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November 2009 Last Month’s Meeting (our 392th) This was a wonderful evening to have our mid-fall meeting with many new people in attendance. We were visited by two of our friends from Hollister, Inc., Krystal Kucharski, Consumer Specialist and Mary Rome Senior Consumer Specialist. They generously stayed after the meeting to answer pointed questions our members had regarding their ostomy equipment. We will have our Association elections in January as is stated in our bylaws—available for viewing via www.uoachicago.org . If you would be interested in running for an office, let one of the board members know of your interest at the next meeting. We also are looking for qualified people for important committees. We are updating our mailing/e-mail list every month. Please complete the form on the last page of this newsletter if your home or e-mail addresses change. All your information is strictly confidential and is only used by our Association. No other people or organizations ever have access, under any circumstances, to our membership list. Whenever you are contacted, like when we mail you the monthly newsletter, it will only be by us. Our featured speaker for this evening was a first time visitor to our Association, although she has been working with patients from our group for many years. Deb Wojcik, MSW and an active social worker with the Cancer Wellness Center talked to us about grief. Deb spoke of the entire grieving process; how each of us should learn how to embrace it for our benefit. We must take advantage of the benefits it can provide for us. Grief is a natural process that we all go through. This is a more sophisticated approach than we may have thought. Grief is many layered covering a plethora of emotions as well as physical and chemical reactions to events in our lives. Deb was tailoring her presentation towards people who had ostomy surgery; however, the implications were immense for our well-experienced audience. We hope to publish an article about her most enlightening presentation. UPDATE: Carol Chase Bjerke Exhibit at the International Museum of Surgical Sciences We are planning to meet at the museum (1524 N. Lake Shore Dr., Chicago) on Tuesday or Wednesday, November 17 or 18 to see the exhibit, titled Hidden Agenda, in the afternoon. If we have enough interested people, we can arrange a group tour. Please call Ellen Credille (773 973 5636) if you would like to go. See also
the article in the Phoenix, June 2009, page 48 and following, about Carol
Chase Bjerke, an artist based in Madison, Wisconsin, whose art is influenced
by her experience with having an ostomy.
The museum Web site is www.imss.org. 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 Nancy Chaiken 773-878-8200 Terry Coha 773-880-8198 Children’s Jan Colwell & Maria De Ocampo 773-702-9371 & 2851 Our Lady of Jennifer Dore 847-570-2417 Beth Garrison 312-942-5031 Rush
Presbyterian-St. Luke’s Hospital Madelene Grimm 847-933-6091 Connie Kelly 312-926-6421 Northwestern Kathy Krenz & Gail Meyers 815-338-2500 Centegra-Northern
Marina Makovetskaia & Kathy O'Grady. 847-723-8815 Bari Stiehr & Diane Davis-Zeek 847-618-7986 Nancy Olsen & Mary Rohan 708-229-6060 Little Company
of Barbara Saddler 312-996-0569 Catherine Smith 708-684-3294 Sandy Solbery-Fahmy 847-316-6106 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 OAGC Meeting Dates for 2009 November 18—A special
date . . . Susan Brantley-Smith will address us regarding the new SenSura
system from Coloplast. We will follow her presentation with a Rap
Session. December 16— Our
Gala Holiday Party will feature a delicious catered meal with mouth-watering
desserts provided for by your board of directors. (See the article on page 11.) We decided to invite all of you, our loyal
members, to share this meal with us in appreciation of your generous support
of our ostomy support group. January 20—The
elections for officers plus, Tim
Traznik has accepted our invitation to host a return engagement of a panel
discussion on the challenges associated with living with an ostomy
today. Be sure to come! Our Gala Holiday Party . . . 12/16/2009
Yes, the holidays are right around the corner and that means party time! This year's affair will feature a delicious catered meal from Little Villa Restaurant with mouth-watering appetizers and desserts provided for by your board of directors. The main meal will include a green salad, a chicken entree, a beef entrée, a pasta entree and two side dishes. The party is on a special date, Wednesday, December 16 at 6:30 PM. We will enjoy music, games, prizes and of course fabulous food. In the spirit of holiday giving, we will have a Youth Rally Money Tree to provide funds for children with ostomies to go to a weeklong summer camp especially designed for children with ostomies or diversionary surgery. There is no cost to come to our party and enjoy a meal with us. We want you here and to participate by your attendance. Donations are voluntary, but having fun will be mandatory. Bring your spouse or significant other to share in the joy of the season! If any of you are able to come early to help, we start setting up at 6:00 PM. Assistance with cleanup would be appreciated; we never turn down help. We would like personally to wish each of you and your families a Happy Thanksgiving and December holiday season . . . we will see you at the party! Youth Rally As an ostomy support group, we donate funds to help send a person to the annual Youth Rally. This is a letter from a teenage girl who was able to attend the Youth Rally due to the contributions of our Association. “Thank you for making it possible for me to attend the Youth Rally this year. I look forward to the Rally more than anything else that I do during the year. It gives me a chance to learn about myself; my disease; meet many interesting people, but most of all, see other people who are surviving. The other people who attend do not allow any of their medical limitations to become mental limitations.” “During my first year, I was shy and quiet. It felt like I could not talk about my ostomy issues. I thought there was no one else who really knew what it was like to be a 14-year-old girl with ulcerative colitis. By the end of that camp, I had made close friends. We are in contact throughout the year to support each other and just be friends. As we talked about the things other people would never talk with me about, I became more confident in myself. “ “This is my third year here. I found myself helping first year campers become comfortable with just being themselves. This will be my last year as a camper, but I cannot wait to come back as a counselor next year. I want to continue to learn and continue to help others cope with ostomy surgery.” “Camp is a very special opportunity to be a normal person. I find that I am not alone, and that there are other people just like me out there. I no longer want my battle with ulcerative colitis nor my ostomy issues to slow me down. Thank you again for giving me the chance to experience this valuable trip. With gratitude, Elizabeth Long “ 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 For information regarding this special
ostomy group serving SW Sub All meetings are held at Little Company of Mary Hospital, Evergreen Park, Mary Potter
Pavilion, Lower Level, 2850 W. 95th St. Facts of Life · At least five people in this world love you so much they would die for you. · At least 15 people in this world love you in some way. · The only reason anyone would ever absolutely hate you is that he/she wants to be just like you. · A smile from you can bring happiness to anyone, even if he/she does like you. · Every night, someone thinks about you before he/she goes to sleep. · You mean the world to someone. · You are special and unique, in your own way. · Someone you do not know even exists loves you. · When you make the biggest mistake ever, something good will come from it. · When you think the world has turned its back on you, look—you most likely turned your back on the world. · When you think you have no chance at getting what you want, you probably will not obtain it, but if you believe in yourself, you probably eventually will obtain it. · Always remember compliments you received, forget the rude remarks. · Always tell someone how you feel about him/her; you will feel much better when they know. · If you have a great friend, take the time to let him/her know that he/she is great. Ostomy
Poll What is the best thing
you have found about having ostomy surgery? (Results from 148 people) I am free from all medication and pain
23% I’m free from looking for nearest toilet
17% I can mostly do what I want, when I want 13% I have
freedom
14% I’m free of my
disease 10% There is no good thing about it . . . I hate it
6% I have only just had
surgery
6% No surgery but am contemplating
it 11% Who have you told? (Results from 757 people) Nobody—It is my own
business
4% Only those who need to
know 20% Only close
family 5% Only close family and
friends 27% Anyone who cares to
listen
44% Preparing for
Ostomy Surgery By Rodney Crick,
Re-Route What can a person, or should a person do to prepare for having ostomy surgery? Learn as much as you can about the type of ostomy you are going to have created, where it will be located, what it will look like, how it will function, and what you will need in the way of supplies to care for it. Pamphlets that explain the various types of ostomies and how they are created are available through http://www.fowusa.org . ConvaTec and Hollister Intl. both have videos and informational booklets available that explain a great deal about the different types of ostomies and how to care for them. They are available by contacting these suppliers directly at www.ConvaTec.com 800-422-5511 and www.Hollister.com 847-680-1000. Discuss any concerns you may have with your surgeon ahead of time. The surgeon you choose should be experienced in the number of ostomy surgeries performed. Ideally, the stoma he/she will create should protrude outward from the abdomen at least one-half inch for ileostomies. Patients that have stomas that are created flush with the skin tend to experience more skin excoriations with ileostomies and some colostomies. During peristalsis, the skin surrounding the stoma will pull inward with the result being that discharge-containing enzymes will get between the barrier and the skin causing the pouch to fail, excoriating the skin. Ask the hospital where you will be having surgery to help you arrange for an ostomy visitor. You have a right to ask for and receive a trained Ostomy Visitor through your local ostomy association. They can match you up with a visitor that has undergone the same type of surgery you will be having and who can answer many of your questions and calm your fears and anxiety. Ask the visitor if you can call them later with any further questions you might have. Ask the hospital where surgery will be performed if they have a Certified Wound Ostomy Continence Nurse (CWOCN) on staff that you can visit to have your stoma site marked prior to surgery being performed. This allows the surgeon to place the stoma on the abdomen in the area that is least likely to be obtrusive or cause pouching problems after surgery. Your stoma will be easier to care for if it is not created in a beltline, fold or scar tissue crevice in your skin and results in better adhesion of the skin barrier with fewer leakages and skin problems. The CWOCN nurse can also show you samples of the pouch you will wear during your stay in the hospital. During this visit, make sure that the ostomy nurse will show you how to change your skin barrier, pouch and teach you the basics of stoma care before you leave the hospital. Adopt a positive mental attitude and realistic expectations about your surgery and life afterward. Face the realization that you are not the only person this has happened to in life. There are about a half million people out there in the U.S. alone whose ostomy surgeries have allowed them to conquer disease and lead normal healthy lifestyles filled with work, activities, play and relationships. Realize that you must give yourself time to heal following surgery; but, do expect to become one of them. Life after
Ileostomy Surgery By Jan Madaffri My name is Jan Madaffri and I am a 23-year-old female. I only knew my future husband four months before my permanent ileostomy surgery. In January, I received my first ileostomy—a temporary—due to ulcerative colitis. It was later reversed to a J-pouch in July. I was not in pain anymore from ulcerative colitis, but I was unable to control my trips to the toilet. This put a big damper on my social life; i.e., being a prisoner to the toilet. When I first met my husband, I only explained to him that I could not control my bowel movements due to a disease. I did not go into specifics about the temporary ileostomy that I had a year earlier. I did not feel it was important anymore since the ostomy was gone. How was I to know that I would need another ileostomy later down the line? We were not able to go out and eat in restaurants or go to movies or clubs because my body would not allow me to be away from a toilet for very long. Our dates consisted of watching a rented movie at my house so the toilet would be close by. At times, I would be in the bathroom for hours at a time. By the time I could come back out and join him, he would be asleep on the couch. He did not seem to mind, but I hated losing that time to be with him. After we had been dating for about four months, I needed another surgery. The J-pouch was failing and I needed a permanent ileostomy to save my life. I was ready to have the ostomy back; I was tired of living on the toilet. When I was in high school, I only attended my freshman year in the physical school building. I finished the next three years being home schooled because of the severity and complications of the ulcerative colitis. I did not want to be a prisoner any longer. When I recovered from the surgery, I was scared he would leave me once I told him what the surgery involved. I showed him a brochure that would best explain the surgery, what an ileostomy entailed and what it looked like. He simply said, "OK". In a little over two years, we were married. He later said that when I was explaining the surgery to him, he realized just how much he loved me. He said it did not matter that I had an ileostomy; he just wanted me to feel well and to be with me. Now, we were able to go out in public and enjoy being with each other and our friends. I swim, go out to clubs to dance, exercise; nothing is "off limits" because I have an ileostomy. In fact, without the ileostomy, many activities had previously been off limits to me. I would still be grateful for my ileostomy even if he had left me because he could not handle it. However, I am much happier that he loves me and decides to stay. He has proven to me that there are people out there who will love you for you. Anyway—the way I see it—if anyone does not, then he/she does not deserve your love.
The Phases of
Surgical Recovery By Dr. Albert G.
Wagoner Each patient, along with the family, usually goes through four phases of recovery, following an accident or illness that results in loss of function of an important part of the body. Only the time required for each phase varies. Knowledge of the four phases of recovery is essential. The Shock Phase—The period of psychological impact. Probably, you remember nothing of this phase after your operation. Nevertheless, a phase requires much of support. The Defensive Retreat Phase—The period in which you defend yourself against the implication of the crisis. You avoid reality. Characteristic in this period is wishful thinking or denial, or repression of your actual condition. For example, a person with an ostomy believes that his/her entire colon is still there and will be connected later. The Phase of Acknowledgment—In this period you face reality. As you give up the existing old structure, you may enter into a period, at least temporarily, of depression, apathy, agitation or bitterness and of high anxiety. You hate your stoma, yourself; you cry a lot, pity or condemn yourself. You may not eat, be unable to sleep or want to be left to die. In this phase, you need all the support that can be mustered. The Phase of Adaptation—Now, you actively cope with the situation in a constructive manner. You adapt, during a shorter or longer period, the adjustments that are necessary. You begin to establish new structures and develop a new sense of worth, with the aid of an ET nurse and an ostomy visitor, you can learn about living with an ostomy. Aided by your physician, social workers, ostomy association and family, you go about rebuilding and altering the life that brought about the condition. Sound familiar? Northwest Community Hospital An ostomy support group formed in 2008 at Northwest Community Hospital, 800 W. Central Road, 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 at 1:00 PM in the Busse
Center, B1 level, Room LC7-8 of the Learning Center. 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 December 10, 2009 February 11, 2010 April 8 June 3 August 12 October 7 December 9 Did you know that we have our own Internet site? Next time you are on your computer, check out our site at 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 December 10 Colostomy
Complications www.fowusa.org/newsite/pdf/UOAColostomy.pdf The most common problem after colostomy surgery is the development of a hernia around the stoma site. This is manifested as a bulge in the skin around the stoma, difficulty irrigating and partial obstruction. Heavy lifting should be avoided immediately after surgery. Many of these problems can be avoided if the stoma site is marked by the ostomy nurse before surgery. The preferred site lies within the rectus abdominus muscle near the midline. The ostomy nurse is also helpful in managing complications should they arise. Seeking Medical Assistance You should call the doctor or ostomy nurse when you have: · Severe cramps lasting more than two or three hours · Unusual odor lasting more than a week · Unusual change in stoma size and appearance · Obstruction at the stoma and/or prolapse of the stoma · Excessive bleeding from the stoma opening, or a moderate amount in the pouch in several emptyings Note: Eating beets will lead to some red discoloration of output. · Severe injury or cut to the stoma · Continuous bleeding at the junction between stoma and skin · Watery discharge lasting more than five or six hours · Chronic skin irritation · Stenosis of the stoma (narrowing) Poor
Ostomy Management Ideas Adapted By The New Outlook
The following are poor procedures we found some people implement to manage their pouching system. They are not recommended because they will yield less than optimal results. Sometimes we all do things that seem logical at the time but inadvertently lessen our quality of life. · Using alcohol regularly to clean the peristomal skin may result in itching, skin irritation and damage to sensitive tissue. · Wrapping the drainable pouch tail around and around the clamp before closing it will not make the clamp work better. All it will do is spring the clamp out of shape. Replace your old clamp with a new one every month. · Wearing a skin barrier for as long as you can until it leaks is not a good idea. The actual goal is to change the skin barrier before it leaks. · Using the same pouch too long on the skin barrier will create odors. Therefore, three to four days is the maximum use recommended. Pouches become saturated with odor, which is difficult to remove. · Ignoring skin problems create future concerns. Always treat any skin irritations when you change your pouching system. Skin barriers covering damaged skin areas are made actually to help heal them if used properly. · Letting the pouch get full before emptying it is asking for trouble. Excess weight will separate a two-piece system and will put too much weight on the skin barrier resulting possibly in multiple problems. Empty the pouch at least when it is about one-third full. · Going without a seat belt in a car is not prudent. A well-placed and adjusted seat belt should not cause much of an interference with stoma function nor damage your stoma. In an accident, it is possible that your stoma is injured, but it is much easier to repair a bruised stoma than a crushed skull. · Living with unsatisfactory ostomy management can now be overcome. If you are unhappy with how your pouching system works, make an appointment now with a WOC nurse. Most wound and ostomy care nurses have great ideas. · Coming to your local ostomy association meetings only when you have personal healthcare issues. Once you figured out this ostomy business, sharing with others turns out to be a surprisingly good way to keep yourself proactive and happy. Success usually
comes to those who are too busy to be looking for it. --Henry David
Thoreau
Life
with an Ostomy By
Jorge Pretense
Will you
bulge?
No. Actually, without a part of the intestine or bladder, and its
contents, you should have a flatter tummy than before. You can expect
to wear, with little exception, what you wore before—and this includes tight clothing and bathing suits. Will you smell? No! Those with ileostomies and urinary diversions will be fitted for pouching systems, which are completely odor-proof. Some people with colostomies can control odor with diet or just like people with ileostomies, use an odor-barrier type pouching system—like virtually all sold. In addition, for all people with ostomies there are deodorants for external use and odor-reducing compounds to be taken by mouth, should they be needed. I have never met a person with ostomy odor. Although I have met many that could use a bath and some breathe mints. Will you make noises? Everyone produces gas. Normal people release gas about 15-20 times a day. I bet if you tell this to anyone that he/she will be surprised by the times normal people make gas. Yet, air-swallowers produce even more. You do not make noises so often that you cannot pretend that your stomach is growling. Be the fastest elbow in the West, or wear a two-way stretch binder, girdle or pantyhose to muffle the sound when it is audible if this is a reoccurring issue. Avoid skipping meals, gassy foods, drinking through a straw and chewing gum. Will you feel the waste discharge? Sometimes you will, but probably very little. The intestines have no actual feeling nerves so to speak, but fecal ostomies will on occasion feel the peristomal skin move because of peristalsis. People with lower colostomies usually are more aware of intestinal movement when it happens. Those with urinary diversions probably will be unaware of kidney discharge. The person with an ileostomy or urinary diversion should check his/her pouch occasionally to see if it ready to be emptied or he/she might find his/her pouch sagging—like a cow in udder misery needs to be milked. Will you be a captive of the toilet? Absolutely not! At first, you may find yourself spending more time than usual in the bathroom. Soon you will become efficient with the management of your stoma. Then your routine will not involve any more time than normal bathroom visits, except for the few minutes used in changing the pouching system or irrigating. There are a great many manufacturers inventing better equipment every year. Make sure you stay informed about the state-of-the-art in ostomy care. Will you starve? No. In fact, make sure you do not get too fat. Most people after ostomy surgery get fat. Follow your doctor’s orders at each stage of your adjustment. Most people with ostomies will be able to eat and tolerate just about anything. Others may find difficulty with some foods. Each person is so individual in his/her tolerance of foods that he/she must determine what is best by trial and error. All people with ostomies should drink plenty of the proper fluids, if not contraindicated by one’s doctor. Will you be a social outcast? Not because of your ostomy, you won’t. I have never met someone who was an outcast just because of having an ostomy and do not know of anyone who has. Of course, you could be the first one. If you do not smell badly, bulge, make rude noises and dwell in the toilet, what is to make you obvious and repulsive? Only your own attitude—your morale—will affect your companions. No cheerful, brave and triumphant person will be an outcast just because of an ostomy. Health
Care & Ostomies By Peggy Christ, CWOCN and Ed Gambrell
What do health care personnel need to know about ostomy surgery? Communication is the key. Now that you have an ostomy or an internal diversion, some changes have occurred in the normal routines of life. This is especially true of medical treatment and hospitalization. Some medical and hospital assumptions and routines applicable to people without ostomies may no longer apply to you. For your comfort, well-being and in some instances, your health and personal safety, it is important that you know how you need to be treated differently. You need to communicate this information appropriately to doctors and medical attendants who need to know. Your doctor, ostomy nurse and others who normally attend your ostomy are no doubt well informed of the differences in treatment you require and will help you communicate with medical personnel uninformed about ostomy matters. The fact that some health care personnel may be uninformed is quite understandable. The staffs of the thousands of hospitals in North America see relatively few ostomy patients. Few nurses and other hospital attendants have ever cared for an ostomy patient. Many of those who have are not aware of the different types of ostomies and the special considerations each requires. Doctors have become highly specialized to bring more expert care to patients. Therefore, many rarely have the occasion or the time to develop expertise in ostomy, which is very much a specialty in itself. So do not be shy about communicating your condition and its special requirements to all who attend you for non-ostomy ailments. This is for their benefit as well as your own. If strong insistence should fail to bring about understanding, you have the right to refuse any procedure you consider harmful to yourself. Dr. Marshall Sparberg, author of the excellent book Ileostomy Care and a frequent writer on ileostomy matters, has this to say: It is within the individual patient's right to refuse any hospital procedure, and no amount of insistence from an uninformed individual should change this decision. Ostomies are different. One of the most serious misunderstandings is that all stomas represent colostomies, and that all colostomies are the same. This can be disastrous for the patient who has an ileostomy or urostomy. It can cause trouble for the person with a transverse colostomy when treated as a sigmoid colostomy. In addition, even those with the same type of ostomy require variations in care and treatment. Ostomies vary greatly in nature just as individuals vary. Irrigations and enemas: Those with urostomies should never be given an irrigation or enema through the stoma. An irrigation of a urinary stoma could cause serious kidney infection and damage. Those with ileostomies should never be given an irrigation unless a doctor, WOC nurse or other expert administers one to break up a blockage or for other compelling reasons. An irrigation or enema of the small intestine may cause the person with an ileostomy ill effect. However, a person with a colostomy may be provided irrigations; this poses little danger if it is done properly. A stoma is not an anus. Some medical attendants do not realize the difference between a stoma and an anus. They may treat a stoma as roughly as they treat an anus. If an enema or irrigation with a catheter is involved, care must be taken to avoid bowel injury. Some catheters, though streamlined on the end, are stiff and should not be inserted into a stoma unless performed by a physician or ostomy nurse. A cone is much safer, easier to use and does a better job than a catheter. New “Uncover Ostomy” Website Forwarded By Ostomy Outlook, Oklahoma A new website called “Uncover Ostomy” at www.UncoverOstomy.com has been launched as an on-line awareness campaign shaping a positive conversation about the ostomy in social media spaces. They share positive stories and thought provoking images—dare we say sexy?—to spark this conversation. This project is the creation of Jessica Grossman a 20-year-old actor, model and university student from Toronto, Canada who has had an ileostomy since 2003. The project is supported by IDEAS—the Intestinal Disease Education and Awareness Society (www.WeNeedIdeas.com) and by UOAA. The new website was launched on Oct 3, coinciding with the observance of World Ostomy Day 2009 throughout most of the world. The U.S. observance of World Ostomy Day was postponed to Oct 17. The new site is linked closely to social networking sites such as Twitter and Facebook, view www.facebook.com/uncoverostomy . On her site, she tells a bit about herself: “I was born in Toronto, Ontario, Canada on September 3, 1989. I grew up loving the arts, acting, singing, dancing, drawing, painting and everything in between. I went through various career goals as a child; such as, a teacher and a fashion designer, but my real dream has always been to be an actor. School was a big part of my life. I went to a private elementary school and a public high school. I learned very different things from both schools and their environments, but I learned much nonetheless. At 8-years-old, I started to have stomach pains. When I was 9, I was diagnosed with Crohn’s disease. At 10, I was living with the chronic pain and other symptoms of the disease. At 11, I spent my first hospitalization, 9 days, 7 of which I was not allowed to eat. At 12, I lived in the hospital. At 13, I was told if I did not agree to have my colon removed and replaced with an ostomy, I would die. At 13, I was saved. This is just a summary. Despite how difficult it is to talk about myself his way, I think this is an important story so many of us share. In grade 12, I was asked to create a media campaign to spread awareness of a topic of my choosing. Of course, I chose my ostomy. This was my chance to share my story and spread awareness to show that if I can be comfortable with what I have, anyone can be. The ad campaign I created was well received. It ended up being published in a few magazines and helped me win a scholarship to attend the University of Western Ontario for Media Studies. The message my ad contained, however, needed to be spread wider. This is when I teamed up with IDEAS and the UOAA. They told me my campaign was exactly what they needed—what society needed—to spread awareness. This is what I am doing.” 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. You name it and 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 no more 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 . . . whatever else 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. Think about an easier system . . . One suggestion when using an open pouching system is 1. Sit on the toilet with the pouch between your legs. 2. Lean forward. 3. With the enclosure clip on, turn the contents upward away from the body. 4. Remove the clip carefully, aim the end of the pouch into the toilet and empty. 5. 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 ostomy-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. UOAA News The 2009 Conference theme, “Let the Good
Times Roll” is evident in photos that were taken at this year’s event in New
Orleans. You can check them out by
visiting UOAA.smugmug.com
.
In addition, one popular event of the Conference was the Fashion Show,
coordinated by LeeAnn Barcus. For
pictures of this “revealing” event visit Hollister’s C3Life website, www.c3life.com and click on “What’s New”,
UOAA Conference Fashion Show photos. UOAA
entered into a contract for the production of a 5-minute UOAA/ostomy public
awareness tape that will appear on Public TV, National Medical Report as
shown on cable, network TV and internationally as part of Voice of America. This excellent project, coordinated by Kristin Knipp, can now be viewed on the UOAA website at: http://www.uoaa.org click on the sentence that says, “See the New UOAA PSA”.
You, your family and friends can now donate a vehicle to Donate For
Charity and UOAA will receive a percentage of the funds. To learn about the program visit www.donateforcharity.com
For required forms call 1-866-392-4483 or go to http://donateforcharity.com/jumpform.html?ID=United+Ostomy+Associations+of+America
. Once you receive the forms, provide the necessary information, sign
them and mail them back to Donate For Charity. You will be notified when the vehicle will
be picked up and asked to leave your keys in the vehicle on that day. Donations are accepted from any location in
the U.S. http://www.uoaa.org/living_with_an_ostomy.shtml UOAA announces the web-release of Living with an Ostomy, a 17-minute video designed to help folks become of aware of the great life that can be achieved by owning an ostomy. A major goal of this project is to provide
an entertaining educational tool to enlighten people about the wonderful quality
of life available after ostomy surgery.
There is rock music, great camera work, interesting people and stories
as they tell how they found their way forward to doing the things they love
to do—because of the ostomy that gave them their life back. There are hikers and cyclists, surfers and
spelunkers, golfers, nurses, even kids—all average folks with a drive to have
a high quality of life on their own terms. Watch all 17 minutes or you may miss much if
you stop watching when the credits roll. Support Our Ostomy
Association We are now offering free membership to our Association. To provide for our few expenses (mainly the publishing of The New Outlook) we need your assistance. Please send a contribution to help maintain our group’s viability. Name & Address: ___________________________ _______________________________ Send To: Ostomy Association of Greater Chicago Mr. Tim Traznik, Treasurer 40 Fallstone Drive, Streamwood, IL 60107-1079
For our liability disclaimer and privacy policy visit http://uoachicago.org/liability.htm. |
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