GLOCONTACT Vol 26 Issue 1, May, 2010
The newsletter for the Gay/Lesbian, and Bisexual Ostomate (or other type of diversionary procedure) their
Partners, Family, Caregivers and Friends
GLO Needs You
Dear Loyal Member:
This is an appeal for a financial contribution to enable the GLO Network to continue our important work - assisting fellow ostomates, their partners, family, caregivers and friends. We are financed primarily by contributions. We no longer spend time or resources managing a “dues” system to raise operating funds.
Your contribution goes directly to pay network expenses with virtually no administrative expenses. Our greatest administrative expense is the cost of producing our newsletter. All of our board members are volunteers and receive no compensation for their time and effort. This means that virtually 100% of your contribution will go towards our mission: To address the needs of gay and lesbian ostomates and assist them in living more positively with an ostomy, assist health care professionals in serving gay and lesbian ostomates; and provide information about resources for gays, lesbians, bi-sexual and trans-gendered ostomates and their family and caregivers
September, 2007 was the last time that we requested dues payments from the members and in September, 2008 we announced that GLO would no longer charge for membership. This was due to the fact that Florence Cohen, one of our very supportive members, had passed away and left GLO some money which we have invested. The investment income plus what we had in our Treasury has allowed us to continue to fund our operations until now. As a result of our normal operations our funds have been depleted to the point where we must once again ask for your donations in order to maintain our operations.
Your check should be mailed to: Eric Floyd, 2067 Penguin Ave., Akron, OH 44319-1208
GLO Wants YOU!
by Fred Shulak
The GLO Network is looking for a few good people who would like to get involved in GLO and be a part of our growth. We are planning on expanding our mailing list by contacting ostomates who are not aware of our existence. We have some ideas on how this can be accomplished, but need people who can be involved in the process.
Additionally, we are looking for someone to serve as our Webmaster. Our previous webmaster has some serious health concerns and has not be able to keep our website up to date.
The webmaster should have some experience in the
creation and editing of documents for publication, using a computer.
That would include experience using Word or Word Perfect and a publisher
program such as Microsoft Publisher. Web design skill is not a
requirement. The person should be comfortable using computers, and have
basic writing and composition skills. The website is maintained using
Adobe Contribute software. It is a what you see is what you get editing
tool that enables the user to edit the content of pages, to create links
to new pages, and create links to external sites.
If you have any questions or would like more information, please contact me at firstname.lastname@example.org. I will get back to you as soon as possible.
New Air Travel Rules from the TSA
From the Transportation Safety Administration rules, February 2010, via UOAA
· Security officers will not require you to remove your prosthetic device, cast or support brace.
· During the screening process, please do not remove or offer to remove your prosthetic device.
· You have the option of requesting, at any time, a private room during the screening of your prosthetic device, cast or support brace.
· If you wear an external medical device and are uncomfortable with going through the metal detector or being handwanded, you may request a private pat-down inspection and visual inspection of your device instead.
· You should be offered a private screening if clothing is to be lifted to complete the inspection process.
Advise the security officer if you have an ostomy or urine pouch. You will not be required to expose these devices for inspection.
What Would You Do If?
By Ellice Feiveson, Metro Maryland, via Ostomy Association of Greater Chicago (The New Outlook)
Trust me, every person with an ostomy has had or will have an ostomy accident. By accident, I mean a pouch leak of some kind. The question is, are you prepared in case an accident occurs away from home? Not so much prepared as far as having a change of clothes and extra pouches, but prepared emotionally to deal with the unexpected mishap. The reality of it is that every person with an ostomy must think of what he/she would do if at a party, in a restaurant, work or anywhere else your pouch leaked because it was not on securely or the clasp came off and the contents were spilling out.
The question is, what do you do if you feel your pouch is not on securely or you feel wet around your pouch? First, you think that everyone is noticing you and knows what is happening. Stay calm. Go to the nearest bathroom and take care of business. Most likely, your friends are continuing their conversation in the restaurant or in your workplace and no one knows you are temporarily missing. When I encountered an accident while I was in a group situation, I just removed myself, and took my time in freshening up and rejoined my friends. No explanation is ever necessary. The more outings you take and the more public situations you are in, the more confident you will be as time goes on.
Many years ago, when I worked as a volunteer at a hospital, I got to know a little girl named Liz who was suffering from a rare and serious disease. Her only chance of recovery appeared to be a blood transfusion from her five-year-old brother, who had miraculously survived the same disease and had developed the antibodies needed to combat the illness. The doctor explained the situation to her little brother, and asked the little boy if he would be willing to give his blood to his sister.
I saw him hesitate for only a moment before taking a deep breath and saying, “Yes I'll do it if it will save her.” As the transfusion progressed, he lay in bed next to his sister and smiled, as we all did, seeing the color returning to her cheeks. Then his face grew pale and his smile faded. He looked up at the doctor and asked with a trembling voice, “Will I start to die right away?” Being young, the little boy had misunderstood the doctor; he thought he was going to have to give all of his blood to his sister in order to save her. Regardless, he had chosen to save her anyway.
Urostomy Change Procedures
By William Raymond Gantz, via: Ostomy Association of Greater Chicago (The New Outlook)
As a person with a urostomy for 13 years and being quite comfortable with my situation, it seems appropriate that I share some of my own procedures with others. I now change my pouching system every three to four days, the maximum time recommended by the WOCN (wound, ostomy, continence nurses society). For some years, I had been able to get up to 14 days wear time during the temperate times of years, but several years ago, I started experimenting to reduce peristomal skin irritation and now settle for the three to four day average year round.
I perform my change cleanup in the shower, using a suitable chair for comfort and relaxation. I start the process as early as possible after draining and rinsing my night-bag. The following are the procedures I use.
1. I remove the old pouch and skin barrier with the aid of ConvaTec AllKare Adhesive Remover wipes. I follow-up with the wipe to remove all traces of skin barrier material or adhesive.
2. I then wipe the peristomal area with a triple-square piece of folded toilet paper to dry as much adhesive remover from my peristomal area and from my fingers as possible.
3. I next wipe the peristomal area thoroughly with a fresh alcohol swab. I like the B-D brand.
4. I use another triple-square piece of toilet paper to dry the alcohol from the peristomal area.
5. If any long hairs are visible immediately around my stoma, I trim them carefully with a pair of baby scissors. About every four weeks, I carefully shave my peristomal area with the beard trimmer on my electric razor.
6. I begin my shower by washing my hands thoroughly with regular bath soap. I next wash my peristomal area twice (okay, I am being freakish) using only my hands and a bar of Neutrogena soap. The use of a neutral soap was recommended to me by one of the consulting nurses at ConvaTec.
7. I take my regular shower, rinse, and dry my head, back, buttocks and the back of my thighs. Then I bend my upper body and ripple my stomach muscles, and then massage my peristomal area, which often elicits the discharge of urine.
8. I turn on the shower again and hand-wash my peristomal area with Neutrogena soap for the final time. If I have not yet elicited a urine discharge, I will try once again before rinsing thoroughly to clean off the Neutrogena soap residue.
9. I dry my hands, and place a previously prepared slender, regular tampon in my stoma, rotating it back and forth gently so that a quarter inch or so penetrates into my stoma.
10. I hold the tampon in place with one hand while I finish drying with the other hand. I then move to the bed where I previously had placed a beach towel. I dry my peristomal area with a hair dryer set on cold with a low speed.
11. I hand the hair dryer to my wonderful wife who uses it on high to soften the adhesive on the skin barrier. I use a ConvaTec Natura Durahesive skin barrier with convexity and pouches with the Accuseal tap.
12. On signal, I remove my finger from the tampon, and my wife carefully places the skin barrier whereupon I move the retaining finger back onto the tampon. Upon the next signal, I remove the tampon and she quickly presses the pouch onto the skin barrier, which has a distinct click.
13. I press the skin barrier against my abdomen to ensure maximum adhesion while my wife cuts a piece of pink tape which she places along the top edge of the picture frame tape on the skin barrier, which otherwise turns down and picks up gnarr and smurgle during the next few days of wear.
I know that I have it really good being married to such a wonderful woman. I can complete the change by myself and have done so when my wife was elsewhere. However, as long as she, bless her, is willing, I will use her loving support.
This has been an elaborate, long-winded exposition, but it is my hope that someone, particularly a newbie, will find portions that will assist him/her in learning how to get extended wear with his/her urinary pouching system.
Tips for People With Urostomies
By Ben Hoover, via: Metro Maryland Ostomy Assn, via Ostomy Association of Greater Chicago (The New Outlook)
Your equipment is not a handicap; it is a small nuisance. You can still do just about everything you ever did, although you might want to use an ostomy belt to hold your system if you are very active.
Two or more pouch covers are one of the best comfort investments you can ever make. After all, that fluid is entering your pouch at 98.6°.
People with a urostomy should not use stoma paste.
The vinegar you use during the day in your night bag can ruin the plumbing in your home if it is not flushed or rinsed down with water.
You are going to have some leaks. Do not worry about it. It happens to all of us. Just change your equipment and continue to march.
Putting your night bag in a small plastic washbasin while in use will save on cleaning your rugs and floors.
Some one-suit luggage will fit underneath an airline seat. A small plastic washbasin will fit in half of one side of the suitcase, which will hold your supplies while traveling and is then available when you are using your night bag.
Apply a little toilet paper to the drain on your pouch when you have drained the equipment to absorb any remanding liquid residue out of the drain.
Do not worry about your urostomy when traveling. You can go anywhere you want. You just have to take a few things you did not take previously.
Take three times as many supplies as you think you will need when you travel . . . just in case.
If you have a leak in a pouch, put on a new pouch. If you have a leak in a barrier, put on a new barrier. Trying to use tape or fixing the leak will not work very well.
Many people out there would love to trade their problems for what you and I will know only as an inconvenience.
Via: The Magnolia Ostomy News (Ostomy Association of Jackson, Mississippi)
I’ve had a colostomy for more than seven years, but I can still remember that day when I thought my surgeon’s visit was only to ‘rescue me from that bowl of salt-less mushroom soup.’
That was until he said something like “I’d like to do some exploring.” Before I could get off my “Dr. Livingston, I presume” line, he explained the bad news/good news features. Even though surgery was indicated there was a possibility he might find nothing. Because I am a person of much faith, he proceeded with my carte blanche surgery and about three days later I realized I had a “rosebud” for life.
Now one of the mixed blessings about this scenario was that there was no time for a pre-op education about that brand new word to my vocabulary - colostomy. But then the REAL good news came, my E.T. nurse and my ostomy visitor from Metro Maryland, Margaret Procror, bless her soul, undoubtedly labeled me her worst patient, and with just cause, I might add. I was a slow learner, wallowed in all kind of self pity, and physically felt as badly as was my comprehension of this whole new system. BUT, she didn’t give up on me, thank goodness! An though my role as host left a lot to be desired, the visitors from the Ostomy Association didn’t give up on me either. They tolerated me, sympathized with me, and left me some very helpful literature.
Now it took me a while to feel comfortable talking with others about a colostomy. But finally, I felt quite good about visiting other patients, offering support, extending an open ear, and sharing information I’ve gained from experience.
You know, there seems to be as many different colostomies, and how to handle them, as there are persons who have them. No two of us are the same, although we are so much ALIKE we can learn a great deal from sharing with each other. There’s a perspective that only “one who’s been there” can convey. AND SHARING IS CARING.
A few hours of my week are volunteered to help out in the Ostomy Association office which our Metro Maryland volunteers are so dedicated to running well. There such a volume of paperwork - membership information, mailing lists, the many steps in preparing the newsletter for distribution, preparation for conferences, such as this one, and many, many more details that are necessary to the efficient operation and ultimate usefulness of the whole operation. It requires a lot of time from a lot of people. Another helping hand is most welcome.
My message is, I suppose, that when you see a ‘Dr. Livingston type‘ approaching with a scalpel and magnifying glass in hand and exploration in his eyes, check out his back-up facilities (E.T. nurse) and follow-up and follow-on support (Ostomy Association visitor) because they’ll probably help you as much as the surgery itself.
And then YOU in turn can help others - and so on. That’s what the ostomy Association - and indeed, life, is all about.
Be Your Own Advocate
Via: North Central (OK) Ostomy Outlook; Fort Worth (TX) New Directions
Advocate: “one who please the cause of another; one who defends, a voice”
There is so much change and challenge in the health care arena that it has become more important to be our own advocate. We must become more informed about ostomy surgery and its influence on routine health care issues.
Emergency Room Visits
Speak up and let all the medical staff know that you have an ostomy. You may have to give a quick medical explanation of ostomy surgery and the changes that have been made to your systems (intestinal and urological). Ask about all of the procedures and/or medications that are offered and their impact on your ostomy.
Severe diarrhea in individuals with an ileostomy quickly becomes a dehydration problem and requires immediate infusion of fluids and electrolytes.
Intestinal blockage requires determining whether it’s a food blockage or if it’s caused by some other reason. A quick X-ray of the abdomen can help establish the cause and thus the solution. Most food blockages will pass with time, with fluid and pain medication and possibly a nasal-gastric tube if nausea is present.
If you are unable to communicate your concerns, be sure to have another knowledgeable person with you to speak for you.
Make sure all your healthcare providers know the type of ostomy you have, including your physician and your pharmacist. Absorption may vary with individuals and type of medication.
For individuals with an ileostomy, medications in the form of enteric-coated tablets, time-release capsules or long acting medications may not be fully absorbed, so may not deliver full benefit.
Before a prescription is completed by the physician, inform or remind him/her of these concerns. A pharmacist can assist in choosing the form of medication that will be best absorbed.
Remember to speak up and ask questions. A well informed advocate is best!
Attitude in Recovery
Excerpted from an article by the Ostomy Digest, Omaha, NB, via Ostomy Association of Greater Chicago (The New Outlook)
Do you feel as if the bottom has dropped out of your world? Has your doctor just shown you your ostomy for the time? Are you surprised that your stoma is so red? You might not even be able to visualize how life is going to be with an ostomy. You wonder if you will ever become accustomed to a red strange thing sticking out of your tummy.
Be assured that you will . . . in time. An ostomy is the result of a surgery that saved your life. You choose to make it whatever you desire. You can hibernate becoming a recluse and withdrawing into your own small world. Perhaps a better choice would be to take it in stride learning the proper care of your ostomy and then forgetting about yourself. You want to enjoy the extra time God has allotted to you because of your surgery.
People find that as time goes on, the bewilderment will disappear and the challenges the person with a new ostomy encounters are slowly resolved. The issues that originally seemed so overwhelming become minimized. A person with a new ostomy becomes delighted to find out that he/she can still lead a perfectly normal life and live life to the fullest. A person with an ostomy can participate in activities of normal living just as everyone else can and just the way he/she did before having ostomy surgery. Without any trouble, we can participate and engage in activities like swimming, dancing, reading, running, working, playing, golfing, boxing, sky diving, bungee jumping, praying, visiting friends, having sex . . . whatever.
If ulcerative colitis was the reason for your surgery, then you will be able to do more than you did before surgery. Your life will be better. You will virtually never have to run to the toilet again.
The person with a new ostomy has a tendency to have an overactive imagination about sensitive issues like if the pouching system shows though the clothes; if the ostomy smells or one is giving off an offensive odor; if the stoma is making rude noises; if the pouching system will fail resulting in an embarrassing accident. There are many techniques used by people experienced with their ostomies to address these issues. After surgery, clothes will look pretty much the same as they did before surgery; nobody can really see your pouching system under clothes; the pouching systems made today are completely odor proof, there are no smells coming from the pouch once it is closed. When it is opened there are commercial ostomy odor controls are available from all ostomy suppliers, if you even need them. Digestive noises are generally louder to the person making them then to other people. Not only that but also most people are more concerned about the noises of their own digestive system anyway. An interesting fact is that people with ostomies have more accidents driving a car then with their pouching system . . . experienced people that is. People with new ostomies usually have a few incidents with their equipment until the application of it is mastered.
Yes, at first the person with a new ostomy is all thumbs trying to tackle the art of ostomy management. This may be because of challenges applying the pouching system itself or if one has a colostomy, learning irrigation techniques. Methods are a bit different for every ostomy type and for every body type. There are very many different tiny variations for optimal ostomy performance. As a person with a new ostomy becomes familiar with the pouching system, the time involved with taking care of it will only be a fraction of what it was in the beginning. Those of you experienced with changing your pouching system probably remember the difficulty and time invested on those first few changes and the frustration and depression that went along with it.
The quality manufacturers of ostomy equipment are always coming up with better products. The product offerings are so diverse and of such excellent workmanship that there are pouching systems that exceeds expectations for virtually everyone. Ostomy management does become easier over time. In fact, it will become routine. Do not become too discouraged and have patience with yourself. You will look back and realize the amount of courage you summoned to advance through this stage of your rehabilitation.
All of us graduates of ostomy training went through this same thing after surgery. We come to our local ostomy association meetings to take comfort in the fact that we are not alone; to bolster up our morale; to be educated in options regarding ostomy management and equipment; to receive practical hints on skin and health care; to help ourselves by serving others . . . etc. Fight that despair. It is your enemy. Things are going to get much better than they are right after surgery.
By Chris Demeuse, Green Bay Area Ostomy Support Group
I recently attended a cardio-pulmonary support group meeting that had a very interesting discussion about Friedrich Nietzche’s Thus Spake Zarathustra, in which a philosophical concept was posed: what if you were to live the identical life again and again throughout eternity - how would that change you?
By that, he meant that however you have lived your life up to this point, you would have to relive your life…exactly the same as you have lived it…over and over, forever and ever. No changes. No different choices. No different outcomes. No learning by experience, thus making a different choice the next time around. But just reliving your life EXACTLY the same way for all eternity! Every little detail of it…every pain, joy, illness, thought, sigh, utterance…all in the same succession and sequence…over and over again. What would that do to you? Would it crush you down and cause you too “gnash your teeth and curse the demon who spoke thus”? Or would you be content with the choices you made in your life, knowing that you did the best you possibly could?
In Nietzche’s book Staring at the Sun: Overcoming the Terror of Death, some very good points were raised:
* “This life, your only life, should be lived well and fully, accumulating as few regrets as possible.”
* “No positive change can occur in your life as long as you cling to the thought that the reason for your not living well lies outside yourself.”
* “You and you alone are responsible for the crucial aspects of your life situation, and only you have the power to change it.!
Our discussion in the support group that day was very powerful and got me to thinking about my own life…and the lives of all my fellow ostomates. So, for what it’s worth, I’d like to share some of the thoughts of the group and many of my own.
Some things in life we can control…some we can’t. We do have control of how we respond to every situation and every life challenge. We have a choice of what to say, what to do and how to react to them. We can make choices about our attitude and how we use our time and energy.
Here are some questions you can ask yourself…they are all things that you have control of:
* Do you live in the present and really make the most of each moment, or do you worry about tomorrow and fret over yesterday?
* Do you hold resentment, bitterness and anger, or are you able to let go of them?
* Do you bring others down with your negative energy or do you bring their spirits up with optimism and a zest for life?
* Do you surround yourself with positive people or do you keep negative people in your life?
* Do you say “yes” to things you really don’t want to do or don’t have the energy, time or strength to do, but then get angry or resentful because of not saying “no”?
* Are you wasting precious time that could be spent with loved ones and friends?
* Do you choose to use your time to educate yourself about your disease, treatment or surgery in order to make the best decisions possible, or do you choose to do nothing and live with the consequences?
* Do you plan ahead and prepare for the occasional “ostomy accident” when you are out, so that you can quickly take care of it and move on, or do you stay home because you are afraid of what might happen?
* Do you choose to feel sorry for yourself, or are you proactive…doing whatever you can to make the most of your present situation so that you can live your life to the fullest?
* Would you be content with the choices you have made thus far if yo0u had to relive your identical life over and over again for eternity?
No matter what challenge you are facing in your life today…learning to live with an ostomy, dealing with a diagnosis of cancer, undergoing difficult treatments…ask yourself if you are making the best possible choices. Consciously choose living over worry…happiness instead of bitterness. Live without regrets. What if you died tomorrow? What would you do differently today? Now choose those things…every moment of every day and really LIVE your life the best way possible! You hold the power!
The Best Medicine
Via The Insights and Green Bay Ostomy Group, Green Bay (WI)
After my ostomy surgery ever-increasing pain in the abdominal area led me to my doctor who diagnosed my symptoms as that of kidney stones. The urologist successfully removed the stones with a little umbrella-like instrument he inserted into my penis. I was quite recovered in a day or two.
As I talked with my doctor afterwards, he said, “Do you get thirsty often?” When I said “no”, he replied, “Water is essential for everyone and ostomates need more than usual because they’ve lost so much of their intestinal absorbing area. The best medicine I can recommend is water. When you are thirsty, don’t drink just enough to alleviate your thirst. Drink a glassful and drink a glassful often. Never pass a drinking fountain without taking a drink.” As I’ve followed his advice, I’ve had no recurrence of stones and have been grateful over the years for “the best medicine.”
Reading up on the subject I’ve discovered that water not only helps us get rid of wastes but is vital for digestion and metabolism, helps us keep cool through perspiration, lubricates our joints, moistens our lungs so we breathe better and even helps us lose weight. Water helps to metabolize fat and if you’re not getting enough water, your body will retain what it has, thus keeping your weight up. People need 8-10 glasses of water thoroughly the day and ostomates NEED MORE.
THOUGHTS TO PONDER…. ???
Via: Green Bay Area Ostomy Support Group, Green Bay (WI),
Never look back unless you‘re planning to go that way.
A person who never makes mistakes, never makes anything.
A friend accepts us as we are, yet helps us to be what we should.
You Have Adjusted to Your Ostomy When…
via Green Bay Area Ostomy Support Group, Green Bay, (WI), via Ostomy Association of Greater Chicago: The New Outlook
· You stop spending all of your spare time in the bathroom waiting for your stoma to work so that you can empty the pouch right away.
· You can move about freely without holding onto your pouching system as though it might fall off at any minute.
· You make that first trip to the mailbox without taking along all your spare ostomy supplies.
· You stop grabbing your abdomen when the grocery clerk asks if you need help to the car with your bag.
· You go out for the evening and realize too late that you left your emergency kit at home.
· You think how lucky you are to be alive instead of how unlucky you are to have an ostomy.
· You attend the monthly support group meetings with an expectation of learning more about your ostomy, along with helping others—rather than staying at home worrying about it all.
Hints for New Urostomy Patients
via Green Bay (WI) Area Ostomy Support Group, via The Ostomy Association of Long Island
via Ostomy Association of Greater Chicago (The New Outlook)
Train yourself to shut the pouch valve as soon as you have emptied the pouch! If you forget, the resulting disaster within the next 10 minutes could ruin your day.
Be sure to take the plastic washbasin and clean measuring container home from the hospital. They are very helpful as you establish a daily routine of washing your nighttime equipment.
Gallon bottles of white vinegar and cheap liquid detergent make the daily washing-up an inexpensive chore. Irrigate the pouch daily with a solution of 4/5 water and 1/5 vinegar. The hospital plastic washbasin is an ideal container for supplies when traveling. In addition, it can be used to hold the night drainage bag. In the morning, it is handy for washing-up wherever you are. It fits nicely into most carry-on bags and is not heavy.
If you change the pouch first thing in the morning, there is less chance of the stoma misbehaving as you do the change.
In most cases, urostomy patients enjoy a completely normal diet. Cranberry juice, yogurt or buttermilk will help combat urinary odors. Asparagus produces a strong odor in urine, but many of us eat it anyway because it tastes good and is healthy.
Get Your Guts In Gear in 2010
Via UOAA Update for 3/2010
Join in the fun and seize the opportunity to connect with patients, family and friends who are affected by Crohn’s disease, ulcerative colitis or have an ostomy by riding or crewing in one of the 3 GYGIG Rides scheduled for 2010. UOAA will pay the $ 85 registration fee for all riders or crew members representing the UOAA. UOAA is proud to be a beneficiary of the GYGIG ride, and portion of the proceeds from each ride benefit UOAA’s mission.
New York’s Hudson River Valley, from June 11-13, 2010
Depart from New York City and head north through the Hudson River Valley, one of the most picturesque settings of the Northeast.
Pacific Northwest / Seattle Area, August 6-8, 2010
Ride north of Seattle, exploring beautiful island coast lines and summer scenes of the rural Skagit Valley, while taking in the vistas of the Cascade Mountains.
Midwest Wisconsin, October 1-3, 2010
Starting and ending in Milwaukee, WI, cycle through the rolling farmland of Southern Wisconsin and take in the vibrant fall colors and country views.
For more information, log onto the GYGIG website athttp://www.ibdride.org
YRC YOUTH RALLY JULY 11-17, 2010
Via UOAA Update for 3/2010
The Annual Youth Rally will be held this year from July 11th to the 17th at Xavier University in Cincinnati, Ohio. The Youth Rally provides youth between the ages of 11 and 17 with an opportunity to learn how to live an independent life with an ostomy or other bowel or urinary conditions, to meet with, and share life experiences with fellow campers, and to have fun in a university setting that will help to prepare them for future educational activities.
Do you have someone in your support group who would benefit from attendance at this event? Please give some thought to providing them with a full or partial sponsorship. The registration fee is $ 425 and most campers require air travel to get to camp. Any amount that you would like to donate would be most welcome. If you do not have any candidates within your group, but would still like to sponsor a camper, your donation would also be greatly accepted. Checks or credit card information should be made payable to “The Youth Rally Committee” and sent to Linda Aukett, YRC Secretary/Treasurer at 424 Bradford Avenue, Westmont, NJ 08108. If you have any questions feel free to contact Linda directly email@example.com .
Friends of Ostomates Worldwide-USA and Answering the Call
by Ruth Salinger - FOW-USA Director
Founded in 1986, the Friends of Ostomates Worldwide-USA (FOW-USA) is a non-profit organization that collects new, donated ostomy supplies from generous individuals and organizations in the United States, and ships them to countries where ostomates do not have access to these vital supplies. Through March 2010, FOW-USA has shipped over 246,000 pounds of supplies, valued at almost $12 million, to over 60 countries.
Ostomates in developing countries frequently have to make their own ostomy appliances using available products such as plastic bags, metal cans, or rubber gloves, or wrapping themselves with a towel. The quality of life is poor, skin care is a major issue, and the ostomates may be rejected by their families and villages.
Requests for supplies come from health care professionals, clinics and hospitals, and other related organizations such as ostomy and cancer groups. Sometimes we receive emergency requests. After the January 12, 2010, 7.3 magnitude earthquake hit Haiti, one of our contacts, the Catholic Medical Mission Board, based on Long Island, NY, sent out a general request to their partners for assistance. Thanks to the quick actions of the volunteers at our Louisville warehouse, we were able to send three pallets of supplies to CMMB, who then provided them to their staff in Haiti for distribution. We also thank UOAA for their financial support of this shipment. In CMMB’s recent newsletter, they said: “Less than 48 hours after the first earthquake, medical supplies … were in route from our New York Distribution Center to Haiti…. CMMB has been very successful in getting donations into Port-au-Prince by airlift or shipped by ocean into the Dominican Republic, where they are then trucked over the border into Port-au-Prince.”
Through financial donations, the Friends of Ostomates Worldwide-USA pays for expenses, including shipping the supplies and renting warehouse space in Louisville. The cost to send supply packages to our overseas recipients may be as much as $2 per pound. Since our shipments may run up to 800 lb each, shipping costs are significant and we rely upon the generous financial donations of people for this important cause. Financial donations should be sent to FOW-USA, 1500 Arlington Avenue, Louisville, KY 40206-3177.
We work closely with our counterpart, Friends of Ostomates Worldwide-Canada, in covering different parts of the world where supplies are needed. We also work with the International Ostomy Association and its regional presidents. Please see our web site for information on our shipping history, available resources, and information on how to support us:www.fowusa.org
Supplies that can be accepted are those that are:
New, Clean, Currently stocked, Preferably in the original packages
Supplies that can not be accepted are those that are:
Aerosols, Liquids, Used products and Products with expired dates
Shipments of your unwanted supplies should be sent to:
1500 Arlington Avenue
Louisville, KY 40206-3177
Your shipment should include your name and address on the returns label as well as in the shipping box. You will receive an acknowledgement letter. We are a registered 501(c)(3) corporation with the Internal Revenue Service. This means that financial and supply donations may be tax-deductible on your Federal income tax.
A Very Good Idea
Via: Insights - Snohomish County Ostomy (WA), via Winnipeg Ostomy Association of Canada (Inside Out), via the Semi-Colon, MOA and Green Bay (WI) News review
If an ostomate happens to be in an accident, or should become so ill that he/she could not talk, would anyone know to change the appliance when necessary?
Have you ever thought about what a bad situation this might be? To eliminate the chance of that happening, it would be a very good idea to always keep extra appliances on hand, all made up and ready to use. They should be kept in a special place at all times so they could be picked up and taken to the hospital or wherever the ostomate is being cared for. As well as made-up appliance, full instructions, spelling out all the little steps necessary to change and for the care between changes should be written down and kept with the supplies. All of us should prepare for the worst, and perhaps it will never happen.
Contrast Exams and the High Output Ileostomy
By Lyn Rowell, via Ostomy Association of North Central Oklahoma (Ostomy Outlook), via Green Bay (WI) Newsletter, via: Chippewa Valley (WI) Rosebud Review, via Snohomish County (WA) (Insights)
For an ileostomate with a high volume output, medical tests that involve drinking contrast solutions may be a little difficult. Even an ultrasound that requires a full bladder may need a little extra planning.
If your ostomy output is fluid and must be emptied frequently, talk to your doctor prior to the test. Normally, the body adjusts within a year or two of surgery so the time between ingesting food or drink and the time it comes out of your body (transit time) slows down; however, some individuals may find that their intestinal tract continues to process what goes in quite quickly.
If you are having an ultrasound that requires a full bladder, you are instructed to drink a certain amount of liquid within a certain time. I have found that to have the required full bladder, I (an ileostomate) must start drinking fluids earlier than they state and at a slower rate, so that my body has a chance to absorb the water. If I follow routine instructions, it just runs right through to the pouch. I also find that taking an anti-diarrhea medicine helps.
If your exam requires drinking contract, talk with your doctor prior to the appointment about how to slow down the digestive tract. I once was given a large amount of contrast to drink, which I did, but more ended up in the pouch than in my system. Thankfully, there was enough in my system to do the exam. But it’s wise to talk to your doctor ahead of time. Do not expect the technician during the exam to understand your situation. I was once asked, “Couldn’t you plug it or something?” ah, if only! (Note: Check with your doctor or ostomy nurse. Remember that every body reacts differently.
Notes For New Ostomates
Via: Lane County (OR) Ostomy Association (Ostomy Digest), Grand Rapids, MI & the Right Connection, San Diego Area Chapter
Do you ask “Why me?” You are very lucky to live in a time when doctors are able to perform ostomy surgeries. Did you know that rectal bleeding was one of the leading causes of death 100 years ago? If you and I lived back then, we would probably be dead. We have been given a great gift--a new life. It is natural though to grieve over loss of important organs.
Stomas change in size and shape during the first few months. The initial stoma swelling will lessen and the diameter will decrease. It is prudent to check the size of the stoma each pouch change until the size stabilizes. Each person has a different ostomy just as our fingerprints are different. We have more similarities than differences.
Attending UOAA meetings gives us the opportunity to explore with others, seek support and information from someone with an ostomy to ease the transition time. UOAA has experienced visitors who are generous in helping people who had or are about to have surgery. They will assist with concerns about this new phase of life. It is your ostomy. Learn to manage it.
Depression And The New Ostomate
Via: North Central Oklahoma Ostomy Outlook (l/2008)
At a recent support group meeting, a subject came up that I found intriguing. One of the participants in the rap session stated that he found himself depressed and withdrawn even though it had been a year since his surgery. He wondered how long he could expect that feeling to last and, I think, whether it would go on for the rest of his life.
Some ostomates adjust almost immediately. These folks see an ostomy as a cure for an illness that threatened their lives or restricted their activities. Others take a few months, generally feeling better about the situation as soon as they master the fine art of pouch changing and maintenance. For many, ostomy surgery begins a process that appears to be, and is, very close to the grieving process, and like any grieving process, the amount of time needed to feel emotionally whole again will vary.
It took me almost two years following my surgery before I felt like I had regained my former personality and was ready to move on with my life. So there is no magic amount of time needed to adjust to your new ostomy. Allow yourself the time you need to realize that the feelings of depression and isolation will eventually go away. If the depression is severe, don’t be afraid to seek professional help.
If your isolation is caused by a lack of confidence in your appliance seek help from an ostomy nurse. If your appliance is working fine but you still feel separated from others, seek help from other ostomates. Go to a meeting and meet others in the same situation. If you don’t already have one, call your local support group and ask for an ostomy visitor who can talk to you about how he or she managed post-operative emotions. But above all, give yourself time to adjust.
A Word from the Editor
To keep our costs down, if possible and if you have Internet access, please allow us to send the newsletter electronically. To do this, please advise us via email to firstname.lastname@example.org. We would like to extend a special “thank you” to all of the people who have switched over to the electronically transmitted newsletter.
The Contact List is available to all. If your name is not on the Contact List and you would like to be included in the List, please send an email to email@example.com. The email should include an affirmative statement that you would like to be included in the Contact List as well as what type of Ostomy you have and the state in which you live. All persons who receive this email are eligible to be on the Contact List.
If you do not have email, please send this information as well as a contact telephone number (via snail mail) to: Eric Floyd, 2067 Penguin Avenue, Akron, OH 44319.
Inclusion in the Contact List is not an indication of an individual‘s sexual preference, as ET’s, WOCN’s and other professional persons are also included in the List.
Do not follow any advice listed in this newsletter without first consulting with your physician. GLO does not endorse any product or service. We offer all information for our readers’ benefit to use as they see fit.
Just a reminder, we welcome submissions from our members. If you have something you want to submit, send it to firstname.lastname@example.org.
GLO welcomes articles submitted by our members. We would like to hear from you and find out what led up to your ostomy surgery, how you felt about it and adjusted to it afterwards. You don’t have to worry about writing the “perfect” story for the newsletter. GLO can edit your submission and will submit it to you for approval before printing.
CONNECTIONS and RESOURCES
GLOCONTACT, the newsletter for the gay/lesbian ostomate is published by the GLO Network an independent network
The GLO Network email: Glocontact1@aol.com
The GLO Network website (NEW): www.glo-uoaa.org
GLO Network Board Members:
Fred Shulak, GLO Network Chairperson, Email: email@example.com
Eric L Floyd, Treasurer and Previous Chairperson, Email: firstname.lastname@example.org
Bill Etnyre, email@example.com
Mark Nowak, Email: firstname.lastname@example.org
The above names are listed as a ready resource of the GLO Network to be used by individuals seeking information, chapters looking for a trained visitor or for anyone wishing to expand their knowledge of the Gay or Lesbian ostomate.
United Ostomy Associations of America: www.uoaa.org
Gay and Lesbian Medical Association: www.glma.org
WebMD - www.webMD.org
Mautner Project for Lesbians with Cancer: www.mautnerproject.org
Centers for Disease Control: www.CDC.gov
United Ostomy Association (Canada) www.ostomycanada.ca
International Ostomy Association (IOA): www.ostomyinternational.org
Crohn’s Disease Resource Center: http://www.healingwell.com/
Friends of Ostomates Worldwide (Fow):www.fow-uoa.org
Quality Life Association - for Continent Ileostomates - http://www.qla-ostomy.org/
WOCN Referral Database - Find an ET:
Prescription information: www.eofhr.org/technology.php
Chat Rooms, Meeting Places and Message Boards
Gay Ostomates: www.gayostomates.org (United Kingdom)
The J-Pouch Group: http://www.j-pouch.org/
The Pull-Thru Network: http://www.pullthrunetwork.
The Continent Diversion Network: http://www.uoaa.org/forum/
Stuart Online Ostomy Chat: http://www.stuartonline.com/
Living With A Colostomy: http://www.ostomysupport.info/
Community Zero (Ostomy) Support: http://groups.yahoo.com/group/
Autoimmunity - the Hidden Link
Shaz’s Ostomy Pages*:http://www.ostomates.org
Jacksonville, FL - http://www.ostomymcp.com/
Evansville, IN - http://www.ostomy.evansville.
North Central Oklahoma, OK - http://www.ostomyok.org/
Vancouver, British Columbia - http://www.vcn.bc.ca/ostomyvr/
Winnipeg, Manitoba - http://www.ostomy-winnipeg.ca/
Cleveland Clinic - Pouch-O-Gram http://cms.clevelandclinic.
The Phoenix Magazine
The Phoenix Magazine, the official publication of the UOAA, is considered to be the best and most reliable source of data for the ostomate. It contains a lot of new and useful information.
If you subscribe to the Phoenix, not only will you be doing yourself a favor, but you will also be helping the UOAA as they receive half of the subscription price from the Magazine. The rate is $25.00 for one year or $45.00 for two years.
You can subscribe by issuing your check to The Phoenix Magazine and mailing it to P. O. Box 3605, Mission Viejo, CA 92690.
Credit card orders will be accepted online at www.phoenixuoaa.org or by calling the UOAA at 1-800-826-0826.