|
April 2009 Last
Month’s Meeting We had a wonderful pre-spring day to have our March meeting. Our attendance has grown over last year, perhaps because of the improved parking at Sunrise of Park Ridge or our magnetic personalities. Our meeting featured innovations, inventions and customized techniques our members use to manage their pouching systems. People would present ways, which might improve the quality-of-life of someone with an ostomy. For example, three people showed us customized pouch covers they use to protect the skin under the pouch from heat rashes and moisture buildup. They were all quite unique and something one had to see for him/herself. Many people have a special plastic bag they use to dispose of the used pouching system. The variety of brands and types are an inspiration to all of us to use our imaginations to address common ostomy issues in a unique way so as to allow us to live life to the fullest. We even had solutions to some silly situations. One person asked how to keep her pouch dry when swimming. We pretty much all felt that one should expect to get one’s pouch wet while swimming. To keep it dry after coming out of the water it was suggested to perhaps use a separate pouch, if using a two-piece system, while in the water and then snap on a dry one when getting out, or simply to wipe the wet one with a towel to dry it. After all, the pouch is just made of plastic. We had special guests attend our meeting from Hollister, Inc., which included Lisa Bain and Donna Campbell, both who specialize in answering calls to Hollister from people with questions about ostomy management. Lisa just happens to be the mother of Ally of whom “Ally’s Law” was passed in Illinois. The law more or less requires businesses to allow a person to use their washroom in case of a personal emergency, even if it is a private one not usually open to the public. (See the article in this newsletter about how this law is being pursued in Washington State.) Just to remind you . . . after over thirty years of conducting our general meetings at Lutheran General Hospital, we have moved four blocks away. We now meet at Sunrise of Park Ridge (an extended care facility), just north of Dempster St. on Ballard Rd—drive across the street from the hospital north three blocks then west one block. In addition, we meet on the third Wednesday of most months instead of the fourth. Be sure to bring some bakery goods for our Hospitality Table for everyone to share whenever you have a special day you want to celebrate. See you in April.
New Meeting Location (General Membership Meetings are now held on
Wednesday at 7:30 PM on the third week of most months.
OAGC Meeting Dates
for 2009 April 15—Our 34th Anniversary Celebration! Rhoda Gordon, a founding member of our group and still active in its management, had the idea that we should all come to this anniversary meeting with a sample of our pouching system taped or pinned to our clothing. We have never done this successfully before and expect that today is that day. I will have mine proudly on my tummy, how about you? May 20 June 17—Connie Kelly July 15 August 19 September 16—Bernie
auf dem Graben October 21 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 For information regarding this special
ostomy group serving SW Sub All meetings are held at April
20 Little Company of Mary
Hospital, May
18 Evergreen Park, Mary Potter Pavilion, June
16 Lower Level, 2850 W. 95th St. 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 . Northwest Community Hospital An ostomy support group formed last year at Northwest Community Hospital in Arlington Heights. They wish to extend a welcome to all of our readers to visit them. The WOC nurses at the hospital lead the group. For more information, please contact Diane Davis-Zeek, 847-618-3215, ddavis@nch.org . They meet every other month on Thursdays
about NW Comm Hospital Meeting Dates for 2009 June 11 August 13 October 8 December 10 CCFA Rejects Ostomy Support On Saturday, April 4, we were to participate, for the 10th year in a row, in the annual Crohn’s and Colitis Foundation of America’s IBD Patient and Family Symposium. However, we did not. It seems that CCFA only saw value in our participation this year if we would start paying hundreds of dollars to attend. You must understand that the people who volunteer to represent us do so by giving up their Saturday, usually paying their own parking, about $20, and talking enthusiastically all day about what it is like to live with an ostomy. Over 1000 people attend and most talk to us. It is exhausting, yet we do this good work cheerfully for the benefit of others. Our participation offers people with ulcerative colitis or some with Crohn’s disease a look of how one might live if he/she chose the surgical cure. It was always an emotional experience to see relief in someone’s eyes when he/she realized the quality-of-life he/she could have after ostomy surgery. CCFA has become primarily a fund raising
organization. We thought they valued
our unique contribution. Apparently,
it was all about the money. Make a Difference Forwarded By Dave Rudzin An Edmonds woman shows courage in the face of a
debilitating disease. "I used to
think our legislators didn't listen to the seemingly small problems of the
everyday citizen, not true," said Lois Fink. A
sufferer of Crohn's disease, Fink knows the humiliating, degrading experience
of having to beg to use the facilities.
Pleading with store employees to use their restroom while being aware
that precious moments were being wasted and the possibility of having an
accident in the store was fast becoming a humiliating reality. Fink asked herself, what could I do to help
others not to have to go through this embarrassing process? After
meeting Ally Bain and her mother, Lisa, and being inspired by their courage
and guts to get legislation passed in Illinois, Fink contacted Rep. Liias via
email January 2008. She wanted to
discuss considering passing a similar law in Washington State that could be
modeled on the Illinois law, known as Ally's Law, named after Ally
Bain. Fink told of her surprise comment to Liias
after he asked her for background information, that his phone call was better
than a call from Oprah, elicited a hearty laugh from him. HB1138
was introduced by Rep. Marko Liias (D-Mukilteo) on January 14, 2009 to help
assist the approximately 30,000 people in Washington State who suffer from
Crohn's disease or ulcerative colitis, better known as Inflammatory Bowel
Disease (IBD), those with an ostomy, irritable bowel syndrome, and other
individuals with a medical condition that necessitate the use of a retail
store's "employee only" bathroom in an emergency situation. Early
on Liias worked with retailers, listened to their concerns and included restrictions
in the legislation they needed to ensure their support. These restrictions are very similar to
those listed in the Illinois restroom access act. The
bill requires three employees be present at the time the request is made, and
does not require storeowners to make improvements or modifications to their
restroom. Banks, financial
institutions and businesses dealing with sensitive material are generally
exempt it is means customers would have to enter secure areas to reach the
restroom. Customers cannot hold a
retail owner liable if they happen to trip and or fall going to or coming
from the restroom. Individuals
with Crohn's disease or ulcerative colitis typically experience sudden and
urgent diarrhea, extreme abdominal pain, fever and weight loss from
malnutrition. The urgency to have
access to a bathroom can make the activities most of society takes for
granted going out to dinner, taking a leisurely walk through the park, going
to the movies, or shopping. Those
who may require use of the retail store's restroom under the proposed law
will be required to carry documentation signed by their physician,
identifying the medical condition on a form created by the State Department
of Health. Fink,
aware of retail owners' concerns, stresses this legislation isn't intended
for the general public to rush into stores asking to use their bathroom. Instead, this is a compassion bill
extended to Washington State constituents with these medical conditions, which
will raise awareness and sensitivity. Fink
who now has an ileostomy due to Crohn's disease, is a long-time advocate for
those with inflammatory bowel disease and those who have undergone ostomy
surgery, a surgical procedure where all or part of the large intestine and
rectum are removed, a portion of the bowel is brought to the surface through
an incision in the abdomen, and a small pouching system collects fecal
matter. She put the surgery off due to
fears and myths surrounding ostomy surgery.
"To say my life is 180 degrees better than with active, chronic
Crohn's disease, is an understatement," said Fink. The bill is currently in the Senate
Judiciary Committee. A Different Point
Of View Shaz’s Internet Site,
Why did this have to happen to me?
I don't know if I can make it through this. Here I am recovering from a major surgery,
with a new hole in my body through which I am supposed to go to the
bathroom. How unnatural is that? Nevertheless, the doctor says this was the
only way to relieve my symptoms, and I did not know how much more of those I
could have taken either. Well, I have
time to think about it as I stare at these hospital walls. Moreover, I do feel better, or will once I
recover a little more.
Having a surgery is bad enough, but then to have to live with this
extra hole. Just what am I going to
tell people? Maybe nothing in most
cases, as they will not know the difference.
But, somebody is bound to find out.
Are there too many places that I will not be able to go, or things I
cannot do that I did before? At least
if I want to keep any dignity. I'll
have to know where all the public restrooms are ahead of time. Yuck, just the thought of using them is
disgusting.
It may be worse having strangers know about my condition than my close
friends may. My friends may understand
if they are really my friends.
Nevertheless, strangers will really make fun of me. I know they will stare and laugh behind my
back if not to my face. Oh, and no
more swimming in public pools . . . I'll just have to keep my clothes on all
the time when I am around anyone. No
more macho sunbathing . . . but still, the bathroom problem remains.
It's hard to imagine that people can actually live like this. However, I have read that this was the
normal condition for people just a few generations ago. Only those with certain diseases had ostomies. Everyone else had what I have now: a hole
in the end of his or her rectum. Yuck,
just the thought of going to the bathroom the first time is upsetting
me. Then I will have to try to clean
myself up afterwards . . . no nice little pouch to empty right here on my
side anymore. How in the world am I
supposed to keep myself clean? And to
have to do this in public restrooms—well I don't think I am ready for that
yet.
To think you had to be sick in order to get a nice little pouch to
poop into. I guess when that became
faddish and people began having elective surgeries are the time when it
really caught on. Then of course,
evolutionary genetics took over, and people were just born that way. Nevertheless, how could anybody even think
of going to the bathroom through the rectum, when this bag makes it so easy?
Toilet paper! I will have to
stock up on that. I doubt the public
restrooms will ever have any, especially the men's bathroom, as there is no
need for it except for freaks like me.
Looks like I will have to carry my own with me wherever I go. Oh man, and it will have to hurt sometimes
when the diarrhea gets bad. Who wants
to keep wiping your butt when it gets sore?
But, what choice will I have? I
know they make salves for skin conditions and rashes. Maybe I can find something to put on after
I go. How disgusting. People really did this all the time and
considered it normal. I'll just keep
telling myself that and maybe I can get through this.
I hope that I can find a support group, and I bet there are people on
the Internet like me since everyone has a computer now. At least, I can talk to someone else in my
condition that might understand. But,
I will bet there will be people who won't want to come near me. Certainly, they won't want to shake hands
with me if they know about my condition.
I would not want to either, before this happened to me.
As long as people do not know, I will be okay. But, who wants to live with such a secret,
yet it is not something I want to talk about.
Hey, everybody I have an ass hole!
They tell me that used to be a nasty slang term used to describe
people you didn't like. I can see why,
although, the term O-hole makes much more sense now.
Oh, my . . . sex. I have not
even thought about that yet. Right
now, I am so sore from the surgery it does not matter. However, who will want to have sex with me
with the chance of poop running out of my butt at anytime? In addition, will I want to expose myself
to anyone? They will have nice clean
holes in their sides, while I have this thing way behind me. I will not even know if I am clean or
not. Moreover, it must look
atrocious. Even if I find someone who
really loves me, will he be able to be intimate with me? Could I have been intimate with someone
like me before this happened to me? I
doubt it. I sure hope there are people
out there who are more understanding than I was.
Oh, why did this have to happen to me?
I just want to be normal and have an ostomy like everyone else! Terry A Personal Reflection By Muffy Truscott; forwarded by Re-Route,
As a certified visitor with the local ostomy chapter, I have had many
occasions over the years to visit patients who have just undergone surgery,
leaving them with a temporary ostomy.
Usually a temporary ostomy is done on an emergency basis, as the
result of a blockage or obstruction in the colon, where stool cannot pass
through. This may be the result of
diverticulitis or cancer of the colon and sometimes-inflammatory bowel
disease or Crohn’s Disease may necessitate a temporary ostomy in order to
allow the bowel to heal.
The intent is to reconnect the bowel later and many patients are told
by the attending physician to expect to have an ostomy for anywhere from
three to nine months. My first thought
as I headed off to visit a patient with a temporary ostomy was that this
would be a piece of cake and the visit would involve many questions about
management of the ostomy. I also
figured that the patient would be greatly relieved knowing they would not
have to deal with an ostomy on a permanent basis.
Boy was I wrong! This
particular patient was angry beyond all belief, upset about what had happened
to her and definitely not prepared to deal with anything as disgusting as a
colostomy. To be sure, she was not
angry with me but the medical profession as a whole suffered her wrath and it
was quite evident that the nursing staff gave her a wide berth. She was not going to like this ostomy
thing!
Not having encountered this kind of reaction before, I was not exactly
sure how to proceed but I found myself listening to her frustration and
empathizing with her situation. This
calmed her somewhat and she told me that I was the first person who had not
treated her fears about the ostomy lightly.
She felt people did not take her seriously because hers’ was only a
temporary situation.
The visit actually went fairly well after that and although she was
still angry regarding many issues, I left feeling that she would manage her
colostomy quite well in the short time she would have it. It impressed upon me that people with
temporary ostomies struggle with the same fears and anxieties that all of us
who have permanent ostomies do. In
addition to this, because the surgery is performed on an emergency basis,
they have absolutely no time to prepare themselves for the eventual outcome,
the ostomy. Do I sound like an
all-knowing and understanding saint?
Well, I do not feel like one on some of these visits.
In general, I find most of those who have just had surgery resulting
in a temporary ostomy to be very upset and unusually angry. They just had not expected this. I am sympathetic, as mentioned before, but
the thought also crosses my mind, “Deal with it!”
Recently, I paid a visit to a woman after her emergency surgery who
asked me how I could tolerate having a permanent ostomy. At that moment, it seemed bizarre that I
should be counseling her when I am the one who has to live with this thing on
a full time basis. She could look forward
to a reversal. On the other hand, hard
as it may sound, her comment actually helped me, and I did not hesitate a
second for the answer. I know I cope
with it because I would not be here if it were not for my surgery for
colorectal cancer. I
was 37 at the time and I suppose I had every reason to be angry . . . but I
wanted so desperately to live. The
surgery and colostomy gave me a second chance at life for which I am
grateful. I would like to remind some
of the people who have to live with temporary ostomies that their surgery
likely saved their lives too and that a few months are not such a long time
to live with an ostomy.
However, I also have to remember how very frightening this surgery is
and how it is mistakenly still considered such an awful thing to have an
ostomy. Despite our attempts to
educate the public about the normal lives we lead, a healthy normal body—the
way God originally made us—is still preferred. Therefore, I internalize my thoughts,
sympathize and try to make the patient feel better about coping with their
new situation. A question still
lingers, why do some people marvel at their good fortune while others retreat
into anger and disgust? We humans are
truly a complex lot. Can Ostomates Donate
Blood? By Bob Baumel, North This is an updated version of an article
I originally wrote for our August 2006 newsletter. I am including this missive because I have
noticed that some of the newsletters from other ostomy groups have been
printing the horror story referenced in my first paragraph below. Ostomy
newsletters sometimes publish warnings that people with ostomies, especially people
with ileostomies, should not donate blood.
An often-cited horror story concerns a person with an ileostomy who,
after giving blood, developed a two-day case of dehydration that could not be
relieved by drinking fluids, followed by a kidney stone that developed ten
days later. I
am one person with an ileostomy who has always ignored those warnings. I donate blood regularly and have never
suffered any ill effects. My object in
this article is to examine this topic rationally, instead of relying on an
anecdote that may be more of an urban myth than an actual event. My
conclusion is that most people with ostomies can probably donate blood
without any problem although, if you have just had surgery, you may need to
wait a while; i.e., you may not be eligible to give blood until a year after
surgery. Of course, every person is
different, and may have a variety of other health challenges in addition to
the ostomy itself. It is not possible
to make a blanket statement for all people with ostomies. Therefore, you should check with your
doctor if you have any doubts about your ability to give blood. The
question in the title of this article involves two issues: Is giving blood
safe for a person with an ostomy. In
addition, will the blood from a person with an ostomy be accepted by the
blood bank? In
researching these issues, I have spoken with the head nurse at my local Red
Cross blood collection center, and checked the eligibility guidelines on the
American Red Cross website at www.redcross.org.
It should also be noted that rules for
donating blood vary in different countries.
My comments on this issue apply mainly to the When
I wrote the first version of this article in Aug 2006, my lifetime total
consisted of 79 whole blood donations. Now, as of Feb 2009, I have given whole
blood 83 times and donated four double red blood cell (2RBC) donations. Most of my donations have been made after
my permanent ileostomy surgery, which was done in 1992. Prior to that, I donated at least five
times during the four years while I had a J-pouch—my J-pouch failed due to
chronic pouchitis and was replaced by a permanent ileostomy. Before that, I even donated a few times
while I had ulcerative colitis, although only during the first few years of
the disease, while it was still controlled fairly well. On
the first question, whether giving blood is safe: Dehydration is certainly a
valid issue, especially for people with ileostomies and others who have lost
their colon, including people with J-pouches and Kock pouches. The colon normally plays an important role
in absorbing water. People with
urostomies also need to remain well hydrated to maintain urinary health. Therefore, they should drink extra fluids
to stay well hydrated. Dehydration
was the villain in the horror story cited at the beginning of this article. Severe dehydration may result from various
causes, such as an ileostomy blockage or acute gastro-enteritis accompanied
by vomiting and diarrhea. By comparison,
the dehydration resulting from a blood donation is relatively minor. The quantity of fluid removed—about half a
liter, or about one pint—is far less than one would lose in an acute blockage
or gastro-enteritis episode. So,
if one is careful to hydrate well before coming to the blood collection
center, drink all the fluid that is offered at the center, continue to drink
lots of fluid afterward, one probably will not have any problem with
dehydration. Even so, if you think you
are prone to kidney stones, or if you have any other concerns about the safety
of giving blood, check with your doctor. Meanwhile,
if you are still concerned about dehydration, another option is available
now, namely, the newer aphaeresis donations.
Components of your blood are separated by specialized equipment while
you donate, and some of these components are returned to your body in these
procedures. I have donating with one
of these methods, namely, double red blood cell (2RBC) aphaeresis, for over a
year. In this technique, a double unit
of red cells—twice as many as in a normal donation—are taken, but everything
else—including the plasma—is returned. In
addition, enough saline is pumped into your body to compensate for the volume
of cells removed. In this way, there
is no net loss of fluid and assuming you also drink something at the blood collection
center, your fluid level when you leave the center will probably be higher
than when you arrived! As a result,
these 2RBC donations do not cause any dehydration. In spite of losing a double unit of red cells,
one may not feel any of the tiredness afterwards that one might experience
after a regular blood donation. It
should be noted that the specialized equipment required for these aphaeresis
donations is not available at all local blood collection centers. To be eligible for the 2RBC procedure, one’s
hemoglobin—iron—level needs to be somewhat higher than for a normal blood
donation.
Let us consider the second question, whether a person with an ostomy’s
blood will be accepted: Before donating, one needs to answer a list of
questions—the donor history questionnaire—that seems to grow longer every
time I donate. One will find that none
of the questions require mentioning that the possession of an ostomy on your
tummy. Having an ostomy does not disqualify
you from giving blood. In addition, if
any worker at a collection center tries to tell you otherwise, that person is
misinformed. The
questions that need to be answered refer to specific medical and physical conditions
that may make a person’s blood unsafe to donate. Some conditions, which generally have nothing
to do with having an ostomy, can disqualify a person permanently. Some may require you to wait for a time
before giving blood. If you have just
had surgery within the past year, especially if you received a blood transfusion
during that surgery, you probably will not be eligible until a year after the
surgery. An
important special case involves surgery for cancer. As we know, many ostomies are performed due
to colon or bladder cancer. When I first
wrote this article in 2006, most cancers required a waiting period of five
years. In 2009, that waiting period
has been reduced to one year. Current
guidelines on the American Red Cross website say, “Eligibility
depends on the type of cancer and treatment history. If you had leukemia or lymphoma, including Hodgkin’s
disease and other cancers of the blood, you are not eligible to donate. Other types of cancer are acceptable if the
cancer has been treated successfully and it has been more than 12 months
since treatment was completed and there has been no cancer recurrence in this
time. Lower risk in-situ cancers including
squamous or basal cell cancers of the skin that have been completely removed
do not require a 12 month waiting period.” If
you currently have a chronic disease such as Crohn’s disease or ulcerative
colitis, you are probably eligible to give blood. Remember: I actually donated a few times while
I had ulcerative colitis. On this
topic, the Red Cross guidelines say, “Most
chronic illnesses are acceptable as long as you feel well, the condition is
under good control, you have an adequate hemoglobin level, your temperature
is normal when you come to donate, and you meet all other eligibility
requirements.” In
conclusion, most people with ostomies are probably eligible to give blood,
although you may face a waiting period if you had surgery very recently. Of course, you may have other health conditions
that make you ineligible. But it cannot
hurt to try! At the collection center,
medical professionals will review your health information, in a confidential setting,
to determine if you are actually eligible. Editor’s
note: We endeavor to provide you a
differing opinion than the current advice offered by the physicians and WOC
nurses that regularly contribute to our group. Be clear . . . it may be extremely
dangerous and risky for someone with an ileostomy to donate blood. Check with your doctor. Urine Salt Crystal
Deposits By Linda Sanders, CWOCN
Urine salt crystal buildup around urinary stomas is one of the most
difficult skin care problems I find with people who have urostomies. Urine secretes a certain amount of salt,
but whether the urine is acid or alkaline determines the amount
secreted. An alkaline-based urine
secrets more salt than an acid-based urine; thus, we have more
salt-crystal-buildup when we have an alkaline urine.
How can you tell if you have urine crystals? First, they can be seen as a growth, white
or light brown in color, around the base of the stoma. The stoma and the area, which the growth
involves, are very likely to be tender and sore. Sometimes the stoma will be completely
covered by the crystals and can no longer be seen.
What are some of the underlying factors, which cause urine crystals,
other than alkaline urine? In my
opinion—with most patients I have seen with this problem—two factors are
usually dominant. The stoma opening in
the skin barrier in all cases was too large, and these patients were wearing
a pouching system designed primarily for a fecal ostomy. These two aspects may not always stand
true, but in those cases I have seen, these two factors were present. Other aspects include those patients who do
not use a night drainage system, thus allowing urine to remain in the pouch
while they slept. This practice
continually baths the stoma with urine at night. Moreover, personal hygiene—not only on the
skin area around the stoma but the cleaning and proper care of the pouching
system—was performed poorly.
Our next question must be what to do in case one has a
urine-crystal-buildup problem. I will
list these solutions in steps: ü
Determine
the circumference of your stoma and cut your skin barrier to the correct
size; i.e. not so big as to allow your peristomal skin to show, and not so
small as to more than just “brush” the stoma. ü
Change
your pouching system twice a week at least.
It is surprising how many people only change their skin barrier when
it starts to leak. The goal is to
change it before it leaks. ü
Every
time you change your skin barrier, bath your stoma with a vinegar and water
solution. Use one-part vinegar to
three parts water. Bathe the stoma for
several minutes with a cloth. This
solutions may be used between changes by inserting some of this vinegar
solution in the bottom of your pouch—a syringe may be used for this—and then
lying down for about 20 minutes to let the solution bathe the stoma. ü
To
keep control of the situation, change the alkaline urine to acid urine. The easiest and most successful way is by
taking Vitamin C orally. The dosage
will depend on your age, but the normal adult dosage is 250 mg four times
daily. Be sure to consult your
physician before taking oral medications. If you follow these procedures, you should
have no further concerns regarding a urine-crystal-buildup. However, if you do begin to see them again,
take action immediately before trouble starts. My Change of Life—Style By Judy Lippold, Rosebud
Review
Most women go through their “change of life” gradually, over a number
of years. I experienced that
transition also, but the change I am describing now was quite different from
the one-programmed by Mother Nature.
This change in my lifestyle occurred almost overnight, because I
stopped irrigating my colostomy.
Thirty years ago, I had surgery for rectal cancer resulting in a
sigmoid colostomy. Before I left the
hospital, I was taught to irrigate my colostomy. “You will want to do this daily or every
other day”, the ostomy nurse said. I
did as I was told.
Over the years, I managed my altered elimination process as best I
could, try new techniques now and then, and acquire improved equipment
occasionally. I adjusted my diet as
needed, and always learning, learning, learning how to communicate with and
listen to my body. I made good use of
one of the most common methods of learning anything: trial and error. Sometimes I mused about what it might be
like not to irrigate. However, a small
voice within me cautioned against tampering with success, so I continued with
my usual colostomy management procedures.
Enter calcium. During an annual
physical examination, it was determined that I had rather severe
osteoporosis, the weak-bone disorder.
I always had been conscious of needing calcium in my diet, but every
time I attempted to increase the amount by taking calcium tablets, I
experienced constipation extreme to put me in a “bind” and make my
irrigations miserably ineffective. My
simple solution was to discontinue the added calcium.
With my new diagnosis of osteoporosis came the doctor’s strict orders
to, amount other recommendations, ingest 1500 mg of calcium per day. I decided to do this by consuming
calcium-rich orange juice, soy mike, skim milk plus soft calcium “chews” that
successfully imitate delicious candy.
All this, I hoped, would skirt the constipation problem by avoiding
the more obvious calcium supplements I had tried previously.
Suddenly I—a 25-year expert—in my personal colostomy management,
became an insecure novice needing help, advice and encouragement from my
ostomy nurse and my fellow people with colostomies. My learning began anew, and I heard my body’s
message loud and clear: “Now pay
attention to my needs. Address my
issues sensibly and we will get along just fine.” As I adjusted to the physical and
management changes, I was experiencing, I realized my thoughts and attitudes
were changing too. I no longer had
“mono-bathroom phobia,” a term coined years ago by a writer who said she was
reluctant to stay in homes where there was only one bathroom—and she did not
even have an ostomy.
Since I no longer had to spend two-hours or more in the bathroom while
irrigating, I felt differently about early morning appointments or late night
meetings. Why? Well, I could be out at 7:00 a.m. without
having to arise at 4:00 a.m. to do so.
I had learned early on during my irrigating years that not only could
you not fool Mother Nature; you could not hurry her either. Even a covert wish for the process to go
faster would usually shut down the irrigation completely—an impressive
demonstration of the mind/body connection.
Having company in my home no longer posed a challenge for me. Of course, I have three bathrooms in my
home. It had been awkward when I, the
host, would disappear for hours at a time.
Long-distance train travel, a favorite mode of transportation for my
husband, and me became much more pleasant to contemplate—no more need to
spend hours jostling around in than tiny tiny Amtrak restroom.
Another travel plus . . . less ostomy gear to carry on. There are no longer any issues. Sharing a bathroom in a bed and breakfast,
in a college dormitory or an Elderhostel is not a challenge anymore. The thought of visiting a country with
questionably pure water is not so worrisome.
There were advantages to irrigating certainly . . . once a day and
that was that. I greatly appreciated
the clean pouch condition that I experienced for many years. As I move along this new path in my ostomy
life, I sometimes speculate whether I would choose to resume irrigating. Moreover, would I be able to perform it
successfully? I would have to weigh
seriously the pros and cons, and listen to advice from my body. I wonder what I would decide? Rash
around Stoma UOAA Discussion Board Q I have had a rash around my stoma right after my ostomy surgery in September 2003. My ostomy nurse tried various pouching systems to correct the problem. She also used Kenalog spray and Triamcinolone acetonide cream. I was on prednisone for six months and even developed dark blotches on my arms and a skin rash all over my body. I saw an allergist who found that I was allergic to epoxy resin—found in barrier tapes and plastics—and neomycin sulfate, which is found in many lotions and creams. Does anyone know of any pouching system that does not contain epoxy resin? Has anyone had any allergy reactions causing skin rash from use of a pouching system, Kenalog spray or corticosteroids? A Your post is intriguing on several counts: 1. A true sensitivity or "allergy"
to epoxy resins, which are commonly used in the manufacture of many plastic
and adhesive based products, places you at significant risk for any trial and
error approach to managing your ostomy.
Therefore, I strongly encourage you not to try suggestions made on
this board, no matter how well intended, without having either your WOC nurse
or your allergist work up a careful testing protocol of any products you plan
to use around the ostomy. 2. Ideally, you should have been tested with
appropriate patch tests to rule out known or suspected offending
agents—usually the back or the forearms are sites used for patch testing. It is important that your stoma site not be
inadvertently subjected to trial and error use of products. 3. Not all ostomy products or brands carry the
same sensitivity risks; however, you should "test" each new item on
your back or forearm, as instructed by a competent allergist or dermatologist
or experienced WOC nurse. After a
product has been cleared for possible use, then try using it for a brief
period at a time around the stoma site.
By this I mean allow the skin barrier or pouch to remain in place,
without leaks, for perhaps two or three days at a time and then see how your
skin behaves. If the product is
performing well, then gradually prolong the wear time up to a level of days
suitable to you and your budget. 4. You should avoid using any additional tape
frames around the pouch or skin barrier.
Some company products come without the tape frame—search out these
options. In addition, it sounds like
you would benefit greatly from using cotton pouch covers to keep the plastic
of the pouch from lying against the skin.
Sweat, often exacerbated by plastic lying against the skin, will
aggravate the potential for skin rashes of all types. Mike D’Orazio, ET Is Bleeding Normal
for a Stoma By Gwen Turnbull, WOC
nurse, Cleveland Clinic
It is normal to see a bit of blood on your washcloth as you cleanse
around the stoma. The tissue from
which the stoma is fashioned is very much like the lining inside your
mouth. You know how easy it is to nick
your gum with your toothbrush and cause it to bleed.
It is the same with your stoma.
If you injure your stoma, it will bleed. If you take blood thinners or other
medications; e.g., aspirin or aspirin containing medication, your stoma may
bleed more than normal. If you have
another condition, such as portal hypertension or cirrhosis of the liver or
another live condition, the stoma can bleed excessively. The bottom line is that if you cannot stop
stomal bleeding with 15 minutes, or the bleeding is excessive, you should
seek medical attention immediately. |