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October
2008 Last Month’s Meeting Our first meeting of fall was on another
perfect Our featured speaker for the evening was
the energetic and entertaining Madeline Grimm, WOC nurse from Madeline also gave one of the best explanations of how a skin barrier should be sized on a fecal ostomy. She clarified that a stoma is always moving—peristalsis—and that means it is getting bigger and smaller at its base. We all knew this. But, what she was able to elaborate on was that when selecting a hole for the skin barrier, it is prudent to make the opening about 1/8th to 3/16 bigger than the stoma. This will allow the stoma to swell and shrink without the skin barrier cutting into it. The gap may be filled in with a barrier seal or a paste. In other words, the measurement of a stoma will change in a short timeframe, therefore, it is the preferred method of ostomy care to size the skin barrier a bit larger yet cover any bare skin near the stoma. Brilliant! We celebrated Ken Niebuhr’s birthday, which was on our meeting day. Ken brought two-dozen tasty cupcakes for us to enjoy while we reveled with him. Ken will arrange and manage our dinner for the upcoming Holiday Party on December 10 just as he did last year. For the first time in 12 years, Jerry Schinberg won the 50/50. Wahoo! I guess it is time for him to buy a lottery ticket. We were invited a few weeks ago to
participate in an ostomy focus group, hosted by a major ostomy product
manufacturer, in downtown We just
received a request from a major ostomy manufacturer that is having an agency
conduct in-depth interviews on our satisfaction with product support
regarding ostomy products. In particular, and because the product and health
support they are proposing will be online, they need to understand people's
online habits, and features / functions that people might like to see if
there was an online resource to use for product and health related questions.
In order to do this, they need about 40-45 people to interview and are
willing to pay a small compensation for the time spent in the interview. We do not know how much, but suspect
somewhere around $75. Your
confidentiality is of utmost importance to us, so if you want to take part
contact them at csetter@whittmanhart.com
or call Carol Banks Setter, Ph.D., Whittman Hart Company, 513-225-5398 or
312-981-6105 and tell her that you have an ostomy and would like to be
interviewed as part of the C3life project. We would like once
again to mention the urgency of the parking situation at Lutheran General
that has your board considering different meeting options for 2009. We are thinking of having a bi-monthly get
together at Tiffany’s Restaurant on We are updating our mailing list. Please drop a card in the mail with your name, address, phone and especially e-mail address to us. 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. The DuPage Ostomy Association is having
their annual Product Fair on October 22, 7:00 PM at 2008 Meeting Dates 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 2008/2009
Meeting Dates October 20— 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 I have learned
that I cannot choose how I feel, but I can choose what I do about it; that
one should keep his/her words both soft and tender, because tomorrow he/she
may have to eat them; that love, not time, heals all wounds. 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 2008 Meetings December 11 The New UOAA Blog The United Ostomy Associations of America
has put together a brand new method for us to communicate, the UOAA
blog. This was specially designed by
the talents of Kristin Knipp. A blog
is a shortened form of a web log. It
is a new way to provide up-to-the-minute news about events within and around
the ostomy universe. We will also
provide information on advocacy matters as time goes on. You can find it at www.uoaa.org in the left-hand navigation menu,
or go directly to http://uoaa.wordpress.com/
. We would like you to know that The Cancer Wellness Center offers quality programming to meet the emotional needs of newly diagnosed patients and their families, all at no cost. Peggy Bassrawi, RN, one of our board members, is an active supporter and recommends referring currently diagnosed oncology patients to this vital new program. For more information, please call 847-509-9595. Bridges By
Joe Rundle, Aurora, IL Ostomy Support Group I recently read a book by Don Piper
entitled Heaven is Real, which he relates his experiences in for form of
bridges in our lives that we must cross—some for the better and some for
not. I would recommend this book to
anyone who has experienced some traumatic periods in his/her life—I guess
this would be everyone. Piper’s first book, 90
Minutes in Heaven, offers a background to the second. He talks about all the bridges he crossed
following his accident leading up to the point that he felt he was nearly
fully recovered. As people with ostomies, we had to
encounter many bridges when we were first diagnosed with the conditions that
lead to our surgery—at least I did.
First comes the “Why me?” followed by “Now what will my life be
like?” As we approach these bridges,
we do not know what will be on the other side of that bridge. We must trust that everything will work out
in our best interests. We must
optimize our new situation. In the chapter entitled Prayer Power, he
stresses the power of support groups.
“We also need to consider support groups. Some people have a fear of sharing intimate
details, but that is part of the issue of trust. It is part of learning to share with one
another. I do not suggest babbling
about everything in our lives, but often in support groups when a person
opens up, it is exactly what another person needs to hear. I believe we all need support groups of
some kind. Another thing about support
groups is that it works both ways—as we support, we are supported. As we give, we also receive.” If you do not believe him or think it is
just silly, you should attend one of the many support groups out there. Witness for yourself the outpouring of love
and information that comes out of one of these meetings. As for our own ostomy support group, you
would be surprised at the conversations that go on way after the meeting is
over. I have had many members, friends
of and spouses of people with ostomies tell me afterwards how much they have
learned by just listening or becoming involved in one of the many
conversations. We can go it alone, but
it is usually much easier to share one’s burden with another person that has
walked down that same path. Don closes this chapter with a thought,
“As we pray (support) for others, God smiles on us and connects us more
closely with each other.” Will you be
at our next ostomy support group meeting?
I sure hope so! Pregnancy with an
Ileostomy By Kathy DiPonio
In 1989, at the age of 18, I was diagnosed with Crohn’s disease. I had two-thirds of my colon removed in
November 1994, when I was 24. Over the
next several years, my Crohn’s was active and in full force. I tried all the medications that were
available and did not respond well to any of them.
I then tried Remicade and had no luck with that either. Having been hospitalized several times due
to severe flare-ups of my Crohn’s, I was told not to go without medical coverage
and absolutely to not become pregnant.
A few years later, as a last resort, I joined a study for an
experimental drug. I suspect I
received the placebo because I noticed no change in my health.
Shortly after this last hope of a medicine controlling my Crohn’s, I
saw a surgeon and agreed to have the rest of my colon, rectum and sphincter
muscle removed. That happened in
January 2003. I was 32 years old and
forced to make the decision to have ostomy surgery that ultimately saved my
life.
For the most part, I felt well after ostomy surgery with what I
considered minor flare-ups of Crohn’s disease. It was nothing like before surgery and
nothing that I could not manage by carefully watching my diet, managing
stress and getting enough rest. My
then boyfriend was beside me through the whole thing. Two weeks prior to surgery, we became
engaged, and we were married six months later. My colon-rectal surgeon said that I should
wait at least a year before becoming pregnant so that my body could
heal. I started taking prenatal vitamins
in January 2004. I knew that this
would be the year that my husband and I would try to conceive. I wanted to make sure I had enough vitamins
and minerals in my system for when the time came.
When my husband and I felt that we were ready for a child, I went to
see an ob/gyn that had experience in delivering babies to women with both
Crohn’s disease and ostomies. That was
in June 2004. He was very patient with
me and answered all of my questions. I
asked him if there was anything that specific I needed to do. He told me to keep taking the prenatal
vitamins, go home and get busy. He
also told me to be patient because my uterus was tipped and due to my
previous surgeries, I have a considerable amount of scar tissue so it might
take me a while to get pregnant.
He said this is normal for someone with my medical history and he did
not want me to be discouraged. It was
a time to be patient. So, I stopped at
the store on my way home and got an ovulation kit and a pregnancy test. When my husband came home from work, I
insisted that we get right down to business.
I thought if this could take a while, we should not waste any
time. That was at the end of June. To everyone’s surprise, I was pregnant by
August!
It was not very long before my Crohn’s disease started flaring
up. Only now, the flare-ups would last
two to three weeks and were severe. I
had horrible fatigue and pain from ulcerations in my mouth and throat. I had trouble eating and drinking. I went to see my gastroenterologist at the
beginning of November 2004, for the first time since my ostomy surgery. I had ulcers in my mouth, throat and nose,
those red bumps on my legs and I felt tired like I had never felt tired
before. I was so tired that I would
have a hard time staying awake when driving home from work after a long day
in the office.
The doctor prescribed me medication to help keep my Crohn’s under
control. I had to change the
medication after just over a week because it would not dissolve before passing
through my system.
Several weeks went by and I was not feeling much better. At my next ob/gyn appointment, in late
November 2004, I was in tears because my Crohn’s was so bad. We discussed in detail the issues I had,
and I expressed my concerns about my health and my baby’s. I had a very demanding high stress
job. The added stress to my body from
my pregnancy was more than I could handle both physically and emotionally.
The doctor decided that it was in the best interest of my pregnancy
and my health for me to stay off work until after the baby arrived. Once I was off work and home for a few
weeks, I started to feel better. I was
able once again to manage my Crohn’s disease by taking medication, obtaining
enough rest, watching my diet and keeping my stress low. When I could feel a flare up starting, I
would do as little as possible and rest as much as possible.
The remainder of my pregnancy was not too bad. I made sure that I ate right; obtained than
enough rest, kept my stress low and I did exactly what the doctor said I
should do. I developed a hernia during
my pregnancy. I vomited on a daily
basis during my whole pregnancy and that could have caused the hernia. Because of the two abdominal surgeries I
had prior, I could have gotten the hernia from my stomach growing, sneezing
or coughing. There was no way to pin
point the cause.
I had concerns of my stoma prolapsing because of pushing the baby out
via vaginal delivery. I did not want
to risk having surgery to correct that problem even though the risk was
low. My ob/gyn and I decided that I
would deliver my baby via cesarean section and we scheduled a date. In addition, at the end of nine long
months, I delivered a healthy baby boy!
Hurray! I had my hernia
repaired at the same time . . . a two-fer.
I had no complications during surgery and was awake for the whole
thing.
At the UOA National Conference in August 2004, there was a session on
pregnancy. The women that spoke were
very open and answered everyone’s questions.
My concern was that my stoma would prolapse and not go back down to
its normal size. I was also concerned
about the increased gas being produced.
They said that the stoma does get larger but assured me that it will
go back down to normal size as one heals.
It turned out that my stoma size did not change at all. It looked exactly the same when I was nine
months pregnant as it did before I got pregnant. It did not make any more noise than normal
either. The only thing that I did
different was change my pouching system more frequently—twice a week—and this
was because my stomach was growing.
Prior to pregnancy, I only had to change my skin barrier about once a
week. I did not have any accidents or
leaks, either. As far as my stoma and
ileostomy were concerned, I had no issues whatsoever. I did have to be a little creative during
intimate times because my belly would get in the way.
Ileostomy surgery has been a positive change in my life. I am currently in better health than I have
been in years. I can do virtually
anything I want to do without limitations.
I have been able to do things that I could not or would not do prior
to surgery. I travel all over
including foreign countries. Moreover,
I am active in my community and church; I am the Vice-President and Visitor
Coordinator of my local ostomy support group; I am also the Co-Chairperson of
The 30+ Network that is affiliated with The UOAA, Inc. I have wonderful family and great friends
that have all proven their unconditional love for me.
Most importantly, I am the mommy of a healthy, happy baby boy who is
the absolute light of my life. I am
truly blessed and very grateful to have the wonderful things in my life that
I do. I am living proof that ostomy
surgery is not the end of the world but a second chance at life and the
beginning of a new and exciting chapter in my book of life. Looking back over all that I have gone
though, I would not change a thing! Always
wear clean underwear
in public, especially when
working under your
vehicle. From the
Northwest Florida Daily
News comes this story
of a Crestview
couple who drove their car to
WalMart, only to have their car
break down in
the parking lot.
The man told his wife to carry on with the shopping while he fixed the
car in the lot. The wife returned later to see a small
group of people near the car. On closer
inspection, she saw a
pair of male legs
protruding from under the
chassis. Although the
man was in shorts,
his lack of
underwear turned private parts into
glaringly public ones. Unable to stand the embarrassment, she
dutifully stepped forward, quickly put her hand up his shorts and tucked everything
back into place. On regaining her feet, she looked across
the hood and found herself staring at her husband, who was standing idly
by. The mechanic, however, had to have
three stitches in his forehead. By Mark Shaffer In most cases, people never discover that you have an ostomy unless you tell them. So deciding who should know about your ostomy—and who should remain in the dark—is one of the first issues a person having ostomy surgery must face. It is also an issue that never completely goes away. No matter how long you have an ostomy, you will meet new people and existing relationships will change. These changes will cause you to revisit the “tell” versus “don’t tell” question repeatedly. Approaches to this problem are as varied as the people who face them, but there are a few general guidelines. Primarily, you should never be ashamed of having an ostomy, and you should never feel you need to hide this fact. It is an old adage in ostomy circles that anyone who would change their opinion of you because you have an ostomy is probably someone who is not worthy of your time or concern. On the other hand, having an ostomy is a private matter, and you should not feel the need to announce it from the rooftop either. There are only a few people a prudent person would simply have to tell. These include health-care providers, your spouse or significant other, and anyone else involved in your recuperative care. Nevertheless, beyond these common sense restrictions, it is up to you. You might choose to divulge to your co-workers that you had abdominal surgery, but you are now healthy again—which is usually true. You might want to be more detailed when discussing the situation with friends and family . . . but you also might not. It is totally up to you—do what is comfortable for you. Be happy, you have been given a new life. Drinking
Water Every Day Contributed By Dick Dorman
How eight glasses a day keeps fat away. Incredible as it may seem, water is quite possibly the single most important catalyst in losing weight and keeping it off. Although most of us take it for granted, water may be the only true “magic potion” for permanent weight loss. In his book The Snowbird Diet, Dr. Donald Robertson tells why: First, water suppresses the appetite naturally and helps the body to metabolize stored fat. Studies have shown that a decrease in water intake will cause fat deposits to increase, while an increase in water intake can actually reduce fat deposits. If the kidneys do not get enough water to do their work, some of their load is transferred to the liver. One of the liver’s primary functions is to metabolize stored fat into usable energy for the body. However, if the liver has to do some of the kidney’s work, it cannot operate at full throttle. As a result, it metabolizes less fat and then more fat remains stored in the body and weight loss stops. Drinking enough water is the next best treatment for fluid retention. When the body gets less water, it perceives this as a threat to survival and begins to hold onto every drop. Water is stored in extra-cellular spaces—outside the cells. This shows up as swollen feet, legs and hands. Diuretics
offer a temporary solution at best. They force out stored water along with some essential nutrients. Again, the body perceives a threat and replaces the lost water at the first opportunity. Thus, the condition quickly returns. The best way to overcome the problem of water retention is to give your body what it needs—plenty of water. Only then, stored water is released. If you have a constant problem with water retention, excess salt may be to blame. Your body will tolerate sodium only in a certain concentration. The more salt you eat, the more water you system retains to dilute it. However, getting rid of unneeded salt is easy—just drink more water. As it is forced through the kidneys, it takes away excess sodium.
The overweight person needs more water than the thin one. Larger people have larger metabolic loads. Since we know that water is the key to fat metabolism, it follows that the over-weight person needs more water. Water helps to maintain proper muscle tone by giving muscles their natural ability to contract and by preventing dehydration. It also helps to prevent the sagging skin that usually follows weight loss—shrinking cells are buoyed by water, which plumps the skin and leaves it clear, healthy and resilient. Water helps rid the body of waste. During weight loss, the body has a lot more waste to get rid of—all that metabolized fat must be shed. Again, adequate water helps flush out the waste. Water can help relieve constipation. When the body gets too little water, it siphons what it needs from internal sources. The colon is one primary source. Result? Constipation. However, when a person drinks enough water, normal bowel function usually returns. So far, we have discovered some remarkable truths about water and weight loss: · The body will not function properly without enough water and cannot metabolize stored fat efficiently. · Retained water shows up as excess weight. · To get rid of excess water you must drink more water. · Drinking water is essential to weight loss. How much water is enough? On the average, a person should drink eight, 8-ounce glasses every day—that is about two quarts. However, the overweight person needs one additional glass for every 25 pounds of excess weight. The amount you drink also should be increased if you exercise briskly or if the weather is hot and dry. Water should preferably be cold—it is absorbed into the system more quickly than warm water. Some evidence suggests that drinking cold water can actually help burn calories. To use water most efficiently during weight loss, drink at least three glasses in a half hour in the morning; drink another three glasses around noon, and another three glasses around 5:30 p.m. It is best to drink water before meals instead of using it to wash down food. When the body gets the water it needs to function optimally, its fluids are perfectly balanced. When this happens, you have reached the “breakthrough point”. What does this mean? · Endocrine-gland function improves. · Fluid retention is alleviated, as stored water is lost. · More fat is used as fuel because the liver is free to metabolize stored fat. · Natural thirst returns. · There is a loss of hunger almost overnight. If you stop drinking enough water, your body fluids will be thrown out of balance again, and you may experience fluid retention, unexplained weight gain and loss of thirst. To remedy the situation, you will have to go back and force another “breakthrough”. Are you asking, “What does this have to
do with people with ostomies?” Well,
people with urostomies are supposed to drink much water, to keep their
kidneys flushed out. People with
colostomies should find that irrigation is improved and a softer output; and
people with ileostomies need it more than others do because they are always a
little bit dehydrated. We can all use
the extra energy generated by the efficient functioning of the liver. Drink up!
Be healthy, you have been given a new life! (Excerpted from The Q What are skin ulcers? A Skin, like every other organ of the body, requires nourishment, which means a blood supply. If the blood supply is cut off, the skin starts to die and if prolonged, the skin can ulcerate. If you have an ulcer under a skin barrier, it is an indication that this localized spot is getting more pressure than the area around it; so correct the unequal pressure problem. Q What causes warts to form on the edge of the stoma? A A poorly fitted skin barrier can cause nodules to form around the edge of the stoma. They are benign and will do no harm. If they get in the way, they can be removed by cauterization. Q When a person with a colostomy who wears a pouch gets a blockage from eating improper or too much food, should a laxative such as prune juice be taken? Should heat be applied? Would it be a good idea to irrigate? A When a colon is blockage, in most cases, it is due to constipation. There are a number of things that could lead to a person becoming suddenly constipated, such as eating constipating foods, lack of physical activity, use of pain medication, etc. It is quite satisfactory for a person with a colostomy to take a mild laxative. The use of prune juice is an excellent suggestion. Foods with fiber, like bran, make the stools less constipating. For a person who has not irrigated, the other methods should be tried first. Q I have a hernia on one side of the stoma, which was once repaired by surgery, but it reoccurred. I use a 4-inch wide elastic belt to keep the hernia in place during working hours. At night, when taking off the belt, I notice the stoma is swollen, but by morning, the stoma is back to normal size. Is there any long-term danger in this procedure? A When the stoma goes down overnight and there is no marked change in the color; we see no long-term danger. There would be far greater danger in not wearing some form of support during waking hours if you are an active individual. Some people with ostomies with recurring hernia problems have taken steps to have the stoma relocated. If this is done at the navel, which is the strongest part of the stomach muscle, make sure you have a protruding stoma because this is an uneven sunken area. Q Does the appearance of my stoma change over time? Does it age? A The size and shape of a stoma generally changes within six to eight weeks after surgery. This is why it is not recommended to purchase precut skin barriers immediately after surgery. Alterations in the abdominal contour related to weight gain or loss or abdominal muscle weakness can result in a change in the size and shape of the stoma. If the size and shape do change, the size and type of pouching would need to be adjusted. The stoma does not “age”, but a healthy stoma is always pink or red and moist. Q Should an ostomy be a consideration when taking medications for other conditions? A Patients with inflammatory bowel disease, multiple small bowel resections or radiation enteritis require special consideration for medication regimes because of the decreased absorption capacity. Some forms of medications are not completely absorbed with patients who have an ileostomy. Examples of such medications are enteric-coated tablets, large tablets, and time released capsules and spanules. Liquid forms will ensure the best absorption. Remember, that even the best advice
offered over these pages is only general information. The particular circumstances relating to
your particular body chemistry may require alternate or more in-depth medical
treatment that only a medical professional as an ostomy nurse can provide. By Marvin M. Schuster,
M.D. Skin breakdown is one of the most common problems people with ostomies encounter, but can be avoided by proper care and management. Different problems arise for people with ileostomies, colostomies, or urinary diversions, but no matter what the disorder or whom it affects, prevention is always much easier than treatment at late stages. For this reason, the person with an ostomy should give particular attention to the state of the skin and take immediate steps if he or she notices anything unusual. This is especially important because good, healthy skin makes for a better fitting pouching system, which, in turn, makes for a good, healthy skin. Skin breakdown may be due to one of three causes: Allergy: An allergy may be due to the adhesives, cement or the material of which the skin barrier is manufactured. Fortunately, Karaya—used in many barriers and pastes—itself is so inert, that it is extremely rare for a person to be allergic to it. Other skin barriers, like ConvaTec’s Stomahesive or Durahesive and Hollister’s SoftFlex or Flextend, are specifically designed for skin comfort. In addition, many suspected cases of allergy in fact are simply skin sensitivities to certain products. For example, many people do not wear a wool sweater directly on their skin because it is itchy, yet, they are not allergic to wool, just sensitive. If there is any suspicion of allergy, the person with an ostomy should test whatever material he/she seems to be allergic to on a part of the body remote from the stoma, say the chest or arm for example. One can do this by putting a small amount of tape or cement or suspected material in a patch in the test area and observe for further effects. Should the skin break down on the test area, obviously, it will not interfere with adherence of the skin barrier. Sometimes one can eliminate allergic response simply by switching to another brand of ostomy supplies. Becoming sensitive to one type of barrier happens to many people even after years of using a product with excellent results. Again, this is best determined by trial, using the patch test as suggested. Exposure of Skin to Digestive Enzymes: This problem is more common to people with an ileostomy than a colostomy or to people with urinary diversions, since the ileo excretions are rich in digestive enzymes whereas the other two fluids are not. Prevention also begins with a sufficiently protruding stoma, which may be achieved by using a convex barrier. If skin breakdown is present, there are a number of substances, which can be used to promote healing, and an enlightened physician or ostomy nurse can handle this problem. ConvaTec and Hollister, Inc. both have barrier rings, strips and pastes designed specifically to protect the skin against digestive enzymes. Infection with Bacteria or Fungus: This problem often gets started from one
of the other two problems, especially when there is a poor fit of the skin
barrier and leakage occurs. If you
have little red raised bumps under your skin barrier, there is a good chance
you have a fungal—also called a yeast or candida infection. Two very good agents for handling this
situation are micro-granulated fungal powders like Mitrazole or Mycostatin
powder, which may sometimes be purchased without a prescription in Steroidal skin prep, like Desonide lotion or Kenalog spray, which removes itching like magic but requires your doctor’s prescription—will help with the healing of certain types of infection. Lotions and sprays may interfere with the adherence of a skin barrier depending on one’s skin type and the pouching system used—so use caution.
An updated article about an old
challenge A person who has had a colostomy, ileostomy or urostomy for a long time usually has experienced occasional problems with the stoma, skin or equipment. A prudent person with an ostomy has sought help from a WOC nurse, physicians, friends and others. As advice was given, he/she considered each suggestion into the routine for changing his/her pouching system . . . many times adding a new procedure to the mix. Changing the pouching system took more and more time. We have observed persons using several different kinds of soaps or disinfectants to cleanse the skin, applying skin sealants using several skin barriers and then affixing the pouch over all this. Often the result of this is that the person will take hours to change the pouching system and care for the stoma and skin. Of course, periodic evaluation of the changing procedure should be done. At each step, a person with an ostomy should ask him/herself, “What am I accomplishing doing this step? Can I eliminate it?” The pouching system should guarantee freedom from leakage of stool or urine; maintain normal peristomal skin, be odor proof and be invisible when the person is dressed. The procedure should be uncomplicated with as few steps as possible. No step or use of a product should duplicate another. Care of the stoma, skin and changing the equipment should take no more than 15-20 minutes and average only about 3-6 minutes. The stoma should accommodate the lifestyle of the person who has it and take as little time as possible. Vitamin B-12 Replacement Therapy By Bob Baumel, Ostomy Association of North Vitamin B-12 is, under normal conditions, absorbed in only a small section of the terminal small intestine—ileum, raising the possibility of B-12 deficiency if that section of ileum has been removed surgically or damaged by disease. People who may have lost that portion of ileum include some people with ileostomies, people who had a failed J-pouch or Kock pouch, and some people with urinary diversions—especially continent urinary diversions made using the terminal ileum. A condition, such as Crohn’s disease, may have damaged the terminal ileum, even if it has not been removed surgically. Vitamin B-12 is necessary for many metabolic processes including development of red blood cells and maintains normal functioning of the nervous system. Deficiency causes anemia, which is reduced oxygen carrying capacity of the blood resulting in fatigue; and, it can cause nervous system damage. It is worth noting that folic acid—another B vitamin—can correct the anemia caused by vitamin B-12 deficiency but will not correct the nerve damage caused by B-12 deficiency. Therefore, it is important for us with ostomies to obtain enough vitamin B-12. If you think you are at risk for vitamin B-12 deficiency, you should ask your doctor to check your blood serum B-12 level. This test can be added easily to routine blood testing. If your ability to absorb vitamin B-12 by the normal pathway involving the terminal ileum has been impaired, you can supplement the vitamin by three basic methods. By injection: This method bypasses the normal gastrointestinal process of B-12 absorption by inserting it into the body by intramuscular or subcutaneous injection. In cases of serious B-12 deficiency, this method should be implemented first in order to raise the B-12 level in the body as rapidly as possible. Then, the patient may switch to one of the other methods if desired. B-12 injections may be self-administered in the same way that diabetic patients can give themselves insulin shots. Maintenance therapy may require only one B-12 injection per month. Nasally: This method also bypasses the normal gastrointestinal absorption process, as vitamin B-12 can be absorbed through nasal mucous membranes. The nasal form of B-12 was developed first as a nasally applied gel and later a true nasal spray—brand name Nascobal. This product is marketed by QOL Medical, who promotes it as the only FDA approved form of vitamin B-12 besides the injectable form. Note that FDA approval is not relevant to oral B-12, discussed below, because the FDA
does not regulate oral vitamin sales.
Nasal B-12 can be effective but, because one company has sole rights
to distribute it in the Orally: Until recently, doctors believed that B-12 taken orally was useless to people who lack the normal absorption mechanism involving the terminal ileum. That opinion has changed, however, as research has revealed that even in such people, when a large dose of vitamin B-12 is taken orally, a small fraction—typically around 1%—gets absorbed by mass-action transport across the gut. Therefore, you may absorb an adequate amount of B-12 by taking a big enough oral dose—a typical recommended dosage is 1000 micrograms per day. Vitamin B-12 tablets in sizes of 1000 micrograms or more are available inexpensively without a prescription and are quite safe. There is no known toxicity to vitamin B-12, even in considerably larger dosages, and even in people with normal ability to absorb the vitamin. Oral B-12 can thus be a safe, easy and effective way to get the vitamin. It may not work, however, in people with a severely shortened intestine—short bowel syndrome—that may have to use one of the first two methods listed above. Notes
on alternative oral forms of vitamin B-12 In addition to “regular” vitamin B-12 tablets, some oral preparations are marketed as “sublingual” versions, and some others in sizes of 1000 micrograms or greater are marked as “time release.” The “sublingual” versions come with instructions to hold them under your tongue before swallowing. Clinical trials show that sublingual B-12 can be effective, but no more effective than regular, non-sublingual B-12 tablets. There is no evidence that vitamin B-12 can actually be absorbed through membranes under the tongue. Thus, “sublingual” B-12 appears to be just a gimmick to sell B-12 at a higher price. It works, but is more expensive than necessary. It probably makes no difference whether you follow the instructions to hold it under your tongue before swallowing. “Time release” medications should be avoided, in general, if you have an ileostomy, as they may pass through your gut without being absorbed adequately. If you have difficulty finding non-sublingual, non-time-release vitamin B-12 tablets in sizes of 1000 micrograms or more, you can probably still find them in a 500-microgram size; then, just take two if you want a 1000-microgram dose. 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. Low-Carb/Cholesterol Diets Adapted By The New Outlook People with ostomies often have major challenges in maintaining a proper weight—for a plethora of reasons. The new “flavor of the month” in ways to stay thin is the low-carbohydrate diet. Make no mistake . . . if you reduce your carbohydrate intake, then you will lose weight. But . . . Carbohydrates are what make up the fibers, starches and sugars in foods, which when converted to glucose in the body, are the main building block of our energy. It is recommended that people eat about 130 grams of carbohydrates each day for adequate brain function. Most people consume far too many empty calories from carbohydrates. Processed sugars from foods like sodas, cakes, pies, french-fries, white bread etc. provide little nutritional value and the calories add up quickly. Never the less, extremely low-carbohydrate diets can comprise adequate grain, fruit and vegetable intake, which have been shown to fight cancer and heart disease. Not all carbohydrates are the same. Each day everyone should eat a variety of foods including whole grains, fruits, vegetables, lean meats, and low-fat dairy foods. Eating these while reducing your caloric intake and at the same time reducing or eliminating processed sugar products will result in improved health, more energy and less weight. In has already been proved. Do not forget to keep up your physical activity. A hundred pounds is not a hundred pounds. Which do you want to be . . . a hundred pound pillow all round and soft, or a hundred pound steel rod—slim and hard? Most of us with ostomies should walk about five miles a day. If you have trouble walking, you can join a local health club and swim for an hour a day. We have heard so many excuses to why people do not perform this simple daily routine . . . you know them all. It is your life. You must decide if you want to invest the limited time in this life you have been given here exercising your body so that you feel healthy. You know you should! And another thing: The American Heart Association still recommends that dietary cholesterol intake be limited to an average of no more than 300 mg/day. If your diet is otherwise low in cholesterol, an egg a day can be eaten. It has become clear that excluding high-cholesterol foods from the diet has little benefit and experts say an egg a day is OK. Eggs are inexpensive, highly nutritious, easy to prepare, easy to chew and are a convenient source of high-quality protein. Egg yolks are naturally high in an absorbable form of lutein, which helps prevent cataracts and macular degeneration. Lutein is not made in the body so it needs to come from diet. There is evidence that omega-3 fatty acids can help prevent stroke, blocked blood vessels and coronary heart disease. There are currently eggs available, which include an increased amount of omega-3, lutein and vitamin E due to adding flax seed to the hens’ feed. Obtaining your vitamins, minerals and nutrition from foods is the natural way to good health. Supplements may be necessary, if prescribed by your doctor, but most are not absorb the way you think by the body. If they are absorbed, they often overwhelm the body making it difficult or impossible for the body to obtain the many other vitamins and minerals it needs for good health. 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! |