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Volume 35, Number 3 December, 2007
HOW TO TELL SOMEONE YOU
HAVE AN OSTOMY
Via: The “Ralph Kaye” San Antonio, Tx. Chapter
In this world of technological advances, there are all kinds of people
clamoring for information about you. Here are some questions you should ask
yourself when giving out personal information. “How will I benefit from certain
persons having certain information? How will the person asking the questions
benefit from my answers?” Thinking back to those critical days of adjustment
just after your ostomy surgery, you may only have wanted people around you that
you trusted and loved. At that time, you may have needed the support of a
spouse, friend or children. In order for those people to support you, they
needed to know about your ostomy surgery. By sharing this information you were
helped through what for some was a very difficult time. Once you were home,
friends and neighbors started to call and then to visit when you felt up to it.
The question arose as to “What do I tell them about my surgery?” Probably, you
thought about each person and his or her relationship with you—the closeness you
felt for that person and his or her relationship with you—and maybe, the
sincerity of that person’s concern for you. After considering these factors, you
may have made a decision to tell the person about your ostomy. Based upon the
reaction to your story, you made another decision—whether to tell about your
ostomy to those who inquired about your health. As your health progressed and
you began to return to work, the question arose again. “Should I tell my
employer about my ostomy?” Here again a couple of questions needed to be asked.
“Do I need support from my employer because of my ostomy? How does my employer
knowing about my situation help me?” This becomes situational. For example, if I
work an assembly line and must take prescheduled breaks, and I’m still adjusting
to emptying my pouch, I may or may not need a different schedule for breaks than
those enforced. My employer needs to know that I’m not just breaking the rules,
but have a real need. Whether to tell someone you have an ostomy becomes a
matter of who has a right to know, and how you will benefit from their knowing.
To tell someone you have an ostomy becomes clearer when the benefits are
weighed. Simply explain that you had some surgery for whatever reason you had
your surgery, and it necessitated having an alternate route made for emptying
either your bowels or bladder. By having had this surgery you were given the
chance to increase the length and quality of your life. Share with the person
whom you have decided has a right to know about your surgery, using pamphlets
and brochures available from the United Ostomy Association and other sources.
Educate those persons you believe have a vested interest in your well being.
OSTOMY MYTH SERIES
by:Barbara Skoglund, Via: Chicago’s Northern Suburbs Ostomy
Website & Philadelphia UOA Journal
I had ulcerative colitis for 14 years before I became so ill that my colon had
to be removed. I was so afraid of having an ostomy that I postponed treatment
and nearly died. Knowing my feelings about ostomies, my doctor performed a
rarely done straight ileoanal anastimosis when he could not make me a J-pouch. I
lived through three years of hell with that “straight shot" and had an ileostomy
installed in December 1996. It was the best Christmas gift I ever gave myself! I
had many misconceptions about living with an ostomy and I frequently encounter
others with those same misconceptions. After one person too many told me that it
would be better to be dead than to live life like me, I decided to start a
series of short articles for the internet newsgroups:
alt.support.ostomy and
alt.support.crohns-colitis covering the facts and fiction of ostomy life.
Ostomy Myth # 1: People with Ostomies Smell Bad
Modern ostomy appliances are made of light weight odor proof materials. No one
has ever walked up to me, sniffed and said, “Boy you smell terrible. You must
have an ostomy.” I spent the first year of living with an ostomy thinking
everyone could smell me. Every time we drove past one of the many Minnesota cow
pastures, I was sure it was me— it wasn’t. Some ostomates worry about the smell
when they empty. Our stool isn’t any more toxic than other people’s — We just
empty up front— where our noses are. A touch of the flush handle and away goes
the smell. The roots of this smelly myth probably stem from old time appliances.
Early ostomy supplies were made from non-odor proof materials. Many ostomates
had trouble controlling the odor from these old time appliances. Thank goodness
for modern technology!
Ostomy Myth # 2: New Clothes Optional
While the shop-a-holic ostomates among us, myself included, may harbor thoughts
of having a perfect excuse for buying an entire new wardrobe—it’s really not
necessary. I have only had to make one change in my attire as a result of my
ileostomy. I used to wear French cut undies and now wear briefs. It’s just more
comfortable for me that way. There are some men whose stomas are poorly placed
in at the belt line. They frequently find suspenders easier to deal with than
belts. If you have an experienced ET nurse who pays attention to such
things—stomas at the belt line can be avoided. What about spandex, skin tight
leather, and bikinis? None of those items were in my wardrobe to begin with. But
I do know a young woman from
alt.support.ostomy who still wears a bikini— she just found a new style. I’m
sure every ostomate has stories to tell about folks who stared and stared and
still couldn’t see our pouches through our clothing! So— if you find yourself
facing ostomy surgery, don’t waste time worrying about wearing muu muus or
overcoats. At the most, you may have to buy a new swimsuit or some new undies.
Though feel free to be like me and use it as an excuse to buy more clothes!
Ostomy Myth # 3; Somebody to Love
A couple of times during my single days, I placed personal ads as a way to find
potential mates. Before I’d write my ad, I’d sit down and list all the qualities
I was looking for in a mate. I wanted a partner who was smart and funny, someone
who shared my interests, who shared my values, etc. NO WHERE on that list did it
mention “my partner must not have an ostomy.” But I used to think that no one
out there would be interested in me if I had an ostomy. I was convinced that
ostomates sat home, stinking in baggy clothes (see myths one & two), lonely and
friendless. You’d think I’d still harbor this myth considering my first fiancé
took a walk when I had my temporary ileostomy while my ileoanal anastimosis was
healing. But it was pretty clear that we didn’t split over how I went to the
bathroom. We split because we weren’t right for each other. I’ve since found my
soul mate and life partner and he couldn’t care less how I go to the bathroom.
What he cares about, is that I’m healthy! You see, he loves me, not my body or
my bowel. BUT, BUT, BUT don’t single ostomates have a hard time with dating?
Some do and some don’t. However, what I’ve found is that those who don’t date
are too afraid to get out there and try. And yes, I wouldn’t be surprised if an
ostomy limited someone’s casual exploits. But—if you’re interested in finding a
life partner who loves you,, not your shell—then an ostomy won’t stop you. If
anything, it’s a good test of what a potential mate is really interested in. I
never think to myself, “Will you still need me when I’m 64?” I know my husband
is with me for the long haul.
CROHN'S DISEASE AND ULCERATIVE COLITIS: WHAT YOU NEED TO KKNOW
Although Crohn’s disease and ulcerative colitis are complicated diseases with potentially
serious consequences, with prompt and proper treatment most people diagnosed with
either of these conditions are able to lead normal, productive lives.
Via: Healthy Perspective, Prince William Health System by Michael C. Brown, MD
Crohn’s disease and ulcerative colitis are
forms of inflammatory bowel disease (IBD)
and are distinct from Irritable Bowel Syndrome
(IBS) explains Dr.Michael C. Brown,
a gastroenterologist who practices at Prince
William Hospital. Crohn’s disease and
ulcerative colitis are both caused by
immune system dysfunction. In the case of
ulcerative colitis, the body’s own immune
system attacks the lining of the colon, while
in Crohn’s disease problems can develop
not only in the colon but also in the small
intestine “and in unusual cases, the stomach
and the esophagus,” says Dr. Brown.
The exact cause of these diseases, says
Dr. Brown, is not clear. “Both diseases are
more common in developed countries,
which is true with any autoimmune disease,”
he notes. “There is a lot of thought
and research going into the idea that the
body’s immune response is triggered by a
bacteria and then misdirected against the
body itself.” In addition, both diseases are
influenced by genetic factors.
Crohn’s disease and ulcerative colitis
usually develop in young people between
fifteen and thirty years old and older adults
in their seventies and eighties, although it
is possible to develop either illness at any
age. What can make diagnosis and treatment
challenging is that the type and severity of
symptoms can vary significantly between
individuals. Bloody diarrhea, frequent
bowel movements, and feelings of urgency
are typical for ulcerative colitis. But for
Crohn’s disease, “the symptoms really
depend on where the disease is active,”
according to Dr. Brown. “If it’s in the colon,
it can mimic ulcerative colitis. If it’s in the
small intestine you can have more problems
with abdominal pain, bloating, nausea, or a
combination of these.” Also substantial
weight loss can occur, the result of chronic
inflammation and poor absorption of
nutrients.
Anyone with chronic or progressively
worsening symptoms of this sort should
seek a physician’s evaluation. If Crohn’s or
ulcerative colitis is suspected, colonoscopy
and biopsy are used to properly diagnose
these illnesses. “During colonoscopy,
inflammation and ulcers can typically be
seen,” says Dr. Brown.“It can be quite severe.”
Dr. Brown notes that Crohn’s and ulcerative
colitis are typically chronic illnesses
requiring “a specific balance of medications
and sometimes surgery at some point.”
How these diseases are diagnosed and
treated is very individualized, explains Dr.
Brown. “It’s not one disease, and for each
patient it’s very different.”Dr. Brown
stresses the importance of early and proper
diagnosis to prevent long-term complications
of these diseases. “Malnutrition
can be very serious. For children, that
malnutrition can affect future growth and
development. Chronic ulcerative colitis can
lead to an increased risk of colon cancer.
And Crohn’s disease can lead to the
formation of intestinal strictures”.
Developing a good relationship with a
physician who will closely monitor symptoms
and adjust treatment accordingly is
one of the most important steps a patient
can take to manage these illnesses, says Dr.
Brown. Fortunately, he adds, “Most people
are able to go about their lives relatively
normally and deal with the disease and its
symptoms as needed.”
FREQUENTLY ASKED QUESTIONS
Excerpted from Diet & Nutrition Guide, UOA 2002, Via: New
Directions Ft. Worth TX
Q: How soon after ostomy surgery can I return to a normal diet?
A: Physicians and ostomy nurses suggest that you begin slowly, depending
upon your recovery and/or other medical complications. Add back one new food at
a time. If you experience any problems, discontinue for a few weeks and try
again.
Q: In the past, certain foods caused me some trouble with digestion. How will
they affect me since my ostomy surgery?
A: Check them out. You may find that some of those foods will continue to
be troublesome and others may not.
Q: Will my ileostomy continue to produce output even if I do not eat?
A:
Yes, the small intestine will continue to produce gas and digestive juices. An
empty digestive tract seems to produce excessive gas. Eat small meals to keep
something in the gut. Peristalsis happens!
Q: After ostomy surgery, I have gained excess weight. What happened? What
types of food should I eat?
A: The relaxation of dietary restrictions, freedom from debilitating
illness and malabsorption promotes a rapid gain in weight. Follow the same
weight reduction diet as recommended by nutritionists and dieticians. Eating
smaller quantities of a well-balanced diet and increasing water/fluid intake
will assist with weight reduction.
Q: What is meant by “low residue” diet?
A: Low-residue refers to a dietary regime which eliminates bulk-forming,
hard-to-digest or high-fiber foods
Q: Will spicy foods cause any damage to my stoma?
A: If you can tolerate spicy foods through your digestive system, the
output through your stoma should not cause any harm. The stoma is formed from
the lining of the bowel and it is tough and can tolerate those spicy foods.
Q: What effects will oral odor control medications have on my ostomy?
A: Some individuals who have a colostomy report that they experienced
some constipation from bismuth products found in oral odor control medications.
Individuals who have an ileostomy have more benefits and fewer side effects from
oral preparations (chlorophyll tablets, bismuth subgallate and bismuth
subcarbonate). Most foods do not effect an individual with a urostomy. A strong
urine odor may be an indication of dehydration and the need for increased fluid
intake. Check with your doctor or ET nurse about oral preparations and don’t
exceed the recommended dosage.
“FREE OSTOMY SUPPLIES”
Osto Group ships ostomy supplies to people who have no insurance and who reside in the United States. They also accept donations of excess ostomy supplies and list their available supplies on their website, www.ostogroup.org. The recipient pays postage and a handling charge of 10% of the list price of the shipment. Osto Group has been performing this service since 2001.
Osto Group, a member of the United Ostomy Association of America (UOAA), was founded and is still operated by Sam Eustice and Bob Pleski, who are also co-chairpersons of the Nevada County California Ostomy Support Group, which also is a member of the UOAA.
Donated supplies come from individuals, hospitals, nursing homes, and pharmacies from across the USA.
Osto Group can be contacted via a toll-free phone, 1-877-678-6690, fax to 530-432-3538, or email Sam at eme@ostogroup.org, or Bob at bpleski@comcast.net. We are happy to serve new customers and to receive new donations
INFO ABOUT POUCHITIS
By: Jen Higdon, Via: Greater Orlando/Central Florida Chapter,
UOA
It is common for people with J-pouches to get pouchitis. For those unfamiliar
with J-pouches, it is a surgical created pouch made out of the lower end of the
small intestine and connected to the rectal or sphincter area so that normal
bathroom habits may resume. The surgically created pouch sometimes becomes
infected and inflamed. This condition is known as “pouchitis”. A new study is
showing promise for people with pouchitis. A trial was conducted by Dr. Fedorak
(Director of Gastroenterology at the University of Alberta in Edmonton, Canada)
where patients were treated with a probiotic preparation, VSL#3. Probiotics are
defined as “good bacteria”, like that found in yeast or yogurt, and are tiny
organisms that improve the balance of bacteria in the intestines. Dr. Fedorak
state, “we don’t know how probiotics work. They appear to strengthen the mucosal
barrier of the bowel and improve immune function. And we don’t know which
probiotics to use, or in what combination.” This trial showed that probiotics
were able to prevent recurrent episodes of pouchitis in 85% of treated patients
compared to 0% of placebo-treated patients. Once patients had achieved remission
of the pouchitis with antibiotics, VSL#3 was able to maintain the remission.
POOR OSTOMY MANAGEMENT IDEAS
Via: GB News Review
The following are poor procedures we found some people implement to manage their
ostomy system. They are not recommended because they will yield less than
optimal results. Sometimes we all do things that seem logical at the time, but
inadvertently lessen our quality of life. A few of these are:
Using alcohol regularly to clean the peristomal skin. This may
result in itching, skin irritation and damage to sensitive tissue.
Using the same pouch too long. Seven days is the maximum recommended.
Pouches become saturated with odor which cannot be removed.
Ignoring skin problems. Always treat any skin irritations when you
change your ostomy system. Barriers covering damaged areas are made to actually
help heal them if used properly.
Wrapping the drainable pouch tail around and around the clamp before
closing it. This will not make the clamp work better. All it will do is
spring the clamp out of shape. Replace your old clamp with a new one every
month.
Letting the pouch get full before emptying . Excess weight will
separate a two-piece system and will also put too much weight on the skin
barrier resulting possibly in multiple problems. Empty the pouch at least when
it is about one-third full.
Living with unsatisfactory ostomy management. If you are unhappy
with how your ostomy system works, make an appointment with an ET nurse.
Not coming to UOA Chapter meetings. Once you figured out this
thing, sharing with others turns out to be a surprisingly good way to keep
yourself proactive and happy.
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