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Volume 30, Number 1 October, 2002
IT’S A MATTER OF SHARING
Via: Ostomy Insight & The Green Bay “Ostomy News Review”
I know a man, a colostomate, when asked why he didn’t join the ostomy chapter said, “I’ve adjusted just fine. I don’t need the group.” His complacency set me back a bit! I thought it over.
So, maybe he doesn’t need the chapter (whatever that means), but the group needs him and others like him—well adjusted ostomates who walk around flat-tummied and non-odorous (I’m not talking about after-shave or perfume)!
An ostomy chapter is not a “half-way house” sort of thing. We don’t get together to feel sorry for ourselves, to talk exclusively about the “fun and games” of our various operations. We get together because we want to help each other or maybe to get some help with some little problem that’s been bugging us. Something our doctors can’t answer but another ostomate can.
We want to prove to all those non-believers (OOPS!, guess I’d better call them skeptics) and non-ostomates who may think an ostomy is the end of the world—well, it’s not!!! In most cases, it’s the beginning. We are alive because we are ostomates!!!
MY J-POUCH SURGERY
By Dave Hirshhorn, story edited by the “Re-Route, Evansville, IN Chapter
“The bottom line is, when your health is at stake and/or your quality of life is nil, then it’s time to get surgery.”
It’s a hard decision to make, especially when you can remain active. I started with Ulcerative Colitis in 1979. After getting the initial flare-up into remission, I had a few trouble-free years with only an occasional “glitch.” I quit smoking in 1988 and started having increased flare-ups. In March of 1992, I got the full-blown flare that lasted until October 27, 2000 when I had the first of two surgeries. At times, it would take me almost a whole bottle of
Imodium just to buy me 15 minutes to drive to the doctor’s office. In 1993, my gastroenterologist put me on prednisone and I have been on it ever since despite efforts to taper off. Each time met with another flare-up. In June of 1999, I started my final downhill slide. By October of that year, I was slowly bleeding to death.
I finally ended up in the hospital and wouldn't work again
until after having surgery. It took 10-days of a two week hospital stay to get my blood chemistry under control. I had tolerated the high dosages of prednisone fine until then. By this time the high dosages of prednisone were wreaking havoc on my body. When I relapsed again in May of 2000, my doctor doubled my dosage of prednisone and I continued to decline, so he doubled it again and said, “It’s time to see a surgeon.”
At this point, I had no choice. My doctor had been talking to me about having surgery to remove my colon for
over 2 years. He was concerned over the damage the prednisone was doing to my body. I now have 18 different side effects attributable to the prednisone.
I made the decision to have surgery when I came to the J-pouch site and saw that even people who had less than desirable results would do it all over again because they were off the meds and had control of their lives back. I was so excited, that I stayed up until 4:30 in the morning reading the information on the site and what people had posted. When I woke up the next day, I called the surgeon’s office for an appointment to get on the surgery schedule.
Creation of the internal pouch involved two surgeries,
the first of which gave me a temporary ileostomy. I
did not have any trouble with that and so it was not a big deal to me. Because
of the long-term prednisone use, I had to wait 5 months for the takedown of the ileostomy because my surgeon wanted to be sure the pouch was fully healed before bringing it online.
I can now walk out of the house, without fear of having an accident and without fear of not knowing where the nearest bathroom is. I can now go and watch my two daughters at their soccer games, dance demonstrations and orchestra concerts, all things I couldn’t do for the last several years. I was able to return to work full-time in July of 2001 and have been there since. Most days, I go 4 to 6 times a day and have excellent control, most nights I sleep 6 to 8 hours ( I make sure to empty the pouch before I go to bed). I eat whatever I want, including hot, spicy foods.
I know it is a hard decision to make and it is not an easy surgery, but it can be a liberating thing and a real boost to your entire health! Editor’s note: To find out more about Ileoanal Reservoir (pouch) Surgery, and whether this type of ostomy surgery may be right for you, visit the J-Pouch web site at:
www.j-pouch.org
ILEOSTOMY LAVAGE
By: Dianne Garde Via: Loraine Co.
Ostomy Chapter
When someone with an ileostomy encounters a blockage, it is important to know how this should be treated. The term “Alavage” is used rather than irrigation.
In the ostomy realm the term irrigation generally refers to someone with a colostomy who gives themselves an enema on a daily basis to clear the colon of stool. The amount of water used is probably between one and one half
liters. Trying to instill this amount of fluid into an obstructed ileostomy could be potentially dangerous as the pressure could cause a perforation.
The generally accepted method of treatment of ileostomy obstruction is to use saline (sodium chloride) to prevent dehydration and to utilize a bulb syringe with an open ended whistle tip, 24Fr or 26Fr, catheter.
The solution is sucked into the bulb syringe and gently instilled into the catheter and the contents sucked back into it again in an effort to break up a food bolus. This should be done a number of times until the saline comes back clear.
I would not recommend that ileostomates try this procedure unless they have the proper equipment and have been taught by an
Enterostimal Therapist. This should not be attempted until an x-ray has been taken to determine that it is a food bolus and not a mechanical obstruction.
I would also recommend that if you feel you have an ileostomy blockage that you try to get to a major centre where there is qualified personnel familiar with the proper procedure to deal with the problem appropriately.
About the Author: Dianne Garde is a Certified Enterostimal Therapist. Dianne can be reached at :
wcet@on.aibn.com.
THOSE FIRST FEW APPLIANCE CHANGES
By: An “old timer” Via: Up Front 12/99 & Indianapolis , IN Chapter
Zinging through another change the other day, my mind wandered, as it often does when I am doing some routine chore. I’ve had an ileostomy for more than ten years and have had more than 600 appliances. I use the typical two-piece with a flexible wafer that sticks to my abdomen.
What I got to thinking about was a problem I had with my very first few appliances—getting the old one off. To work right, the wafer has to stick really well; otherwise it will come loose and make a mess, usually at the worst time and place. The problem I had was that it hurt to pull off the used wafer.
I still remember the first one I had to remove. It was only a few days after surgery, and the nurse came in to teach me about changing the appliance. After she left, I went to work, but every time I tugged at the wafer, it hurt like “h***”, just like pulling a giant Band-Aid off tender skin. It took a half-hour, “ouching” the whole time. I was extremely depressed when I finally got done.
“How am I ever going to live with this?” I thought.
Nowadays, removing the wafer takes about three seconds and is so routine there’s almost no sensation; in fact, my problem is keeping my mind on what I am doing.
One detail that makes a big difference was a tip from my nurse, “instead of grabbing the wafer and pulling on it, you hold one edge in one hand and push the skin away with the other hand.” Believe me, it works!
The reason I am writing this note is to reassure you if you are just starting out with an ostomy. Every appliance you change will get easier, and the pain of getting each appliance off your tender skin keeps getting less and less.
Stick with it—you will get past this too!
HERBS AND SURGERY
By: Bob White, Via: S. Brevard FL, Ostomy Newsletter
A report in a recent issue of the American Medical Association stresses the need for their patients to keep their physicians advised of the types and quantities of herbal supplements they are taking. Why? Herbal supplements can lead to medical complications and drug interactions, especially during surgery.
Eight supplements are mentioned specifically in the report— Echinacea, Ephedra, Garlic, Gingko, Ginseng, Kava, Valerian, and St. John’s
Wart. These can interfere with or increase the effects of other drugs, affect blood pressure or heart
rhythm, or cause increased bleeding.
The report recommends that patients discontinue any herbal remedies for from 24 hours to one week (depending on the specific herb) prior to undergoing surgery. It also recommends that doctors make a practice of asking their patients specifically about any herbs and prescribed medications they may be taking.
BOTTOMS UP! PERIANAL SKIN CARE
Via: The Cleveland Clinic’s Pouch-O-Gram & Greater Cincinnati Chapter
Often times, following the reconnection of bowel (ileostomy closure), patients can experience seepage of mucous and small amounts of liquid stool from the anus. This may occur more frequently at night depending on the individual. Moisture combined with friction from normal physical movement such as walking, bending or frequent wiping with toilet tissue can result in sore and weepy skin. The sensation is often described by patients as itching or burning. As you know, prevention is the key to maintaining good skin integrity.
Preventing skin problems—Care of perianal skin is instituted immediately following surgery to restore the normal process of stool evacuation. The following skin care regimen is recommended:
Rinse the perianal area with water to completely remove all stool and mucus. Avoid soap as this can be irritating due to its alkaline base. A squirt bottle (also known as an episiotomy bottle) or basting type syringe can be sued to rinse. Some people prefer a sitz bath for the soothing effect as well as rinsing.
Cleanse the skin gently with cotton balls, Tucks wipes or a baby wipe. Use a patting motion rather than wiping or scrubbing. Avoid washcloths, as these can be rough on the skin.
Allow area to dry completely by patting, fanning, or using a hair dryer on a cool setting.
Apply protective barrier cream or ointment to the entire area around the anal opening. Use a thick layer to ensure adequate protection. You can purchase many of these products over the counter. A few recommendations include Desitin, A&D Ointment, Vaseline,
Calmoseptine, Smith & Nephew Extra Protective Cream and Sween Baza-Pro Cream.
Position a dry, soft dressing between buttocks such as a strip of cotton roll, 4”x 3” dressing sponge or soft paper towel. Avoid synthetic fibers, as those do not absorb as well.
Cotton underwear is suggested to promote air circulation to skin. This prevents moisture build up, which can lead to a fungal rash.
Change dressing and repeat cleansing process after each bowel movement. Dietary considerations—Food items which produce gas, indigestion and loose movements should be avoided. Foods associated with irritation of the bowel, producing mucus or aggravating drainage, includes tomatoes, citrus fruits and juices, caffeinated beverages, alcoholic beverages, nuts, popcorn, milk, spices, chocolate and all types of peppers….people have varying degrees of sensitivity to these foods. Everyone is different, so limit only the foods with which you have problems.
Food which safely bulks the stool such as bread, potatoes, pasta, rice, bananas, cooked cereal and applesauce will slow the bowel peristalsis, producing a thicker consistency with fewer bowel motions. This allows more time for the bowel to absorb the fluids, cell salts (or electrolytes) and digestive enzymes.
Therefore, a stool that is less watery and caustic will be less irritating to the skin. Some patients may need to add fiber in the form of over-the-counter medication such as Metamucil, Citrucel, or Fibercon when dietary fiber alone is not enough. Check with your physician before using additional fiber.
OSTOMY SURGERY AND DEPRESSION
Via: Rosette Gazette, Owensboro, KY Ostomy Chapter
Sleepiness, loss of appetite, feelings of guilt or worthlessness, irritability, and a desire to be alone, as well as a loss of sexual desire, are some of the symptoms of depression. It can be triggered by the inability (at his time) to participate in normal daily pleasurable activities, or by a sense of helplessness and lack of control over your body.
Depression also can be caused by medications, stress, malnutrition, anesthesia, or metabolic imbalance. Some patients conceal their ostomy from their spouse, families, or lovers because they fear rejections, or feel embarrassment. This also can result in feelings of isolation, depression and chronic anxiety.
Patients who base their self-esteem on their physical appearance, their independence, their “always in control, take charge” character, or their Good Samaritan (always the helper or solver) behavior have a harder time dealing with cancer, their ostomy, their lack of control over their bodies, and their need to depend on others for help, even if only temporarily.
Constantly tired from efforts to cope with daily household or work routines, as well as a learning to adapt to the physical requirements of this unpredictable, new addition to your body, leaves little energy for enjoyment of leisure activities or romantic involvement.
It takes time to return to our normal lifestyle, so relax. Do what you are capable of doing at this time, and don’t try to rush things. You’ve had enough pain and misery and deserve the time. You don’t want to return to the hospital if you can help it, do you?
Give yourself a year for a good recovery and if it should happen to take a lot less time, consider yourself a very lucky person. In the meantime, do what you have to do in whatever way you are capable of doing it but don’t give more than a passing thought to the things you can’t do right now. You might have to take some short cuts, do some fancy improvising, or indulge in some healthy neglect. Don’t be bashful about asking for and accepting help. You’d do the same for them if they needed help, wouldn’t you? You are not alone—we all go through this.
WHAT ARE THE WITHDRAWAL SYMPTOMS OF DECREASING THE
USE OF THE STEROID PREDNISONE?
Via: Rosette Gazette, Owensboro, KY Ostomy Chapter
Prednisone is a synthetic hormone. It belongs to a class of drugs called corticosteroids. Prednisone reduces inflammation but also decreases your body’s ability to fight infections. It’s used to treat many conditions, such as severe allergies, asthma, lupus and arthritis.
When you take prednisone, your adrenal glands stop making cortisone like hormones (glucocorticoids). After you stop taking steroids, your adrenal glands need time to resume this function. The amount of time your adrenal glands need to fully recover depends on how long you took steroids and how much you took. Your doctor typically reduces your dosage of steroids gradually over several weeks or months.
One potential consequence of steroid withdrawal, is a flare-up of the problem you were treating with the steroids. For example, people with rheumatoid arthritis may have a recurrence of joint pain after they stop taking steroids. By slowly reducing the dose of prednisone, any worsening of the disease will be mild. Also, your doctor can adjust the rate of dose reduction. If the dose is reduced too fast, you may have
fatigue, body aches, lightheadedness and difficulty recovering from minor illnesses.
The greatest risk to your health during steroid withdrawal is the inability of your adrenal glands to respond to acute physical stress, such as serious injury, surgery or general anesthesia. Normally in these situations, your adrenal glands release large amounts of cortisol to help your body cope with the acute stress. If the adrenal glands are impaired, the lack of needed extra cortisol can cause shock and even death.
For this reason, be sure to tell medical personnel if you currently take or have taken within the last year, prednisone or cortisol-like steroids.
OSTOMY HINTS FROM HERE AND THERE
Have cold sores?? You might try applying aloe vera extract three times a day to speed the healing.
Before departing on a trip, check for the name and address of the local ostomy chapter and also ET nurse if possible.
An over-the-door hook, available in most hardware stores, is useful for colostomy irrigation’s when traveling.
“Baggies” are excellent for disposing of used pouches, and a small can of spray deodorant will help in dispelling odor after emptying the pouch in public washrooms.
Put the clip under your watchband when draining the pouch to keep it from being misplaced.
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