GLOCONTACT Vol 26 Issue 1, Jan, 2010The newsletter for the Gay/Lesbian, and Bisexual Ostomate (or other type of diversionary procedure) their Partners, Family, Caregivers and Friends
GLO or GO ??? By Eric Floyd
Did you notice the title? Do you want to know what it means? It really does matter and I am going to tell you why. Fred Shulak is tired. Eric Floyd is tired. We are both over 70 and have been maintaining the GLO organization for years. If someone does not step up to the plate in the very near future to carry on the work of GLO there will no longer be a group. We need active members to volunteer and to provide information to new ostomates online, by mail, by phone and in person. We need an editor who can put out our newsletter (electronically and in hard copy) three times a year. We need a person who can maintain our mailing list. We need a webmaster. We need a group of dedicated people who will make a concerted effort to be at the biennial national conferences of the UOAA to represent the GLO organization - not just Fred. We need people to network and keep GLO growing.
We have a limited budget and for us to continue to exist it is necessary to ask for donations to keep this Gay/Lesbian Ostomates group alive. That is why we are asking for money and volunteers. Do you care enough to keep GLO going and invest some of your time in the group? Fred and Eric anxiously await your answers.
Donations to GLO can be made by check payable to GLO and sent to:
Eric L. Floyd, 2067 Penguin Avenue, Akron, Ohio 44319 Offers of involvement and how you can help may be e-mailed to Fred or Eric at www.glocontact1@aol.com.
Gay Quotes: Homosexuals are allowed to emerge from the closet….We have come a long way in recognizing that people are individually created, not stamped from a molds in the shape of a majority group.
Emily Post’s Etiquette, 14th edition Quality of Life With a Permanent Ileostomy of Colostomy Survey via UOAA
This was received recently from the UOAA and I thought it would be of interest to most of our members.
From Ken Aukett: Recently I received the following letter from Doctor AM El-Tawil, MRCS, MSc, PhD in the Department of Surgery at the University Hospital Birmingham in England.
Dear Mr. Aukett,
Creation of a permanent ileostomy is one of the surgical options available for managing cases with intractable constipation. We need to know the outcome of this procedure on the quality of life of patients.
For this reason, we created a short, comprehensive questionnaire. I wonder whether it would be possible to distribute this questionnaire to your affiliated support groups and ask their leaders to invite their members to complete the questionnaire and e-mail it back to me.
Thank you for your assistance in undertaking this scientific endeavour.
Sincerely yours, AM El-Tawil, MRCS, MSc, PhD “ Quality of Life Study About Patients With Permanent Ileostomies and Colostomies AM El-Tawil, MRCS, MSc, PhD Department of Surgery University Hospital Birmingham Edgbaston B15 2TH United Kingdom Your Initials: ________ Date: ___________ Age: _____________ Sex: _______________
The creation of permanent ileostomy or colostomy is one of the surgical options for treating patients with bowel diseases. We would like to need to know about your feelings after permanent ileostomy or colostomy surgery. Would you have preferred to continue with medical therapy rather than undergo surgery? If your doctor knows about your feelings we believe he will be able to help you more. This questionnaire is designed to help your doctor to know how you feel. Do not take too long making your replies; your immediate reaction to each item will probably be more accurate than a long thought out response. 1 What is your bowel problem? _____________________________________________________________________ 2 When were you diagnosed with disease? _____________________________________________________________________ 3 When was your ileostomy or colostomy c_____________________________________________________________________ 4 How do you feel in general? Very well ( ) Slightly improved ( ) Poor ( ) Very poor ( ) 5 Do you experience abdominal pain? None ( ) Mild ( ) Moderate ( ) Severe ( ) 6 Did you ever have abdominal pain before treatment? No ( ) Mild ( ) Moderate ( ) Severe ( ) 7 Has your treatment interfered with you being a mother/ wife/ husband/ father? Yes ( ) No ( ) 8 Has your treatment changed the way you see yourself as a man/ woman? Yes ( ) No ( ) 9 Has your treatment caused any change in your sexual functioning (sex life)? Yes ( ) No ( ) 10 Do you expect your sexual functioning to be changed in any way after you leave the hospital? Yes ( ) No ( ) 11 Do you experience any social limitations? Never ( ) Rarely ( ) Sometimes ( ) Always ( ) 12 Do you still enjoy the things you used to enjoy? Definitely as much ( ) Not quite so much ( ) Only a little ( ) Hardly at all ( ) Thank you very much for answering this questionnaire. Please e-mail the completed questionnaire to: bowelsurvey@yahoo.com
Gay Quotes:
There is probably no sensitive heterosexual alive who is not preoccupied at one time or another with his latent homosexuality. By Normal Mailer The fact that homosexuality is especially common among men of exceptional talent was long since noted by Dante….There cannot be the slightest doubt that intellectual and artistic abilities of the highest order have frequently been associated with a congenially inverted sexual temperament. By Havelock Ellis
Continuing Your Social Life With An Ostomy
UOAA UPDATE 12/09 via The Right Connection, San Diego (CA)
Your social life can be as active as it was before surgery. You can enjoy all activities: meeting people, attending concerts, sporting events, civic and social club meetings, parties, religious occasions or whatever you enjoyed before. The first time you go out of the house after surgery, you may feel as if everyone is staring at your pouch, even though it is not visible under your clothing. You can feel your pouch on your body, but no one can see it. Did you know what an ostomy was or where a stoma was located or what it looked like before your had surgery?
You may also worry about your pouch filling with gas and sticking out under your clothing. A quick trip to the restroom can take care of this problem. If you are worried about your pouch filling up immediately after eating at a social event, remember, people without ostomies often need to go to the restroom after eating and nobody will think it’s unusual if you do the same! You will probably find that you need to empty your pouch less often than you need to urinate.
Friendship and love - You may be wondering about your relationships with others. Now that you have an ostomy, you may feel that it will change your present relationships and decrease new opportunities for friendship and love. True friendships and deep relationships on any level are built on trust and mutual understanding. These qualities depend on you and other persons. You have the same qualities you had before surgery and your ability to develop friendships is unchanged. If you care about yourself, others will feel your strength and will not be deterred. If your ostomy does cause a break in friendship, a sexual alliance or even marriage, this relationship was not built upon trust and mutual respect and probably would have crumbled sometime in the future anyway.
Medications from Other Countries
Published by the FDA via: Green Bay (WI) Area Ostomy Support Group There are serious risks you assume whenever you purchase medications from outside the country or from questionable sources, like Internet spammers. These medications may be unsafe or ineffective. It may not be prudent to risk your life purchasing these questionable products.
** Some of the same medications that are made in the U.S. may be made in other countries. However, they may use unsafe procedures during manufacturing; or techniques during the manufacturing process that renders the medications dangerous or ineffective.
** Some imported medications are fakes. This is becoming a growing problem especially with high prices drugs; e.g. you can be sold Nexium when the product is actually ranitidine, which works like Nexium but is less effective. You may not even know how the right medication is supposed to react and settle for less satisfactory results. ** Some imported medications may claim to have the same effectiveness as one made in the U.S. However, they may not have been checked for safety and efficacy.
** An imported medicine may not have information for treating side effects.
** The medications label, instructions and list of possible contraindications may be in a language you do not understand.
** The label of some imported medications may make claims or suggest uses that have not been proven to exist. If you have any concerns about the use of these imported medications contact your doctor, local pharmacist or state board of pharmacy. They can help guide you to make an informed decision whether or not to use an imported medication.
Acidic Urine - A Must For The Urostomate
UOAA UPDATE 12/09 via Great Falls (MT)
Very often, a person with a urostomy is advised not to drink orange juice, but is not given an explanation as to why. The rational behind it actually applies to everyone at one time or another. If you get a bladder infection, your urologist may give you the same admonishment, and for the same reason. Acidic urine tends to keep bacteria in check, thereby lessening the incidence of infection. Orange juice is not used by the body as acid, but as alkali. Alkaline urine can also cause crystal buildup around the stoma. When the food you consume is burned in the body, it yields a mineral residue called “ash”. This ash can be acidic or basic (alkaline) in reaction, depending on whether the food eaten is mostly acidic or basic. The reaction of the urine can definitely be changed by foods like orange juice. Most fruits and vegetables actually give an alkalized ash and tend to make the urine alkaline, but there are some exceptions. Meat and cereals will usually produce an acidic ash that will acidify the urine. Some acid-producing foods are bread (especially whole wheat), cheese, corn, crackers, cranberries, eggs, nuts, macaroni, pastries, plums, prunes, meat, fish and poultry. Some alkaline-producing foods are milk, bananas, beans (lima and navy) beets, greens and spinach. Some neutral foods are butter cream, salad oils, syrups, sugar, tea and tapioca.
Normally, the urine in the bladder is acid in nature, so watch your diet. Mother Nature knows what she’s doing. Gay Quotes: Respected and admired women, public women, with power and prestige have been discussed for decades in terms of spinsterhood or loneliness, or in terms of “Boston marriages,” by which we are meant to assume chaste, untouching companionship. The truth is merely that they were not public about their private lives. They lived in a world of coded words and costumes, a world of lavender and violets, pinkie rings and pearls. By Blanche Wiesen Cook A Brief History of Medicine Author Unknown, via United Ostomy of Lane County, Eugene, Oregon 2000 B.C. - “Here eat this root.” 21000 B.C. - “That root is heathen, say this prayer.” 1850 A.D. - “That prayer is superstition, drink this potion.” 1940 A.D. - “That potion is snake oil, swallow this pill.” 1985 A.D. - “That pill is ineffective, take this antibiotic.” 2000 A.D. - “That antibiotic is artificial. Here, eat this root.” Skin Attention UOAA UPDATE 12/09
Some ostomates can use anything on the skin and “get away with it.” Others have to search for just the right combination of products for satisfactory use. New ostomates benefit from the follow-up visits to the WOCN because careful consideration is given to the various products used around the stoma area. If you are experimenting on your own, consider the following information for using a different product. Patch testing is recommended before proceeding to use the new product. The skin on the inner surface of the arm or leg or the opposite side of the abdominal area from the stoma are good areas to use for a simple test. For example, cut a piece of the washer, tape, disc, etc. and affix it to a chosen area. Secure with a strip of micropore tape and leave on the area for 48 to 72 hours (editor’s note: Be careful of the tape too; it could be a problem also). Any burning sensation or itching during the testing time could signify sensitivity to the material being used and therefore, should be removed immediately, washed and dried well. After 48 to 72 hours, remove the “patch” and if there is no redness or irritation, it is safe to assume that the product can be used. With some persons, a “delayed reaction” may not occur until a few days later. For more extensive testing than this, contact a dermatologist.
Embracing Happiness or How to Have Your Ostomy and Be Truly Happy, Too
via: Snohomish County Ostomy, Insights; excerpts via ConvaTec’s Health & Vitality magazine “If you have your happiness, you have everything. You don’t have to have your health, as society defines it, to be very, very, happy.”
Dan Gottlieb, PhD, a Philadelphia-based psychologist who hosts a public radio show, should know. He lost the use of his legs in a catastrophic car accident 25 years ago. He lost his hope and ultimately lost his wife to divorce.
“My wheelchair, your ostomy - they’re just facts,” he says. “They signify losses, of course - formidable ones. But the losses themselves don’t determine how happy or how miserable we’re going to be. We do that. You and me.” First you cry. When you got your ostomy, you lost an important part of your body. You lost the image you’d always had of that body, and you lost your sense of normalcy. Put your arms around everything that is gone, and allow yourself to feel your pain, outrage, and grief fully and deeply.
Stop fighting. We know we have to stop fighting in order to make peace in the world. The same is true of our own battles. Stop fighting the fact that you have an ostomy, and life - with its ups and downs - will fill in the space that opens up. If you have an ostomy, you‘ve been introduced to death. You know it, you‘ve seen it. So you also know that what you want in life. Let it in. Be grateful. When we’re grateful, we feel indebted for our gift. When we’re indebted, we give back. And nothing fosters happiness more than giving. Grateful people don’t deny or ignore the negative aspects of life, they just view them with more compassion - towards themselves and others.
Don’t waste your pain. Ronald A Burton, PhD opted for early retirement to pursue helping fellow ostomates. “I wanted to be the person someone with a new ostomy could call on when they couldn’t embrace it psychologically. I understand that feeling. I get it. And I want to use my experience to help. I need to use my experience to help, because it helps me.
For New Ostomy Patients: Regaining Confidencevia: North Central (OK) Ostomy Outlook; via Vancouver (BC) Ostomy High LifeTricks for getting your confidence back? There’s no unusual formula here, it’s a matter of common sense, the willingness to problem-solve and plain old courage.
Change your own appliance.
One of the most important first steps to regaining your confidence is to master the art of changing your own appliance, and of ordering your own supplies. Educate yourself, read products materials, ask questions, get free samples. You don’t have to be a passive consumer of these things! After all, you’re paying a bundle for this stuff, you owe it to yourself to find the most effective and esthetic products possible. In the beginning it’s going to be confusing and daunting and you will make mistakes. Everybody does. Mistakes and accidents can be deeply frustrating but they should also be viewed as lessons from which to learn. Every time you beat a problem or outsmart a situation, you gain in confidence.
Get out in public.
At first you’ll feel terribly self-conscious and think everybody is staring at you. By the end of your walk or drive you will probably have come to the startling realization that nobody paid any attention to you. At all. (See? Just like before!)
Resume your hobbies.
Whatever you loved to do before be it arts and crafts, a sport, movies, walking, whatever - get back at it. And be gentle with yourself - don’t expect to run 10 km the first time you jog. Around the block will do for now. You’ll work your way back up again.
Have faith in your friends.
Don’t avoid the crowd you usually socialize with and don’t lie to friends about your situation if asked. Real friends will not think less of you nor will they treat you any differently. They will feel sorry this has happened to you to be sure - you would feel the same if the situation was reversed - but they will stand by you if you let them. The compassion caring and basic goodness of people may surprise you - I have never once had any friend say or do something unkind; indeed, everyone went out of their way to offer help and show me they were glad to have me back..
Challenge yourself.
The worst thing you can do is assume you can’t do something without even trying. One young ostomate participates in dragon-boat races. Do you think she was nervous the first time she got back in a boat? You bet she was. But she did it anyway and went on to compete in regattas. Now that’s confidence renewed.
Suggestions for Urostomates
by Peter W. Shannon, MD, S. Alameda, via Metro Maryland, via United Ostomy of Lane County, Eugene, Oregon I have been an urostomate since 1980, so I am an old timer in dealing with Urostomy problems. I have recently been using “Dial Antibacterial Hand Sanitizer” to sterilize the skin around my stoma when I am changing my appliance. This gel states it “kills over 99.99% of harmful germs in 15 seconds.”
Since I started using this gel, the skin around my stoma has never looked better. The wearing time with my appliance is also about a day longer than before. I also may have fewer urinary tract infections (I am susceptible to these because of hydronephrosis and dilated ureters).
I change my appliance when I am in the shower. I clean the skin around the stoma with soap and water as I have in the past. I then apply the gel to the skin and wait 30 seconds before rinsing it off. It comes off very easily and my skin is squeaky clean when I am finished I then step out of the shower, dry the skin and put on the new appliance. In the past the skin around my stoma has frequently been slightly raw and inflamed. After I started using this gel the skin cleared up almost immediately.
Tips and Tricks Via: Green Bay Area Ostomy Support Group
Ordinary Peroxide - yes, that stuff that comes in the homely brown plastic bottle is a very effective pouch deodorant. A tablespoon or two in your drainable bag each time you empty will eliminate or drastically reduce unpleasant odors. Users report that small amounts of 3% solution peroxide in their appliance is unusually effective. Peroxide is available over-the counter at pharmacies, grocery stores and Wal-Mart.
Oatmeal added to your bath can relieve all kinds of itchy skin problems. Pour some oatmeal into a cloth bag or a piece of cheesecloth; tie it shut and put it into the bath water. You can also use the oatmeal bag like a sponge to soothe itchy skin. If you notice a persistent odor after changing your appliance, check to see if you have cleaned the tail piece properly. It isn’t necessary to clean the inside of an appliance, but the end of the tail flap is exposed to the outside and will cause odor if the fecal material is not removed. A careful swipe with a piece of tissue will do the trick.
Remembering a Friend - Florence Cohen
By Fred Shulak
Florence Cohen was extremely instrumental in the formation of the Gay and Lesbian Concerns Committee which later became the GLO Committee and then the GLO Network. She was a friend to all and your sexual preference was of no importance to her. Florence was also the glue that held together a Gay and Lesbian ostomy support group in the Boston area. It was known as Boston GLO. Florence Cohen passed away in February, 2006 and without her Boston GLO eventually ceased to exist.
I “inherited” the records from Boston GLO in the summer of 2006 and went thru them to see what information there might be that would be of use to the GLO Network. After doing so, I put them aside and only recently reviewed them again only this time in great detail. In the records, I found a poem that I would like to share with you. It was written by Ann Favreau who is a past-president of the now defunct UOA and was a good friend of Florence. If you didn’t have the good fortune to be personally acquainted with Florence, this poem will give you some insight as to the type of person she was. I hope you enjoy it as much as I did.
INSIGHTFUL WOMAN - by Ann Favreau
She opens her heart, her mind, her home To those whom others ignore. She looks beyond to see their pain, And offers aid again and again. "They're not your kind" some say to her. "They are humankind," she replies. "Why do you bother with those in G. L. O.?" They are wonderful people she wants to know. "They have needs we have to address," she says But many do not listen. So with her help and warm affection, They start their own support connection. Linking each with one who cares, She breaks the isolation. Global aid by letter and phone Relays the message, "YOU ARE NOT ALONE!" Ann is an author and has written a new book Window Eyes. It is priced at $10.00 (including postage) and you can order it directly from Ann by email at www.favray@comcast.net.
Special Announcement
via: UOAA Update
World Ostomy Day was October 17, 2009 and in observance of and in association with the International Ostomy Association, UOAA made the following announcement:
UOAA, Jessica Grossman and IDEAS (International Disease Education and Awareness Society at http://www.weneedideas.com) have joined forces to present “Undercover Ostomy.”
Please see the social media press release at http://jdocommunications.com/socialmediarelease.html). There Jessica explains: “World Ostomy Day is a day we recognize the importance of ostomy surgeries as life-quality improvements for people suffering through terrible illnesses. I’ve had my ostomy for six years and every day I am thankful for how healthy I feel because of it. World Ostomy Day is the perfect time to show this publicly.”
The undercover ostomy project is already creating only buzz, and is on its way to accomplishing its goal - to create meaningful positive dialogue about ostomies.
UOAA announces the web-release of “LIVING with an OSTOMY”, a 17 minute video designed to help folks realize the great life that can be had with an ostomy...’realize‘ as in to know, and ‘realize‘ as in to make it happen for themselves. A major goal of this project is to fight the stigma that has surrounded ostomy for much too long. The video can be seen on the UOAA website at: http://www.uoaa.org/livingwithanostomy.shtml. UOAA’s affiliated support groups will be receiving the video in DVD format as well, to take to health care providers and facilities in their areas. There’s catchy music, great camera work, interesting people and stories as they tell how they found their way forward to doing the things they love to do, with the ostomy that gave them their life back. Hikers and cyclists, surfers and spelunkers, golfers, nurses, even kids - all average folks with a drive to LIVE their lives. Watch ALL 17 minutes - you’ll miss a lot if you stop watching when the credits roll.
Life After Ileostomy Surgery
By Jan Madaffri, via The New Outlook (Ostomy Association of Greater Chicago, Park Ridge, Illinois) My name is Jan Madaffri and I am a 23-year-old female. I only knew my future husband four months before my permanent ileostomy surgery. In January, I received my first ileostomy—a temporary—due to ulcerative colitis. It was later reversed to a J-pouch in July.
I was not in pain anymore from ulcerative colitis, but I was unable to control my trips to the toilet. This put a big damper on my social life; i.e., being a prisoner to the toilet. When I first met my husband, I only explained to him that I could not control my bowel movements due to a disease. I did not go into specifics about the temporary ileostomy that I had a year earlier. I did not feel it was important anymore since the ostomy was gone. How was I to know that I would need another ileostomy later down the line?
We were not able to go out and eat in restaurants or go to movies or clubs because my body would not allow me to be away from a toilet for very long. Our dates consisted of watching a rented movie at my house so the toilet would be close by. At times, I would be in the bathroom for hours at a time. By the time I could come back out and join him, he would be asleep on the couch. He did not seem to mind, but I hated losing that time to be with him.
After we had been dating for about four months, I needed another surgery. The J-pouch was failing and I needed a permanent ileostomy to save my life. I was ready to have the ostomy back; I was tired of living on the toilet. When I was in high school, I only attended my freshman year in the physical school building. I finished the next three years being home schooled because of the severity and complications of the ulcerative colitis. I did not want to be a prisoner any longer. When I recovered from the surgery, I was scared he would leave me once I told him what the surgery involved. I showed him a brochure that would best explain the surgery, what an ileostomy entailed and what it looked like.
He simply said, "OK". In a little over two years, we were married. He later said that when I was explaining the surgery to him, he realized just how much he loved me. He said it did not matter that I had an ileostomy; he just wanted me to feel well and to be with me.
Now, we were able to go out in public and enjoy being with each other and our friends. I swim, go out to clubs to dance, exercise; nothing is "off limits" because I have an ileostomy. In fact, without the ileostomy, many activities had previously been off limits to me.
I would still be grateful for my ileostomy even if he had left me because he could not handle it. However, I am much happier that he loves me and decides to stay. He has proven to me that there are people out there who will love you for you. Anyway—the way I see it—if anyone does not, then he/she does not deserve your love.
Health Care & Ostomies
By Peggy Christ, CWOCN and Ed Gambrell, via The New Outlook (Ostomy Association of Greater Chicago, Park Ridge, Illinois)
What do health care personnel need to know about ostomy surgery? Communication is the key.
Now that you have an ostomy or an internal diversion, some changes have occurred in the normal routines of life. This is especially true of medical treatment and hospitalization.
Some medical and hospital assumptions and routines applicable to people without ostomies may no longer apply to you. For your comfort, well-being and in some instances, your health and personal safety, it is important that you know how you need to be treated differently. You need to communicate this information appropriately to doctors and medical attendants who need to know.
Your doctor, ostomy nurse and others who normally attend your ostomy are no doubt well informed of the differences in treatment you require and will help you communicate with medical personnel uninformed about ostomy matters. The fact that some health care personnel may be uninformed is quite understandable. The staffs of the thousands of hospitals in North America see relatively few ostomy patients. Few nurses and other hospital attendants have ever cared for an ostomy patient. Many of those who have are not aware of the different types of ostomies and the special considerations each requires.
Doctors have become highly specialized to bring more expert care to patients. Therefore, many rarely have the occasion or the time to develop expertise in ostomy, which is very much a specialty in itself.
So do not be shy about communicating your condition and its special requirements to all who attend you for non-ostomy ailments. This is for their benefit as well as your own. If strong insistence should fail to bring about understanding, you have the right to refuse any procedure you consider harmful to yourself.
Dr. Marshall Sparberg, author of the excellent book Ileostomy Care and a frequent writer on ileostomy matters, has this to say: It is within the individual patient's right to refuse any hospital procedure, and no amount of insistence from an uninformed individual should change this decision.
Ostomies are different. One of the most serious misunderstandings is that all stomas represent colostomies, and that all colostomies are the same. This can be disastrous for the patient who has an ileostomy or urostomy. It can cause trouble for the person with a transverse colostomy when treated as a sigmoid colostomy. In addition, even those with the same type of ostomy require variations in care and treatment. Ostomies vary greatly in nature just as individuals vary. Irrigations and enemas: Those with urostomies should never be given an irrigation or enema through the stoma. An irrigation of a urinary stoma could cause serious kidney infection and damage. Those with ileostomies should never be given an irrigation unless a doctor, WOC nurse or other expert administers one to break up a blockage or for other compelling reasons. An irrigation or enema of the small intestine may cause the person with an ileostomy ill effect. However, a person with a colostomy may be provided irrigations; this poses little danger if it is done properly.
A stoma is not an anus. Some medical attendants do not realize the difference between a stoma and an anus. They may treat a stoma as roughly as they treat an anus. If an enema or irrigation with a catheter is involved, care must be taken to avoid bowel injury. Some catheters, though streamlined on the end, are stiff and should not be inserted into a stoma unless performed by a physician or ostomy nurse. A cone is much safer, easier to use and does a better job than a catheter.
Gay Quotes: There is never a day passes but what I think of you. By Fred Vaughn, in a letter to Walt Whitman
A Word from the Editor
Our newsletter:
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 glocontact1@aol.com. We would like to extend a special “thank you” to all of the people who have switched over to the electronically transmitted newsletter.
Contact List: 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 glocontact1@aol.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.
Policy:
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 glocontact1@aol.com.
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. Sex: We receive more requests for information dating, sex and body Image than any other topic. In case you are not aware of it, there are three articles regarding sex in the Resources section of our web site. They are: (1) Sex and the Male Ostomate; (2) Sex and the Female Ostomate and (3) Sex and the Single Ostomate. These articles were written about five years ago, but the information provided is timeless.
Gay Quotes: It takes no compromise to give people their rights…it takes no money to respect the individual. It takes no political deal to give people freedom. It takes no survey to remove repression. By Harvey Milk
Powder Your Stoma?
By Donna Hoffman, PLN, ET, Blue Water MN, via: May 2009 UOAA Update, via North Central OK Ostomy Outlook, Cedar Rapids Iowa City Newsletter
Powder is normally not required during the routine maintenance of a stoma. As a matter of fact, most modern disposable barriers are designed to adhere to the skin themselves. Powder is used to treat irritated skin or a fungal infection. Yeast (fungus, Candida) infections are very common, especially during the summer or when one perspires during regular exercise. Micro granulated anti-fungal powder is used only when there are signs of a yeast infection: i.e. an itchy rash and raised red bumps. Use the powder until the infection clears, then discontinue.
Pectin-based powders, such as Hollister’s Stoma Powder, ConvaTec’s Stomahesive or Karaya type powders, are used to treat irritated skin. To apply any kind of powder, clean the peristomal skin well with plain water and then dry. The skin should be completely dry before applying the powder. Dust the skin with the powder, gently rub it around and then brush off the excess. The barrier can be applied directly over the powder. You may also seal in the powder by applying a skin sealant over the powder and allowing it to dry.
Be careful. Skin sealants retard the adhesion of the new extended wear barriers - such as ConvaTec’s Durahesive and Hollister’s Flextend - and are not recommended. If you use a standard wear barrier, then the barrier is applied over the sealant covering the powder.
Letter to Director of Grey’s Anatomy
Darlene Hafner and the Minneapolis Chapter of the United Ostomy Associations of America. Date: November 14th, 2009 To: The Executive Producers of Grey’s Anatomy: Shonda Rhimes, Betsy Beers, Mark Gordon, Rob Corn, Krista Vernoff, Mark Wilding The Prospect Studios, ABC Television Center (West) 4151 Prospect Ave, Los Angeles, CA 90027
As a person with a colostomy, I would like to comment on the episode of Grey’s Anatomy that aired in Minneapolis. MN on Thursday Sept. 24th, 2009. Season 6, Episode 2. After managing Crohn’s Disease for over 40 years and having numerous bowel resections, I ended up with a permanent colostomy in 2003 due to surgeon error when she punctured my intestine. It was discovered too late before my kidneys starting shutting down and an emergency colostomy was performed to save my life.
I was frustrated, disappointed and alarmed during that episode, when confronted with surgery, the patient, who has a bowel infection asks, “What is the worst possible thing that could happen to me?” And Cristina responds, “You’d end up with a colostomy bag.” The patient starts to cry and responds “No, no ... no poo bag for me! My Grand Dad had one of those! I won’t do it!”
Later on in the show, Cristina is reprimanded by Dr. Bailey. Dr. Bailey says “Well, thank you very much for threatening my patient with a colostomy and talking her out a life saving operation.” She retorts back, “What was I supposed to say? How am I supposed to sugar coat a colostomy?” Once again, words like “threatening” and “sugar coating a colostomy” makes having a colostomy a negative image. I do give you credit for the exchange of words further into the episode where Dr. Bailey says to Dr Yang, something to the effect of it was a fragile situation and the patient needed time to accept it.
This short conversation sparked my anger and the catalyst for this letter. The writers of the show obviously gave no thought what so ever to the thousands of people who have colostomies.
We are not all “old Grandpas” like depicted in the patient’s comment. We are mothers, spouses, children, young, old, sisters, brothers, co-workers and employers. We have survived colon cancer, Crohn’s disease, colitis, inflammatory bowel disease, bowel resections, anal cancer, ileitis, trauma and birth defects. It was disheartening to have the patient ask, “What the worst possible thing that could happen to me?” and to have the answer be “a colostomy”. The WORST thing that could happen is that the patient could have died. I sat in front of the TV thinking.....what about all the viewers out there that may be scheduled for an ostomy due to cancer or others that have suffered years of inflammatory bowel disease that have finally decided to have the surgery and then to hear that it “is the worst thing that could happen.”
I understand that Grey’s Anatomy is just a TV series. But as successful as it is, and the number of viewers it can have an impact on, I would have thought you would have taken the opportunity to have Cristina say, “A colostomy will save your life. It may take some adjusting to, but you can have a long and healthy life with it.” But, instead, the writers portrayed it as something negative and undesirable. We, as ostomates are trying so hard to erase the stigma that goes with it and that episode certainly didn’t help. I’m sure you are aware, in real life, that ostomies have saved 1000's of people’s lives who are now leading productive, healthy and successful lives.
As a patient who endured a surgeon’s error and must live the rest of my life with a colostomy I would encourage your writers to think twice about what is written and to reflect whether anything in the script will have an impact on a certain group of people. After my surgery I turned my anger into being pro-active and being involved in something positive. I am a patient advocate and I speak not only for myself but for others about this episode. I do hope it will make a difference in how you write and how you view a colostomy....that it is NOT the worst thing that can happen to you! None of us really wanted one, but it became a necessity for some people who have had years of enduring pain and/or cancer. If a person had an artificial limb or a hearing aid, or a wheelchair other people would freely accept that, but when it comes to such a personal part of a person’s bodily function such as an ostomy, it is more difficult to accept and to talk about. I am trying to increase awareness of having a colostomy and not being ashamed of it. Your episode made me feel ashamed again. But it should really be the writers of Grey’s Anatomy that should feel ashamed of how you made some of your viewers feel.
What I Do Not Like About My Ostomy Via Evansville Ostomy News, Evansville (IN), by Don Korbin, via: Solona County Ostomy News & Chippewa Valley Ostomy Association
My colon was removed in March. It’s really gone. I know, because my surgeon brought it to my hospital room during lunch one day, six and one-half pounds in a glass beaker. It looked like a brisket. I wasn’t hungry.
I opted for a continent ileostomy. So now I’m a kangaroo of sorts, except my pouch is on the inside. Getting used to the new plumbing hasn’t been bad. Considering the shape I was in before surgery, I’d say this new system is better than the original, with one exception. The concern isn’t the stoma. Mine is less than the size of a dime…it disappears beneath the briefest of swim suits. It’s not the diet…I have no dietary restrictions. Nor is it physical limitation…I’m even contemplating cross-country skiing on Oregon’s Mt. Bachelor. No, what I dislike is the operations’ effect on one of my favorite pastimes. I used to spend many quiet moments sitting in the bathroom. Now I don’t. Dr. Koch’s efficient catheter system makes is unnecessary. A lifetime reading habit has been shattered. THAT’S what I don’t like about my colectomy.
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: thadbear@sbcglobal.net Eric L Floyd, Treasurer and Previous Chairperson, Email: efloyd8264@aol.com Bill Etnyre, bnyre@msn.com Mark Nowak, Email: macnak@juno.com 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.
Additional Resources
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 Menweb: www.menweb.org Crohn’s Disease Resource Center: http://www.healingwell.com/ibd/ Quality Life Association - for Continent Ileostomates - http://www.qla-ostomy.org/ WOCN Referral Database - Find an ET: http://www.wocn.org/secure/Source/cDirectory/NurseRefSearch.cfm http://www.healthopedia.com/colostomy http://www.healthopedia.com/ileostomy Prescription information: "http://www.eofhr.org/technology.php http://www.meetanostomate.com http://www.fow-uoa.org (NEW) 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.org/ The Continent Diversion Network: http://www.uoaa.org/forum/viewforum.php?F=8 Stuart Online Ostomy Chat: http://www.stuartonline.com/id10.html Living With A Colostomy: http://www.ostomysupport.info/chat.html Community Zero (Ostomy) Support: http://groups.yahoo.com/group/ostomatessupport/ Autoimmunity - the Hidden Link http://autoimmunity.co.uk/chat/ostomylandchat.html (British) Shaz’s Ostomy Pages*: http://health.groups.yahoo.com/group/ukostomysupport/ http://groups.yahoo.com/group/Ostomatemeetingplace/ http://health.groups.yahoo.com/group/stomacentralint/ http://health.groups.yahoo.com/group/ukstomaclub/ Newsletters:
Jacksonville, FL - http://www.ostomymcp.com/chapter/Newsletter/page1.html Evansville, IN - http://www.ostomy.evansville.net/menunews.htm North Central Oklahoma, OK - http://www.ostomyok.org/newsletter/ Vancover, British Columbia - http://www.vcn.bc.ca/ostomyvr/highlife.htm Winnipeg, Manitoba - http://www.ostomy-winnipeg.ca/woain_ot.html Cleveland Clinic - Pouch-O-Gram http://cms.clevelandclinic.org/digestivedisease/body.cfm?id=79 Gay Quotes:
I’m not going against God’s will because I love a man; you’re going against God’s will because you’re trying to put out my light and I can’t allow that. By Jason Reeves It’s time we did something to assert ourselves. After all, we do comprise 10% of the population. By Allen Ginsberg I’m Alive…You’re Alive…We Both Have Ostomies Via: Evansville (IN) Ostomy News; Ostomy Support Group of Central Indiana
They didn’t perform this surgery on us just for fun. They didn’t call it “elective surgery.” They hustled us off to the operating room to save our lives. They told our husbands, wives and other loved ones that it was necessary…or we would die...maybe not today, but sometime very soon…too soon.
So now we have an ileostomy, a colostomy, an ileal conduit (or maybe two of these) and we are alive. We are alive because of this surgery and we can accept this or reject it. We can live a secret sheltered life. We can be embarrassed and not talk about our “affliction“…or…we can say “thank you” for another chance to live this life in a helpful, hopeful way. We can tell people that an ostomy is not the end of a normal life. Sometimes they may have a loved one who must face this surgery. We can hope that because we were “normal, happy, well-adjusted and alive,” and told someone about our ostomy, their loved one would fare The
Phoenix Magazine
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