GLOCONTACT Vol 22 Issue 3, Sept 06
The newsletter for the Gay/Lesbian, and Bisexual Ostomate (or other type of diversionary procedure) their Partners, Family, Caregivers and Friends
Seniors with Ostomies
Via The New Outlook, Ostomy Association of Greater Chicago; and Indian River Ostomy Association, FL
As baby boomers age, there are a greater number of illnesses just waiting for them. Years of fast foods and stress make a breeding ground for intestinal problems. When they can no longer deny that their fast-paced lifestyles and poor eating habits have caught up to them, they seek medical help.
When tests confirm intestinal problems that require surgery, their whole world seems to explode around them when the doctor says, “You need an ostomy.” If the patient is fortunate enough to have a doctor who is aware of the local ostomy association, he/she will ask the WOC nurse managing the pre-surgery examination to arrange for a visit.
It is only when a person with an ostomy talks to other people with ostomies that the problems that seemed insurmountable are gradually chipped away. That is what the local ostomy association is all about — people with ostomies helping each other. And where is the best place to find this information and help? Why, at a monthly ostomy association meeting, of course
Measuring Your Stoma
Via The New Outlook, Ostomy Association of Greater Chicago and By Alice Bowman and Bob Baumel
We recently visited a patient with a two-year old colostomy, suffering from severe skin irritation caused by using a skin barrier with a pre-cut stoma opening the same size as originally measured in the hospital after surgery. Immediately after surgery, the stoma is quite swollen; it then shrinks for about the next six months — sometimes a year or longer.
During the initial period, while the stoma is shrinking, it is best to use a cut to-fit skin barrier and measure your stoma every time you change the barrier. Once your stoma has stabilized, you may wish to switch to a pre-cut barrier. However, you should continue to measure your stoma occasionally to see if you should switch to a different size and type of ostomy system. For instance, if you gain too much weight, your stoma may recede, thus being better served by a convex barrier.
If you fail to adjust your barrier opening as your stoma shrinks, you will eventually be using a barrier with an opening much bigger than your stoma. This leaves a large area of unprotected skin around your stoma, making you a prime candidate for skin irritation. No skin should be exposed when the barrier is in place. If you use a standard wear barrier—used by people with colostomies or even sometimes ileostomies—the gap may be filled in using a barrier paste.
How big should the barrier opening be? For most types of barriers, the opening should provide clearance of a millimeter or two all around the stoma (about 1/16th of an inch). On one hand, one should minimize the area of unprotected skin around the stoma; on the other hand, some clearance is usually necessary because many barriers contain hard materials—including plastic films—that can damage the stoma if they come in contact with it. Let us say this again, paste or one of the new barrier strips may be used to fill in the gap between the barrier opening and the stoma.
The extended wear barriers, such as, ConvaTec’s Durahesive or Hollister’s Flextend, are engineered to be sized so that they actually touch the edge of the stoma. Your ostomy supply dealer and your WOC nurse can keep you informed of the new products on the market and alternative options for using them.
Caring for Excoriated Skin
by: Diane Duran, MSN RN CWOCN N.Y. and Re-Route, Evansville, IN
If after removing your wafer you find your skin to be red, denuded of skin, painful or sensitive, you have “excoriated skin.” Excoriated skin is often caused by pulling at your wafer too vigorously, along with moisture under the wafer. When removing your wafer use a non-alcohol adhesive remover. Simply hold down your skin with the adhesive remover pad and going from side to side, gently pull your wafer down and away from your skin. After gently washing the stoma and surrounding skin with warm water, dry the skin thoroughly. Sprinkle the skin with stomahesive powder, dust off the excess and seal the powder in with a non-alcohol containing skin prep, i.e. Cavilon spray. Wipe the skin with the skin prep until you can’t see any more powder. Then instead of placing your wafer squarely on your skin put it on “diamond” shape. The next wafer change put it on your skin squarely and rotate every other change. This gives at least part of your “excoriated” skin a good chance to heal. Remember be gentle with your skin and it will be good to you!!
Laughter is still the best medicine.........
More About Florence Cohen
From: Mark Nowak, GLO Network Board Member
I first met Florence in Boston, at the UOA Conference. After attending listening and then speaking up at a GLO session, Florence came up to me and introduced herself. She told me how much courage it must have taken for me to speak up for the first time in a crowded room and discuss being gay and having an ostomy. I was already rather comfortable doing that but Florence gave me the ambition to keep telling others. Since that time I have attended most conferences afterwards, contributed to the GLO newsletter and shared my story with local newspapers and POZ magazine. I have attended many HIV/AIDS conferences, to educate myself and shared with others the stigmas that go with being Gay, an Ostomate and having HIV/AIDS. I was a known Ostomate as I carried the Olympic Torch in Buffalo NY for the 2002 Winter Olympics.
My Friend Florence Cohen
From: Bill Bonomi
I like to think Florence was just my friend, but the truth of it is she was a friend to everyone. I met Florence just before I was about to have my surgery in 1993. She was so helpful and gave me lots of encouragement.
Florence opened her doors to everyone, always willing to give a helping hand, an ear to listen, a place to stay and if you were lucky there was always some homemade Kugel.
Once while talking with Florence she made this statement: “If it wasn’t for my ostomy I never would have met all the wonderful people I know.” I thought that was a beautiful way to look at the situation. Florence Cohen was one of a kind and she will be missed by many.
Florence Cohen
by Ken W. Aukette, excerpts from Phoenix Magazine, Sept. 2006
Florence’s accomplishments have been significant. She was an intellectual presence in the establishment of both the United Ostomy Association and the International Ostomy Association and a strong supporter of the United Ostomy Associations of America. Florence saw the need and value of holding workshops at UOA Annual Conferences for ostomates with handicaps, for single ostomates by helping to organize the first “Singles Day” and for other special interest groups such as the gay and lesbian ostomates.
Florence was instrumental in gaining sponsorship from UOA to bring a young nurse, Anjali Patwardhan of Mumbai, to the Cleveland Clinic for ET training. Anjali went on to be the founder of India’s ET School of Nursing.
Florence’s many contributions to the ostomy community were recognized in 1993 when she was the recipient of the UOA President’s Award.
What To Do In Case Of A Food Blockage
Via: ReRoute, Evansville, IN; and Sharon Williams, RNET, Metro MD.,& S.NV's Town K
It may happen around midnight, that severe cramping sensation coupled with cessation of ostomy flow or watery projectile flow. When the cramps strike, that memory of having consumed some problem food follows soon afterward. What is the appropriate course of action for the ostomate Food blockage is an experience that many ostomates will have at one time or another. The enzymes of the digestive tract cannot digest cellulose or foods with high fiber content. Nuts, corn, popcorn, coconut, celery, Chinese vegetables, fruit pits, and tough cuts of meat are a few foods that may cause blockage problems.
Ileostomates who chew their food poorly, eat rapidly, do not drink sufficient liquids or have dental problems will be more prone to have food blockage. When food blockage occurs, a post-op pouch should be applied. The size of the opening should be a little larger than normal because the stoma may swell and with a clear post-op pouch, the action of the stoma may be observed. The next step, if no nausea or vomiting is present is to start forcing liquids ... coke, tea, or whatever liquid produces a rapid peristaltic movement is best. A few crackers may be eaten as a pusher. Sometimes a change in body position, such as assuming a knee chest position, may encourage movement of the bolus of food. Massaging of the abdomen may also produce the same effect. Diarrhea may follow the blockage and it is necessary to replace fluids. Gatorade may be used for replacement of both fluids and essential electrolytes. Cheese, bananas and peanut butter help slow the diarrhea. It is normal to have a sore spot in the abdomen following an episode of blockage. A low residue diet should be followed for one or two days to allow the intestine to rest. If nausea and/or vomiting occurs with the food blockage, it is necessary to go to the emergency room immediately.
My ABC’s of Ileostomy Hints, Tips, etc.
by Lisa Andrews, Fayetteville, GA; posted on the UOA General Discussion Board; July 5, 2004 and via the Stillwater-Ponca City (OK) Ostomy Outlook
Editor’s note: Lisa Andrews is also the 2003 winner of the Great Comebacks Award sponsored by ConvaTec and the Crohn’s & Colitis Foundation of America. As indicated by the word “ileostomy” in the title, some items in this list (especially “J” and “L”) are specific to ileostomates, but many of the others can be helpful—or inspiring—for any ostomate.
Always be thankful for your health!
Be patient with yourself as you learn ostomy care – it takes time to adjust after surgery.
Change your appliance in the morning before breakfast, and take your shower with the appliance off. You can wash the skin, and soap & water. It won’t harm the stoma.
Drink lots of fluids during the day.
Empty your pouch before exercising, bathing, or going to bed.
Find the pouching system that you are comfortable with and have confidence in.
Groups like UOA chapter meetings and CCFA support groups are very beneficial and informative.
Hydrogen peroxide makes a great, inexpensive pouch deodorizer. Just a squirt in the pouch after emptying and before attaching the tail clip eliminates odors.
Irritated skin can occur; if it lasts more than a few days, call your doctor or ET nurse.
Juices like tomato and V-8 will come out exactly the same way they went in!
Keep an “emergency kit” with your pouch, wafer, skin care products, etc. in your purse at all times.
Laxatives are usually not necessary as prep for small bowel X-rays; clear liquids for 24 hours will normally clean out the small intestine adequately.
Mail off for all the free samples you can – you never know what new products you may come across.
Name your stoma if you wish!
Organize your supplies in a single & convenient location so you always know what you have on hand.
Pack ostomy supplies in carry-on baggage when flying.
Quiet down your stoma (for meetings, church services, etc.) by taking one Immodium A-D about 30 minutes beforehand.
Reduce your chance of leaks – change your appliance at least weekly or more often as the manufacturer suggests.
Share your experiences with others – especially new ostomy patients and those contemplating surgery.
Two-piece systems are great for “burping” to release excess gas.
Underwear can still be sexy with an ostomy – you don’t need to sacrifice form for function!
Visit or call your ET nurse as needed – they are there to help.
Wait at least 2 hours after eating before going to bed. You’ll be less likely to feel the need to get up and empty your pouch in the night.
eXamine your stoma and surrounding skin weekly for changes.
You are the one in control – not your ostomy.
Zest for life – what illness took away, your ostomy and good health can return to you!
Oral Drug Absorption
By Delceda G. Walker, RhP, via The New Outlook, Chicago’s North Suburban Chapter
Whenever anyone takes a narcotic pain reliever, one risks the high possibility of constipation. This is not much of a concern for someone with an ileostomy; however, narcotic analgesics will slow peristalsis. People with colostomies that irrigate should be aware of the likelihood of a disruption of heir normal elimination pattern. Narcotic derivatives employed as anti-diarrheal agents are often used to alter excessive ostomy output.
Antibiotics decrease the bacterial content, which metabolizes food into fecal matter. When these bacteria are killed, the result is a liquid stool, which can result in diarrhea. Ampicillin, cephalosporins and sulfonamides have the potential to alter normal bacterial flora of the intestinal tract. Ileostomy patients may experience dehydration and electrolyte losses.
The influence of antacids on the ostomy patient depends upon the type of antacid used and the type of ostomy the patient possesses. Sodium bicarbonate antacids; i.e., Alka Seltzer, baking soda, etc., should generally be avoided because of their high sodium content. These antacids may precipitate or worsen congestive heart failure in susceptible patients. The magnesium containing antacids; i.e., Ripan, Maalox, Gelusil, Mylanta, must be used with caution in patients with ileostomies because of their propensity to cause an osmotic diarrhea.
Patients who have issues with excessive ostomy output when taking magnesium aluminum combination antacids, may benefit from a change to an aluminum hydroxide gel antacid or to a calcium containing preparation; i.e., Tums, Titralac, Amphogel. Patients with constipation secondary to aluminum-hydroxide-gel antacids may benefit by using a product containing magnesium.
The ileostomy patient should be closely monitored for electrolyte depletion if a diuretic is necessary. The diuretic induced potassium loss added to the potassium loss of the ileostomy will necessitate potassium replacements. Potassium depletion may be offset by consumption of high potassium foods like fresh fish, nonfat milk, veal, beef, pork, split peas, potato chips and squash. Because of the risk of dehydration, loop diuretics like Lasix and Bumex should be used with great caution in ileostomy patients.
Thiazide diuretics—HCTZ—decrease urinary excretion of calcium. They are sometimes useful in patients who are at high risk for development of calcium stones.
Urostomy Care
Forward By Rose City Ostomy News, via The New Outlook, Chicago’s North Suburban Chapter, January 2005
· The person with a urostomy should know that the stoma shrinks for several months following surgery.
· It is important that your appliance fit well so that the skin around the stoma does not become thick and white due to contact with urine. This crust may rub against the stoma causing bleeding.
· Do not use an ostomy paste with a urostomy, because the residue from the paste can back-up into the conduit and even the kidneys causing infection.
· To cleanse the pouch of crystals, soak it in a solution of one-part vinegar to two-parts water.
· A glass of cranberry juice each day may help restore the acid level in your body. Taking Vitamin C also helps. An acidic body may result in less pouch crystallization and lower the risk of urinary infections.
· Empty the urinary pouch often; i.e., when the pouch is no more than about 1/3 full.
· Keep the outside of the pouch clean, then there will be no odor emitting from it. Modern ostomy systems are odor-proof. If there is any odor noticeable when the system is closed, there is probably a leak somewhere that should be repaired. Of course, the inside of the pouch has the smell of urine, but this should only be apparent when emptying the pouch in which case you smell like all other people.
· The portion of the intestine—usually the ileum—that is used to form the “conduit” is mucous forming. Thus, it is neither unusual nor abnormal to see some mucous in the urine. This will appear as cloudy urine and is normal and healthy.
· Before attaching the night drain, leave sufficient urine in the pouch to fill the entire length of the tube. This eliminates air bubbles, which prevent a flow through the tube, and causes “back-up” issues. Filling the tube creates a vacuum from the pouch into the reserve, therefore, effectively draining the urine from the pouch to the night drain.
· For good results, you may want to change your appliance first thing in the morning before you eat or drink. Your stoma may not be as active at this time, therefore providing you some extra time to dry the peristomal skin and put the new ostomy system in place.
· Before you begin to change your ostomy system, bend over first. This will sometimes force out the remaining urine in your conduit offering you a few minutes of inactivity to complete the change.
Life with a Pull-Through
via The New Outlook, Chicago’s North Suburban Chapter - May, 2006
By Charlotte Triangle
I was asked to share with you what my life is like living with a pull-through. Ironically, I was asked right after a program at our ostomy association about it. Pull-through surgery was explained and the advantages and disadvantages discussed. Unfortunately, in my opinion, very few advantages and numerous disadvantages of living with this procedure were highlighted. Well, I guess, I am here to share the advantages.
I was diagnosed with ulcerative colitis (UC) in 1988 at the age of nine. I lived with the disease for 16 years before deciding that I was simply tired of being sick. I had been fortunate that during those 16 years, flare-ups were infrequent, and with medication, I was able to put up with the challenges of UC. I guess I became accustomed to being tired and always knowing where the nearest bathroom was located.
After graduating from college, I married my best friend, and it was then that my priorities, as far as living with my UC began to change. I did not want to tolerate being sick anymore. I wanted to start a family and get on with a healthy life. I discussed surgical options with my doctor and made the decision to have the pull-through procedure (j-pouch).
My pull-through was accomplished in two operations eight weeks apart. In the first surgery, my colon was removed and the small bowel was reconstructed for a j-pouch. I received a temporary ileostomy while my j-pouch healed. Eight weeks later, after the reconstruction areas had healed, my stoma was closed allowing me to use my rectum once again.
That was two years ago. Today, I live a very health, a very active lifestyle. I do things daily that were never an option to me before. I was running two miles a day within six weeks of the second procedure. As a child, I was medically excused from gym class. Last year, I went tubing down the Guadalupe River with my family in the summer, whereas before, when I had UC, I would never have trusted myself to be away from a restroom for that long. Today, I am able to chase after our new baby boy like any other young mother. My life is normal now. I have a great asset . . . my health.
The advantages of the pull-through procedure in my case have been overwhelming. Most importantly, I do not have UC anymore. I have been completely cured. I do not wear an external ostomy system nor do I have a permanent ileostomy. I have never had a terrible rectal leakage problem, not even at the beginning. My trips to the bathroom have reduced drastically to about a dozen per day. I only get pouchitis about twice a year. I now have the option to eat whatever foods I choose with very few repercussions. I do not take any medications—except some anti-diarrhea meds to slow my transit time down—and consequently very few people know I was ever sick.
I cannot say that I have never had any serious issues managing my j-pouch, I have. Overall, this procedure has worked beautifully in my case. To have the option of not having a permanent ileostomy is exciting to me. I am very happy I chose this type of surgery and encourage others with UC to research this option to see if it would also be right for them.
The Overactive Ileostomy
Via The Green Bay Ostomy Support Group, via The New Outlook, Chicago’s North Suburban Chapter - May, 2006
An overactive ileostomy can be due to a number of issues. If the small bowel were inflamed, due to Crohn’s Disease, radiation injury, or bacterial/viral gastroenteritis, the output would be profuse. If there is narrowing of the small bowel close to the stoma; e.g., where the ileostomy goes through the abdominal wall, there can be pressure backup leading to explosively high output.
Any food that has a laxative effect should be eliminated or at least minimized. Such foods can vary from person to person; however, common offenders include coffee (caffeinated and decaf), certain types of fruit (raisins, prunes or plums), fruit juices, fresh corn, beer, broccoli, cabbage, cucumbers, onions, rhubarb, and beans and legumes. Some people have milk sensitivity. They will not tolerate milk products, including powdered milk, which is found in many prepared foods that one would not ordinarily suspect. Milk sensitivity can be acquired as an adult and should be considered even if there were no problems using milk in the past.
Excessive drinking of fluids will also increase the ileostomy output in sensitive people. One should not overdue fluids, if there is a regular output problem. Excessive bile acids from the liver can cause increased output, especially in patients who have had their gall bladder removed. Many medicines obtained from both over-the-counter and prescriptions list diarrhea as a side effect. This must be kept in mind when trying to figure out the cause of the high output. The patient should work with his/her doctor and a dietician to evaluate the problem.
Once disease has been ruled out, therapeutic emphasis can be placed on diet: bowel-slowing medication should be used judiciously. Foods that decrease output include chocolate, peanut butter, tapioca, banana, and rice. Psylium seen, the main ingredient in Metamucil and similar bulk laxatives can be taken as a paste. This is done by mixing one tablespoon with just enough apple juice to obtain an applesauce consistency. This mixture taken with each meal will solidify some of the liquid output. Medicines counteracting bile salts can be used for diarrhea if related to the removal of ones gall bladder.
You Have Adjusted to Your Ostomy When...
via Hemet-San Jacinto (CA) Stoma-Life; and North Central OK Ostomy Outlook
You stop spending all of your spare time in the bathroom waiting for your stoma to work so you can empty the pouch right away.
You can move about freely, without holding your appliance as though it might fall off any minute.
You make that first trip to the mailbox without taking along your 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 begin go 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 rather than staying at home worrying about it all.
Living with an Ostomy
By Florence Weber-Javers, CWOCN, via The New Outlook, Ostomy Association of Greater Chicago
Remember when you were in the hospital . . . you were told you would have to live with an ostomy? When you looked at your stoma for the first time, what was your reaction? Most likely, you were shocked, depressed, seared. You could not imagine how you were going to live with "this thing". How far have you come since then? Do you still call your stoma "the thing”, or have you given it a special name? Do you sometimes even forget that your stoma exists? Everyone's adjustment is a bit different, but I hope that you have accepted your stoma. I tell my patients, "You do not have to like the stoma, but you do have to learn to live with it”.
You rule your stoma
You need to take the time to take good care of your stoma but not let it rule your lifestyle. In other words, "You rule the stoma. Do not let it rule you." After all, you are the same wonderful person you were before your surgery.
Help is available
You need to know some basics to reach a satisfactory point of control over your ostomy. You need to know how to take good care of your stoma and surrounding skin, what information is available to help you and where to obtain sound advice. You also need to take that information and assimilate it to fit into your own lifestyle. One reason you see so many products in ostomy catalogs is not to confuse you, but to help you find the right products so you may personally choose the best way to get on with living. Your local ostomy association is an excellent source of information, advice and support. Use this resource for the benefit of yourself, and for the benefit of others. You know, we want to hear about your story, and about your successes.
Does it hurt?
First, you need to know about your stoma itself. It is red and looks as if it ought to hurt. However, the stoma is actually your intestine, which does not have any nerve endings. Reassure your spouse about this. Your mate may be afraid of hurting you if the stoma is touched. A person with an ostomy may feel rejected because of the mate's fear to touch him/her. If your spouse understands the stoma has no feeling and will not hurt you, he/she will be more at ease.
Learn to live with it
Your attitude is also important. If you cannot accept your stoma, how can you expect someone else to accept it? Remember, you do not have to like it, but you must learn to live with it. I am sure there are other parts of your body that you would like to change. Maybe you think your nose is too big or your thighs are too large. Maybe your eyesight is not what you would like. These are all unique characteristics we learn to live with. Your stoma is just a new part of you that you learn to live with. Remember the symbol of the United Ostomy Association of America is the Phoenix. The Phoenix is the mythical bird that was raised from the flames. People with ostomies are "raised from the ashes of disease." You do not have to like your stoma, but you do have to live with it. There are people who said, "I could never live with one of those." And you know what . . . they don’t.
Should I worry about bleeding?
The reason your stoma is red and your stoma bleeds easily is that the blood vessels in your intestinal lining, which is what your stoma is made from, are very close to the surface. This is why it is important for you to be gentle in cleaning your stoma. A small amount of bleeding is normal and do not be concerned about it.
Excessive bleeding should be reported to your doctor or WOC nurse as needed. Excessive bleeding means more then a drop or two. If you touch it with a tissue, you may notice some red on the tissue. This is what is normal. If you have much more of this, meaning you actually witness bleeding, see someone immediately. This is not normal. Anytime we are bleeding, it is not usually good. Check with a health professional about it.
Make sure nothing constricting is riding over your stoma, reducing the blood supply needed to keep this vibrant tissue alive. Elastic belts over your stoma are usually okay, but a leather belt does not give enough to ride over your stoma if it is on your beltline. Ideally, your stoma is located below the beltline, but sometimes it cannot be surgically positioned in the ideal site.
Isn't it supposed to be round?
Stomas come in all sizes and shapes, just as all of us do. If you are worried that your stoma does not fit exactly into one of those cute measuring guides with the perfectly round holes, do not be discouraged. Most stomas are not perfectly round. The measuring guide is just that, a guide. You customize it to fit your personal need. This is a vital point. The correct size for your equipment is extremely important. Always measure your barrier to the correct size, no matter how it is built. Just like us, stomas come is all shapes and sizes.
The right fit
Initially after surgery, your stoma is probably swollen. It will decrease in size. Your nurse should show you how to measure your stoma correctly. Measuring is an ongoing concern. Incorrect sizing of the stoma creates most of the problems I see after surgery. You want the opening in your pouch or adhesive to fit as closely as possible to the stoma. Many barriers do not require any gap between the barrier and the stoma, others, with harder barriers; require leaving a 1/16" to 1/4" border from your stoma.
This is to allow your stoma to change size and shape. Yes, your stoma does move and change size slightly with the normal peristaltic waves of your intestinal tract, of which it is, after all, a part. A soft pliable substance is usually used directly around the stoma, such as a paste or a barrier seal, to fill in this 1/16" to 1/4" gap around the stoma. It acts as a washer or caulk to protect the skin directly around the stoma, and to protect the seal of the pouch to your body. The more liquid the discharge from your stoma, the more important the caulking compound is. Liquid effluent usually breaks down adhesives faster than solid. Urine is sterile, and it is not caustic.
Which ostomy system?
Now that you know what size your stoma is and the importance of skin protection, let us discuss what type of ostomy system you will be wearing. Maybe you are still wearing the same type you had when you were discharged with from the hospital. This is perfectly okay if you are comfortable with it.
If you are not happy with that type of ostomy system, decide what it is that you do not like and try finding another type that is more compatible with you. Take advantage of the great variety of products on the market.
Sometimes it makes a difference where your stoma is located to determine the best ostomy system for you. Remember, you are trying to find what will best fit into your lifestyle. You can listen to your doctor and nurse's advice as a guide, but you are the one wearing it. You should be as comfortable as possible. Find what will best fit into your lifestyle.
Most people with an ileostomy wear drainable one-piece pouches, whereas most people with colostomies wear two-piece closed pouches. These all come in different lengths, shapes and materials. Shorter pouches are better for shorter people so the end of the pouch does not rest in an uncomfortable position. Most people in America prefer an opaque pouch material or color, one you cannot see through. (In Germany, people want the clearest pouch they can find.) Also available are pouch covers or "necessities" which are actually underwear to conceal the pouch, and prevent it from adhering to your skin or causing perspiration underneath it. Some people swear by pouch covers. Others have no use for them. Take the time and trouble to find what is most comfortable for you.
Some people like to wear closed end pouches. These are closed off at the bottom and are usually disposed of or emptied and snapped back on when half-full. Closed pouches may be supplemented with liners, which reduce the cost of using them. Most people find it convenient to wear disposable ostomy systems. Some like to use a mini pouch for special occasions or intimate moments. Unless you have good control of a colostomy via irrigation, a mini pouch is designed for short-term use; e.g., for swimming, sexual relations or working out in the gym. A new development has taken place over the last few years. More and more people are using the smaller pouches on a regular, daily basis. They have a sporty look to them, and are less intrusive to wear.
Can I switch ostomy systems?
A two-piece system is available for anyone to use. These enable you to change the type of pouch you are wearing without removing the adhesive barrier each time. You would also be able to see the health of your stoma more easily. In addition, a two-piece ostomy appliance utilizes a small flange that protrudes from the barrier. This helps protect the stoma from some injury. Remember, you want to select equipment that best fits into your lifestyle. You want it to be compatible with your activities.
Some people use one- and two-piece system. They change between these because of different activities in which they are engaged, or just for something different. In fact, some people even change between manufacturers to keep the peristomal skin from becoming allergic to one brand. In addition, if you are able to use more than one system, you are not as dependent on a particular manufacturer making your particular system. They do change product lines ever so often. You want to anticipate this.
Do I need a support belt?
Any abdominal surgery cuts through abdominal muscles and may weaken them. Peristomal surgical support belts are available in different widths to accommodate different needs. Some people like to wear a support belt for physical activity such as bowling, gardening, working out in the gym or performing physical labor on the job.
Such a belt can help prevent complications, provide support for a peristomal hernia, or provide abdominal support just for comfort. Support belts come in 1-, 3-, 4-, 6- or 9-inch widths. They are elastic, fasten with a Velcro like material, and have an opening cut to fit around the ostomy pouch. Most people with ostomies do no wear belts anymore. They are still made for special situations and needs. Discuss this with your WOC nurse. She will be able to help you determine if a support belt will be of benefit.
Peristomal hernias
A few words about peristomal hernias . . . developing a hernia around the stoma is a common complication because of the necessary weakening of the abdominal muscle. This occurs when the surgeon cuts these muscles during surgery. Even with the newer laproscopic procedures, the stomach muscles are weakened. The area particularly vulnerable is where the surgeon pulls the intestine through the abdominal wall. Such a hernia is characterized by a large bulging around the stoma. If in doubt about whether you have developed a hernia, check with your doctor or WOC nurse.
Remember, after any type of surgery, the best way to avoid complications is to exercise. When you are able, begin walking two or three times a day. Start out slowly under the advice of your doctor. Gradually build up the distance you walk. Six to nine months after surgery, start other abdominal, arm, leg and body muscle building exercises. Never stain yourself. You will not only gain strength, look good and feel healthy, but you will reduce the risk of hernias. Muscles repair faster and better than fat does. There are health professionals to advise you in this area. Use their help. This is a very important issue. Many problems are caused from lack of physical activity. Eliminate them… exercise.
Stomal prolapse
Another complication is a prolapsed stoma. This happens when the stoma keeps protruding more and more from the abdominal wall. It looks like it is actually growing. It is falling out of the body. It does not hurt because the stoma has no feeling. It is harder to manage because the pouch must be maneuvered more carefully to be applied. As with a peristomal hernia, a prolapse can be cured only by surgery.
It may be contained where additional damage is slowed and is less uncomfortable by wearing a peristomal support bell. Usually, wearing such a belt does increase your comfort. The surgery requires that the doctor repair the tissue around the stoma and rebuild it. This sometimes can be done at the same site. Very often, the stoma must be moved to the other side, lower, or in extreme cases, higher. There are stomas almost to the rib cage. These are very difficult to manage.
Summary
It is test of character. Having an ostomy in not easy, yet it is not really hard. The most difficult part of the surgery is psychological adjustment. If you are able to muster the strength of character to accept your body, then you will have the best attitude to attack the physical issues with more success. Be happy. You've been given a new life.
Medical Aspects of an Ileostomy
Courtesy of UOAA - July, 2006
The new ileostomate may find it difficult to believe that life without a colon can be completely healthy. To understand this, one needs to know what is the normal function of the colon or large bowel, which has been removed.
This organ is only found in land animals and its major function is to absorb water from the food residue. When animals first moved from the sea to the land, they moved from a world where water was plentiful to one where it might be very scarce, and they adapted to this by developing the colon as one means of avoiding dehydration. The only other substance that is absorbed from the colon is salt. All the other things we get from our food and which we need for energy and health are absorbed from the small intestine which is unaffected by the usual operations for ulcerative colitis.
People with an ileostomy get just as much from food—whether carbohydrates, fats or proteins—as anyone else. The other function of the colon is to act as a reservoir for the waste products of the body until there is a convenient moment for disposing of them. This function is simply taken over by the pouch whether external or internal.
(Dr. R.B. Kelleck, Great Britain)
Adhesions
Via The New Outlook, Ostomy Association of Greater Chicago: July, 2006 and Health Central
An adhesion is a scar tissue that binds together two anatomic surfaces that are normally separated from each other. They are most commonly found in the abdomen, where they form after abdominal surgery, inflammation or injury. Lysis (destruction or dissolution) of adhesions is a surgery performed to free adhesions from tissues.
Although sometimes present from birth, adhesions are usually scar tissue formed after inflammation. The most common site of adhesions is the abdomen, where they often form after peritonitis—inflammation of the abdominal lining—or following surgery, as part of the body’s healing process. Abdominal adhesions infrequently bind together loops of intestine resulting in intestinal obstruction. The condition is characterized by abdominal pain, nausea and vomiting, distention, and an increase in pulse rate without a rise in temperature.
Nasogastric intubation and suction may relieve the blockage. If there is no relief, an operation is usually required to cut the fibrous tissue and free the intestinal loops. Although scar tissue within the abdomen can occur after any abdominal operation, they are more common after a ruptured appendix. Most adhesions cause no problems, but they can obstruct the intestine in about two percent of all patients.
These obstructions can occur several years later. The adhesions can also block the ends of the fallopian tubes, possibly causing infertility. Adhesions can occur elsewhere and can be the cause of other disorders—for instance, they can lead to glaucoma when located in the eyes, and when located around the heart can result in pericarditis.
Here are some questions to ask your doctor:
>>> How do you know the problem is adhesions and not another growth or condition?
>>> Is surgery recommended to remove the adhesions?
>>> What is the procedure?
>>> Will the adhesions redevelop?
To get more complete and comprehensive information about adhesions, go to: http://www.adhesions.org/
Speaking English
A U.S. Navy Admiral was attending a naval conference that included admirals from the U.S., English, Canadian, Australian and French Navies. At a cocktail reception, he found himself standing with a large group of officers that included personnel from most of the countries.
Everyone was chatting away in English as they sipped their drinks but a French admiral suddenly complained that, whereas Europeans learn many languages, Americans learn only English. He then asked: "Why is it that we always have to speak English in these conferences rather than speaking French?"
Without hesitating, the American Admiral replied: "Maybe it's because the Brits, Canadians, Aussies and Americans arranged it so you wouldn't have to speak German." You could have heard a pin drop.
Dating, Sex and Body Image
Some GLO members have requested articles concerning Dating, Sex and Body Image. In compliance with their requests, the next newsletter will address these subjects.
Gay Quotes
Like the great majority of men I’ve had several homosexual experiences and I’m not remotely ashamed of it - Marlon Brando
Chicago Will Host the First National Conference of UOAA
via The New Outlook, Chicago’s North Suburban Chapter
The United Ostomy Associations of America will have the first national conference at the Marriott Lincolnshire in Lincolnshire, Illinois, just north of Chicago. The conference will take place on August 16-19, 2007. These conferences are always a great source of information about the care and maintenance of your ostomy. It is a must for all ostomates, especially for first timers.
Please notify us if...
* you have moved;
* you have a new E-Mail address:
* your area code or telephone number has changed; or
* you want to volunteer
Gay Quotes
How many straight New York City waiters does it take to change a light bulb? Both of them. - Anonymous
When, at the age of twenty-one, I walked into my first gay bar (The 1270 on Boylston Street in Boston) it was like walking through the looking glass for the first time to the right side... I knew the sheer joy of seeing women dancing with women and men with men, understanding for the first time why anyone would want to dance with anyone. Nancy L Wilson
The Phoenix Magazine
For any of our members that want to receive The Phoenix, the official magazine of UOAA, it is a separate item for you to purchase. To subscribe the yearly cost is $25.00. Checks should be made out to: The Phoenix, and mailed to PO Box 3605, Mission Viejo, Ca. 92690. Payment may be made by check/Visa/MasterCard. You may also subscribe by going online to: http://www.uoaa.org/Phoenix.shtml
For all of this to continue there is one requirement. All of you reading this newsletter must make a commitment to keep the GLO NETWORK and the United Ostomy Associations of America alive by being an active part of the picture.
Gay Quotes
Homosexuality is nothing to be ashamed of, no vice, no degradation, it cannot be classified as an illness. It is a great injustice to persecute homosexuality as a crime and a cruelty too. - Sigmund Freud
All of my sexual experiences when I was young were with girls. I mean, we didn’t have those sleep over parties for nothing. - Madonna
There is no torment in coming out. The torment is in being in. - Armistead Maupin
I don’t consider my homosexuality a political thing. I consider it a sexual and spiritual thing. I only started going to political rallies to meet women. - K. D. Lang
There is nothing mixed up about a woman who loves women, who wants to have sex with them, or who identifies as a lesbian. It is society that is mixed up because it punishes people for not conforming to its gender stereotypes - Edward Stein
The single most important thing you can do politically for gay rights is to come out. Not to write a letter to your congressman but to come out - Barney Frank
CONNECTIONS
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: thadbear@sbcglobal.net
Eric L Floyd, Treasurer and Previous Chairperson: efloyd8264@aol.com
Bill Etnyre, bnyre@msn.com
Armand LaFleur: pallafleur@aol.com
Mark Nowak: macnak@juno.com
Tom Beem, Webmaster: soaringeagle2@cox.net
Frank Mazzo, Membership: frankmazzo@hughes.net
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: http://www.uoaa.org/
Gay and Lesbian Medical Association: http://www.glma.org/
WebMD: http://www.webmd.org/
Mautner Project for Lesbians with Cancer: http://www.mautnerproject.org/
Centers for Disease Control: http://www.cdc.gov/
United Ostomy Association (Canada): http://www.ostomycanada.ca/
International Ostomy Association (IOA): http://www.ostomyinternational.org/
Menweb: http://www.menweb.org/
Gay Ostomates (United Kingdom): http://www.gayostomates.org/ NEW
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
The J-Pouch Group: http://www.j-pouch.org/
The Pull-Thru Network: http://www.pullthrough.org/
The Continent Diversion Network: http://www.uoa.org/networks_cdn.htm
Living With A Colostomy: http://www.ostomysupport.info/index.html
Crohn’s Disease Resource Center: http://www.healingwell.com/ibd/
Ostomy Chat Room: http://www.stuartonline.com/id10.html
Shaz’s Ostomy Pages*: http://st80.startlogic.com/~ostomate/cgi-bin/yabb2/YaBB.pl
(*) This site contains useful information and various message boards, including, one for Gay and Lesbian ostomates. The Gay and Lesbian message board is monitored by Nathan from Las Vegas. This site originates from Australia so it has an international point of view.
Newsletter Links
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/
Vancouver, British Columbia: http://www.vcn.bc.ca/ostomyvr/highlife.htm
Winnipeg Ostomy Association: http://www.ostomy-winnipeg.ca//woain_ot.html
Cleveland Clinic- Pouch-O-Gram: http://cms.clevelandclinic.org/digestivedisease/body.cfm?id=79
Additional links are listed on our Web site.
Time To Renew
On October 1, 2005 the GLO Network began a policy of paid membership dues in order to sustain itself as a viable organization serving the Gay and Lesbian ostomates. It is hard to believe that a year has gone by since then.
In order to assure your continuation as a member of the GLO Network and receive your GLO newsletter, please complete the Remittance Advice, and include with your check for $15.00 (U.S. Dollars) payable to “GLO Network” and mail to:
Eric Floyd, 2067 Penguin Avenue, Akron, OH 44319-1208
If your membership renewal is other then October 1st, you will be notified of the expiration date.
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Remittance Advice
Name:______________________________ Address:____________________________
City, State, Zip Code:______________________________________________________
Type of ostomy: __________________________
I want to be on the Contact List: Yes____ No____
I have email: Yes____ No____
My email address is: _______________________________________________________
Reminder - y