September 2009

 

Last Month’s Meeting (our 389th)

 

     On a stormy night, the day of the new moon, we had an excellent meeting.  Our featured presentation was by a most inspiring speaker, Ally Bain.  I do not have the language to describe the sheer power and pure integrity of her words.  Ally told us a brief summary of her life battling Crohn’s disease, which ignited the tremendous force driving her to become a successful political advocate of people with IBD and the like despite overwhelming challenges.  We rarely recognize our speakers with a standing ovation, but after hearing Ally, we could not stay in our seats.  Ally’s speech was covered by the press as well as filmed this evening.

     We were visited by some of our friends from Hollister, Inc., Barb Kraus, Nate Neau and Mary Rome as well as Lisa Bain (Ally’s mother) who are dedicated professionals servicing questions and the direct needs of individual ostomy patients over the phone.  With them was Stephanie Lipp, Director of Marketing for Hollister, Inc.

      The Bladder Cancer Awareness Assn. is having a Symposium including seminars, help groups and a vendor fair.  It especially meant for those undergoing cancer treatment, those who have had bladder removal and caregivers.  It will be held on October 9 and 10 at the Ramada Hotel and Conference Center 1600 Oakton St., Elk Grove Village.  Registration will be $45 a person.  For more information, call 847-593-3305 or bladdercanceraware@att.net .

     We want to congratulate Fred Shulak on his 53rd Stomaversary . . . what a great accomplishment.  We wish to thank Dolores Obregón for her years of service to our group.  She has been a good friend to many of us.  Dolores is very ill and we pray for her quick recovery.  Happy Birthday Jane!     

     There is an Ostomy Visitor Training Session, “A Vision of Hope” on Saturday, September 12 at 8:30 AM at Northwest Community Hospital.  For registration, call 847-618-3215.  This is a great meeting to attend even if you are not sure you would like to be a visitor simply for the ostomy information provided.  The new training film developed by UOAA will be included.  (See page 4)

     UOAA had their second conference in New Orleans in August.  Our members who attended said it was more successful than they anticipated.  It was expected that about 250 would attend, yet 665 came.  When the next one comes, you may want to include yourself, you will be glad you did.

     For our September meeting, we are happy to announce that one of our favorite ostomy nurses, Bernie auf dem Graben will be on hand to offer detailed ostomy advice and tips.

     On Saturday, August 29, we participated in a product focus group sponsored by Hollister, Inc.  If you would like to be included in these groups, please let a board member know and we will contact you for the next one.

 

You must let everyone have their own feelings.

                                                                        Judy Svoboda

 

Ostomy Association of Greater Chicago

Established 1975

President

Jane Michnik n9yha@comcast.net  

Vice President/Newsletter

Renard Narcaroti renard22@att.net                               630-418-7127

Treasurer

Tim Traznik tim.traznik@brunbowl.com                       630-736-1889

Director

Rhoda Gordon mmrdgordon@aol.com                         847-256-5885

Director / FOW

Joan Loyd joanloyd@sbcglobal.net                               847-724-8002

Gay / Lesbian Ostomates

Fred Shulak thadbear@sbcglobal.net                            773-286-4005

Membership

Judy Svoboda judysvoboda@comcast.net                    847-942-3809

Ostomy Nurse Coordinator                                                               

Sharon Pardo sharon-pardo@thermal-tech.com            708-457-9522

Publicity

Ken Niebuhr  ktn39@sbcglobal.net                               847-398-0527

Visiting

Peggy Bassrawi, RN  pbassrawi@gmail.com                847-251-1626

Ways and Means sallyschinberg@wowway.com

Jerry & Sally Schinberg                                                  847-364-4547

Welcoming swsteinbergcpa@yahoo.com

Steven Steinberg

Wound Ostomy Continence Nurses (WOCN)

Bernie auf dem Graben                                                  773-774-8000

Resurrection Hospital

Alyce Barnicle                                                                708-245-2920

LaGrange Hospital

Nancy Chaiken                                                               773-878-8200

Swedish Covenant Hospital

Terry Coha                                                                      773-880-8198

Children’s Memorial Hospital

Jan Colwell & Maria De Ocampo                     773-702-9371 & 2851

University of Chicago

Lorraine Compton                                                          773-282-7000

Our Lady of Resurrection Hospital

Jennifer Dore                                                                  847-570-2417

Evanston Hospital

Beth Garrison                                                                 312-942-5031

Rush Presbyterian-St. Luke’s Hospital

Madelene Grimm                                                            847-933-6091

Rush-North Shore Medical Center

Connie Kelly                                                                  312-926-6421

Northwestern Memorial Hospital

Kathy Krenz & Gail Meyers                                          815-338-2500

Centegra-Northern Illinois Medical

Marina Makovetskaia & Kathy O'Grady.                      847-723-8815

Lutheran General Hospital

Bari Stiehr & Diane Davis-Zeek                                    847-618-7986

Northwest Community Hospital

Nancy Olsen & Mary Rohan                                          708-229-6060

Little Company of Mary Hospital

Barbara Saddler                                                              312-996-0569

University of Illinois

Catherine Smith                                                              708-684-3294

Advocate Christ Medical Center

Sandy Solbery-Fahmy                                                    847-316-6106

Saint Francis Hospital

Nancy Spillo                                                                   708-763-4776

Resurrection Home Health Services

National UOAA Virtual Networks

·      Pull Thru Network (Parents of children with bowel and urinary dysfunctions):  Bonnie McElroy  205-978-2930

·      UOAA Teen Network:  Jude Ebbinghaus  860-445-8224

·      GLO (Gay & Lesbian Ostomates): Fred Shulak  773-286-4005

·      Young Ostomate & Diversion Alliance of Amer: Eric En  714-904-4870

·      Thirty Plus: Kathy DiPonio  586-219-1876

·      Continent Diversion Network:: Lynne Kramer 215-637-2409

 

www.uoachicago.org

 

OAGC Meeting Dates for 2009

 

September 16—Bernie auf dem Graben, WOCN

October 21—Deb Wojcik from the Cancer Wellness Center will speak about loss  

November 18—A special date.  We will have a Rap Session on our first November meeting ever.

December 16—Gala 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. 

SW Sub Chicago Meeting Dates for 2009

           All meetings are held at

           Little Company of Mary Hospital,

           Evergreen Park, Mary Potter Pavilion,

           Lower Level, 2850 W. 95th St.

 

Why Do People Get Cancer?

By Reuben Chow

 

     Why do people contract cancer?  Perhaps more significantly, why have cancer rates soared so drastically over the past century?  Is it because of genes?  Is it because of what we are eating today?  On the other hand, are stressful lifestyles to blame?

     Others put forth that factors such as environmental toxins and electromagnetic radiation are the main culprits.  The fact is cancer is a multi-causal disease and probably a result of a combination of the abovementioned factors.  Recent statistics released by the World Cancer Research Fund (WCRF) has estimated the role of diet and lifestyle, suggesting that about one-third of the 12 most common types of cancer in richer countries could be prevented merely through a healthy diet, physical activity and the maintenance of healthy weight.

     In poorer, developing nations, the proportion of cancers preventable through these steps was estimated to be about one-in-four.

Details and Findings of Study

     The cancers in question included those of the bowel, breast, gallbladder, kidney, liver, lung, mouth / pharynx / larynx, esophagus, pancreas, prostate, stomach and womb.  For these cancers, it was estimated that 34% of cases in the US and 39% of UK cases were preventable through the said steps.  This implied that there was more room for improvement in these countries.

     Zooming in . . . it was also estimated that more than 40% of breast and bowel cancer cases in developed nations could have been prevented in the same way.

     The abovementioned figures had not even taken into account the detrimental effects of smoking, which on its own is believed to be the main cause of about one-third of all cancers.

     The report had been put together by a panel of 23 experts.  Their study had been based on 10 recommendations released by the WCRF in 2007 on preventing cancer; those included daily exercise, avoiding processed meats, eating less salt and keeping a healthy weight.  To arrive at the estimates, the team had looked at the biggest and most reliable research studies available which covered the 10 factors.

     "This report shows that by making relatively straightforward changes, we could significantly reduce the number of cancer cases around the world," said Michael Marmot, the chair of the panel.

Importance of Dietary and Lifestyle Factors in Cancer Prevention

     The possible causes of cancer were discussed earlier.  What is clear about cancer is that it is certainly not an alien-like ailment, which descended from the sky and invaded our bodies, against which we can do nothing for protection or recovery.  "People think that somehow cancer comes from heaven, or Darwin, or from their parent's genes, but that's not always the case.  A third is caused by smoking, and approximately a third is related to diet and physical activity," Marmot also said.

     In addition, scientific backing seems to be increasing.  "The evidence linking diet, physical activity, obesity and cancer has become stronger over the last decade and this report can play a part in people adopting healthier lifestyles.  After not smoking, it is clear that diet, physical activity and weight are the most important things people can do to reduce their cancer risk," said Mike Richards, the National Clinical Director for Cancer.

Holistic Action is Needed

     The experts have called for urgent action, especially in view of the escalating sedentary and obesity epidemics, graying populations as well as worsening food choices.  "We are expecting a substantial increase in cancer rates with the aging population, obesity rates soaring, and with people becoming less active and increasingly consuming highly processed and energy dense foods and drinks.  The good news is that this is not inevitable," said Martin Wiseman, the project director.

     Nevertheless, it is also quite clear that a holistic solution involving many parties will be needed if society is to stem the cancer epidemic.  "There is no magic bullet, no one single fix to the problem.  If we are to tackle the situation we need individuals, business and government to work together to encourage healthy lifestyles by promoting things like cycle lanes and food labeling," said Richard Davidson from Cancer Research UK.

     The panel's report had put forth some 48 suggestions for improvement.  Some include:

·                  Eating more fruits in place of unhealthy fatty foods

·                  Checking labels by consumers to ensure foods being bought are healthy

·                  Lowering costs of healthy foods

·                  Persuading schools and workplaces to stop providing unhealthy foods and have them  encourage daily exercise

·                  Cycling to work

·                  Walking and cycling routes to be put in place by governmental units to facilitate physical activity

·                  Improving access to sporting facilities

Beyond Merely Prevention—Cancer Recovery

     How about those who have already been diagnosed with cancer?  Are such lifestyle and dietary changes too little, too late for them?  Not according to a recent study conducted by researchers at Addenbrooke's hospital in Cambridgeshire, which found that about 36% of men with aggressive prostate cancer could give planned surgery or radiotherapy a miss after making some basic dietary and lifestyle changes.

     The changes, which included lowering salt intake, reducing alcohol consumption, eating larger amounts of oily fish, losing weight and undertaking moderate exercise, were able to inhibit or even totally stop their cancers' progression.

     As we search for complicated answers to the cancer riddle, we should not underestimate the powerful role of factors, which have been with us throughout human history—dietary and lifestyle habits.

 

Ostomy Visitor Training Seminar      

 

     The Visitor’s Program is a vital part of the ostomy support system.  Our trained members visit ostomy patients in person or by phone to discuss non-medical questions and offer encouragement.  There will be an Ostomy Visitor Training Seminar on Saturday, Sept. 12, 2009 at 8:30 AM until 12:00 noon in the auditorium of Northwest Community Hospital, 800 W. Central Rd., Arlington Heights (www.nch.org).  If you want to attend our free seminar please RSVP by August 31 to uoachicago@live.com, or phone the NCH ostomy nurses at 847-618-3215.  Please leave your name and number saying you would like to participate.

 

Public TV Documentary Movie

 

     UOAA entered into a contract for the publication of a five-minute ostomy public awareness movie that will appear on public TV; the National Medical Report as shown on cable; network and international TV as part of Voice of America.

     This excellently produced project—coordinated by UOAA President Elect Kristin Knipp—can now be viewed on the UOAA Internet site at www.uoaa.org/uoaa_psa.shtml .  One may also view the movie at http://uoaa.wordpress.com/ .

     We encourage you to send one of these links to anyone with an interest in ostomy surgery; i.e., our members, local medical professionals, family and even friends who you might want to have better understanding about our organization.

 

Northwest Community Hospital

 

     An ostomy support group formed in 2008 at Northwest Community Hospital in Arlington Heights.  They 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, RN at 847-618-3215, ddavis@nch.org .

     They meet every other month on the second Thursday at 1:00 PM at a new permanent location, the Busse Center, B1 level, Room LC7-8.  This building may be accessed from the garage at the west end of the Busse Center.  It is easiest to enter from Central Road.

NW Comm Hospital Meeting Dates for 2009

September 12—Ostomy Visitor Training Seminar

October 8

December 10

 

Concerns with the J-Pouch

By Dr. Tracy Hull, Cleveland Clinic

 

     Patients with ulcerative colitis (uc) who were treated surgically previously underwent a total proctocolectomy with a permanent ileostomy.  However, in the late 1970s, when the pelvic pouch (j-pouch) procedure was first introduced, the surgical approach to uc was revolutionized.  The pelvic pouch has now become the "gold standard" in surgical treatment.

     Although the operation avoids a permanent stoma and usually improves the patient's quality-of-life, it does not restore the bowel function to normal.  Patients can expect to have many stools few and as many as 40 for the less fortunate, with the average being around eight—and these stools are pasty to watery in consistency.

     As with any bowel operation, patients experience many changes, both short- and long-term.  This article will discuss some of the potential long-term problems that patients with a pelvic pouch may experience.

     Diarrhea: The function of the pelvic pouch will change over the first year—improve as the pouch stretches and becomes larger after the ileostomy closure.  However, there are still some people who have 20 bowel movements or more, daily.  Dietary changes may help these people to decrease the number of bowel movements.  Foods, which have been found to help decrease the water content of the stool, may help to reduce the number of trips to the toilet.  These foods include applesauce, bananas, rice, creamy peanut butter, potatoes, cheese, marshmallows, pretzels, toast, yogurt and tapioca pudding.  Bulking agents such as Metamucil, Citrucel, Fibercon or Konsyl also help thicken the stool.

     These products are ingested with little fluid to allow extra fluid in the gastrointestinal tract to be absorbed.  A doctor to slow down stools sometimes prescribes medications such as Lomotil or Imodium.  They should not be used without your doctor's approval.  Limiting the intake of fried and fatty foods and milk products may decrease diarrhea.  Reaction to foods varies with each individual, and other foods may be found to increase the amount of stool produced or change the consistency.

     Bowel obstruction and emptying concerns: To construct the pelvic pouch, the small bowel is stretched, along with the blood vessels that provide blood to the pouch, in order to reach the anus.  This stretching may predispose a patient to bowel obstructions from scar tissue, twisting or kinking; surgical intervention may be required to relieve the obstruction.  Another concern, which may lead to problems with pouch emptying, is a narrowing or stricture at the pouch-anal joint (anastomosis).

     This is diagnosed by an exam of the anal area.  Strictures may cause symptoms that result in a progressive need to strain more and more to move one's bowels.  Usually, dilation solves the problem and rarely is an operation needed to correct the problem.

     Pouchitis: Pouchitis is a non-specific inflammatory condition of the pouch.  The cause is unknown, but it occurs much more frequently in patients who have a J-pouch for IBD versus those who have one for familial polyposis.  Patients are at risk to develop pouchitis over their entire lifetime, as long as they have a functioning pelvic pouch.

     For some patients, pouchitis is an isolated event, but others can experience multiple episodes or even continuous "chronic pouchitis.”  The symptoms are similar to a mini-attack of uc.  Patients report increased bowel movements, pelvic pain, cramps, malaise, fevers or blood in their stools.

     However, it is common for patients with a pelvic pouch to notice blood on the toilet paper with normal function of the pouch and yet not have pouchitis.  The most common treatment is Flagyl (metronidazole) 750 to 1500 mg daily for 7 to 14 days.  This is effective about 85% of the time.  Improvement is usually seen within 48 hours.

 

World Ostomy Day

October 17, 2009

 

Do Not Call Me a “Bag Lady”!

By Ann Favreau, former President of UOA

 

     “Do not call me a bag lady” . . . I probably should rephrase that and say, “Do not call me a lady with a bag.” 

     Colorectal cancer surgery in 1988 resulted in the removal of my rectum and part of my colon, thus the creation of a colostomy.  For 20 cancer-free years, I have lived with comfortable prosthetic pouches attached to my abdomen that allow me to function normally. 

     It drives me crazy when this well-engineered pouching system is referred to in dreaded whispers as “wearing the bag.”  If one says the phrase “colostomy bag” people shrink away with thoughts of unclean, unclean.  It is a leprosy mentality, and some people would rather be dead than have an ostomy.  Unfortunately, many people do die rather than have a colonoscopy to detect colon cancer; or they suffer years of pain, diarrhea and the affects of steroids to avoid surgery for ulcerative colitis that may result in an ostomy and wearing “the bag.”

     The idea of having an ostomy and wearing a little plastic pouching system that collects one’s waste may not be the most pleasant thought, but it has provided millions like me a life-saving alternative to disease and death. 

     I have sat next to you on planes while traveling the world; taught your children; worshiped beside you; and swum in your pool.  Interestingly, unless I told you that I have a colostomy, you would never know that I have an altered plumbing system. 

     Ostomy pouching systems have come a long way since your great grandma’s time.  Technology has led the way to amazing improvements.  The prosthetic devices are now designed to be very secure and discreet; i.e., they rarely ever leak and they lay flat against your belly under regular clothing.  Most importantly, these new systems are secure, I say this twice for emphasis, and odor-proof, which is more than one can say for other incontinence products.  The manufacturers of these ostomy supplies invest millions and millions of research dollars improving the versatility and dependability of their products in order to meet the demands of us active individuals who are living normal productive lives

     I always use the words “pouching system” to assist new patients understand that although these products are disposable, they are prosthetics that replace an amputated body part.  (Jan Coldwell, CWOCN, in her textbook for ostomy nursing, uses the term pouching system to describe more accurately this prosthesis to ostomy nursing students.)  They are designed to maintain the integrity of one’s skin by protecting it from the irritation of bodily wastes and therefore should be covered for reimbursement my most insurance companies.  I believe the word “bag” is an inferior term to signify a product that successfully enhances the quality of my life.

     Why do the half-million of us in the U.S. need to be branded with “the bag” stigma?  When will the public open its eyes to discover that it is okay to have an ostomy?  Whey should the creation of a stoma on the abdomen to divert urine or stool from a diseased of damage bladder or colon be perceived in such a negative manner? 

     A stoma is merely a piece of intestine brought through the wall of one’s tummy and then turned back on itself like a cuff.  It serves as a virtual spillway.  Every day, people live with pacemakers, artificial hips, breast prosthesis, false teeth and wigs.  Some of these may be viewed as badges of honor and provide bragging rights.  Not so the “the bag” . . . not yet anyway, but soon, if I have anything to say about it.

    Ostomy surgery may be a cure for colorectal and bladder cancer, as well as many other diseases and conditions, and provide those suffering from debilitating bowel disorders a better quality-of-life.  Unfortunately, the fear that one may end up “wearing the bag” is keeping countless individuals from seeking screening to aid in early detection of the silent killer, colorectal cancer.  I will carry my groceries and other purchases in a bag; store my leftovers in a plastic bag; carry a handbag; but think twice about calling me a person who is “wearing a bag.”  I am a survivor with the minor inconvenience of a modern pouching system that allows me to live my life to the fullest!  What about you?

 

My Name is Lulu

By Vicki Palermo

 

     My challenges began in my junior year of high school when I started having severe cramping and diarrhea.  I barely made it through my senior year and graduation.  I became very thin and weak.  I could only engage occasionally in some of the activities an 18-year-old does like school, work and dating.  I was diagnosed with Crohn’s disease at this time.  I began a drug program that included prednisone, which 21 years later, I still take.  I was originally diagnosed with ulcerative colitis, which lead to many serious unforeseen complications due to treatment follow ups for the wrong disease.

     Following years of pain without obtaining much relief, my family brought me to the Mayo Clinic.  After the extensive battery of tests and analysis they performed, it was decided that my best option for relief was surgery, i.e., a colectemy with ileostomy.  A few years had passed since I was first diagnosed and by this time, every part of my large intestine and rectum was involved in this humiliating disease. 

     I returned home to Chicago to be with my family and friends and ask their help in making the decision whether or not to have surgery.  I worked at a fun job but Crohn’s disease was taking its toll.  I spoke to a WOC (ostomy) nurse on the recommendation of my surgeon along with a young woman who had had ostomy surgery.  I decided to have my surgery performed in Chicago.

     I had ostomy surgery in 1988, two days following my 27th birthday.  I thought everything would be fine, and the need to wear a pouching system seemed like a small price to pay for freedom from pain.  I wanted to be once again able to go out and about without the worry of where the nearest toilet was located. 

     Unfortunately, the hoped for relief did not last too long.  Something had gone terribly wrong, and I repeatedly found myself in the hospital emergency room.  My stoma was not doing the job I thought it would . . . everything I ate was vomited up.  My gastroenterologist, who I had faith in for so long, told me it was a psychological response and that I should keep on fighting.  He thought I had ulcerative colitis.    

     I believed then as I do now, that if one is not obtaining results with one’s current treatment, run, do not walk, in your search to discover other options.  My doctor felt my mother was overly distraught and suggested I go home with my aunt, a nurse’s aid.  But that night, my aunt and uncle rushed me to the hospital where I was diagnosed and had emergency surgery for a perforated small intestine.  Crohn’s disease can penetrate the entire small intestine wall spilling its contents into the abdominal cavity causing a massive infection and usually death.  After that operation, which did save my life, I began a six-month downhill spiral that lasted from November to Mother’s Day. 

     The contents of my ruptured intestine spread poison throughout my entire system.  My breathing was extremely labored because my lungs had collapsed.  I was placed on a respirator with tubes inserted into my chest.  A few days later, I was intubated and placed into an induced coma.  The massive infection had gone into Adult Respiratory Failure (ARF),  I received 100% oxygen, from which I could not be weaned.  My parents were told that in all probability, I would not survive.  In the wee hours of January 3, 1989, my mother was summoned to the hospital, and there in the intensive care unit, I was given Last Rites.  Although I was not expected to survive, I was placed into a deeper coma.  I was like a miracle that I stayed alive during this time.  I was just not my time.

     Slowly I was weaned off pure oxygen, and the day came when I was to be brought out of the coma.  My eyes opened, but I did not respond.  My mom noticed I would flip the monitor off my left hand but not my right.  She mentioned to a nurse that I was taking a long-time to come around.  The nurse confided I should have been responding.  A scared, nagging feeling came over my mom and she began to wonder, “Where are all the doctors who had been hovering around?  Why isn’t anyone telling me anything?”

     Recognizing disturbing signs, mom mentioned to Grams that perhaps I had suffered a stroke in January when so much had gone wrong.  She wanted answers.  A large entourage of doctors and medical personnel took me for an MRI.  My mom’s worst fears were confirmed.  I had suffered a stroke, and it had damaged my brain affecting my right side and my eyesight.  I could no longer speak.  With further study, the doctors concluded a blood clot shot through an opening in my heart when my heart became crushed by the ARF.  The ileostomy was no longer the problem.  I had the aftermath of a stroke to manage for the rest of my life.

     Since that time, I have had years of physical and speech therapy, which continues to this day 21 years later.  Seven months after the ostomy surgery, I began daily therapy at New Medico in Chicago.  It was difficult struggling to regain what I could of my former self. 

     With little use of my right side, limited eyesight and an inability to speak coherently, life was overwhelming.  I fought hard.  My family supported me with love and assistance.  I still have Aphasia—the inability to use or understand language, spoken or written, because of a brain lesion.  Sometimes it is hard to communicate my thoughts, but the difference between then and now is like night and day. 

     Perhaps you wonder about the title of my story, especially since you now know that my name is Vicki and not Lulu.  My dad would visit and try to coax me into talking.  He had and still does have a great sense of humor.  He coached me to say, “My name is Vicki and I am a creep.”  What came out of my mouth was, “My name is Lulu and I need money.”  With Aphasia often what is clear in the mind is not what comes out of the mouth.  I repeated that sentence over for days.  This exchange has, for years, brought smiles and laughter to an otherwise tragic situation.

     My past work history before my stroke included clerical jobs at the Tribune Company, Browns Chicken and the retailer McDades.  I was a financial advisor at John Amico Beauty School, a travel agent, a Mary Kay consultant and a secretary at the Daley Center.  I had loved all my jobs, but of course, now I am medically retired.

     My family relocated to Highlands Ranch, Colorado in 2005.  I keep in touch with all my friends in Chicago, including those from the Ostomy Association of Greater Chicago and the Rehabilitation Institute.  I attend the UOAA conferences as often as possible.  It is great to see familiar faces and hear about the newest advances in ostomy management.  I attended the New Orleans conference in August 2009 and am hoping the next one will be around Denver.

     Today, my Crohn’s disease is pretty much under control.  My vision has improved somewhat.  I wear a brace on my right leg; I can move my right arm, although my right hand will not cooperate.  Fate has placed before me many challenges, but I endeavor to maintain a healthy positive attitude.  I can walk trails and am able to swim like a fish.  I am in Golf-4-Fun with others challenged by disabilities.  I am taking tennis lessons, and I bowl.  I an enrolled in art classes and even had one of my works sold at auction for over $500.00!  I have begun writing my memoirs.  I spent a weekend at Easter Seals camp recently and was able to climb up one a horse once again,  Yah-Hoo. 

     I am looking into some riding programs and hope to enroll into one this year.  Beyond family and friends, I belong to the Rocky Mountain Stroke Assn., where I take skill classes in addition to occupational and physical therapies.  I also attend the YESS (Young, Enthusiastic, Stroke Survivors) support group.

     I have had other health issues over these years—a hysterectomy, sinus surgery and a broken shoulder (when I fell down the steps at our pool).  I sometime get panic attacks but fortunately, they are few and far between and much better than when I was younger.  A case of pyoderma gangrenosum around my stoma caused me much pain and made it impossible to keep a skin barrier in place. 

     I found a group to help me when medical attempts failed.  I will call them the “Irish people who work on the aura surrounding the body.”  It is hard for me to believe, but after just two sessions, the pyoderma was healing.  I confessed this to the amazement of my doctor who said that he did not care how it was healed . . . just that it had.  I was pleased to learn he was open to alternative and holistic medicine.

     It has taken years following the ileostomy surgery to achieve getting my Crohn’s disease under control.  But, now it is.  The move to Colorado seems to have been good for me, although I miss my Chicago doctor.  I have a new doctor out here that has been great.  My doctors just met recently at a conference and discussed how well I am doing.

     With the Crohn’s disease under control, I am concentrating more fully on correcting the disabilities caused by the stroke.  People at the support group I attend are consistently inspiring.  I have been told that I inspire others, which is always good to hear.  I am again dating, Yah-Hoo.  In 2008, my boyfriend and I traveled to Santa Fe, New Mexico, and this year to the Grand Canyon, stopping along the way in Sedona, Durango and Moab.

     My family is close by.  I share a house with my mom.  My dad lives about three miles away.  My brother, his wife and three sons live about seven miles away.  The rest of the family is still in the Chicago area.  I try to get back to visit them and my friends at least once a year.  As too many of us have experienced that life is not too easy, I do the best I can every day.  My motto has become, “Fight to the finish.” 

     Editor’s note:  Vicki has had articles written about her and has been described as the personification of John F. Kennedy’s book Profiles in Courage.  We have reprints of her drawings, which are of true artistic quality.  I wish we could show you an honest representation of them here. 

 

Wasp Spray

 

     A person who works as a receptionist in a church in a high-risk area was concerned about someone coming into the office on Monday to rob them when they were counting the collection.  She asked the local police department about using pepper spray, and they recommended to her that she get a can of wasp spray instead.  The wasp spray, they told her, can shoot up to twenty feet away and is much more accurate.  With the pepper spray, an attacker needs to be close to you for it to be effective and therefore may allow the attacker to overpower you. 

     The wasp spray temporarily blinds an attacker until they get to the hospital for an antidote.  The church receptionist now keeps a can on her desk in the office, and it does not attract attention from people as a can of pepper spray would.  She also keeps one nearby at home for home protection.  One could also keep it in the car and it would be legal.

 

 

For our liability disclaimer and privacy policy visit

http://uoachicago.org/liability.htm.

 

Influenza

Forwarded By ReRoute, Evansville, IN

 

     The flu is caused by a virus that spreads from infected people to the nose or throat of others.  Symptoms usually appear within two to four days after being infected.  A person is considered contagious for another three to four days after symptoms appear.  The flu season in the U.S. generally runs from November to April every year. 

     Flu symptoms are fever, chills, dry cough, nasal congestion, sore throat, headache and muscle aches.  Complications can lead to hospitalization and death.  Twice as many Americans die from the flu every year as die from AIDS, breast cancer or prostate cancer.  Why do you need a flu shot every year?  Because the flu virus changes, at least one of the vaccine’s viruses must be replaced with a newer one very year, so the shot only lasts about a year.

     When does a shot start working?  Protection develops one or two weeks after you get your flu shot.  Who should get a flu shot?  It is anyone over six months old who wants or needs to reduce his/her chance of getting the flu.  Those over age 65 (a must!), everyone with a chronic medical condition, like heart disease or asthma (a must!), pregnant women, breast-feeding mothers, healthcare givers, students and everyone with special holiday plans as the flu season often hits the last week of December.

     When is the best time to get a flu shot?  It is between September and mid-November.  Can you get the flu from the flu shot?  Flu vaccines contain no live virus, so it is impossible to contract the flu from a flu shot.  How effective are flu shots?  The shot is almost 90% effective in preventing type A and Type B influenza.  If you do manage to get the flu, it will be a milder case with shot.

 

Cell Phone Numbers Go Public

 

     All cell phone numbers are being released to telemarketing companies.  You will start to receive many unsolicited sales calls, which you will actually have to pay to receive!

     Even if the message is saved on your phone, you will be charged for the minutes to listen to it.  To prevent this problem from happening, call the following number from your cell phone:

888-382-1222

     This is the number for the national “Do Not Call” registry.  It will only take a minute of your time.  It blocks your number for five (5) years.  You must call from the cell phone number you want to have blocked.  You cannot call from a different phone number.

 

Did you know that we have our own Internet site?  Next time you are on your computer, check out our site at www.uoachicago.org

 

Do You Spring Back?

 

You are probably familiar with the phase, Spring forward, Fall back,” in terms of Daylight Saving Time.  There is also a time when it is good to “Spring Back”, this is, to be resilient.  The dictionary defines resilient as “springing back; rebounding; recovering readily from illness, adversity or the like.”  Here are some tips on how to master the skill of being resilient and springing  back as you navigate through our ever-changing world.

     Learn from experience.  Resilient people reflect on what happens to them—good and bad—so they can move forward without illusion.

     Accept setbacks and losses.  You must face the reality of what happens in order to get past it.

     Recognize emotions.  Resilient people do not hide from their feelings.  They identify what they are feeling and express their emotions appropriately.

     Keep time n perspective.  Past, present and future are separate.  Do not mix them up by letting what is in the past determine your choices in the here and now.

     Think creatively and flexibly.  Find new ways to solve problems and face challenges

     Take care of yourself.  Resilience is based on good physical and mental health.  Get enough rest, eat sensibly and spend time with people who support you.

     Ask for help.  Resilient people do not try to do everything themselves.  Accept that you will need to ask others for assistance, and learn how to do this graciously and effectively.

     The dictionary also defines resilient as “returning to the original form after being bent, compressed or stretched.”  There is much of that going on these days with this ostomy business.

 

Urostomy Complications

 

     People with urostomies have a high incidence of complications, some occurring after 10 to 12 years.  Most complications are gradual.  Probably the most common is caused by an ill-fitting pouch.  Urine that accumulates on the skin around the base of the stoma may become reddish-brown with raised, thick, leather-like areas.  It is important to have a skin barrier fits to within 1/16 of an inch of the stoma to prevent this and other long-term complications. 

      If the reddish-brown growth is extremely bad, it may be treated with soaks of white vinegar three times a day for three or four days.  Vitamin C, taken according to directions on the bottle, may also be helpful to acidify the urine.  Alkaline urine on the skin is irritating.  If these measures are not successful, a revision of the stoma is an alternative.  Encrustation's or sand-like deposits on or around the stoma are another complication.  When these deposits are noticed, start to increase your intake of cranberry juice.  Vitamin C is also good, and your physician may order Mandelamine

to increase urine acidity even more.  Orange juice is not recommended because of the high alkaline ash residue. 

     One-part vinegar to two parts water sloshed over the stoma helps if done once or twice a day.  This encrustation can clog up the stoma and eventually cause a closure of the stoma.  Recurrent urinary tract infections are prevalent in most people with urostomies.  Most of you know the symptoms . . .  fever, a strong urine odor, decrease output, amber-colored urine with a large amount of white sediment.  You may need more fluids.  You should be drinking at lease 64 ounces (two liters) of water each  day.  This will reduce infections and prevent kidney stones.  Cleanliness is also important.

     The pouch should be emptied before it passes the half-full level.  There is a chance that the pouch will pull away from its seal because it is too heavy.  There is also a higher chance of urine backing up into the conduit if the pouch if full.

     Certain brands of pouches are affected by certain cleaning solutions.  For instance, United Surgical's quality control laboratory has determined that using a vinegar and water solution to rinse United pouches changes the vinyl.  They recommend their Uri-Kleen or Uni-Wash or other approved products to clean their pouches.  Discuss this with your supplier.

     The use of a small wastebasket at the side of the bed provides a handy storage place for your night drainage.  unit.  It also prevents kicking it over in the middle of the night.  Also, when connecting your pouch to your night drainage container, do not completely empty your pouch.  The collected urine will run down the tubing into the container and produce a siphon effect.

 

Love's Labor Lost

By Marjorie Kaufman, Los Ileos News

 

     The surgeon probably does not have a stoma; the WOC nurse probably does not have one either; but the patient has a stoma he (we will use the male pronoun) did not want, is having a struggle accepting it, and is in a tailspin over all the paraphernalia and rigmarole of putting ostomy equipment together.

     Eight days post-op and it all seems like a bad dream.  The doctor and the WOC nurse have made a quality attempt to reassure their patient that all is well, and he is ready to go back to the world.  The patient is not so sure about this himself, and does not know what "doing fine" really means.  Not that he doubts the words of the professionals, but he has a strong desire to see one of those people, who have licked this thing.  He wants to be convinced that there may be a better tomorrow.

     The WOC nurse, who believes she has given him the best care possible, calls for a visitor only to satisfy his whim.  The WOC nurse knows that she will take care of the mechanics, and the visitor will provide a glimpse of the patient's future—the picture worth a thousand words.

     A scenario:  The visitor arrives to find the patient in mechanical trouble.  The WOC nurse, not on staff at this hospital, has left the patient "pouch perfect".  The unforeseen happens—as it does with most people with brand new ostomies—a leak.  Written instructions are clear and concise and the materials are ready for application, but the staff nurses' hands are tied.  Orders are "hands-off" until the visiting WOC nurse returns tomorrow.  Padding is applied.

     The visitor?  He know what that leak is doing to the tender and unaccustomed skin.  He can feel the itching, the burning and the discomfort.  He visualizes the inflammation building up while the patient waits for relief that may be a whole day away.  Where once he could have helped, he now is rendered impotent.  By WOC nurse standards, he must ignore the mechanical failure.  The visitor is limited to conversation only.  He is just there to appear healthy . . . not to help medically.

     Dare we then return the criticism professionals have voiced against experienced visitors on occasion?  Is  our first obligation to the professional rather than the patient?  Are we to stand idly by sacrificing the patient's skin to save our own?

     Note: We have published the above article because we think it is of value.  If you are an ostomy visitor, you already know that we are not allowed to touch the patient in a medical fashion.  We do not offer medical advice.  This is the way it has to be to avoid personal liability and medical licensing issues.

     We do not think any volunteer ostomy visitor wants to give medical advice, but it is possible that a visitor will help a patient change a pouching system in an emergency, or even offer tips on irrigating a colostomy.  But we do not.  We make our visits, try to look as nice and healthy as possible, and assure the patient that better days are ahead.  We have all been there.