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April 2008 Last Month’s Meeting The meeting was called to order at 7:30 PM on March 26. Mary Rome, Jennifer Ano and Barb Kraus, Consumer Specialists from Hollister Inc. informed us that pouches sporting the new and improved 300AF filters are now available. One of our members, Bonnie Bourquin, is very pleased with the product. She has been using it for the last month. Hollister is also seeking interested parties to participate in their new Internet meeting place, the “Secure Start Community”. At our May meeting, Hedy Holleran from Hollister will show a live demonstration of the new www.c3life.com site especially built for people with ostomies to share information, stories or whatever with one another. A British company has come out with undergarments for people with ostomies. Samples were available for evaluation at the meeting. Andrew Penesis celebrated the two-year anniversary of his urostomy, while for Danah Melcher this was the 16th Stomaversary since her ileostomy. The 50/50 was won by Hollister who generously returned it to the OAGC while Linda Narcaroti won the consolation prize. Maria De Ocampo, from the One of the new attendees will probably be having urostomy surgery in the future. To assist him make a decision, Maria pointed out that each person has to decide what would suit him/her best based upon his/her age, activity level, life style, etc. Maria clarified that Medicare covers 20 drainable and 60 disposable pouches and 20 skin barriers a month. Two problem situations could not be resolved although they were discussed extensively. The first was that of a urostomy that leaked a small amount of fluid on the skin immediately adjacent to the stoma. Numerous suggestions were forthcoming from our members, but they had all been tried and failed. The second unresolved issue was that of “Jake” an ileostomy that hibernates every winter unless warmed. Next month is the Anniversary Meeting of our Association. Tim Traznik will be moderating a panel discussion. It should be an extremely informative and entertaining evening. In addition, if anyone out there has answers for the sneaky urostomy or the hibernating ileostomy, please share them with the membership at the next meeting. You would also be able to check out undergarments from across the “pond” and the new Hollister filter. The Submitted by J Radhakrishnan It's winter in Oh, how I love You take a breath
of winter Yes, the weather
here is wonderful
2008
Meeting Dates April 23—Anniversary Meeting / Tim Traznik leads an Ostomy Panel Discussion May 28—J. Radhakrishnan presents “Straddling the Fence”; plus Hedy Holleran from Hollister, Inc. demonstrates www.c3life.com June 25—Bernie Auf Dem Grabem, WOCN July 23—Connie Kelly, WOCN August 27—Marina Makovetskaia, WOCN (MRSA infections around the stoma) September 24—Madelene Grimm, WOCN October 22— December 10 ( 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 April 21 May 19 June 16 Little Company
of Hunter House Publishers has a book that will be interesting for everyone with an ostomy. Positive Options for Living with Your Ostomy: Self-Help and Treatment, by Dr. Craig A. White is available in paperback for $14.95 at leading retailers.
FOW-USA plans to be open every Monday, Wednesday and Friday from 9:00 AM until noon until April—that is this month. We may close permanently soon afterwards. We are in urgent need for volunteers to pack new ostomy supplies that will be sent to poorest countries worldwide. There is a desperate need, and the warehouse is busting out at the seams with donations to package and send out. Please help. We need at least two dozen new volunteers to handle our needs. This is our last request. The warehouse phone number is 847-375-0169. Please phone to be sure that someone will be there. 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 . CCFA Symposium—2008 By
Renard Narcaroti For the ninth year in a row, we
participated March 29 in the CCFA Educational Symposium held in Our active participation was managed through the efforts of Judy Svoboda and me. Both of us have an ileostomy. Judy and I introduce ourselves as people with an ostomy soon after we start talking to someone making an inquiry about ostomy surgery; or else visitors to our booth think we are highly paid representatives of some huge organization servicing those unseen and pathetic wretches whose lives are ruined because of the need to have ostomy surgery. I think it would serve us well if I let you know of two of the stories relayed to us while working there. As a preamble, Judy reminded us that although we were smiling, happy and healthy, people there observing our attitude did not know how to take us. You see, they are usually very sick, scared to death about the possibility of having to live with an ostomy, yet, here we are excited about life. They think, “How can they be so cavalier about an ostomy, when I am so scared about it? Don’t they know how serious this is for me?” Of course, we know how serious it is. However, we have the advantage of seeing past the fear of what it is like to live with an ostomy because we know firsthand that will we actually be able to leave our house . . .. This ostomy business is old news to us, we have too many other interesting things that we are involved with in our lives but they are just beginning the journey. They cannot yet perceive the great opportunity from the pain of disease ostomy surgery will provide them. We are there to help communicate the potential future it is possible for many of them to possess. We are not there to sell people on ostomy surgery. We hope that someday nobody will ever need surgery again. Not all the stories are good. One woman, in her early 20s’ who came with her father, had talked to us last year during a flare of uc and did go on to have j-pouch surgery. However, she is very unhappy with the results. You see, she still is going to the toilet 20 times a day and has limited control because of chronic pouchitis. All this was supposed to be eliminated after her surgery. Unfortunately, many people choosing j-pouch surgery have poorer quality-of-life than those with an end ileostomy. A j-pouch is managed differently than a colon and sphincter. It is like having pudding in a milk bottle, holding it upside-down and trying to let the contents fall out. Sometimes it does not work so well. An active man in his 50s’ who has been slowing down his activities due to uc boldly came to talk to us. His main concern is that he can return to his active sports and sex life. The medical therapy he undergoes is providing unsatisfactory performance. His constant bleeding due to uc is leading to anemia, and of course, a man needs a good blood flow to perform sexually. We told him stories about people in our group who had returned to very active lives after ostomy surgery. Although we never offer medical advice, we do offer hope of a new life, if medical therapy does not produce tangible results. Dozens of people came to us showing off that they have had ostomy surgery and felt better than ever. Scientific studies have shown that people with ileostomies due to inflammatory bowel disease have better quality-of-lives than regular healthy people do in the general population! Many who come to the Symposium, live in areas over an hour away from the nearest local ostomy association. They seem to look forward to seeing us each year as a way to keep in contact with the ostomy community. We are testing the hypothesis based on our experiences that in fact people with ostomies are actually better looking than people in general are. We were able to experience first-hand
the benefits people receive from our local ostomy association. In addition, we leave there with the
gratitude of having all that pain and suffering behind us. We are grateful for our new life after
ostomy surgery. We hope you are too. A
New Wrinkle on Stomas Adapted
from the article by Bruce K. Dixon in The American College of Surgeons, Surgery
News 4:3; 14, March 2008 A
six-year old girl had to change her colostomy pouching system often during
the day because she could not maintain an effective seal for any length of
time. Her mother noted that the skin
barrier came loose when sweat collected under it. Dr. Saadia Lakhany Raza, a dermatologist at
Botulinum toxin A has been approved for treatment of hyperhidrosis (excessive sweating) since 1989; however, this is the first instance of its use to control normal perspiration. For hyperhidrosis, injections have to be repeated every six months and that will probably be the case for this child too. Submitted
by: J Radhakrishnan
Traveling
with an Ostomy
Having a stoma should not prevent you from traveling. However, pay attention to the following
points to avoid any problems ·
Take enough supplies with you! You might even spread it into two pieces of
luggage. The most required material
for the first few days should always be in your hand baggage. ·
Notice that warm temperature and sports
reduce the wearing time of your pouching system. So take more equipment with you as it may
be necessary. This means double,
triple or more the supplies you ordinarily use. ·
Write down the precise product codes with
their associated product number of the ostomy supplies you use. It may be necessary for you to make a
purchase while away from home. Be
prepared just in case you do not have access to resources where you will be
traveling. Sometimes other markings
are used in other countries for your habitual material. ·
Obtain the address and phone number where
your supplies are may be purchased if traveling in a foreign country. ·
Be careful with unusual food; try small
pieces first to see how you react to it.
You must purchase Barbara Kupfer's book, Yes We Can! It is one of the best current resources
available for advice on traveling with an ostomy and tips for everyday
living. The intent of this book is to
serve as a useful and practical guide for the person who has as ostomy and
wishes to travel.
Whether you have recently had ostomy surgery, or are a veteran;
whether a seasoned traveler, or a new adventurer, whether traveling across
the state, or out of the country, the pages of Yes We Can! are filled with valuable tips for traveling.
Barbara Kupfer is a world-traveled person who has never let her ostomy
slow her down. Traveling has always
been part of her life, and when surgery for colon cancer was performed, she
was determined to continue to see the world.
She had many questions about traveling with an ostomy, and although
the ostomy associations and the medical community were helpful, she felt
there was a need for a definitive resource.
She realized that if she was asking questions, then other people were
also looking for answers. Her book
offers us the opportunity to read the stories of others who travel, as well
as the best advice yet, when preparing for travel.
Forward By ReRoute, Many pathological conditions can necessitate the need for some type of bowel or urinary diversion known as an ostomy. Most people with ostomies manage their ostomy fairly well. However, sometimes complications may occur. We have made a list of them. However, note well that these are not all common occurrences. Necrosis—A dark, black stoma caused by an inadequate blood supply. The stoma is dying. This might be caused by excessive tension on the mesentery, too thick of an abdominal wall for the intestines to pass through, too tight a suture line or interruption of blood flow—a clot. Management is based on the extent of necrosis. Superficially, continual monitoring may just be needed. It may be resolved by managing it with a modified pouching system that allows for better blood flow. If it is below the fascia level, it often requires stoma reconstruction. Detachment—The stoma separates completely from the adjoining skin. This is usually results from too much tension on the mesentery and requires surgical revision of the stoma. Recession/Retraction—This means that the stoma sinks below the skin level. This can be caused by scar formation secondary to mucocutaneous separation, necrosis, peristomal skin problems, weight gain, radiation, recurrent malignancies or excessive tension on the suture line. This can be medically managed with a modified pouching system. Severe cases may require stoma revision. Stenosis/Strictures—These refer to the extreme narrowing of the stoma or scar tissue in the abdomen that can threaten the normal function of stool evacuation. Multiple causes can include inadequate suturing at the fascia level, mucocutaneous separation, edema and disease conditions, which may cause scar formation that, compress the stoma causing ribbon-like stool or obstruction. This may be medically managed with stoma dilation or require surgical intervention. Prolapse—This occurs when the stoma telescopes or becomes longer so that the bowel is slipping out through the stoma. Poor abdominal wall support and increased abdominal pressure from coughing, sneezing, laughing or tumor formation are common risk factors. Conservative management of a prolapse includes reduction of protrusion by gentle pressure, cool washcloth and even sugar—acts as an osmotic diuretic—on the stoma, then applying a binder or prolapse belt. In some cases, prolapse is medically managed if the patient is considered a surgical risk. Hernia—This is a protrusion of the bowel into the subcutaneous tissue around the stoma. This is characterized by a bulge in the abdominal wall or tension on the abdominal wall or on the abdominal muscle. This is medically managed by wearing a binder and/or modified pouching system. If herniation leads to a blockage, surgical intervention is required. To aid in prevention of a hernia, wear a binder especially when lifting heavy objects or guarding the stoma with a hand pillow when coughing or laughing. One noted entertainer, Bob Hope, used to place a hand over his side, guarding the stoma when laughing. Obstruction—Blockage of a stoma, as it is sometimes called, results from a recurrent disease process or the twisting-kinking of a loop of bowel in the abdomen. Surgical intervention is required. Impaction (colostomies)—Stomas clogged by hard stool requiring stool softening with enema or a small amount of oil prior to stoma irrigation. Impaction usually may be prevented by drinking 8 to 10 glasses of fluid per day, attention to diet; i.e., eating one with sufficient fiber, and regular use of natural stool softeners. You
Don’t Have to Live with Pain By
Mary Narcaroti, RN, MSHA Every year millions of people are affected by a painful condition. Unfortunately, without proper treatment, many people go on to have severe chronic pain that may be resistant to the usual forms of therapy. In the past, many people have had to live with their pain, and it was believed that it could never be relieved. For those people, the quality-of-life diminishes greatly; even minimal activity may be intolerable. The simple pleasure of life can be lost and in many cases, depression can follow. Fortunately, there has been significant progress and advancement in the science of pain management. Pain management specialist physicians have dedicated their lives to the research and development of new treatments. New pain control drugs and techniques to interrupt the pathways of pain are now a reality. Through continued medical advancements, patients no longer have to be told that they must live with pain. Some questions commonly asked by patients follow. Q What is chronic pain? Pain is defined as an “unpleasant sensory and emotional experience associated with actual or potential tissue damage”. It is chronic if is generally present for more than 12 weeks. This pain is real to the sufferer and can have profound physical, emotional, social and economic consequences if left untreated. Pain can originate in any part of the body from different tissues; e.g., nerve, muscle, ligament, bone, skin etc. Major categories of pain include pain due to cancer, headaches, neck, back and leg, chest and abdominal, spasm and nerve. A general diagnosis can be made by your family physician or a pain management physician can make a specific diagnosis. Q Who treats pain? Many health care providers do their part in the treatment of pain; these include the family physician, psychologists, physical therapists, chiropractors, acupuncturists and specialty physicians, such as, orthopedists, neurologists and oncologists. The specialty of pain management has been in the forefront of the advancement of this science. Anesthesiologists with a specialty in pain management undergo extensive training. Your pain management doctor should be board certified and the center accredited by the Joint Commission. Q What can be expected from an appointment? The treating medical doctor may refer a patient to a pain management specialist or a patent can directly call a pain management center. An evaluation and examination should then be performed. The diagnosis or possible differential diagnoses are made. The pain physician should then provide a diagnostic endeavor to find the source of the pain and therapeutic program to treat it. This may be in combination with other specialists. It should involve very specific recommendations tailored exactly to the pain problem. Q What are the goals of treatment? Depending on the diagnosis, the goal is to find the source of the pain, decrease or eliminate the pain, fine tune medications to control the pain, help cope with any residual discomfort, improve the quality-of-life and, if possible, return to work. Q What treatments are available? Medical therapy includes pain control with prescription medications—many that are new on the market, utilizing pain-psychological therapy, physical therapy, chiropractic or acupuncture treatments. Injection therapy is designed to place medication directly at the painful area or the nerve or tissue. These include diagnostic and therapeutic injections. Advanced pain therapy is designed to interrupt the pain signal on a continuous or long-term basis allowing the patient to function normally. For an example, let us focus first on a patient with discogenic pain; disc surgery can be performed through a long thin needle, eliminating the need for a painful open procedure. For some patients with particularly severe chronic pain, there are implantable devices that deliver powerful medications when needed, such as, morphine for pain or baclofen for spasm. Doctors can perform spinal cord stimulation, which substitutes a feeling of tingling for the pain. A radiofrequency procedure entails precise destruction of the painful nerve with heat. Epidural endoscopy allows direct visualization and treatment of spinal pathology. There is hope for pain sufferers. You do not have to live with the pain. Relief depends on the diagnosis, the severity and the chronicity of the pain. Pain therapy should be tailored to the exact needs and medical conditions present. Current science has allowed interventional pain management to help the vast majority of patients’ live fuller and more productive lives. The author is the executive director
for the Regional Pain Treatment Medical Center, Inc. in The
Best Ostomy Hints The
Sexuality By Pat Nishimot, RN, MPH Tulsa Newsletter Sexuality is a subject that
even most health care professionals are uncomfortable about talking. It is not surprising that couples dealing
with trauma may have trouble communicating their needs and complaints in this
area. I think that sexual
intercourse is only a minor part of sex.
Kissing, hugging, talking, playing and doing special things together
make up the majority of one’s sexual activity. (Editor’s note: This is obviously not a viewpoint that is
representative of most normal people.
Make no mistake that sex for men means achieving orgasm and is the
major part of a healthy intimate relationship.) Other things that contribute
to a healthy sexual climate include feeling comfortable with one’s self, the
ability to respond, having effective relationships with both sexes, and a
value system—knowing how one wants to act with others. It is important to remember that when
dealing with a partner who is sick or recently post-operative, it can be hard
to restart again in normal sexual activity.
Pain is a major
turn-off. Sexual response is not
always spontaneous; it is a learned behavior.
Trying too hard can result in frustrations or failure to perform. This may lead to panic or desperation, and
in an attempt to try even harder, an artificial and nervous response may
result . . . a sure way to fail again.
Other things that thwart a good sexual response are fatigue and over-indulgence
in alcohol or food. Various medical reasons can
result in an inability to perform sexually as well. Nerves damaged during surgery may prevent
males from achieving an erection or an ejaculation. Retrograde ejaculation means that the sperm
and/or semen are ejected backwards into the bladder. Orgasm is still possible with this
condition, but it does feel a bit different. After surgery, it can take
up to one year to regenerate nerves.
So, one should not be too impatient in waiting for function to
return. Give yourself plenty of
time. Rarely, females may have a nerve
cut that would decrease sensation in the genital area, but orgasm may still
be possible if the woman is adequately stimulated. Lubrication in a woman
parallels an erection in a male as far as sexual response and readiness are
concerned. A safe and practical
lubricant that may be used is safflower oil.
Stimulus and performance are also influenced by visual and mental
involvement, as well as an acute awareness and knowledge of one’s self and
one’s partner. Some hints that may be helpful include a
sense of humor . . . it is a great medicine; talking things over with your
partner, accepting that a “home run” is not necessary every time. To handle the possibility of
a potential leak while in bed, a shower curtain is an inexpensive alternative
to a plastic sheet—cover it with an old blanket for comfort. Then, do not worry about it. Even if a pouch should loosen, a change of
linen, a change of pouching system, an intimate shower, and an assurance that
love is still there can mend a potentially negative emotional response. If you are worried about the consequences
of eating inhibiting sexual activity, avoid gaseous foods and eat earlier. However, do not let that be a deciding
factor. Opt for sexual activity . .
. no matter when, either spontaneously or planned. Laugh at the minor challenges that
arise. Emptying the pouch before any
sexual activity will lessen any problems as well as be more attractive. Some people use pouch covers, mini-pouches,
fancy undies and pouches rolled up and taped in order to make them
smaller. Some of the new opaque
pouches even have a sporty look to them.
Take care of odor like any
prudent person with good hygiene.
Occasionally plan a special intimate appointment if your schedule is
apparently too busy for this important time—do not put off intimacy. You and your partner must work together to
find time. The reward is worth the
effort. If the partner of a person
with an ostomy is overwhelmed by the ostomy surgery, talking about feelings
and sharing concerns with each other and at activities of your local ostomy
support group, usually solve the problem.
Do not spring the ostomy on a new sexual partner without preambles. Do not worry about hurting
the stoma. It is tougher than you
think. Go to a meeting of your local
ostomy association. They are filled
with people who have gone through the same issues as you are going through
now. The main reason for this article
is to motivate you to action . . . go for it.
Try out and do not have too high of expectations, at first. Do it over and over again, and before long
you will be enjoying yourself sexually just like before your surgery. Hints for Good Visiting Published By ReRoute, Be well groomed and dress attractively, you are being observed. Be sensitive to the patient’s needs; be cordial and friendly—speak softly. Assure privacy if the patient is not in a single room. Ask if he/she would like to have the curtain drawn. Sit where the patient can see you easily without turning his/her head. When facing each other, communication may come more easily. Attend to the patient. Look at him/her, listen to what he/she is saying and “hear” what he/she is not saying. Respond simply and to the point. Encourage the patient to ask questions. Answer tactfully and honestly. If you do not know the answer to a question, say so and offer to find the answer. Briefly discuss the normal life you lead with your ostomy. Do not dwell on your surgery and medical history. Remember that this visit belongs to the patient. Respond factually to any questions about sex after surgery, if these questions are asked. If the patient does not want to talk about sex, do not press the issue. Accept emotional responses. If the person is angry or feels like crying, do not stop him/her. Accepting feelings usually will make you both feel closer. Remember that non-verbal communication is meaningful. A touch, a smile or just being there may show you care more than does the spoken word. Questions on care should be directed to your WOC nurse. When asked about ostomy management techniques, stress the fact that every ostomy is as individual as the person is. Be helpful without pushing your own techniques. Say nothing that will detract from the doctor-patient or nurse-patient relationship. Do not practice medicine or give medical advice. The patient may wish to show you his stoma or ask your opinion of his surgery, so be prepared. Do not pass judgment on the surgery or criticize a physician, even by implication. If the patient requests, show a sample of your pouching system to him/her. Be considerate of the patient. If there are signs of fatigue, try to conclude the visit and suggest that you could return another day. Assume the responsibility for continuing contact—a follow-up telephone call, a note, another visit or an invitation to a chapter meeting. When bringing the patient—and possibly the family—to an association meeting, arrange to assure that the patient receives a warm reception. Above all, be yourself, use your own good judgment, use common sense . . . you have been there. Common
Questions to WOCN’s Ostomy Insights—American Ostomy Supply Q Do you think it is a good idea to rinse out my colostomy pouch when I empty it? A I usually teach my patients the proper procedure for rinsing the pouch when emptying it, but leave it up to them if they want to continue to rinse or not. By proper procedure, I mean rinsing the pouch up to the level of the bottom of the stoma. I find sometimes people rinse the pouch too vigorously and cause the adhesive seal around the stoma to loosen from the inside of the pouch and introduce water at the seal. Some people feel more comfortable using an opaque colored pouch and not worry about rinsing it at all. Again, I think it is a personal preference with what you are most comfortable using. Many people get along just fine without ever rinsing the pouch. Q I have a urostomy, and my urine always looks cloudy. Is this anything to be concerned? A If you have in ileal conduit or a colon conduit, remember—our urine will have mucus from the piece of intestine used to create the stoma. Sometimes this causes the urine to look cloudy. This is perfectly normal. As an aside, if your adhesive is breaking down faster than usual, or your urine has a strong odor not caused from any foods, which create their own special odors, you may have an infection. If you have a suspect an infection, you need to see your regular doctor—who may refer you to a urologist. A urine culture sample will be taken to verify if an infection in present. Q What can you suggest for a deodorant to use inside the pouch? A Usually, ileostomy or urostomy output does not have much odor. For a colostomy, one might want to use a deodorant. There are many commercial deodorants available for use in the pouch or taken internally. They are available in liquid or tablet form. Years ago, aspirin was recommended to use as a deodorant in the pouch. Aspirin is not recommended any longer. It was found that it causes pinpoint bleeding of the stoma if it washes up onto it. Moreover, it has not been shown to be effective in odor control. Probably, using a good room spray before opening the pouch could be partially effective. Remember, everyone with or without an ostomy has odor in his/her stools. What
is What is normal for my stoma? This is a frequently asked question. Here are some answers from your stoma to you. My color should be a healthy red; I am the same color as the inside of your intestine. If my color darkens, the blood supply might be pinched off. First, make sure your pouch is not too tight. It should fit about 1/16th of an inch from the base of the stoma—although the new extended wear barriers like the Hollister Flextend and the ConvaTec Durahesive may touch the stoma. If I should turn black—very unlikely but it does happen occasionally—seek treatment at once. Go to your local hospital emergency room if you cannot readily locate your doctor. Be sure to remove the pouch and the skin barrier for them to examine the stoma and peristomal skin. Always take at least one extra pouching system along. I might bleed a little when cleaned. This is to be expected. Do not be alarmed. Please, just be gentle when you handle me. If I am an ileostomy, I will run intermittently just about all the time and stool will be liquid to semi-solid. If you should notice that I am not functioning after several hours and if you develop pain, I might be clogged. Try sipping warm tea or taking a little mineral oil and then try walking or getting into a knee-chest position on the floor. Sometimes a hot shower with your barrier removed will relax you enough to loosen the obstruction. If I do not begin to function after about an hour of this, call your physician. If you cannot locate him/her, go to the emergency room. In the meantime, I might have begun to swell. Remove your skin barrier and put on one with a bigger opening. If I am a colostomy located in the descending or sigmoid colon, I should function according to what your bowel habits were before surgery. I can be controlled in some cases with diet and/or irrigation. This is a personal choice. There is no right or wrong to it, as long as I am working well, my stool will be solid. If I am a urinary diversion, I should work constantly. My urine should be yellow, adequate in amount and will contain some mucous. If my mucous is very much more excessive than usual, I might have an infection. I will probably also have an odor and possibly a fever. Consult your physician if that is the case. If at any time, you doubt that your stoma is functioning normally, please seek help . . . call your WOC nurse. The cause needs to be evaluated. If your problem is a serious one, it needs correction. If it is not, you will be relieved to know your stoma is alive and well. Note: If you do not have a WOC nurse, find one before you ever need help. Have his/her phone number in your wallet at all times—just in case. In addition, you should see your WOC nurse every year or two or three to have your stoma examined. Measuring Your Stoma By
Alice Bowman and Bob Baumel We recently visited a patient with a two-year old colostomy, suffering from severe skin irritation caused by using a pouching system with a pre-cut stoma opening the same size as originally measured in the hospital after surgery. Immediately after surgery, the stoma is quite swollen; it then shrinks for about the next six months—sometimes a year or longer. During the initial period, while the stoma is shrinking, it is best to use a cut to-fit skin barrier and measure your stoma every time you change the pouching system. Once your stoma has stabilized, you may wish to switch to a pre-cut skin barrier. However, you should continue to measure your stoma occasionally to see if you should switch to a different size and type of pouching system. If you fail to adjust your skin barrier opening as your stoma shrinks, you will eventually be using a skin barrier with an opening much bigger than your stoma. This leaves a large area of unprotected skin around your stoma, making you a prime candidate for skin irritation. How big should the skin barrier opening be? For most types of skin barriers (formerly called faceplates or flanges), the opening should provide clearance of a millimeter or two all around the stoma (about 1/16th of an inch). On one hand, one should minimize the area of unprotected skin around the stoma; on the other hand, some clearance is usually necessary because many barriers contain hard materials—including plastic films—that can damage the stoma if they come in contact with it. Paste or a one of the new barrier strips may be used to fill in the gap between the flange and stoma. The new extended wear barriers, such as,
ConvaTec’s Durahesive or Hollister’s Flextend barriers are engineered to be
sized so that they actually touch the edge of the stoma. Your ostomy supply dealer and your WOC
nurse can keep you informed of the new products on the market and alternative
options for using them. By
Joshua A. Katz, Colorectal Surgeon, The creation of a stoma urostomy represents a major, immediate and sometimes permanent change in the life of a human being. This can have profound effects upon lifestyle, intimacy, employment, recreation and travel. Fear, misunderstanding, loss of self-image and social isolation can compound the situation. Colorectal surgeons and nurses who care for patients with a stoma must recognize that to save someone from a life-threatening condition means little if the life the person returns to is made miserable by a poorly functioning stoma. The objective of any operation involving a stoma is to create a stoma that the patient can care for with simple routine using a pouching system that fits reliably, comfortably and protects the surrounding skin. Time between ostomy changes should be a least once a day and never longer than seven. There should be no leakage of feces around the pouching system. Creation and utilization of a stoma is a team approach involving the patient, the ostomy nurse and the colorectal surgeon. Patients must assume responsibility for their own health and well-being. They need to learn about their disease and understand what operation is being performed and why. They need to know whether they have a colostomy or ileostomy, and whether it is permanent or temporary. An important rule to keep in mind is, “when you do not know, ask.” It is useful to keep a medical summary of one’s medical and surgical history written down. So be sure to list current medications, physician’s names, addresses and telephone numbers. If a relative or friend has power of attorney or is a health proxy, or if there is a living will, this should also be recorded. One may also choose to obtain copies of operative notes and discharge summaries from recent or complex procedures and hospitalizations. This record is particularly critical when traveling or relocating. It is important to know that by law all information about a patient must be made available upon request of the patient. This means that at any time, you can request a copy of your medical records. In particular, patients planning a long journey—usually more than a week—or relocation, should notify their doctor, travel with a copy of their medical record, and prior to leaving, seek and obtain the name and number of a physician at their destination. The ostomy nurse also plays a critical role in the preoperative and postoperative management. Prior to surgery—in elective or non-emergency cases—the surgeon and nurse sit down to review with the patient what procedure is being done and why. The patient then has his/her body examined while standing, sitting and lying down to determine the best place on the abdominal wall to locate the stoma. One or more sites are then marked so that the surgeon knows where to place the stoma during the procedure. Principles of stoma location and creation includes ü Keeping the stoma away from bony landmarks like ribs, hips, scars and creases; ü Making sure the patient can see the stoma; ü Placing the stoma so it is not in the midline abdominal incision; ü Keeping the stoma within the rectus muscle to prevent peristomal hernias; ü Preventing stoma tension and assuring an adequate blood supply; ü Budding the stoma so that it is inverted to permit proper pouch placement. This is particularly important for ileostomies so that the pouch can be placed right next to the stoma with no exposed underlying skin and thus prevents skin irritation, ulceration and breakdown. An ostomy nurse can help patients adapt post-operatively to living with their stoma by assessing the quality of the pouching system and its fit, and modifying the pouching method. Particularly in the several months following surgery, patients may gain or lose weight depending upon their disease and may undergo several different pouching methods before developing a regimen with which they are comfortable. The ostomy nurse can facilitate and direct the process. Patients with ostomies should consider a yearly visit with an ostomy nurse to reassess pouching methods and to assess for problems. While these principles of preoperative assessment and operative management are considered standard of care by colorectal surgeons, there is, as yet, no data that prove the validity of these principles. Also, some patients with less than optimally constructed stomas function well. For this reason, Cleveland Clinic ü American Board of Colorectal Surgery—734-282-9400 or www.abcrs.org ü American Society of Colorectal Surgery—847-290-9184 or www.fascrs.org Youth is not a period of life, it is a state of mind, it is the vigor of the will, the agility of the imagination, the strength of feeling, the victory of courage over cowardice, the triumph of the spirit of adventure over inertia. Nobody becomes old because he has a number of years behind him. One becomes old when one says good-bye to one’s ideals. With the years, the skin becomes wrinkled, but the renunciation of enthusiasm wrinkles the soul. Sorrow, doubt, lack of self-confidence, anxiety and hopelessness are like long years that drag the head down to earth and bend the upright spirit into the dust. Whether seventy or seventeen, within the heart of every person lives the longing for the wonderful, the uplifting amazement at the sight of the eternal stars. Within every heart lives a fearless venture, the insatiable child-like tension of what the next day will bring. Within lives the frolicsome joy and gaiety, the joy of life. You are as young as your confidence, as old as your doubt, as young as your self-confidence, as old as your fear, as young as your hopes, as old as your despondency. As long as the messages of beauty, joy, boldness, the greatness of men and of infinity reach your heart, you are young. Only when the wings hang down and the snow of pessimism and the ice of cynicism cover the inside of the heart have you become truly old. Visitor's
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Jeri Zaslavsky Ostomy patients have unique and individualized situations. This surgery affects each person in different ways both physically and emotionally. Support is a critical step to understand and deal with this type of surgery. The Ostomy Association of Greater Chicago offers a range of support options to fit the needs of the individual patient and his/her family. UOAA has support groups, both on-line and in-person, which give help and hope. We may provide on-line companionship, offer valuable adaptive strategies and lessen the loneliness and isolation that may play a role in the new patient’s view of life. Support groups, like ours, also provide people a chance to give of themselves, and when doing so, help others while fulfilling their own destiny to do good works. Printed material is always available for patients better to understand what will happen to them before and after surgery. Just ask at any meeting about them. (Our Internet site at www.uoachicago.org has a plethora of free information available.) My plea to you is to help make this wonderful resource more available to our patients. Please help contact the WOC nurses and medical doctors in your community to tell them about us. This is a fundamental way, which we can reach out to offer our programs and support to a new patient. Enough
Water? You are advised that you drink enough water every day as a person with an ostomate to obtain the excellent results promised. What items should be included in the daily intake of water? Beverages containing caffeine allow you to retain about 40% of the water in them. These include coffee, tea and soda. Milk, fruit and vegetable juices retain about 75% of the water. Alcoholic drinks even add some water. Beer retains about 25% of the water. All these do count toward your daily water intake. But beware; any drink adds other chemicals into your body. These chemicals may cause very harmful side effects that may lead to sickness; e.g., drinking too much beer or soda on a hot day. There is not enough water in these substances to wash away there toxic effect thereby leading to dehydration. If you are thirsty, you are dehydrated. If your urine is cloudy or dark yellow, you need to drink more water. Urine that is clear or pail yellow in color indicates your body is getting the liquid it needs. An added benefit of drinking plenty of water is that your weight will normalize. This means that if you are fat, you will loose weight by drinking more water, always before a meal and never afterwards. Be sure to ask your doctor if there is any reason for you to limit your water intact, like people with certain kidney issues or diabetics. |
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