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Volume 30, Number 9 June, 2003
NEW OSTOMATE CORNER
By: Mark Shaffer, Via: Hemet-San Jacinto, CA
One of the most daunting tasks I faced as a new ostomate was returning to the society of people outside my immediate family. In-security, about the reliability of my appliance, postoperative pain, a sense of being radically different, and a lack of appropriate clothing, all contributed to a feeling of isolation. When I tried to see old friends, I would catch them looking me over to see how I’d changed. Though, I later realized that this was natural, it was quite disconcerting at first. It made me feel diminished somehow.
When I expressed these feelings to my UOA provided visitor, he encouraged me to go to the next ostomy association meeting. (“Encourage” doesn’t quite tell the story; he insisted—going so far as to pick me up and take me there”). At that first meeting, I found people with the same condition (and many with worse ones—which made it hard for me to continue wallowing in self pity). To my surprise, these people looked and acted like everyone else I knew. They were living normal lives, working, raising children, falling in and out of love just like the rest of the world did. If there was a difference, it seemed to be that they enjoyed life more than most. And, they were all very nice people, every one of them. They were more than willing to share their experiences, discuss any topic I chose to raise and suggest practical solutions to practical problems. They gave me phone numbers and told me I could call them anytime. Some of them remain friends today.
I still had adjustment problems, large and small, but I knew I could solve them and I knew there were people who would help me do so. If I was asked to give only one piece of advice to a new ostomate, it would be this: GO TO A MEETING. That one action, almost forced on me, made all the difference.
LIFE AFTER ILEOSTOMY SURGERY
By: Jan Madaffri, Via: stuartonline & Greater Cincinnati Chapter UOA
My name is Jan Madaffri, and I am 23 years old. I only knew my husband four months before my ileostomy surgery. At that time, I had a J-pouch which was slowly failing since July 1991. In January, 1990, I received my first ileostomy due to ulcerative colitis, then later reversed to the J-pouch. I wasn’t in pain anymore from ulcerative colitis, but I was unable to control my bowel movements. This put a big damper on my social life, being a prisoner to a toilet. When I met my husband, I only explained to him that I couldn’t control my bowel movements due to a disease when I was younger. I didn’t go into specifics about the ileostomy that I used to have. I didn’t feel it was important. How was I to know that I would again need another ileostomy later down the line?
We weren’t able to go out to eat at restaurants or go to movies or clubs because my bowel movements wouldn’t allow me to be away from a toilet very long. So 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, and by the time I could come back out and join him, he would be asleep on the couch. He didn’t seem to mind, but I hated losing that time to see him. As I said, four months after we met and started dating, I needed another surgery, this time for a permanent ileostomy. I was ready to have the ostomy back; I was tired of living on the toilet. I spent my 10th through 12th grades in high school in home schooling, and I didn’t want to be a prisoner any longer.
When I got home 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 and what the ileostomy was and what it looked like. He simply said, “Okay”, and a little over two years later we were married. He later told me that was when he realized he loved me, that it didn’t matter that I had an ileostomy, he just wanted to be with me. And 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, and exercise. Nothing is off limits because I have an ileostomy. In fact, WITHOUT the ileostomy a lot of things WERE off-limits to me. I DON’T LIKE TO SAY, “I DON’T WISH AN OSTOMY ON ANYONE.” Instead, I don’t wish ulcerative colitis or Crohn’s disease on anyone. Ulcerative colitis was the nightmare for me, and the best thing for me has been my ileostomy. I would still be grateful for my ileostomy even if he had left me because he couldn’t handle it. He has proven to me that there are people out there who will love you for you, and anyone who doesn’t, doesn’t deserve your love anyway.
COLOSSAL COLON
Via: Life’s Diversions, San Antonio, TX
In November of 2000, Molly McMaster, 23, appeared on “The Today Show,” telling her story about colon cancer. After the interview, Katie Couric told Molly that if she thought of anything crazy to do for National Colorectal Cancer Awareness Month, to let her know and “The Today Show” would bring her back. Molly knew she couldn’t pass up the opportunity and began to rack her brain.
In January of 2002, Molly decided to build a big colon that she could use to educate the public on how preventable colorectal cancer is. She approached design company Adirondack Scenic, Inc., in Argyle, NY and they gave her a few options. Molly enlisted their help and raised $60,000 to build the Colossal Colon, a forty-foot long, four foot tall teaching device, complete with healthy colon tissue, colon polyps, and various stages of colon cancer.
Check out the website for the Colossal Colon’s itinerary, and for more info and pictures. Visit
www.ColossalColon.com.
YOU CAN NOW SNIFF VITAMIN B 12
Via: Orange Oasis & Hemet-San Jacinto, CA
People who have the terminal end of the ileum (close to the ileo-cecal valve) removed (as part of an ileostomy or continent ostomy procedure) have lost the capability to absorb vitamin B 12 which can lead to anemia and other long-term adverse effects. Normally, after loss of this section of the ileum, vitamin B 12 must be administered via monthly shots.
Vitamin B 12 is available as a convenient nasal spray via prescription
-
Nascobal®. (Your physician usually monitors the progress of the administration.)
If you have had surgery that involved the removal of the lower part of the ileum over a year ago and vitamin B 12 has not been monitored, check with your doctor.
A WORD ABOUT THE PERINEAL WOUND!
Via: Northern Virginia Chapter UOA
If you had your rectum and anus removed as part of your ostomy surgery, you have what is called a
perineal wound, a gap in your perineum. This wound is often neglected in the care and management of patients with colostomies and ileostomies, since most of the attention is devoted to the stoma.
As a result, many ostomates are not prepared to deal with the perineal wound. Doctors and nurses tend to explain the ostomy and the need to remove the rectum, but rarely mention the “hole” left after the rectum and anus have been removed, what to do with it and how to take care of it.
The perineal wound is bounded by the pelvic bones. It is different from other wounds which just simply grow together (often after having been stitched), since it is important that the wound heal from the inside out and be filled with tissue. Healing may thus take considerably longer than “normal”; the healing time ranging from two months to even a year.
While you are waiting for the wound to heal, it may be more comfortable to sit on a soft cushion. But, do not use a donut cushion!! It has a tendency to pull the skin outward, putting more strain on the area, causing pain and slowing down the healing. Sitz baths can be both soothing and helpful, stimulating the blood circulation in the area.
Ostomates may experience the need to evacuate the rectum, even though it has been removed. Some ostomates experience the “urge” while irrigating. Such phantom sensations are the result of nerves that have enervated the rectum and were responsible for rectal continence, continuing to function, even after removal of the rectum. Often changing positions, or sitting on the toilet for a short period of time may relieve the symptoms temporarily.
Pain in the perineal wound area during the first year after surgery may be significant. It could indicate an infection of the wound. There may be healing at the skin
level, but abscesses may be forming below. Ostomates with persistent pain should see their physician.
THE SECRETS OF PREVENTING BLOCKAGES AND HERNIAS
Via: Chicago’s North Suburban Chapter & The Cleveland Ostomy Association Newsletter
Certain steps can be taken to minimize the risk of Blockages. Here are some ideas:
1. When eating, always concentrate on chewing the food. Make sure it is chewed well before swallowing. For instance, if a piece of meat appears too tough and grisly, it might be better to leave it. Don’t take the chance of swallowing it and having it cause a partial or food blockage.
2. Try new foods in moderation. Do not eat a huge helping of something you have not tried before. This is a good rule to follow whenever you eat anything. As an ostomate, it is better to eat small quantities of food at more times during the day than to eat one big meal. Always follow this rule for better health.
3. If a particular food has given you problems in the past, try to avoid it
until you feel you can do so without a problem. Most of us try very small
amounts of problem foods from time to time, and if we chew it well and drink
water with it are able to tolerate most anything.
4. Drink plenty of water or other fluids throughout the day. We should drink at lest 64 ounces, about two liters, of water a day. These include fruit juices and non-caffeine herbal teas. Caffeine drinks, alcohol in any form, soft drinks and beverages don’t count. In fact, these items actually require you to drink additional water. These drinks are all dehydrating.
With regard to Hernias, prevention is not under our control all the time. But there are certain proactive steps that we should do
routinely.
1. Never lift anything heavy. For some people, even 10 pounds may be too much. Picking up children and tumbling around with them could cause a hernia.
2. Slow down your actions and be more deliberate.
3. Try to exercise three or four times a week. This means about an hour each time. You should discuss a plan with your doctor. He/she will help advise you what is best for your exact health situation. But this warning stated, healthy people only benefit from exercise. You will build up your abdominal muscles which will prevent hernias. It is curious to note that every time a muscle is exercised, it tears a bit. When it repairs, it builds muscle. A big tear is a hernia.
4. Don’t push boxes on the floor with your feet. This can definitely put a strain on your back and cause a hernia.
Above all, use common sense. "God gave it to you as a tool, not an ornament.
Rather be safe than sorry!"
TWENTY TIPS TO PREVENT MEDICAL ERRORS
Via: The Right Connection
1.
Be an active member of your health care team. Patients who are more involved with their own care tend to get better results.
2. Make sure all your doctors know about everything you are taking. This includes prescription and over-the-counter medicines, and dietary supplements such as vitamins and herbs.
3. Make sure your doctor knows about any allergies and adverse reactions you have to medicines.
4. When your doctor writes you a prescription, make sure you can read it.
5. Ask for information about your medicines in terms you can understand. “What is the medicine for? How am I supposed to take it and for how long? What are the side effects? What do I do if they occur?”
6. When you pick up your medicine from the pharmacy ask: “Is this the medicine my doctor prescribed?” Make sure.
7. If you have any questions about the directions on your medicine labels, ask. Does “four doses daily” mean a dose every six hours around the clock or just waking hours?
8. Ask your pharmacist for the best device to measure your liquid medicine.
9. Ask for written information about the side effects of your medication.
10. If you are in a hospital, consider asking all health care workers who have direct contact with you whether they have washed their hands.
11. If you have a choice, choose a hospital that frequently performs the procedure or surgery you need.
12. When you are being discharged from the hospital, ask your doctor to explain the treatment plan you should follow at home.
13. If you are having surgery, make sure you, your doctor and your surgeon all agree and are clear on exactly what will be done.
14. Speak up if you have concerns.
l5. Make sure that someone, such
as your personal doctor, is in
charge of your care if you have
multiple health problems or if
you are in a hospital.
16. Make sure all health professionals involved in your care have
the necessary health information. Don’t assume they know
everything about you.
17. Ask a family member or friend to be your advocate and help get things done, and to speak for you if you cannot.
18. Be aware that “more” is not always better. You may be better off without certain treatments or tests. Find out.
19. If you have a test, don’t assume that no news is good news. Ask.
20. Learn about your condition and treatment by asking your doctor and nurse and other reliable sources. An informed patient is a healthier patient.
SELF ACCEPTANCE — A “MUST” FOR RESTORING INTIMACY
Via: The Right Connection
Frequently, among the first things to enter a recovering patient’s mind after major surgery is, “Will I be a whole person in the eyes of my spouse?”
Accepting oneself is the first step toward a happier marriage and sex life (at any time for that matter!) By accepting one’s self, one appears as an emotionally well-balanced and relaxed person, appealing to his or her spouse. When one has fear of rejection, fear of being unable to perform, fear of being loved, the fears can be self-fulfilling.
A healthy mutual, emotional caring for and about each other’s well being always plays the most important role in a loving relationship. Another most important ingredient is openness, a comfortable attitude that accompanies self-acceptance and invites acceptance by the spouse.
If you are concerned about how your spouse will react to change in your body, that is normal. The hardest part is accepting what you cannot change, but you must for a healthy outlook. Once you manage to banish fear of rejection and the anger of “Why me?’, you can work toward building emotional health and toward becoming comfortable with your new image.
Your spouse may have greater emotional hang-ups than you, that may be magnified by concerns for your emotional health. Your own positive attitude goes far in rebuilding the relationship, rekindling the “old spark”.
OSTOMY HINTS & TIPS
Keep grape juice in the refrigerator. If you eat something that causes a blockage, just drink a glass of the juice. It works wonders.
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, then dangle it from the spigot. You can also use the saturated oatmeal pouch like a sponge.
Scotch Guard sprayed on your elastic belt will keep it clean longer and also make it hold its shape better.
Cepacol mouthwash has proved to be one of the most effective “odor eaters” we have ever used for all fecal output. One teaspoon in your pouch will do the job.
Use a measuring spoon to measure liquid medication. The common teaspoon holds anywhere from a half to twice the proper amount.
High pectin foods: applesauce, cranberries, and plums help thicken loose stools.
Always wash pouches in cool water as hot water destroys odor proofing.
Ileostomates experience hunger more often than other people. When this happens, they should drink fruit juice or water and eat soda crackers, followed by a meal as soon as possible. An ileostomy keeps working whether you have eaten or not, so don’t skip meals to lose weight, but eat regular ones.
For colostomates, if you feel that the last of the discharge hasn’t been disposed of, blow your nose ten or fifteen minutes after you think you are through, before putting on your little pad and you will usually get rid of the last of the troublesome matter.
Use a round clothespin to roll up your tube of paste.
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