Saturday, February 27, 1999, 4:00 pm
Masonic Memorial Temple
420 Corydon Ave, Winnipeg, Manitoba.
$12.00 per person
AT THE JAN AND FEB MEETINGS
OR BY CALLING DAVE PAGE AT 775-2175
Since being diagnosed with cancer, I've not been able to determine why people seem to be so distracted by it. Have you ever noticed (those of you with cancer, or another terminal illness) the faraway look that seems to inhabit a person's eyes and face when you talk about your disease? In some ways, this look reminds me of a spouse who isn't really listening to you, or perhaps a deer caught in the headlights of a car about to hit it. In reality though, it is the kind of look that makes me want to grab the person and force them to look into my eyes. I hope that by looking into my eyes the person will see that we all have a terminal illness in one way or another, or at least they will, for life itself is a terminal illness. Perhaps that is why people get that distracted look; they don't want to see this fact.
People who are well, or at least without a life threatening disease, seem to be afraid of those of us who are on that final road. They don't want to talk about it, as if it is some dirty secret - and God forbid we actually look sick, then they become REALLY uncomfortable. Now I know not everyone is like this, but a good many people I know are. But you know, I as the sick person want to talk about this, all the aspects of my disease, including the fact that I just might die. I am not afraid of death or of being ill, but I am upset that so many others are afraid of me because of it. I often wonder how many others who are ill, are affected adversely by those who treat them as I have been treated. In the back of my mind, I think that perhaps this transformation from life to death would be so much easier on those of us with a life threatening disease if others were not so afraid to accept their own mortality. These things come to my mind when "well" people ask me how it is that I live with a terminal illness.
In reality, I am seldom bothered by my fate; to me it is just a fact of life. I have my good days and my bad days, which is no different than before I became ill. Granted it is not always easy to be so tired all the time, or to live with the different aches and pains that seem to be associated with my illness. I can't say I mind the weight loss though - to be able to eat anything one wants without gaining weight is probably every woman's dream! I am choosing to look at the positive aspects of living with a terminal illness. I am retired at 34. I have all the opportunity in the world to travel now, and my partner and I do so. I am practicing one of the things I really love, which I never had time to do before, and that is cooking. Most important though, is that I finally have the time to really think and to take stock of my life. Looking back, I was not the happiest person around. I am happier now than I have ever been, and cancer has played a big part in that. It makes no sense to me to be continually bothered by a certain kind of fate, when there is nothing I can do to change it.
Still, when it comes to life and death, there are others that need to be considered. It does bother me when people who don't really know me are upset or distracted by my illness. I try not to let it take up too much of my time though, because what really makes me sad is how my health affects those who are close to me. My partner and I often talk about the fact that it is impossible for each of us to know exactly how the other is affected. I can explain things from my point of view, and she can explain things from her view point, but our realities are different now. We cannot fully understand each others' perspective, because we are at opposite ends of our lives' flight plan. As with all flights, some are shorter than others, but in the reality of life, the destination is always going to be the same. I try to consider everybody, but admit I am intolerant of well meaning people who do more harm than good by their comments. There are many people in my life who are close to me, who accept me with an illness, but the most important person I have to consider, is my partner - she is my top priority.
I guess you could say that the word "time", and the reality of time, has become a major issue for me. At 30 (as I was at the time of my diagnosis) I didn't think about time, or the importance of how having only a little time left would affect me. I took it for granted that I would be here well into my eighties or nineties, which seems the norm for both sides of my family. Never being ill before gave me the luxury of believing I was invincible. There was always time to do the things I knew I wanted to do. I wanted to develop my artistic talents, maybe write a novel, certainly do more writing for magazines, or take time out to have a family. Now I worry about a child that may be in my life soon, growing up not knowing me very well - if he/she remembers me at all. Now I am concerned about my partner being alone to complete this joy, which we wanted to do together. I found it so easy to take things for granted, and now that time is slipping away, I regret not doing these things sooner. Perhaps, though, I would have continued to procrastinate, because work and making money was a big priority in my life. I never thought it was, until I had a chance to look over my life. I may not have the time left to do all the things I wanted to do, but I do have the time left to make sure I never again lose sight of all that is truly important to me.
Some people ask me how I can have such a good attitude towards this illness. I accept that fact that I may die, but I've not given up on the idea that I may live. I am not stronger than cancer, but I do believe attitude plays a big part in the final outcome. As I have stated before, it makes no sense to me to be worried about what may or may not happen in a few months or a couple of years from now, because it just hasn't happened yet. I adjust my life to the way that I feel, as I am sure all people do. I just find different things to do that are compatible to my energy level. To me, my attitude is not necessarily a good attitude - it is just an attitude.
This is not to say my entire life has turned around completely because of cancer. I still get upset over drivers who cut me off. (Oh yeah, like I'm some fantastic driver!) I complain all the time about the cost of groceries and the cost of just about everything else. I still hate politics and avoid religion like the plague, although my spirituality is still very much intact. I may appreciate the flowers more, but I still hate the fact that our winters are too long and our summers too short. The failure of our legal system to do anything about the increase in crime still irritates me to no end. Nope, not a complete change in me at all.
I can say, though, that having cancer has made me think more about the good things in the world. I thank God everyday for my partner, whom I would not have met if it had not been for this disease. I have always loved my six year old dog, but now I show him this love more by petting and paying more attention to him. Now I "really" look at people, rather than looking through them. I am more sympathetic and empathetic, and I am more willing to forgive, but maybe more importantly, I am more willing to say I am sorry. As time goes on, I realize that most people really do try to do the best they can to make this world a better place, and I am more willing to acknowledge it.
Cancer or any other terminal disease is not a solitary event. It affects people, from family, friends, and acquaintances to our physicians and health care system. It is the people who are around us who make the difference between accepting our fate or making things more difficult. So I ask you who are uncomfortable, or distracted by my illness, to look into my eyes. You will see that I am not afraid. You will see that I have my good days and my bad days. Sometimes you will see that I am not always going to be patient with you, but I am not with a lot of other things either. If you look deep enough, you will see that even though I am worried about those important to me, I really am a happy person, maybe because of a deadly disease. You will also see that even though I am young, I have been living a lifetime these past couple of years, and will continue to do so. Try not to be too afraid of death, for if you really look at life, you will realize that life, no matter how fulfilling, will eventually be, a terminal illness.
The article by Carol Aitken in the last issue of Inside Out has prompted me to add my experience to your newsletter.
In 1977 I was diagnosed with bladder cysts and was admitted to the St. Boniface Hospital and had the cysts removed T.U.R. From then on I saw the doctor every three months for examinations (not a very pleasant experience). Of a thirteen year period I had the cysts removed T.U.R. two or three times a year.
In January 1990 my left kidney had to be removed. In September of that year I had to have my bladder removed. During the thirteen year period the doctor tried three different types of chemo treatment which didn't cure it, but did slow the growths down. The bladder removal operation took 11 1/2 hours and twelve units of blood, but it was a great relief to have comfort again, for I was getting up to the bathroom up to thirty times a night before surgery.
I retired in 1988 and my wife and I have done a lot of travelling both by car and airplane, and have spent a number of winters in Phoenix, Arizona. As to date, I have never had an accident with my appliance.
Over the last year I have had many kidney infections that had to be treated almost continuously with antibiotics. The doctor tried during last summer to dilate the stoma every two months because of scar tissue which was causing my kidney infections. In November I spent two days in St. Boniface Hospital for revision of the stoma and now I am recovering from the procedure and feeling quite well.
I am very grateful for the good care I have received from both the doctors and nurses and one can only guess where I would be financially without the good medical coverage we have here in Canada. In spite of the inconveniences in dealing with the appliances, one can lead a normal life and if anyone that is reading this is going through the same experience, I hope that my account of my experience will be an encouragement to you.
Sincerely yours, Sanford S.
Portage la Prairie, Manitoba
Ok, ok, perhaps ostomates can find a life partner out there. But what about sex? This is actually one of the top questions people ask me when they find out I have an ostomy. "Can you still have sex?" Of course I can.
Reasons why my sex life has improved since installation of my permanent ileostomy: 1. I am no longer in pain. Once I got healthy, I no longer have those times when I just don't feel up to making love. 2. When I had ulcerative colitis and when I had a straight ileoanal anastomosis I often had perianal pain that made sex uncomfortable at the least and painful at times. 3. I no longer waste time worrying about having an accident during sex. 4. I no longer have to excuse myself to go to the bathroom "just one more time."
There can be some challenges. It's always wise to empty your pouch before sex. While my dangling bag isn't a problem for me, some folks find wearing cummerbunds or crotchless panties helpful. Some who wear 2 piece pouches switch to a smaller pouch during intimate moments. I do have a lovely lace pouch cover I wear for some special occasions. Though I don't feel the need to wear it every time I make love.
A very small percentage of men have sexual dysfunction problems after j-pouch, ileostomy or colostomy surgery. The type of problems range from total impotence to those who continue to have erections, but do not ejaculate. The odds for trouble are dramatically reduced if you have an experienced surgeon. These problems don't come from the ostomy, but rather from sloppy snipping around the rectum.
Those who have their rectums and anuses removed can no longer receive anal sex (not that I've found too many UC/CD folks who do anyway.)
I think the biggest impact an ostomy has on one's sex life is in the area of self-image, not in terms of physical functioning. I've had my ostomy for almost 2 years now and I still have days (though they are few and far between now) where I look in the mirror and cry, where I feel ugly and damaged and very unsexy. Then my husband will walk up behind me and kiss the back of my neck and tell me and show me how he feels about me. I know that I'm so lucky to have him. He has helped me deal with the self-image issue and picks my spirits up on those days when I feel so low. As I said before, over time I have fewer and fewer problems with the impact of my ostomy on my self-image. I am able to feel sexy and act on those feelings without the pain and worry I often had when I was sick.
Oh! I suspect you are wondering what my Sunday activities have to do with Ostomy Myth Five. Well - before my ostomy I wouldn't have dared to go to such an event. I avoided any activity where bathroom availability was unknown - or known to be a problem. I just couldn't risk it. I'll never forget the time I went to the Wisconsin State Fair when I was in college. I went with my aunt and spent much of the day worrying - waiting for - expecting trouble. Trouble hit in the dairy building. I rushed into the women's room only to be confronted by the long, long, long line to the bathroom. Frankly, I didn't make it. By the time I got into the stall I had a mess. So there I sat crying, trying to clean myself, my bowels still pouring out. Then the pounding on the door started. "Hurry up. Don't you know there's a line out here." There I sat, my eyes filled with tears, desperately trying to deal with a horrid situation and this woman was pounding on the door, yelling at me. Only one thought pounded in my head - "I wish I were dead, I wish I were dead, I wish I were dead."
Well, I don't have experiences like that anymore. I used to think that an ostomy would limit my life - I've already shared my misconceptions about love and sex. Well the opposite is true. I spent so many years tied to the bathroom. In the last 21 months I've got to live life to the fullest for the first time. I can do ANYTHING I want to now.
There are many things ostomates enjoy doing - swimming, sitting in a hot tub, sports. There have been professional football and golf players among our ranks. Let's not forget the actress and political leaders among us. One of the active members of alt.support.ostomy participates in martial arts and another is an adventure athlete. Believe it or not - there is even a stripper in Florida with an ostomy.
Those of us who spent years ill find living with an ostomy to be a joy compared to what we endured as a result of our disease. Limits? HA! My ostomy opened that bathroom door and set me free to do anything I wanted to do.
"What does this have to do with ostomy life?" you ask. My life is busy and hectic. I'm involved in a lot of things that take up time. Dealing with my ostomy isn't one of them. I empty my appliance 5-7 times a day - usually when I urinate. I tend to empty more often than necessary. According to my ET nurse as time goes by I'll be less self conscious and empty less often. I spend far less time in the bathroom than I did when I had ulcerative colitis or when I had a straight ileoanal anastimosis. I change my appliance every 4-5 days. It takes me about 10 minutes. Because of my allergy situation I have to change my appliance more often than most. It also takes me a bit longer because of the system I use. Most folks use a much simpler appliance system than I do. The two times I tried to switch to a different appliance were the only two times I've ever had a leak - so I've decided to stick with what works for me.
The experiences of other ostomates will be a bit different. Many colostomates choose to take time to irrigate so they don't have to wear an appliance. Although most ostomates have a longer wear time than I do, some have to change their appliances more often. When I hear horror stories of ostomates who have to change their systems hourly or daily - the first thing I ask is "When did you last see an ET nurse for a proper fitting?" Their answer is always the same - "never" or "years ago." An experienced ET nurse can help an ostomate find a properly fitting appliance. My wear time is considered short at 4 - 5 days. If you are getting less than 3 days then see an ET nurse ASAP. Odds are you are not using a properly fitting appliance.
Managing an ostomy - emptying it and changing it - does not cut into my time. Actually since I spend so much less time in the bathroom and doubled over in pain - my ostomy has expanded my available free time.
Normally, you should empty your appliance when it becomes 1/3 to 1/2 full, and before trapped gas makes it feel firm. As the pouch becomes more full, it places a greater strain on the snap fastener holding the pouch on the flange, for two-piece appliance wearers, and increases the tendency for the adhesives part of the appliance to pull away from the skin around the stoma with ALL appliances. If it is not convenient to empty a filling appliance, perhaps you can get somewhere you can discreetly "pop" the seal, and at least release the gas pressure. This trick can buy you a little more time before emptying is necessary.
Also, for ileostomates, if you know that you are going to be travelling or in a situation where easy access to a rest-room is not available, adjust what you eat to avoid high- residue food. Instead of eating two bran muffins and a bowl of Raisin Bran for breakfast, consider pancakes, which have much less residue. Be aware of how fast your body responds to eating. If you know that you can expect lots of stoma activity about two hours after eating, time your meal so that you won't have to deal with a pouch approaching capacity at an inopportune time.
Similarly, urostomates may want to consider temporarily adjusting their rate of fluid intake for a short time. The caution here is that urostomates should consume plenty of fluids during the day. This technique is not advisable for periods of more than a couple of hours. Urostomates should also empty the pouch before it passes the half-full level. If the bag becomes full, there is a chance of urine back-up, thus risking infection within the kidneys. Urostomates who do not use a night drain are running a big risk of puddling and backing up into the kidneys, which can cause not only irritation, but also serious infection.
Ostomates shouldn't skip meals before going out socially. In general, the less an ostomate eats, the more gas he or she will produce, with its attendant problems. Actually, a quick elbow to the stoma will usually silence it if it becomes operatic at the wrong time.
Patients with the following ostomies were visited in November and December 1998:
Colostomy - 10
Ileal Conduit - 2
Ileostomy - 5
Pelvic Pouch - 1
Urostomy - 0
Total = 18