My husband, Bill, and I live in Gimli - 100 kilometres north of Winnipeg, and I have been attending chapter meetings with him since he became a member of the Winnipeg Ostomy Association in the autumn of 1996. In April of 1997, we attended the Regional Conference of UOA in Minneapolis, and then attended the World Conference in Calgary in June of that same year. We attended the Inaugural Conference of UOA Canada Inc. in Mississauga in August of this year at which time my husband was elected to the Board of Directors of UOA Canada Inc. While attending the conferences, I take in as many workshops as possible. They are well organized, are always led by qualified people, and are very educational and informative. I have learned so much about skin care, complications and appliances - all stuff that is really important to know when living with an Ostomate.
Do we need to know all this? Do spouses have needs? You bet they do!! Not as many as the patient, to be sure, but a change of lifestyle in one partner automatically means a change of lifestyle for the other, and it is important to recognize that. One of the workshops in Mississauga was on this very topic, and was only for spouses and/or significant others of ostomates. Let me tell you our story, and then tell me that I didn't require some TLC and support during our year from Hell!"
My husband was diagnosed with bladder cancer in June of 1994, just days before we were to leave on a trip to the Maritimes. The trip to the doctor was routine so you can imagine the shock we both felt upon hearing this diagnosis! AND that was only the start! The date for biopsy was set, we travelled into the Health Science Centre in Winnipeg, where we waited, and waited, and waited some more, only to be finally told that an emergency had come up, and the biopsy was placed on hold. So we went home and waited some more. Eventually the biopsy did get done, but Bill developed a blood clot from this simple procedure, (which of course put the surgery on hold) and he was placed on Coumadin, another name for warfarin, which is a blood thinner. Chemotherapy followed, with treatments being given as an in-patient the first 3 days of the month, and every Monday as an outpatient for the rest of the month. (And as most of you know if you had chemo at the Cancer Clinic, that waiting for blood work, waiting for a chair, waiting for your treatment to come up from Pharmacy all made you realize why you are called patients - because you learn quickly that waiting is the name of the game, that being impatient gets you nowhere, and that waiting patiently is all you can do.) All was fine for the first couple of months but while in hospital during the third month of treatment a blood vessel in his rectum ruptured, and, because of being on blood thinners, he required many blood transfusions before the bleeding abated, which was a good thing, because they had him prepped and ready for bowel surgery if it hadn't stopped. Needless to say, this episode left him in a weakened condition, and unable to take his treatment for that month! Back home we went, blood clot still in place, but no longer on Coumadin, which was a double-edged sword, and waited some more! By November, it was evident that the clot had disappeared, and the chemo treatments were finished. The time had arrived for the removal of both bladder and prostate. The date was set for 7 a.m. November 17, and after a 13 hour surgery (which was the worst waiting period ever) the deed was done, and my husband had a brand new urostomy with an ileal conduit. And best news of all... he had not developed any new blood clots!
He saw the E.T. several times in the hospital learning how to care for his new stoma. I saw her once - the night before the surgery when she came in to mark the site. Bill also received a visit from the WOA, so he was fully aware of how to care for his stoma. I still knew next to nothing - except that I was glad that the cancer was removed, and that our intimate moments as man and wife, as we knew them, were over. All in all, he was hospitalized seven different times in five months, and I was on the verge of needing tranquillizers! (Thank God my mother lived in Winnipeg. She gave me a bed which I was glad to fall into after spending 8 - 10 hours a day at the hospital, saving me not only mega bucks but also a long drive home!) By this time I was almost a basket case and couldn't have faced the daily drive, and I wanted, and needed, to be at the hospital to support Bill! Our sons were supportive, but were as apprehensive and ill-informed as I, so although the emotional support was there the knowledge wasn't.)
Two weeks later he was home and we discovered all the joys of the night drainage system, and the inconveniences of being tethered to the bed by a 5-ft. drainage tube! (We soon learned to place the jug" in an ice cream pail, or a waste paper basket, in case of a breakdown in the system!) We also discovered soaker pads for the bed in the event of a leak during the night, which was a great relief for Bill. This meant that he didn't hesitate about sleeping in a hotel, which allowed us to travel again. We have travelled many miles since then. Our relationship is as good as it ever was, proving that quality living is possible with a stoma.
It was felt by those attending the workshop in Mississauga that more education and training should be made available for ward nurses, as there appears to be a lack of knowledge on the wards on days when the resident E.T. is absent. It was also felt by those present that it was very important for spouses/significant others to receive support and information about the changes taking place in the couple's life, and that the visitation program should be changed to reflect this. In the event of injury or illness, the spouse may be in the position of having to care for the needs of the ostomate - including changing the appliance! Are you ready, or prepared, for such an event? Or do you feel like the rest of us at the Workshop that there is a need for spousal training, and maybe even the inclusion of spouses in the Visitor Program which would allay some of the fears that arise when faced with the unknown?
In the May/June 1998 issue of Inside Out Christel Spletzer, then the visiting co-ordinator,
wrote of some changes to the visiting guidelines with the establishment of the U.O.A.
Canada. These guidelines are to assist a chapter to maintain a high level of excellence in
the visiting program. Your executive has recently become very concerned as we have
found that many basic guidelines are not being met. To give a few examples:
1. In a recent 12-month period, 75% of the people on our visitors' list had not
attended a meeting. As Christel pointed out, visitors are expected to attend a
minimum of three (3) chapter meetings a year, and to offer to accompany the
patient to his or her first chapter meeting.
2. Over 57% of the people on our visitors' list have not been re-certified since 1996 or earlier.
I quote from the U.O.A. Canada Visiting Guidelines, Section IV, page 22:
Re-certification of each visitor is necessary to maintain a visiting program of high quality. It is recommended that each certified visitor be re-certified by attending a training session at a maximum of three (3) years. Selection for re-certification assumes the visitor:
1. Has made successful visits
2. Is in good health, physically and mentally
3. Is willing to participate in the re-certification process
4. Adheres to hospital policy
5. Has maintained chapter membership and has attended at least three (3) chapter meetings during the last year
In 1999 Winnipeg Ostomy Association will be offering two separate visitor training re- certification sessions, one in the spring and one in the fall. Hopefully all of the people on our current visitors' list will be able to take part in one of the sessions. (A new visitor certification session will also be held in 1999.) All of you who are presently visitors will be contacted and asked to participate.
The visiting program is the centerpiece of the chapter's activities. It is up to us to maintain this program at the highest quality possible.
I announced at the October meeting that Dr. Ernest Ramsey, Urologist, H.S.C., would be our guest speaker in November, unfortunatily he will not be able to be with us, but will be rescheduled for early 1999.
See you at the meeting November 18th.
I had many misconceptions about living with an ostomy and I frequently encounter others with those same misconceptions. After one person too many told me that it would be better to be dead than to live like me, I decided to start a series of short articles for the internet newsgroups alt.support.ostomy and alt.support.crohns-colitis covering the facts and fiction of ostomy life.
Some ostomates worry about the smell when they empty. Our stool isn't any more toxic than other people's - we just empty up front - where are noses are. A touch of the flush handle and away goes the smell.
The roots of this smelly myth probably stem from old time appliances. Early ostomy supplies were made from non-odor proof materials. Many ostomates had trouble controlling the odor from these old time appliances. Thank goodness for modern technology!
What about spandex, skin tight leather, and bikinis? None of these items were in my wardrobe to begin with. But I do know a young woman from alt.support.ostomy who still wears a bikini - she just found a new style.
I'm sure every ostomate has stories to tell about folks who stared and stared and still couldn't see our pouches through our clothing! So - if you find yourself facing ostomy surgery, don't waste time worrying about wearing muumuus or overcoats. At the most you may have to buy a new swimsuit or some new undies. Though feel free to be like me and use it as an excuse to buy more clothes!
You'd think I'd still harbor this myth considering my first fianci took a walk when I had my temporary ileostomy while my ileoanal anastimosis was healing. But it was pretty clear that we didn't split over how I went to the bathroom. We split because we weren't right for each other. I've since found my soul mate and life partner and he couldn't care less how I go to the bathroom. What he cares about is that I'm healthy! You see he loves me, not my body or my bowel.
BUT, BUT, BUT don't single ostomates have a hard time with dating? Some do and some don't. However, what I've found is that those who don't date are too afraid to get out there and try. And yes, I wouldn't be surprised if an ostomy limited someone's casual exploits. But - if you are interested in finding a life partner who loves you, not your shell - then an ostomy won't stop you. If anything, it's a good test of really what a potential mate is interested in. I never think to myself, "Will you still need me when I'm 64?" I know my husband is with me for the long haul.
1. No road construction
2. No tornadoes
3. No TV reruns
4. No Twins losses
5. No boating accidents
6. No mosquitoes
7. No sunstroke
8. No need to drive AROUND the lakes.
9. No hay fever
10. No lawn mowing
11. No bee stings
12. No lousy golf scores
13. No grass fires
14. No overheated engines
15. No spring cleaning
16. No tick bites
17. No dirty barbecue grills
18. No weeding
19. No rained-out picnics
20. No Jet Skis
21. No noisy robins
22. No leaf raking
23. No lightening strikes
24. No ants
25. No sweat
Inside the bowel are millions of cells that divide and make copies of themselves. FAP is a rare disease in which there is abnormal cell growth and division in the gastrointestinal tract resulting in overgrowth of cells that develop into mushroom-shaped growths. These growths are called Adenomas, (commonly called polyps). There are several types of polyps. Adenomas are pre-cancerous polyps.
When FAP is present, anywhere from twenty to several hundreds of these adenomas occur in the gastrointestinal tract, usually in the colon and rectum. Adenomas can occur in persons not affected with FAP, but in these cases there are only one or two adenomas. This can be caused by a high-fat diet, might be a function of the individuals' age (40+) or may just be a random occurrence.
FAP is passed on genetically. However, it is not present at birth and appears to be triggered at puberty. For this reason, individuals who have the gene for FAP need to have bowel examinations (flexible sigmoidoscopy) beginning at age 10 and continuing every two years until age 40 and then every 3 - 5 years until age 60. When a teenager is diagnosed with FAP, there may only be a few adenomas but the numbers increase with time. Most adenomas found in a teenager are about 1 - 2 mm in size. It takes 5 - 10 years for an adenoma to change to a cancerous growth and by this time the size of the growth is usually 0.5 cm or larger.
To date, the only acceptable treatment for FAP is surgical removal of the large bowel because of the large number of adenomas and the certainty of developing bowel cancer. Unlike people with ulcerative colitis, the usual bowel symptoms are absent and so the decision to have an operation is different. With FAP, doctors try to prevent the development of cancer through early diagnosis and treatment. The majority of individuals with FAP who require surgical intervention will undergo the Pelvic Pouch Procedure. Since FAP is a chronic disease, regular check-ups are needed and can be planned together with the doctor. Patients with FAP learn to live with their disease by finding out how to stay a step ahead of the disease.
They learn that FAP may affect 1 in 10,000 people and that because it is so rare, they can get information from a national family study centre for patients and their families. They learn that when they have children, each child with have a 50% chance of inheriting the disease gene. They learn that this does not mean they will inherit cancer! The gene for FAP was discovered in 1991 and a genetic test is now offered to families with a history of FAP so that they may learn who has the disease gene and can begin intervention early. Finally, patients and families affected with FAP learn that keeping up with current research and treatment may help them make better decisions about their health care.
Weak tea and plain broth are beneficial and solid food should be eliminated. You should call your doctor if you suffer excess fluid loss for longer than a day. Gatorade is an excellent drink for replacement of sodium and potassium, and is used by many athletic coaches.
Do not try to change your appliance at this time if it can be avoided. The flu usually lasts about 24-28 hours. "Lomotil", a prescription drug, will Slowdown the bowel. Get plenty of rest. Thanks to Memphis Area Ostomy Group and Dr. Alvin J. Cummins, Gastroenterologist, for this home-made Gatorade-type drink. It is pleasant tasting, and supplies bicarbonate, glucose, potassium, sodium, and replacement fluid:
All ostomates should be extremely careful not to gain excessive weight. As most of you are aware, added weight may cause an appliance which fit perfectly to become uncomfortable and ill-fitting.
Skimming the fat: Fat Is the nutritional enemy of the 90's and a prime contributor to
obesity, heart attack, stroke, bowel and breast cancers and diabetes. To skim the fat from
your diet, here are some lifestyle changes you can make:
Patients with the following ostomies were visited between May 1, 1998 and September 30, 1998:
Colostomy - 27
Ileal Conduit - 3
Ileostomy - 11
Pelvic Pouch - 1
Urostomy - 0
Total = 42