that saved my life.  I thought about it and found that I have used the two-piece system, skin barrier and open-end pouch with a clip, all these years without a problem.

      I keep my skin barrier on at least nine days, less if I have had loose output.  My pouch is used for about three changes of my skin barrier.  The challenge mentioned about the clip rubbing against me was solved after I wore the clip for a just a few days.

     This issue was solved this using the mid-length briefs I always wear.  I have sewn a pocket on the inside of my briefs.  I place the new pair over the pouch and make marks on the outside to show where the bottom of the clip shows on the brief.  I make the pocket about five inches wide and six inches deep.

     This pocket works wonders supporting the pouch especially when it is pretty full.  In addition, when emptying the pouch, I always rinse it out with a large plastic cup as I knell next to the toilet.  I do not rinse the pouch if I am not at home, like at a restaurant etc.  I have found that for me, rinsing out the pouch extends the wear time of the skin barrier along with the added benefit of having a clean pouch—at least for a little while.  I am 75 years old.

                                     Harry Baranowski