T the E N New W O out Tlo Ook K

The New Outlook United Ostomy Association of Chicago "

No August Meeting

Our next meeting is on Wednesday, September 18 at 7:30 PM

Lutheran General Hospital Special Functions Room, 10th floor 1775 Dempster St., Park Ridge, IL " "

" Board Meeting at 6:30 PM " " Ncuv"Oqpvj‚u"Oggvkpi"(Our 433rd) the-art filter with an anticlogging film layer, soft and quiet materials, and the security of the InvisiClose™ Last month we had our annual pizza party! We tail closure with Lock-it Pocket™. ConvaTec’s latest had a very informational meeting to show new pouches combined with SUR-FIT Natura® advanced products that are available, some with samples to try. skin barrier adhesives offer you the security, comfort Our special guests were Steve Vandevender from and discretion you require. ConvaTec and Patrick Bance from Byram If you have a talent that you would like to share Healthcare. by participating in one of our many diverse Social isolation can lead to health and emotional committees, please let an officer know. Our offices problems. Spending time with friends and family, and committees are listed in our bylaws, which may becoming involved in volunteer work or social be viewed at www.uoachicago.org. Then follow the hobbies, can all help reduce depression and anxiety. link to OAGC. Attend a support group meeting like ours. We have To make sure you do not miss an important others who have shared your experiences and our announcement, update your e-mail address with us at meetings are an excellent way to move into a more wqcejkeciqBeeqoecuv0pgv. To ensure delivery, socially active lifestyle after ostomy surgery. We make sure we are in your address book or safe all, new patients and veterans, benefit from sender list. Our e-mail list is private and never interacting with each other. shared or sold. We occasionally have requests from Steve introduced ConvaTec’s brand new addition public relations firms and the like for our members to their state-of-the-art filtered pouching system, the to participate in focus groups about ostomy surgery. Natura®+ Drainable Pouch. The Natura®+ pouches You will usually be paid for your time, buut are compatible with the SUR-FIT Natura® Two- sometimes it is on a volunteer basis. Let us know if Piece Ostomy System, which is ConvaTec’s most you want to be included. extensive two-piece product line. The SUR-FIT """""We have been informed by Lutheran General Natura® and Natura®+ Flange System signals a Hospital that parking in their enclosed garage is now secure, accurate closure with a series of audible free for our members. This means you may park in clicks. A simple snap-off, snap-on design allows the inside garage, take a few steps to the elevators, users to change the pouch quickly when they change and come to the 10th flooor, where we have our activities without removing the skin barrier from the meetings. It is so easy to come. Be sure to visit us skin. at our next meeting in September, when we feature The Natura®+ pouching system offers the latest Diane Zeek, CWOCN, along with Otto the Ostomy technologies from ConvaTec, including a state-of- Mannequin.

Wpkvgf"Quvqo{"Cuuqekcvkqp"qh"Ejkeciq"" Established April 1975 Oggvkpi"Fcvgu cv"Nwvjgtcp"Igpgtcn"Jqurkvcn" " Rtgukfgpv1Ogodgtujkr" Cwiwuv¤Pq"Oggvkpi"(UOAA Conference)" Judy Svoboda [email protected] 847-942-3809 Xkeg"Rtgukfgpv1Pgyungvvgt" Ugrvgodgt" 3:¤Diane Zeek, CWOCN, along with Renard Narcaroti [email protected] 630-418-7127 Otto the Ostomy Mannequin"" Vtgcuwtgt" Tim Traznik [email protected] 630-736-1889 Qevqdgt"38" Ugetgvct{1Rtqitcou" Fgegodgt"33—Our 2013 Gala Holiday Party Nancy Cassai [email protected] 847-767-1447 " Ic{"1"Ngudkcp"Quvqocvgu" " Fred Shulak [email protected] 773-286-4005 Xkukvkpi"" Uqwvjyguv"Uwdwtdcp"Ejkeciq" Peggy Bassrawi, RN [email protected] 847-251-1626 "" Yc{u"cpf"Ogcpu"[email protected] " The Southwest Suburban Chicago Ostomy Support Jerry & Sally Schinberg 847-364-4547 Group is an entirely volunteer ostomy association Yqwpf"Quvqo{"Eqpvkpgpeg"Pwtugu"*YQEP+" dedicated to the mutual aid, education and moral Bernie auf dem Graben 773-774-8000" support of people with ostomies and their families. Resurrection Hospital Alyce Barnicle 708-245-2920 Meetings are held at 7:30 PM on the third Monday LaGrange Hospital of each month throughout the year, except July, Nancy Chaiken 773-878-8200 Swedish Covenant Hospital August, December and January. Terry Coha 773-880-8198 For information regarding this special ostomy Children’s Memorial Hospital Jan Colwell & Maria De Ocampo 773-702-9371 & 2851 group serving Chicago’s greater southwest side, University of Chicago please call Edna Wooding, WOC nurse and Lorraine Compton 773-282-7000 Our Lady of Resurrection Hospital association president, at 708-423-5641. All Jennifer Dore 847-570-2417 meetings are at Nkvvng"Eqorcp{"qh"Oct{"Jqurkvcn, Evanston Hospital Beth Garrison 312-942-5031 Evergreen Park, Mary Potter Pavilion, L Level, 2850 Robert Maurer W. 95th St. Joyce Reft Laura Crawford Rush Presbyterian--St. Luke’s Hospital Madelene Grimm 847-933-6091 Pqtvjyguv"Eqoowpkv{"Jqurkvcn"" Skokie Hospital--North Shore University Health System " Connie Kelly 312-926-6421 Northwestern Memorial Hospital The Northwest Community Hospital Ostomy Kathy Krenz & Gail Meyers 815-338-2500 Support Group meets at 800 W. Central Road, Centegra-Northern Illinois Medical Marina Makovetskaia & Kathy O'Grady 847-723-8815 Arlington Heights. They wish to extend an Lutheran General Hospital invitation to all of our readers to visit them. The Bari Stiehr & Diane Davis-Zeek 847-618-3125 Northwest Community Hospital WOC nurses at the hospital lead the group. For Nancy Olsen & Mary Rohan 708-229-6060 more information, please contact Diane Zeek, RN, at Little Company of Mary Hospital Barbara Saddler 312-996-0569 847-618-3215, [email protected]. University of Illinois They meet from 1:00 PM until 2:00 PM in the Catherine Smith 708-684-3294 Advocate Christ Medical Center Busse Center, B1 level, Rooms LC7-8 of the Sandy Solbery-Fahmy 847-316-6106 Learning Center. This building may be accessed Saint Francis Hospital Nancy Spillo 847-493-4800 from the garage at the west end of the Busse Center. Presence Health Care It is easiest to enter from Central Road. Oggvkpi"Fcvgu"hqt"4235" Pcvkqpcn"WQCC"Xktvwcn"Pgvyqtmu" " • Pull Thru Network (Parents of children with bowel and urinary dysfunctions): Bonnie McElroy 205-978-2930 Cwiwuv":" • UOAA Teen Network: Jude Ebbinghaus 860-445-8224 Qevqdgt"32" " • GLO (Gay & Lesbian Ostomates): Fred Shulak 773-286-4005 Fgegodgt"34" • Young Ostomate & Diversion Allia. of Amer: Eric En 714-904-4870 • Thirty Plus: Kathy DiPonio 586-219-1876 • Continent Diversion Network: Lynne Kramer 215-637-2409 " For our liability disclaimer and privacy policy visit " http://uoachicago.org/liability.htm

PRESORTED FIRST CLASS yyy0wqcejkeciq0qti wqcejkeciqBeqoecuv0pgv" U.S. POSTAGE PAID OAK BROOK IL 2 PERMIT NO. 265 bump near the incision. Some data show that about 10%–15% of patients with any type of abdominal surgery will experience a hernia as a postoperative complication. Mark Drug Medical Supply People with ostomies are at risk for a hernia, not 76:"Y"Fwpfgg"Tf."Yjggnkpi"KN"822;2":69/759/:722" only at the incision site, but also at the stoma itself. Vjg"Quvqo{"Uvqtg" The stoma area is vulnerable where the surgeon pulls " " the intestine through the abdominal wall. These are Yg"ctg"nqecn"cpf"jcxg"vjg"nctiguv" called peristomal hernias. kpxgpvqt{"kp"vjg"Ejkeciq"ctgc" Peristomal hernias appear as a large bulge around the stoma, most noticeable when standing. The Eqog"kp"cpf"xkukv"0"0"0"Ugg"yjcv"ku"pgy" stoma looks like it is on top of a hill. Generally, hernias do not cause a medical emergency. However, Manufacturers Accessories they can cause problems with daily living. A • ConvaTec Adhesive Removers peristomal hernia can cause poor stoma functioning, • Hollister Skin Prep such as delayed output from colostomy irrigations or • Coloplast Deodorants abdominal cramping. Of course, if you experience • Marlen Belts severe abdominal pain, cramping and no stoma • NuHope Undergarments output, a call to your doctor is in order. Peristomal • Cymed Pouch Covers hernias can also cause problems with pouching, Shower Accessories including increased leakage and skin irritation because of the irregular abdominal surface. " To compensate for this abdominal muscle "":69/759/:722" "Yg"dknn"fktgev"vq" weakness, wearing a support belt can be helpful. 3/:22/69;/OCTM" Ogfkectg/Ogfkeckf" Some people wear a support belt for physical HCZ":69/759/;652" cpf"Rtkxcvg"Kpuwtcpeg"" activities such as gardening, working out at the gym " and performing physical labor on the job. Wide [email protected] support belts can reduce some of the symptoms of a peristomal hernia, as well as reduce the risk of further herniation. A certified WOC nurse can assist in choosing a support belt for you. " The best way to avoid surgical complications is to Ujgtocp"Jqurkvcn"Quvqo{"Itqwr" exercise. Begin by walking three to five times per " day. Start with short distances at first, and then try There is a new ostomy support group in Elgin to work up to 5 to 7 miles a day if you have no other having meetings at Sherman Hospital. They now physically limiting challenges. It is important to meet on the ugeqpf"Ygfpgufc{ of every month. build up the distance you walk gradually. Under the The contact person for any information is advice of your doctor begin adding arm, leg, and Heather LaCoco, BSN, Case Manager body muscle-building exercises. Never strain Surgical Care Sherman Health yourself. Let me repeat, never strain yourself! You 224-783-2458 will gain strength and look and feel healthier. [email protected] " " Jgtpkc"cpf"vjg"Quvqo{"Rcvkgpv There is an interesting CNN iReport By Glenda Hamburg, CWOCN on the good life people can achieve Hernias are a common occurrence following any after ostomy surgery. Go to the abdominal surgery. The surgical incision causes Internet site set up to view it at weakness of the muscles and tissues, which increases http://ireport.cnn.com/docs/doc-962572. the risk of hernia. A hernia is the protrusion of the intestine through the muscle layers and is seen as a

3 Rwnn"Vjtqwij" By Luanne Brogna, CWOCN, NY

The perianal skin is most at risk for inflammation and burning irritation during periods of excessive mucus discharge and increased bowel frequency. Following mucosal stripping, the anus is stretched so that the mucosa can be removed. It will take some time for the sphincter muscles to return to normal functioning once again. Immediately after ileostomy closure, whatever came out of one’s ileostomy is now going to come out of the anus. The new reservoir has not been accustomed to storing stool yet and needs a good 6 to 12 months to adapt. Bouts of diarrhea are likely to occur. This may be caused by eating too much food, disagreeable food, food containing bad bacteria, or spoiled food. Most people regain full control over the passage of stool, gas and mucus from their anus. A small

minority may need to use a pad or panty liner for Quvqo{"Dcttkgt"Uvwf{" fecal and/or mucus seepage. However, all people " """""Medical students at Loyola University in need regular perianal skin care to prevent irritation Maywood are conducting a study on the effects of and to promote comfort and healing when irritation different skin barrier materials under the supervision is inevitable. of Hollister, Inc. The goal is to improve the quality There are some suggestions for perianal skin care of skin barriers that people with ostomies, like us, that will be helpful whether you want to maintain use every day. They have asked us to assist them in healthy skin or soothe a burning sensation. Cleanse finding candidates to participate. The requirements and dry skin thoroughly after each discharge of of the study are mucus or feces. Use only soft material for cleansing, e.g., soft tissue or cotton balls. Ordinary toilet paper • Adults only—over 18 years old is too abrasive. • More than six months experience with an ostomy Warm water is all that is necessary for • No damaged peristomal skin or psoriasis intermittent care. Reserve soap for your shower or • Not currently going through chemo therapy bath. Using soap that is drying and difficult to rinse • Participants will be asked to sign an informed thoroughly may cause itching and further compound consent form to try the new products the irritation. Some people have found Balneol to be Candidates may be male or female and have a helpful. It is a perianal cleansing lotion; it does not colostomy, ileostomy or urostomy. The study begins require rinsing and is very soothing. Pads or panty August 24. You will be given an appointment at a liners, if used, should be changed frequently to keep time convenient for you at Loyola Medical Center in skin clean, dry and irritation-free. Because cotton Maywood. They will need you about four hours. breathes, cotton underwear, or at least a cotton They will place three different strips—the current crotch, is advisable to keep perspiration at a number in the study—of barrier material on your minimum and to allow for air circulation. abdomen. Tests will be performed to measure how the barrier reacts to skin oil, skin pH levels, skin moisture, etc. Dcevgtkc"cpf"[qwt"Rqwej" Forwarded by the Brevard (FL) Ostomy Newsletter We need at least 21 people with ostomies for a representative sample. You will receive a $100 Visa Many patients having ostomy surgery worry gift card for your successful involvement. To join about bacteria. Those with colostomies and us, please contact Malford Cullum at ileostomies ask if their stomas will become infected [email protected]. with the discharge of stool.

4 This is a myth! The stoma is accustomed to the can be common with persons who catheterize normal bacteria in the intestine. Keep the skin frequently and can be even more prominent if proper around the area clean and be careful of adjacent hand washing and cleaning of the catheters are not wounds. You may want to keep fecal drainage away performed routinely. In addition, a large number of from the incision. Do not worry about the ostomy women over the age of 65 will experience at least becoming infected from normal discharge. Nature one urinary tract infection each year. has provided well. Our bodies are accustomed to How does this special ingredient in cranberry certain bacteria. juice work? The concentrated tannins prevent E. coli The urinary ostomy patient is more likely to be bacteria, the main culprit in urinary infections, from susceptible to infection than one with a fecal ostomy. adhering to the cells that line the urinary tract. Urine is sterile. Otherwise, we all would constantly (Escherichia coli bacteria normally live in the have some type of urinary infection. It is important intestines of healthy people and animals. Most to keep the urinary pouch very clean. On days that it varieties of E. coli are harmless or cause relatively is not changed, it should be rinsed with a solution of brief diarrhea.) Scientists believe that tannins block 1/3 white vinegar and 2/3 tap water. This can be the growth of the part of the bacteria that adheres to allowed to run up over the stoma and will help the walls of the bladder or kidneys. Therefore, drink prevent crystals. The vinegar produces an acid cranberry juice. It is good for your health. environment in the pouch. Bacteria cannot multiply as readily in an acid condition. Hqewu"qp"Rgtkuvqocn"Jgtpkcu" The person with a urinary ostomy should use a Barbara Sadler, WOC nurse, University of Illinois night drainage pouch and clean it every day. White A peristomal hernia is a hernia near the site of the vinegar and water can be used for this also. Some incision for the stoma. Peristomal hernias form in people with urinary ostomies use a special the gap between the stoma and the surrounding disinfectant or dilute Lysol solution. When the tissue. The bowel, usually the small intestine or drainage pouch has sediment that cannot be removed omentum, protrudes through the fascial defect, by cleaning, it should be discarded. forming a bulge at the base of the stoma. The bulge Drinking plenty of fluids is important for every may completely surround the stoma. Hernias usually person with an ostomy. Many urologists also occur at the mesenteric aspect of the stoma or prescribe vitamin C to help keep the urine acid and laterally. It is not a general muscular weakness with less susceptible to infection. Always check with bulging across the entire lower part of the abdomen. your doctor first. For some people, vitamin C is According to the law of La Place (1749–1827), contraindicated. Cranberry juice does help to keep the radial force on a normal abdominal wall is the urine acidic in general. related to the pressure in the abdominal cavity and Ostomy patients should strive to live a normal the radius of the abdominal cavity. Increased intra- life, keep fit nutritionally, and drink sufficient fluids abdominal pressure expands the stomal opening in to help prevent infection. Do not live in fear of the abdominal wall because of the tangential forces infection. acting on it. Hernias are more likely to develop with larger stomal diameters and (as in obese persons) Rtgxgpv"Wtkpct{"Kphgevkqpu" larger abdomens. Seattle Washington Ostomy Association Rtgfkurqukpi"Hcevqtu"hqt"Fgxgnqrkpi"c"Jgtpkc"

C0"Rcvkgpv"ejctcevgtkuvkeu In a study published in the Journal of the 1. Obesity American Medical Association, cranberry juice was 2. Loss of muscle tone confirmed to be effective in reducing the incidence 3. Advanced age resulting in loss of tissue strength of urinary infections and the need for antibiotic with collagen degeneration treatments. The ingredient in cranberry juice that 4. Malnutrition prevents urinary infections is concentrated tannins, 5. Malignancy also known as proanthrocyanidins. 6. Chronic cough This has important implications for people with 7. Benign prostrate hyperplasia ostomies and continent diversions, especially 8. Steroid use urological ones. Recurrent urinary tract infections 9. Increased intra-abdominal pressure 5 D0"Kpvtcqrgtcvkxg"hcevqtu 1. Report any swelling or bulge around the stoma 1. Colonic stoma to your ostomy nurse. 2. Large opening made during surgery 2. Visually inspect the abdomen when sitting or 3. Stoma placed in surgical incision standing for bulges. 4. Stoma placed outside rectus muscle 3. Palpate abdomen when lying down and raising 5. Decreased blood flow to site head. 6. Other incision nearby I0"Vtgcvogpv"ogcuwtgu 7. Urgent ostomy surgery with larger initial stoma 1. Measure for support belt/abdominal binder. opening to accommodate obstructed colon 2. Change to flexible ostomy system—avoid firm 8. Intestinal distention/edema convexity. E0"Rquvqrgtcvkxg"hcevqtu 3. Pleat the skin barrier to increase flexibility. 1. Peristomal or wound infection 4. Try an oval barrier. 2. Urinary retention 5. Have your ostomy nurse mark a new stoma site 3. Postoperative abdominal distention/ascities if the stoma may be relocated during hernia 4. Radiation therapy repair surgery 5. Weight gain J0"Ejcpig"kttkicvkqp"vgejpkswg 6. Prolapsed stoma 1. Use a cone tip and not a catheter. 7. Excessive physical exertion 2. If the hernia is causing delayed, prolonged or 8. Colostomy with tendency of solid stool to incomplete evacuation of the irrigant, then stop enlarge the orifice over time irrigating. F0"U{orvqou 3. Use bulk laxatives or stool softeners to maintain 1. Pain or discomfort relieved when supine bowel function if patient has been dependent on 2. Bulge with straining, standing or after a large irrigation for a long time. meal 4. Try lactulose daily. 3. Size of stoma and contour of abdominal skin 5. Try altering positions, such as lying on side. varies with positions 6. Try “teasing the stoma” with a small, then a 4. Intermittent disruption of pouch seal, leakage and large, volume of irrigant. peristomal dermatitis K0"Tgncvkxg"kpfkecvkqpu"hqt"jgtpkc"tgrckt" 5. Patients with continent urinary diversions have 1. Difficulty in caring for the stoma urinary incontinence after an initial postop period 2. Difficulty maintaining the barrier’s seal of urinary control with no leakage. 3. Skin breakdown caused by leaks because barrier 6. Problems with colostomy irrigation. CT scans seal not secure recommended for patients with negative clinical 4. Original stoma site not satisfactory exams and unexplained persistent stoma-related 5. Difficulty in evacuation or abdominal symptoms. 6. Irrigating difficult or impossible to do G0"Rtgxgpvkxg"ogcuwtgu" satisfactorily 1. Maintain abdominal muscle tone. 7. Pain in hernia 2. Avoid excessive weight gain. 8. The bulging of the hernia is cosmetically 3. Avoid weight lifting and strenuous activity at unacceptable. least eight weeks after surgery. Then begin 9. Patient also has a prolapsed stoma, stricture(s) or activities very slowly and gradually. Never other indications for revision strain. 10. Nonsurgical therapy has failed. 4. Begin abdominal exercises and slowly increase L0"Rquvqrgtcvkxg"ocpcigogpv" their intensity. Isometric exercises build 1. Intra-abdominal pressure in the early tightness in the abdominal muscles better than postoperative period, before incorporating the crunches. Walking is a good isometric exercise material for the repair into surrounding tissues, is for the abdomen. higher than normal and may result in recurrent 5. Support belts may be worn as a preventive hernia formation if the opening in the repair measure in at-risk patients. material enlarges. H0"Uwtxgknncpeg"ogcuwtgu" 2. After about 2 weeks, the repair material is immobilized by the healing process, preventing 6 sliding or folding. After about 9 weeks, the stoma, then it may be better to switch to a two- biomaterial has been incorporated into the piece system, which has a small belt opening. surrounding tissue. Otherwise, a 1 inch stoma could herniate through 3. During the first two months of recuperation, a 4 inch belt opening. A stationary flange patients should avoid heavy lifting or other without a locking device is best for use with a strenuous activity. belt. 4. A prophylactic binder or hernia belt may help. Nu-Hope manufactures their original flat support, M0"Pqpqrgtcvkxg"ocpcigogpv<"Jgtpkc"dgnvu" a plastic sheet covered in fabric, and Nu-Form, a Nu-Hope Laboratories specializes in the manufacture plastic ring that allows more elastic to form around of belts to manage peristomal hernias without bulges like a girdle. The elastic choices include surgery. This will benefit those people who have a standard, which is solid cotton that features warmth, hernia but do not have any of the relative indications a softer inside and more stretch. The Nu-Hope Cool for hernia repair. For a proper fit with a Nu-Hope Comfort has an open weave for ventilation, uses hernia belt, do the following: synthetic threads, offers less stretch, but has a 1. Measure your girth horizontally, directly in line somewhat harsher surface. with your stoma. Special modifications that may be made include 2. For a hernia of 2 inches or less, you can make adding darts, contour folds, auxiliary belts, a double the measurement while standing. opening and a prolapse overbelt. The 9 inch belts 3. For hernias protruding more than 2 inches, are contoured, and belts up to 12 inches are measure while you are lying on your back. available. A horizontal seam—hinges—can be cut 4. If you fall between belt sizes, choose the smaller open to make the back of the belt narrower than the size for regular elastic belts and the larger size front. Bands of elastic will overlap in the back. This for the cool comfort elastic ones. improves the fit to the torso and adds lifting support 5. The 3 inch wide belts are available in lengths to the hernia. The front part of the belt will curve from 18 to 52 inches. The other belts are 26 to under the hernia and will allow room for leg 52 inches long. movement. 6. The belt need not be wide enough to cover the Dgnv"Crrnkecvkqp entire hernia, just two-thirds or more of the """""Apply your pouch while lying down for the hernia. Hernias are best measured while proper tension and hernia support. You should be standing. able to slide your hand between your body and the 7. The opening on a one-piece system should be belt. Hernia belts are for daytime activities. about 1/8 inch from the weld line. On a two- piece system, it should be just a bit larger than Vjkpiu"K"Ecppqv"Fq"Ukpeg"O{" the outside edge of the ring on the flange, adding

about half an inch to the flange size. You should Quvqo{"Uwtigt{ By Wanda Herdzina have the pouch on when you measure to make sure it will snap on with the belt in place. The I decided to write this page to demonstrate to new standard opening on all belts is 2 3/8 inches. people with ostomies that there are some things you 8. To measure the placement of the belt opening, cannot do with an ostomy. You will probably laugh measure from the bottom of the hernia to the because they are relatively insignificant when center of the stoma. compared to life. Most people having ostomy 9. Give Nu-Hope that measurement and the size of surgery are making a life and death decision. People the opening for the pouch and they will with ileostomies from Crohn's disease or ulcerative determine the final placement. colitis will have a better quality of life after the 10. The standard opening is centered on 3 to 6 inch surgery. Also, we have received comments from belts. On 6 to 9 inch to 9 belts, the opening is 1 people who tell us that they are actually doing some to 1 ½ inches from the bottom; therefore, you of the things listed here. The more we learn, the need to specify whether your stoma is on your more we find that an ostomy is not a deterrent to right side or your left. living the same life we would if we did not have an 11. A one-piece pouch with a cut-to-fit barrier needs ostomy. It is usually a benefit. a 4 inch opening in the belt. If one has a small 7 • The one thing that I really miss is sleeping on my • I cannot play on my illness anymore and say, stomach. Prior to my surgery, I slept on my "I'm too sick to go out." stomach all the time. However, with an ostomy, • I cannot blame my weight gain on prednisone it is just not easy. anymore. I just eat too much now! • You cannot take your toddler into the shower • A male cannot be subject to a digital prostrate with you. I tried that once and had the whole check each year. They must depend on other pouching system ripped from my body because tests like a PSA and the whole group of new that is the first thing she grabbed when she prostate tests. started to fall down. One word OUCH! • I cannot honestly say that my stoma has stopped • You cannot take your temperature rectally or use me from doing anything I want. I have met many rectal suppositories. wonderful people who I otherwise would not • You cannot run around for very long without a have met through my ostomy support group. pouch—if you have an ileostomy or urostomy. • You do not have as many reasons not to • You cannot use enteric-coated medications and participate in normal life. obtain full absorption if you have an ileostomy. • You do not feel nearly as bad. • You can no longer sleep in the nude (the pouch is • You have more control about when you go, and always attached). where. • By the way, there is no reason why you cannot • You have something to do every four hours or so. sleep almost in the nude with an ostomy. I do it Of course, I mean you have to urinate. What did all summer long and never had a problem. There you think? is no more flopping around than with PJs. Some • You do not have to fear being on a gridlocked put on a cummerbund to hold everything in freeway with no place to go to the washroom. place, but I do not. Of course, with that on you This is especially true for people who previously are not totally nude, but you are topless and had ulcerative colitis. bottomless, and you have got the middle covered. • I do not get 90% of my reading done in the • Do you wear a belt with your pouch? The clip bathroom anymore. end of the pouch may be stuffed under the belt Two things you cannot do with a urostomy: out of the way to eliminate flopping. Nude is • You cannot write your name in the snow. good for sleeping. Try those cute little tube tops • You cannot travel without an extra suitcase for the girls wear all summer, just a little lower on equipment changes. your body. Works for me. Fits the budget quite Hey, sorry to be so contrary, but I can hardly well. Hmm . . . one of those belts or covers that think of anything I cannot do with an ostomy! No, are cummerbund-style might make interesting really, I cannot. I have a colostomy, sleep on my sleepwear for a man, at least from this woman's belly, and do everything I did before I had the stoma. point of view! No, that is incorrect; I now do more than I used to. I • You cannot potty train a toddler! When my had a very narrow escape with cancer, stage three, grandson accompanied me and asked, "What's and so I decided that I had better not mess around that (the pouch)”? and what was I doing, my any longer. After my surgery, I started doing answer befuddled him. At two and a everything I ever wanted to do, right now! And so half, he is having a hard time understanding why should you. he poops from one end of his body, and I have this pouch attached to my body. He insists my pouching system is a boo-boo. • You cannot go without your shirt in public Believe in God, and He will help you; because the scar will show, unless you are a self- order your way aright, and trust in confident male. Him. • You cannot sleep all night without getting up to empty the pouch, unless you eat less at night.

• I can no longer be called "anal"! My husband calls me "stomal." 8 Gzrnckpkpi"Kv"vq"o{"Rggtu" butterfly vertebra in my lower back. I am fecally By Amy McElroy incontinent due to numerous past surgeries and VATER syndrome. In addition, I was born without Openness may be one of the keys to happiness; at an esophagus; surgeons were able to make one for least it has been for me. In late August, I decided to me.” let the world—or the one as seen through a “Fecal incontinence can happen when nerves are teenager’s eyes—know about a little big something damaged and the body cannot process nerve signals that affects my everyday life: my incontinence. fast enough to tell when you have to go. Well, not Over the course of my academic life, my mom always, but sometimes. I have a morning routine has explained it to my peers. Well, at least that is that helps me manage this, but it is not 100% how it worked until middle school. For the past two guaranteed to work every day. Some mornings I will years, I have kept it a big secret. Yet, when this year be coming in late or there may be a time when I have came around, it all changed. to leave the room. This is probably because I had a My teachers and the school administration all problem during my routine, but I assure you, I will knew I had special bathroom privileges to help me. be fine.” It was still awkward to leave class suddenly and then Now, most would have expected a negative have all my friends ask me if I was okay or where reaction to this, but here is where most are proven did I go when I came back to class. They were never wrong. As I said earlier, my mom has been rude, so it seemed to me that I should not be rude by explaining this since kindergarten. Never have I saying that it was none of their business. It upset me been teased or treated differently. I have always because the average teenager has no way of knowing been treated like just a regular chick and that has about kids like me that there was not a quick and helped me in ways not imaginable. easy way to answer their questions. Although logic would tell you the opposite, kids I became sick of lying to the people who cared are not bad, rude or cruel in these situations. It is about me. This year, I took it upon myself to walk when they are not in the know or do not understand around to each homeroom in my section of the that bitterness and rudeness come about. eighth grade and explain it to my peers. Here is The experience I had this year was uplifting. It what I said: gave me more confidence in myself. I learned that “Everyone in this room knows that being a no matter what, I should never be ashamed of my teenager is not always easy. Some of us spend incontinence. It is part of who I am. Now, I feel as endless hours in front of the mirror trying to figure if I could do anything. I am a peer mediator for out why that special person does not like us. Some Simmons Middle School, a peer tutor in math and I of us wish our parents would lighten up and stop hope to make it into the talent show. This year has treating us like babies.” so far proved to me that absolutely anything is “We want to do things we are not allowed to do possible if you put your mind to it and give others a and become angry with our parents for being parents. chance. It is tough being a teenager with just that simple list Editor’s note: We first met Amy a few years ago of things. Do you know someone who has asthma, at a UOA conference. Amy has a glowing or diabetes, or cerebral palsy? Have you ever met personality and if there is music and a dance floor, someone with cancer? If not, I will bet you have Amy will be there dancing the whole night. Amy read about someone with at least one of those wrote this article at the request of the Keokuk Iowa medical issues. What if you met someone who had Ostomy Support Group. none of the above issues, someone with a medical problem that is not very popularly known, but affects

a large number of people across the world?” K"Tgogodgt By Carol Laubach, editor of Austin, TX, Austi-Mate “Well, you just did. I was born with something called VATER syndrome. It stands for a group of In the beginning of each New Year, I get a bit birth defects that can happen together. VATER nostalgic and find myself pondering events of the stands for vertebra, anorectal, trachea, esophageal, past and bringing myself up to the present. In atresia and renal defects. I was born with problems January, after I had changed my pouching system, I with my vertebra. I have a hemi vertebra and

9 began to reflect on the past 50 years—as of March Vgp"Ncyu"qh"Eqnquvqo{"Ocpcigogpv 22—living as a person with an ostomy. By John Lafferty, Hamilton, ON There have been ups and downs, but you know, it has not been bad. The bottom line is that I am here. Ncy"3" Had it not been for the blessing of that surgery for Poop happens. my ulcerative colitis back in 1958, I doubt I would Ncy"4" still be here to enjoy my granddaughters, Brittany Poop happens constantly. Ann and Courtney Dawn. Ncy"5" It was not easy in the beginning, but after all, we The probability of your colostomy going off during can consider those almost dark ages compared to changing is directly proportional to the expense of now. An entire bathroom was required to set out all the carpet or bedspread beneath you. the various things necessary for a change. To Ncy"6" Once on the carpet or bedspread, no matter how change my pouching system took nearly 45 minutes solid it looks, try to pick it up with your bare hands. in the beginning, and I remember being all thumbs. Once it is on your hands, Law 5 becomes self- Products were not disposable so they had to be evident. cleaned, dried and powdered for the next change. Ncy"7" Everything I learned about the caring of this new Poop is the stickiest substance known. ileostomy, I learned the hard way. There were no Ncy"8" WOC nurses, no ostomy support groups, no The probability of getting toilet paper off the roll instructions except, “You are going to have to learn with one hand is inversely proportional to the to live with this.” “This” was a very long clear amount of poop on the other hand. plastic bag that hung almost to my knees and closed Ncy"9" with a rubber band wrapped repeatedly around the The probability of remembering to have toilet paper end. ready before emptying your pouch is inversely However, in retrospect, that dear old Bongort proportional to how far the toilet paper dispenser is pouch did beat a tuna can or a rubber glove. located behind and below you. Moreover, it sure did beat the agonies of colitis. Ncy":" Some years have passed now and fantastic The chance of obtaining a useful piece of toilet paper improvements have evolved, thanks to the ostomy from a large commercial roll is p=.000001. associations, technological advances in Ncy";" manufacturing ostomy products and dedicated Poop exhibits unique gravitational forces that allow nursing professionals. We have lightweight, odor- it to mysteriously attach to anything"within a meter. proof, disposable pouching systems that make life Anecdotal evidence suggests this is related to Law 5. much easier and more secure. If you doubt this, just Ncy"32" talk to one of us old timers about some of our No matter how much you chew, it is impossible to experiences of yesterday. adequately masticate corn. I do remember a particular night in a roadside rest stop near Kyle after a lovely vacation in Acapulco. That was one for the book of never-to-be-forgotten incidents, or is that “accidents”? If you are new at Walk worthy of the vocation this business of changing a pouching system and wonder if you will ever get the hang of it, rest wherewith you are called, with all assured, you will. It does get easier. Let us see now, lowliness and meekness, with long 49-year-old ostomy soon to be 50 years; I decided to suffering, forbearing one another in cipher a bit. I do believe I have changed my love, endeavoring to keep the unity of pouching system about 4,936 times. I should know the Spirit in the bond of peace. how to do this by now. Life is good!

10 Wpkvgf"Quvqo{"Cuuqekcvkqp"qh"Ejkeciq Confidential Membership Application

We invite you to join our association. You are especially welcome if you have an ostomy, are preparing for surgery, are a healthcare professional or have a loved one who has had surgery. We are a completely volunteer-operated ostomy support group. Our mission is to support, educate and advocate for people with ostomies.

Name ______Address______City______State______Zip______E-mail______Phone______Type of Ostomy Colostomy Ileostomy Urostomy Continent Procedure Date of surgery ______Age Group <21 22–36 37–50 51–65 66–80 80< Attend one of our general meetings. There are always friendly people to talk with you. You may even want to participate in our association’s leadership. We always need talented people to share in our good work. Membership is free (our funds come primarily through donations). Please mail this application to

Judy Svoboda, President 605 Chatham Circle, Algonquin, IL 60102 Or e-mail information to [email protected].

Ku"kv"QM"vq"Jcxg"vjg"Rqwejkpi"" U{uvgo"Uqcmkpi"YgvA" however, you may feel more secure if you wear an Forward by North Central Ostomy Outlook ostomy belt or put some waterproof tape around the The answer is yes. You can shower, bathe, swim edges of the skin barrier when you are in the water. or even go into a hot tub with your pouching Some people use paper tape and wipe the paper tape system. It is a good habit to empty the pouch before with a skin sealant to make it more waterproof. showering, bathing or other water activities. Even common duct tape works in a pinch. On the day you change your pouching system, Some people wear tight biking shorts to keep you may either leave it on or you can take the whole their pouch close to their body. That prevents the thing off and take your bath or shower, as long as pouch from floating. Gas filters do not work after you are not having much diarrhea or other they get wet. Protect the filter with waterproof tape. problems. It is difficult to change one’s pouching After bathing or swimming, you may use a towel or system when one has diarrhea, but it is not hairdryer on the coolest setting to dry the tape and impossible. cloth backing of the pouching system to prevent Clean water will not hurt your stoma or go inside skin irritation from wetness. Pouching systems are you. If the water pressure is strong, do not let it hit usually made out of plastic material, even though the stoma directly, it can damage it. Only use a they may feel like a natural material like cotton. gentle spray of water on your stoma. Bacteria-laced They can be easily dried very well with a towel. water can be absorbed by the stoma, so do not wash out a pouch in water that you would not drink. Check your pouching system before and after Character is about how you treat water activities. If you are in the water for a long people who can do nothing for you, time, the pouching system may start to loosen from when no one is looking. your skin. Pouching systems are waterproof;

11 PRESORTED FIRST CLASS Vjg"Pgy"Qwvnqqm U.S. POSTAGE PAID 736"Mpqz"Uv0 OAK BROOK IL PERMIT NO. 265 Yknogvvg."KN"822;3"

Return Service Requested"

Free parking in the adjacent garage

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We invite you to attend our general meetings. Relatives, friends, doctors, and nurses, as well as our members—any interested people—are invited and welcome. Our association has a team of trained volunteer listeners available to discuss the concerns of patients. Healthcare professionals and families are urged to use this free benefit. When you know of a patient who would like to talk to a person who has been there and done that, please call the visiting chairperson (see page 2).