Since the last newsletter these are the events which have occurred:
I would like to thank the many people who helped our cause. To all of you who wrote the Minister or your MLA, or came to the Nov. 18th meeting, a big thank you! The Brandon/Westman Ostomy Association lobbied alongside us and generated their own meeting with Jim McCrae as well as a great letter writing campaign. Their President, Ray Kennedy, along with members Maxine and Don Rose drove in for the Nov. 18th meeting and asked very pertinent questions, particularly regarding the impact on rural Manitobans. The E.T. Nurses were very helpful in defining what their role is within the program. The Home Care depot gave us valuable insight into the complexities of the distribution of supplies. Dave Chomiak, the N.D.P. Health Critic, gave us valuable advice and wrote the Minister expressing his concern. The United Ostomy Association of Canada assisted us in two ways. President Bette Yetman, wrote to the Minister (her letter can be seen by clicking here). Bette with Muffy Truscot of Regina, Mike Lane from Brantford and Claude Hachez of Montreal gave much advice and supplied ostomy equipment prices from other parts of Canada. All over the Internet! Margaret Hurl told me of the early history of the Manitoba Ostomy Program as a founding WOA member. Lastly, I would like to thank Mr. McCrae for taking the time to listen to and consider our concerns. With everything that he has on his plate at the moment, we appreciate his efforts on our behalf. If I have missed anyone, sorry and thank you all the same. I feel that we really pulled together as a community and we should be proud of ourselves.
This has been a good experience in many ways. The enhanced contact and co-operation between the Winnipeg and Brandon Ostomy Associations has been a positive outcome. The close relationship of the Ostomy Associations with the E.T. Nurses and the Home Care Depot staff both bode well for the future. I think it has really made the Manitoba Ostomy Program a clearly understood entity, especially to many people within the Department of Health. We have all reinforced and emphasized the MOP and given new depth and energy to the co-operation necessary to run the program at its best.
The UOA is a mixture of people. Some have new ostomies and some have years of experience. But hopefully many will benefit from this review of food after ostomy surgery. I present this from a nurse's point of view so remember, I am not a dietitian!
The function of the small intestine is to absorb calories, vitamins, etc. The function of the large intestine is to act as a storage space and to absorb water. Therefore, even with all of the large intestine removed, people can lead a healthy life.
Your ostomy will not change anything concerning your diabetic or high blood pressure diets. You still need to follow them. If you eat a reasonable diet, including food from the four basic food groups, you should not need supplemental vitamins.
Right after surgery, you may have been told to avoid certain foods. But after healing is complete, you may not have to avoid them. Some examples are popcorn, nuts, Chinese vegetables, celery, corn, coconut, and fruit skins. These foods are high in fiber and may cause a blockage right after surgery. But once you are recovered and are trying these foods for the first time, remember to eat small amounts of the new food, chew well, drink plenty of fluids and try one questionable food at a time.
Just because you have an ostomy does not mean you can't gain weight. Unless medically indicated, be careful not to gain too much weight. This may cause problems with skin folds or change the shape of the stoma, therefore causing a problem with the seal of the pouch. If the stoma becomes larger or smaller because of the weight loss or gain, the pouch must be refitted to protect the stoma and surrounding skin.
If you are troubled by gas, think about the foods you eat. Beans, cabbage, cucumbers, milk, chewing gum, using a straw, carbonated drinks and beer are all common offenders. But all of these do not cause gas in all people. If you know which foods are a problem for you, it's not that they are forbidden. You just know that when you eat them, you must be prepared for the consequences! Skipping meals can also cause gas.
About fluids: if you have an ileostomy, you lose more water because your colon has been removed. Therefore, you must replace water, salt and potassium. Dehydration is common after exercise on hot days. Salt isn't too much of a problem because of our diets. Get potassium from oranges, tomatoes and bananas. Colostomates should not have too much of a dehydration problem but should drink at least 6 - 8 glasses of water a day. Urostomates should also drink plenty of fluids for healthy, functioning kidneys.
The bottom line is this: food and meals are an important part of our society so don't avoid them because you have an ostomy. Understand what foods do in your body and enjoy!!
Ostomates with more than one stoma, or fistula, or other opening, that drains onto the skin need special techniques to protect the skin. If stomas or openings are fairly close, cut and trim barrier wafers so that they do not overlap. the pouches might overlap but in making a good seal and to prevent leakage, you don't want the wafer barriers to overlap.
If the pouch has a wafer barrier large enough to accommodate two closely-spaced stomas (such as a double-barreled stoma), put the wafer barrier to include them both and cover the space between them with paste (assuming they both emit the same type of discharge - don't mix urinary and intestinal discharges).
Some barrier material comes in large sizes up to 10"x 10" that can be cut to fit unusual sizes or placements of stomas, or for a long-lasting source of strips for filling deep groves in the abdomen. The new Conseal plugs, or a stoma cap, might also be used if one of the stomas is an inactive one, or an irrigated, controlled colostomy. Whether one of these could be used for a fistula is questionable better get advice from your enterostomal therapy nurse or doctor.
Small grooves can be filled with layers of paste until flush with the surrounding area, using a hair dryer between layers to speed things along. Fill larger, deep grooves with strips of barrier wafers, cut and layered in graduated sizes, according to the size of the groove. Apply with the most narrow strip at the bottom of the groove, to the widest, as flush with the body as possible. Coat each layer with skin bond cement, until the final appliance is pressed on.
Antibiotics - These often cause diarrhea, even in patients without an ostomy. Ostomates are not exceptions, and if the problem becomes severe, notify your physician immediately. In the meantime, keep Gatorade or a like drink on hand to maintain adequate electrolyte balance.
Pain Medications - These are often constipating. Extra irrigations or laxatives or stool softeners might be required for colostomates to combat the side effects of the medicine. Perhaps the dosage of the pain reliever can be reduced to eliminate the situation. If not, consider one of the above alternatives.
Chemotherapy - Many cancer patients have follow-up chemotherapy after surgery or as an alternative to surgery. This often produces nausea and/or vomiting. Gatorade is again good to keep on hand for electrolyte balance. Radiation Therapy - This often produces the same effects as chemotherapy and should be treated accordingly.
Travel - Travel can cause constipation in some patients and diarrhea in others. Be aware that these are the possibilities. Altered diet when travelling accounts for some of this, plus the excitement of new surroundings. Allow sufficient time for irrigations and take along an anti-diarrhea medication. Check with your doctor if you are not familiar with what works best for you to control your diarrhea.
Antacids - Those with magnesium can cause diarrhea. Perhaps you will want to ask your doctor to suggest some with aluminium rather than magnesium.
Drink plenty of liquids - Tea is always a good source of potassium (so are orange juice and banana). Coca Cola also contains some potassium. Bouillon cubes are a good source of sodium. Gatorade is used by athletes for electrolyte replacement. It is better served over ice. Remember that some of the signs of electrolyte imbalance are irritability, nausea and drowsiness. Be prepared and prevent this problem when possible, keep well hydrated with adequate fluids of all types - water included.
We are morbidly fascinated with illness, with the way our bodies can betray us.
Witness the way federalists and sovereigntists alike rallied around Lucien Bouchard during his recent battle for life, hoping for his recovery. Shocked Canadians sat glued to the news in a sort of vigil, waiting for the latest reports on his health.
Doctors appeared on television, explaining the mysterious flesh-eating bacteria that had so suddenly threatened the life of the Leader of the Opposition. How does it happen? Where does it come from? Could I get it?
Our vulnerability both fascinates and terrifies us. AIDS, hepatitis, cancer, and killer bacteria lurking in the headlines, and perhaps our bodies. No money, no power and no political stripe will guarantee immunity.
In Division of Surgery, Montreal writer Donna McFarlane takes an unflinching look at her own chronic sickness - Inflammatory bowel disease - and its long-term, devastating effects on the quality of life.
But this is not an inspirational, tell-all sort of book. Shortlisted for the Governor General's Award for fiction last fall, Division of Surgery is a novel. It's based on McFarlane's own struggle, but it's told from the narrative standpoint of Robin Carr, a young Toronto woman.
Even through this is Robin's story, it is impossible to separate the fictional character from the author. What is so compelling about Robin's story is that it so closely parallels the life of the author. McFarlane herself has undergone 12 surgeries and her own series of personal burdens. Knowing this, there is a fierce realness to this kind of fiction.
The squeamish may prefer to pass this book. Division of Surgery is free of wordy descriptions and poetic prose, making it easy to read, but it's not light reading by any means. At times, it's almost painful to read - the healthy can only imagine the actual pain of illness.
After one failed surgery, Robin is in such agony she seems to have no awareness of herself as a person, only as a vessel of anguish and pain. "I thought of pain as a force all its own," Robin muses from her hospital bed. "It lived and fed in hospitals, but it could follow you home, extorting submission like dues before you moved on. It couldn't be conquered, only appeased."
And through it all there is emotional distress, too, as Robin adjusts to an ileostomy, a failed marriage and an uncaring boyfriend. She survives a seemingly endless series of surgeries, and manages to retain a wry sense of humor and a tentative optimism.
Division of Surgery is not a pleasant story, but it's terribly enlightening for those of us who are fortunate enough to be well. McFarlane's book is a testimony to the fact that while disease and sickness can be fascinating, so too is the will to overcome.
The Winnipeg Ostomy Association lost a long-standing and active member when she passed away on Saturday, November 25, 1996.
Patients with the following ostomies were visited in November and December:
Colostomy - 14
Ileal Conduit - 1
Ileostomy - 7
Koch Pouch - 1
Total = 23