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New Meeting Location December 2008 Last
Month’s Meeting Big
News! After over thirty years of
having our general meetings at We would like to offer a special thank you to Diane Campbell and Maureen Malinowski from Hollister, Inc. They visited us at our meeting and discussed some of the new changes happening in ostomy products. One of the finest retailers of ostomy supplies is changing their name. Mark Drug Home Health is joining Pinnacle Rehab Solutions to provide higher quality customer service over a more comprehensive product package. We are updating our mailing list. Please complete the form on the last page of this newsletter. 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. According to our new bylaws, we will have our Association elections in January. The slate of candidates includes: Jane Michnik, President Renard Narcaroti, Vice President Tim Traznik, Treasurer Joan Loyd, Director Rhoda Gordon, Director If you have a talent that you would like to share by participating in one of our many diverse committees, please let us know. Some invest as little as an hour a month. If we all pitch in, it makes the burden lighter for all of us. Happy Thanksgiving! Meeting Dates December 10, 2008—Our Gala Holiday Party will be a delicious catered meal with
mouth-watering desserts provided for by your board of directors. (See the article about our party.) We decided to invite all of you, our loyal
members, to share this meal with us in appreciation of your generous support
of our group. This will be the first
time we meet at our new meeting location, Sunrise of Park Ridge, January 21, 2009—A rap
session at our new location on a new date—the third Wednesday of the month
instead of the fourth . . . We will meet in the Party Room on the first
floor. Southwest Suburban 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 2008/2009 Meeting Dates
November
17—Little Company of January—Holiday
Party, call for information February
16—All other meeting to be held at March16 Little Company of April
20 May
18 Lower Level, June
16 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 . A new ostomy support group has formed at
They meet every other month on Thursdays
about 1:00 PM at 901 W. Kirchoff in the Diabetics Exercise Room on the first
floor. This building is located on the
hospital grounds at the west end. It
is easiest to enter from Next Meeting December 11 Our Gala 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 10, 2008 at 6:30 PM, at our new meeting location, Sunrise of Park Ridge, 1725 Ballard Road, Park Ridge (just three blocks north of Lutheran General Hospital), in the main dining room. 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. 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 capable help. We would like personally to wish each of you and your families a Happy Thanksgiving . . . we will see you at our party! A Letter to the Editor From a reader in I just wanted to contact you together with your organization and let you know that your web site (www.uoachicago.org) is quite definitely the best site we have read to obtain knowledge and information (on ostomy surgery). For this, my wife and I would like to both thank and congratulate you and those that gave input to your site to make it what it is. My wife has recently had her second surgery for the rectal removal procedure and is, understandably, uncertain of the healing and the thinking process that applies to someone having the same or similar surgery, the first surgery (colon removal) having been performed in March of this year (2008). Your web site has provided us with answers and a comfort (level) that we had not experienced with other web sites or even verbal information. We do have good people at the hospital where she had both surgeries performed, and they are knowledgeable and supportive. So, we have no complaints in that regard, but we do thank you for the information that you have formulated to make an excellent web site to refer to as we are and will be doing. By Pat Murphy, CWOCN Each of us can make life better—for ourselves and for those we meet who might someday have to face ostomy surgery for their own good. I would like to suggest two ways to do this. First, support your local ostomy association—not only financially but especially by offering your talents as a volunteer. New people come to each meeting and seeing a well-adjusted, positive and enthusiastic person with experience in ostomy issues is a wonderful inspiration. Your involvement keeps your local ostomy association strong while making it interesting and fun. Second, become aware of the image you project to others of a person with an ostomy. Be sure it is a positive one! Whether a person with an ostomy or not, everyone at some point in life chooses between life and death. You can deduce which one a person has chosen by observing his/her attitude and lifestyle. We advise and recommend that you choose life. That involves taking the responsibility of projecting a positive image to others. President Bush’s brother, Marvin, said in an article that his ostomy surgery had given him a “second chance” to live. What a marvelous thing to be able to have—a second chance! To be able to live, enjoy family, friends, work and play, is the greatest joy. Marvin Bush wrote how grateful he was to have a second chance to live. We should all feel this way, because we have chosen life. Sometimes, though, we can stumble on a negative track and focus on our problems instead of our joys. We lose our humility, which is gratitude. Look at yourself today. Have you been focusing on your complaints and problems? What kind of image do you project to others? Here is a simple plan to help us all become more positive and project a better image: Watch yourself for a few days; see if negative thoughts and feelings keep repeating. Replace negative thoughts with thankful thoughts. You cannot just remove negative thoughts; that leaves an empty spot, and they will just come back. You must replace negative images with positive ones or else it just will not work. You must put positive thoughts in their place. Express your thankfulness to those around you. Be optimistic in what you say, instead of saying, “I am so busy, I do not know what to do,” for example, you could say, “I have so many interesting challenges I do not know which one to take on first.” Make thankfulness a habit. If you do, you will project a wonderful, powerful, positive, attractive image to all you meet. This will help others to choose life—or an ostomy, if need be—in their future. Too Much of
a Good Thing By Wanda Herdzina, WOC nurse Do you need an hour and a half to change your pouching system? Does your stock of supplies resemble the storefront of the local pharmacy? Do you need a road map to remember what product goes on first, second, etc.? If so, then you may be the victim of the “too much of a good thing” syndrome. Occasionally, an individual will come to our stoma clinic carrying a large sack with a vast array of skin care products. He/she explains, “All these items are needed in order for me to apply my pouching system.” Unfortunately, the reason he/she usually needs assistance from a WOC nurse is due to an issue with the adhesion of the skin barrier—usually due to scars, skin folds or weight changes, skin irritation or skin breakdown. One particular man who comes to mind was utilizing a special skin cleaner and cream, two types of skin cement, a double-faced tape disc, a paste and a popular skin barrier before the pouch was applied. He had started out with a simple pouching system right after surgery. However, in his quest to achieve what he felt should be a seven-day wearing time, he had been adding product after product. Besides the many items he was now using, he had what he described as a “closet full of products at home”. As a side note, it is recommended by the society of WOCN nurses that a skin barrier be replaced at least twice a week. After checking his abdomen, it became obvious that what he needed was a product change in the convexity of his barrier and not the addition of another product. He also needed a more realistic view of wearing time for his particular situation. Practically speaking, not everyone may
be able to achieve a seven-day, leak-free wearing time with no skin irritations. Nor is this a prudent goal. It is much better to anticipate leakage and
establish a regular changing time prior to this. There are pouching systems for people with
colostomies designed to be changed in about 30 seconds, whenever full—even
several times a day. These are
generally one-piece closed pouches that are disposed of after a single use. Many people in Keep it simple. Do not use extra cement, skin-care products or whatever unless medically necessary. Usually, extra products actually interfere with skin barrier adhesion or create skin problems—especially with the new extended wear systems. And as far as washing your peristomal skin, plain water is still the best cleaning agent. Do not continue to use therapeutic products after a problem has been solved. As an example: A steroidal cream and an anti-fungal micro-granulated powder should not be used routinely when changing the skin barrier. These products are prescribed for particular skin problems. A steroidal cream is usually recommended for its anti-inflammatory effects, chronic skin itching and systematic relief of the discomfort associated with skin irritation. However, continued and prolonged use of steroidal creams after the problem is resolved may lead to thinning of the outer layer of skin. This will lead to a greater susceptibility to skin irritations. Also, stop using an anti-fungal powder when the fungus—also called a yeast infection or candida—is gone. Selected
topics from our ostomy association meetings It was repeated at meetings over and over again that when you have concerns about your pouching system performing to your satisfaction, “Don’t Suffer in Silence”. There is a plethora of resources available to people who seek them out. Not only are there ostomy nurses, but there are also manufacturers, your local ostomy association, UOAA conventions as well as your personal physician. If you are having problems with your pouching system that you feel lessen your quality-of-life, there are viable solutions available to you. Our local ostomy association is evolving as an organization. Our original primary mission was to be all the things you think of when we say we are a “support group”. We are becoming an education group. The biggest reason for people with ostomies going to the emergency room during a vacation is dehydration. The signs of dehydration very often imitate those of a blockage; i.e., abdominal pain, nausea, dizziness. All surgical operations have complications. Some may be very small, such as, requiring the patient to increase his/her circulation by walking for 20 minutes at a time, six periods a day. If one lives long enough, all people with an ostomy will experience a peristomal hernia. Of course, you may have to live to 120 years old to reach this spot. In addition, if one has an ileostomy at age 30, stays in good shape, and lives a prudent life style, the probability of having a peristomal hernia at age 70 is only 20%. People with colostomies have a much higher occurrence of peristomal herniation. One main reason is that a larger hole is made in the abdomen for a colostomy, which means the abdominal wall is compromised more than with a urostomy or ileostomy, which only uses the much smaller ileum to penetrate the wall around your stomach. “No doctor anywhere . . . no matter how
brilliant . . . has all the right answers”, Dr. David Beck, If you are over 65, you should regularly see a CWOCN for check-ups and resolution of ostomy issues. Medicare pays for this benefit. If you are under 65, check to see the benefits your health policy provides. Different brands of pouches will not fit on any barrier except the one they are manufactured to fit. A ConvaTec barrier will not securely tighten to a Hollister pouch. They may seem to fit, but upon close examination, you will notice that the ridges and thickness of the plastics are different. Some of us that do mix brands do so holding them together with belts and cements. This may be an acceptable method for you. Just be aware that unless you use these extraordinary methods, the pouch will fall off. There have been over 2000 small intestine transplants performed. There are no plans anywhere to develop large intestine transplants because we can live quite well without a large intestine. Sepra Film is a product that surgeons are using to use during abdominal surgery to wrap around the intestines to reduce the incidence of adhesions. Probiotics are seen as being the best hope for people who have continent fecal diversions to avoid inflammatory outbursts like pouchitis. There are more bacteria in a small intestine without a colon attached than there are with one. There seems to be more of a need for probiotics for people without a colon. The reason seems to be the need to reinforce the flora in the small intestine because of the slower transit time that develops because of the change in the digestive process. There is currently research and trials being made on creative ways to provide options for people with diversionary surgery. Some of these include: · An automatic irrigation system for people with colostomies that would reduce the time it takes to irrigate from 45 minutes or longer to about 15 minutes total. · Stoma plugs are in experimentation to help make ileostomies continent. These things still do not work at all, but research dollars are being used to experiment with this option. Hollister, Inc. has told us that they have stopped work with stoma plugs, but ConvaTec has poured money into research with no success. · There has been some success with artificial sphincters. They work somewhat on people with fecal incontinence that have strong, healthy sphincter muscles. There are also experiments on pigs where the entire anal canal is removed, just like on us with permanent ostomies, and an artificial sphincter is used to achieve continence. There has been minor success in this area. The artificial sphincter is really a very simple device . . . a steel band that wraps around the sphincter or intestine. A real sphincter is tough. The device allows it to open and close at will. The problem with using it just on intestine is that it wears through the tissue of the intestine with repeated opening and closing. ·
The Enteric-Coated Pills Question UOA Discussion Board Q I had my ileostomy surgery in 1979 when
I was 51 years old with very few problems these past 25 years. However, I cannot seem to communicate to my
doctors in A Show them this information which was translated from the British National Formulary—the guide for British doctors on prescribing and considered a world authority. 1.8 Stoma
care Prescribing medications for patients with a stoma calls for special care. The following is a brief account of some of the main points to be borne in mind: Enteric-coated and modified-release preparations are unsuitable, particularly in patients with ileostomies, as there may not be sufficient release of the active ingredient. Laxatives, enemas and washouts should not be prescribed for patients with ileostomies as they may cause rapid and severe dehydration. Colostomy patients may suffer from constipation and whenever possible should be treated by increasing fluid intake or dietary fiber. Bulk-forming drugs should be tried. If they are insufficient, as small a dose as possible of sienna should be used. Anti-diarrhea drugs such as loperimide, codeine phosphate, or co-phenotype (dioxalate with atropine) are effective. Bulk-forming drugs may be tried but it is often difficult to adjust the dose appropriately. Antibacterials should not be given for an episode of acute diarrhea. Antacids have a tendency for diarrhea if made from magnesium salts. In addition, constipation from aluminum salts may be increased in these patients. Diuretics should be used with caution in patients with ileostomies as they may become excessively dehydrated and potassium depletion may easily occur. It is usually advisable to use a potassium-sparing diuretic. Digoxin used in patients with a stoma make them particularly susceptible to Hypokalemia, if on digoxin therapy and potassium supplements, a potassium-sparing diuretic may be advisable. Potassium supplements in liquid formulations are preferred to modified-release formulations. Analgesics such as opioid analgesics may cause troublesome constipation in colostomy patients. When a non-opioid analgesic is required, paracetamol is usually suitable but anti-inflammatory analgesics may cause gastric irritation and bleeding. Iron preparations may cause loose stools and sore skin in these patients. If this is troublesome and if iron is definitely indicated, an intramuscular iron preparation should be used. Modified-release preparations should be avoided for the reasons given above. Patients are usually given advice about the use of cleansing agents, protective creams, lotions, deodorants, or sealants while in the hospital, either by the surgeon or by an ostomy nurse. Voluntary organizations can offer help and support to patients with a stoma. By Terry Gallagher, When we had our ileostomy surgery, our colon was removed. In a normal person; i.e., a person with a full, working colon, the colon is responsible for absorbing much of the water we drink and that is contained in our food. In addition, electrolytes such as sodium and potassium, essential to maintaining good health, are absorbed there. Removal or disconnection of the colon immediately causes an initial problem because of the removal of the ileo-cecal valve. This valve is between the ileum or small intestine and the colon where the appendix is attached. Its purpose is to dispense the contents of the ileum into the colon with a measured response to maximize food absorption. When we lose this valve, food and water pass through our digestive system without a regulator, for a short time anyway. The body does adjust quite well to our new plumbing, and soon our transit rate slows to a third or a quarter of that of people with normal colons to help make up for this loss. The ileum begins to absorb more water to compensate for the loss of the colon but still absorbs much less than a normal colon usually would. Effluent from the ileum normally has about 30% of the original water taken into the body remaining, while normal stool from a colon has about 10% remaining . . . quite a difference. In addition, we lose ten times as much sodium and potassium as someone with a colon. Because of all this, anything that upsets this balance in our bodies has a faster and more dramatic effect. A typical example is gastroenteritis. A normal person with this infection may be sick and have diarrhea for a couple of days, whereas we could end up in the hospital with exactly the same symptoms as these because of the loss of fluids and electrolytes. This may apply to other problems that upset the digestive system’s balance. When these occur, a normal person may experience nausea, vomiting, fever, abdominal cramps, bloating, bloody diarrhea and signs of dehydration—including the veins on the back of the hands and elsewhere becoming invisible. People with an ileostomy may experience these signs differently. When I had flu, my ileostomy produced enough output to fill my pouch in just a short time. I felt nauseous and developed abdominal discomfort. I rapidly began to experience the symptoms of dehydration, which include a dry mouth, decreased or virtually non-existent urine output, heart irregularities and dry skin. In my case, I could see my urine output had ceased as I have a urostomy as well. This is a medical emergency! In less than a 15-minute trip to the hospital by ambulance, the driver remarked that I had visibly deteriorated during the trip, even with a saline IV being administered. If hospitalized for dehydration, you may expect IV solutions to be given. The fluid given will be saline, potassium, or potassium and glucose to replace those essential electrolytes lost through diarrhea. Expect an EKG to check for heart problems, bloods to be taken, and stool and urine samples, to check for infection, and chest and abdominal X-rays. Dehydration is a serious medical emergency that can lead to shock, unconsciousness and death if not treated soon enough. Delaying treatment can also lead to kidney damage, which may be permanent, requiring life long dialysis or a transplant. If you become ill with diarrhea, have vomiting and fever that persist, find yourself with a pouch continuously filling with fluid, and have little or no urine output, seek emergency treatment immediately. Normal people may sneer that we are making a lot of fuss for a simple “tummy bug” — we are not! It is much more serious for us than for people with a normal colon. Nurse Notes–History Tidbits By Darlene Fenner, CWOCN, North Always being a history lover, I came across some very interesting tidbits about ostomy history that I thought you all might find interesting. Spontaneous stomas have occurred for
centuries. The first mention of an ostomy-pouching
device was not until 1795. In In 1824, Martland of Blackburn, England created an ostomy device from a self-adjusting truss containing a tin box in the center for the collection of feces. Advances in stoma surgery were not accompanied by advances in stoma management. As late as the early 20th century, patients were using Model-T inner tubes, tuna fish cans and bread bags with talcum powder, cornstarch or aluminum gel to prevent leakage. Vanilla and peppermint extracts, mouthwash, perfume, parsley and bicarbonate of soda were used to diminish odors. Despite the fact that colostomy
irrigation had been reported in the early 1800s, it did not gain popularity
until the 1920s. In 1924, Dudley
Smith, a With this device, patients were able to irrigate once every 24 hours; between irrigations, they wore a “simple belt of plastic webbing” with several pieces of absorbent paper. The John R. Greer Company also developed a device for people who did not wish to irrigate. It consisted of a canvas bag lined with several thicknesses of toilet paper and a single sheet of oiled paper attached to a stoma ring in a belt. In 1944, Henry Koenig of Another person who had an ostomy, Murle Perry, urged by his surgeon developed a line of stoma management devices. The Perry Model 51, which was introduced in 1951, consisted of a plastic pouch with absorbent papers combined with a close-fitting rubber gasket designed to keep irritating stoma output away from the surrounding skin. Despite these advances, skin irritation continued to be a significant problem, particularly for ileostomy patients. Just as had happened with Alexander Graham Bell and the telephone many years earlier, an accidental discovery led to a great advance in stoma surgery. “In 1952, Rupert Turnbull was cleaning out the desk of his former chief, Tom Jones, and accidentally knocked over a small canister of Jones’ dental powder into spilled coffee on the desk. The karaya powder immediately absorbed the coffee and stuck to Turnbull’s wet hand. He thought the powder might also absorb ileostomy effluent and protect the skin.” Thus, the use of karaya was introduced. Karaya powders, and then later skin barriers, were major advances in peristomal skin care. Over the past 200 years, intestinal stomas have developed from “last chance” lifesaving efforts to well-planned, technically refined artificial anuses. Colostomies can be “trained” to function once every 24 to 48 hours. Ileostomies and urostomies can be made “continent” if the patient so desires. Although stomas formerly were foul smelling and offensive, today they are rarely noticeable, even to the patient’s closest contacts. The miracles of medical science and the ingenuity of creative people have given a brighter future to the lives of people with ostomies. Some Basic Ostomy Hints Via the Internet · Do not behave as if having an ostomy makes you less of a person or some freak of nature. There are lots of us and most of us are glad to be alive. · Build a support system of people to answer questions when you have a problem. Consider our ostomy nurses and your officers who are listed in this newsletter. · Do not play the dangerous game of making your appliance fail by putting off a change. There are not any prizes given for the longest wear time except accidents. · Do not wait until you see the bottom of your supply box before ordering more. Always expect delays in shipping when calculating delivery times—although most suppliers can deliver ostomy supplies to you in a day or two. · Zip-lock sandwich bags are useful and odor-proof for disposal of used ostomy pouches. · Do not get hung up on odors. There are some great sprays and some internal deodorants. Remember, everybody creates some odor in the bathroom. Do not feel you are an exception. · Hydration and electrolyte balance is of vital importance. Be sure to drink enough fluids to maintain good hydration, especially people with ileostomies. · Read and learn all you can about ostomies. You will not only serve yourself, but you never know when you may find an opportunity to educate someone about the life-saving surgery that has extended so many of our lives. · Learn to be matter of fact about your ostomy surgery and never embarrassed. Few folks get out of this life without some medical problems and unpleasant situations with which to cope. You may be amazed at how people will admire your adaptability and courage. · In the beginning after surgery, almost everyone experiences some depression. If you fit into this category, you are certainly not alone. However, it need not be a lasting condition. Try something as simple as walking . . . long walks with a friend. If the depression seems to linger, do not be afraid or ashamed to seek professional help. There is help out there! · The bottom line is . . . we are alive! If we lived just a few years ago, or in another country, we might not be. Medicine and techniques today have given us an opportunity to experience this second chance. It is certainly an opportunity worth accepting and exploring. The most important part of you as a human being has not changed. Adapted from ReRoute, The stoma will shrink in the first few months after surgery and should be re-measured as needed during that time. The skin barrier opening should then be made smaller to fit the new smaller sized stoma. You will find a measuring device and instructions in every box of pouches. If you gain or lose weight, you may also need to recheck equipment fit. If you develop itching or a rash or become sensitive to your adhesive, talk to your doctor or ostomy nurse to help you clear up your skin irritation problem. Individual body chemistry differs, so do manufacturer's formulas for skin barrier adhesives. If your adhesive is not giving you a good seal, ask for help in finding one that does. A poor seal may let urine leak onto the skin. If your pouch begins to leak, change it immediately. Some people with urostomies have a high incidence of complications, some occurring after 10 to 12 years. Most complications are gradual. The most common, by far, is caused by an ill-fitting pouching system. 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 opening that fits up to the stoma to prevent this and other long-term complications. The extended wear barriers made today are designed especially for people with urostomies actually to gently touch the stoma, turtleneck around it thus providing an excellent seal. Note that Cymed Corp. specializes in hard to manage urostomies. Their Microskin product precludes leaks before the start. If you have an issue with a pouching system that leaks, you owe it to yourself to contact Cymed Corp. and ask for a free sample of their Microskin Pouching System. It really does work very well. 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 the 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 or sand-like deposits on or around the stoma are another complication. At each pouch change, check your stoma for color shape and function. Watch for any stoma problems such as swelling, retraction, stenosis—narrowing of the outlet, prolapse—displacement of the stoma. Any stomal complications should be reported to your ostomy nurse. Abdominal Changes
to an Ostomy By Arthur Clarke, CWOCN When you had your pouching surgery, the surgeon was allowed—according to your personal physiology—only so much moveable bowel in the construction of your stoma. Once that piece of bowel was pulled through your abdominal wall, it was tacked down on the inside of the abdominal wall and on the outside of the skin. That length will remain constant throughout your life, therefore, if the wall of your abdomen thickens; i.e., with fatty tissue, the length of the bowel used for your stoma will not be changed to accommodate your increased girth. One result—caused from the fixed length of bowel which forms the stoma as the abdominal wall thickens—is that when you sit or stand, the changed position causes the abdominal wall to shift forward and down. The stoma segment prevents the peristomal skin from shifting as much as the rest of the abdomen. The limited movement results in a “skin well” around the stoma when you sit or stand. Skin adjacent to the stoma becomes quite mobile being pulled down and then flattened by your changing positions. This may cause problems with your pouching system adhering well or springing leaks. Two solutions to this work quite well. One, adjust your weight to return your abdomen to its shape at surgery. This would include exercises to firm your body as well. Another common solution is to change to a convex pouching system. I have found that a skin barrier with a convex surface, which “pushes” the skin back, and holds it stable, relative to the stoma, works much better than the highly flexible flat barriers. The moral of the story is that if you have abdominal changes due to weight gain, you have viable choices with your pouching system to continue a high quality-of-life. You just need to implement these changes. Your ostomy nurse can help you with these issues. Lazarus Ephraim, a member of a local ostomy association, did a survey during which he asked if people knew what an ostomy or an ostomate is. Here are some of the answers he received to this question. "I think it has to do with people who have trouble with their feet." "I don't know what it is, but I understand those people don't have to go to the toilet. They just do it anywhere, put it in a bag and throw it away." "I think the former pope was one for a while when he got shot." "My aunt has one, but we don't talk about it." "They are members of some political party." "These are people who have had some kind of operation and they wear a bag under there clothes. They take it off when they have to go to a party" "I saw one of them on television recently, and she was all happy about something." "I wouldn't want to be one, I heard it’s bad." "My neighbor is one, I think. She goes to a party at the hospital every month. She meets many people there like her and they drink cranberry juice." "I think it has something to do with farming. I heard two of them talking about irrigation." Ephraim feels that we have quite a bit of education to do in the communities—and he is correct! Are You Up To Date With Your Ostomy? By Fred Shulak As people
with ostomies, if we are not having any difficulty with our ostomy, it is
very easy to become complacent and set in our ways. As a person who has had an ostomy for many
decades, I thought I knew all there was to know about my ostomy and how to
care for it. I was not having any
problems and everything was going well. Consequently, I did not bother to continue
attending meetings. One day I started
to develop problems with my pouching system and was not sure where to turn
for help. I did the most logical thing
that I could think . . . I called my nephew who also has an ostomy. He was able to give me a few suggestions,
one of which was to go back to my local ostomy association meetings and seek
the help of the other people with ostomies and an ostomy nurse. When I had
my surgery in 1957, I was given a rubber pouch. It needed to be changed on a daily basis. This was an inconvenience to be sure, but much
better than “living” with ulcerative colitis. The pouch being rubber was not good when it
came to containing odors and the deodorants available at the time were not
very effective. I decided to
take my nephews advice and was glad I did. I found out from the members of my ostomy
group and the WOC nurses—they were known as ET’s at that time—that there were
literally dozens of choices available to me in the way of ostomy pouches and
systems. The new pouches were
lightweight, odor proof and more comfortable than the pouch I had been using. I found a pouching system that I liked and
it stayed on far longer than my original system. I was able to wear a pouch for five days
without having to change and it was wonderful. If you are
having a concern with your ostomy or are not aware of the latest developments
in pouches and related supplies, I urge you to contact your local ostomy association,
attend meetings and talk to the WOC nurses that attend most every meeting. These sources have all of the information
you could want to bring you up to date with the management of your ostomy. Even if you are not having problems with
your ostomy, please touch base with the sources available to you. There is so much new information for a
person with an ostomy that you will undoubtedly benefit from learning about
the new developments. Another
excellent source of information is The Phoenix magazine, the
official publication of the UOAA. It
is full of new and useful information and I consider it to be the best and
most reliable source of data for people with ostomies. When you subscribe to The Phoenix,
not only will you be doing yourself a favor, but you will also be helping the
UOAA as they receive half of the subscription price from the magazine. You can subscribe by issuing your check to The
Phoenix for $25.00 and mailing it to Friends of Ostomates Worldwide Excerpted in part from the FOW
newsletter Sometimes we
wonder why all of us who are involved with FOW sacrifice so much personal
time, energy and money to help some sick person totally unknown to us? While some of us watched our FOW video
recently, a story was remembered of a story told by a Catholic nun at a
shelter for homeless children, it says it well: On the street, I saw a
small girl cold and shivering in a thin dress, With little hope of a
decent meal. I became angry and said to
God: “God, why did You permit
this? Why don’t You do something
about it?” For a while, God said
nothing. That night he whispered to
me, I certainly did Do something about it I made you.
It is greatly appreciated if you are one of the “you’s”
who has been supporting FOW either by donating supplies, funds or
talent. I Am a Mom By Lori Turrell, I am a mom, and I am going to worry. That is just the way it is. Currently, my concerns revolve around what the long-term side effects are of the drugs used to treat ulcerative colitis. My son, Adam, had suffered with ulcerative colitis for several years before his surgeries to remove his colon and create a J-pouch. In that respect, he is doing great. What is not so great is the ongoing hip pain he has been experiencing on and off for the last year and a half. In two instances, the pain has been so unbearable we have made emergency room visits for pain relief. Currently, physicians have suggested that the possible cause of this pain is from long-term use of prednisone. It is documented that steroid use can cause aseptic necrosis of the hip, which is a deterioration of sorts. The physical therapist’s theory is that Adam’s core muscles are still weakened from his multiple abdominal surgeries, and it has affected his hips. He will continue with PT for now, and if there is no significant improvement, he will head to the orthopedic clinic. It makes me ask, what kind of long-term effects are we looking at from the use of Purinethol, methotrexate, Asacol and Remicade. While all of these can be excellent drugs in the treatment of ulcerative colitis, is there a price some patients will have to pay after using them? Prednisone is not totally out of our life. Adam and his dad both use it for asthma flare-ups. It can be such a wonder drug, but at the same time, an evil one. Adam seems unconcerned as he goes about his life as a college student. As usual, he meets any obstacles head on. “It is what it is.” He does what he needs to do and moves forward. I wish I could be more like that. As for me, I will keep helping my son in any way I can. I know that soon he will not need my support in dealing with his medical issues, but I will always be his mom; I am entitled to worry. |