Summer Newsletter 2015

Charlotte County Ostomy Support Group

Website www.ccosg.org

A 501 (C) (3) nonprofit organization, (tax deductible donations)

Officers

                         President:  Jerry Downs……. 629-7568…………..email:fldowns@embarqmail.com

Vice Pres…Bonnie Coker       423-8542 Directors Jan Doner

Secretary:  Lovelle Meester….637-8167                Lorelie Godbout: 603-474-9063

Treasurer:  Karen Chalfant:…623-0088                 Joan Huber………………….575-8708

Committees

Newsletter:     Gloria Patmore & Karen Chalfant

Programs & Education: Jerry Downs, Penny Maki, RNET,CWS, 205-2620 Gloria Patmore, 627-9077

Nancy Frank RN,BSN,CWOCN, 629-5118,

Jill Lindsay, RN,BSN,CWOCN,629-1181

Visitation:       Penny Maki RNET, CWS & Nancy Frank BSN,CWOCN

Library:           Karen Chalfant

Products        Bonnie Coker

 

Professional Advisors:

John P. Rioux, MD, F.A.C.S.                       Gloria Anderson, RN.BS,CWOCN

Penny Maki, RN,ET.CWS.                           Jill Lindsay, RN,BSN,CWOCN

Nancy Frank, RN,BSN,CWOCN;

 

Next Meeting:

Tuesday September 8, 2015, 2:00PM

South Port Square Town Hall

23023 Westchester Blvd., Port Charlotte

Rap Session

July 2015 Summer Newsletter (Gloria Patmore, RNET Editor)

 

I hope you are having a wonderful summer, wherever you are. I know many are in your summer homes up north, and others are just traveling. There aren’t many in our group that are not yet retired, but you youngsters are even enjoying the summer change of pace.

 

The heat and humidity of the summer does present challenges. You need to keep hydrated as you perspire, and replace the lost electrolytes as needed.  All that perspiration presents a problem with the adhesion of your appliance. Using a skin sealant and protector such as skin prep often is the help needed. A pouch cover absorbs the perspiration under the pouch. There are several good articles in the June/Summer “Phoenix” magazine on a home made fluid replacement and dehydration.

 

Swimming is a sport that many of us enjoy all year long, and especially in the summer months. Yes! You can swim with your appliance. Protect the edges of the barrier with waterproof tape, or waterproof paper tape by applying a skin barrier to it. Swimming is a great exercise.

 

“Flying High Again” by Jerry Downs, our president, was included in the summer June Phoenix. For those of you that may have missed his wonderful story that started on page 60 and included a great picture of him and his plane, I decided to rewrite his story here. I’m sure we can persuade him to bring pictures to our September meeting.

 

“My wife and I were sitting in the waiting room after my first colonoscopy, waiting for my doctor. I had an extensive physical including blood work the week before and the doctor said, “We don’t get many patients like you. You are disgustingly healthy! Have you ever had a colonoscopy?” I was 57 years old, had just retired after 33 years as a stock broker and financial planner. Cancer did not “run” in our family and I had never had any symptoms.

 

My wife wisely suggested that I have one. What a new experience! Oh well. So we were waiting for the doctor. When he came out he gave us the bad news. “It doesn’t look good and we have sent a sample for a biopsy. Will let you know in a few days.”

Talk about a reality check! Other people get cancer. Not Me! I eat right, exercise, get rest, and am very active. Not me………yes, me! Adenocarcinoma (colorectal cancer). Well little did I know how much my life would change over the next four years.

 

After visiting a local surgeon who wanted to cut, cut, cut, we went to a top rated cancer center in Texas. We were not happy with the experience. After wandering around half dressed, one test a week, they told us, “Oh, we lost your records.” We went home.

We tried the natural route and started juicing 25 lbs. of organic carrots a week. My wife made carrot cake, carrot muffins, carrots in salads, she was amazingly inventive. Our neighbors got tired of seeing her coming. “What kind of carrots now?” they would ask.

 

My wife saw the ad on TV and said, “Let’s call the Cancer Treatment Center of America.” So we did. They are a tremendous organization! They treat the mind, body, and soul; but most of all they give you hope and treat you with compassion. That is another story, but after discussing the options we found that a chemo and radiation course was about 75% effective in stopping the cancer.

We gave it a try. Six weeks of chemo and radiation, five days a week. Thirty treatments in all. First check up, clean, no cancer.

Six month checkup the same. Alright!

 

At the nine month check up, not alright. It was  back! Now to the options. I had a few options, but surgery was the best for me- an abdominal perineal resection. For me that meant the last 14 inches of colon and everything south. Permanent colostomy. Sounds ominous. I asked God, “Why me?” and he said, “Why not you?”

 

It is what it is. Time to heal and get on with my life. Put my big boy pants on and deal with it.  After doing some research I found numerous notable people with ostomies. How about Bob Hope and the Queen Mother Elizabeth? Other notables include Fred Astaire, Al Geiberger the golfer, President Dwight Eisenhower, an the actress Angela Lansbury. It was good company to be in. They had good lives, so could I!

 

I have been a pilot since age 18. I worked my way through college giving flight instructions, towing gliders, and giving introductory rides in gliders. That all came to a grinding halt after surgery. The Federal Aviation Administration does not like cancer, and safety of flight is a serious issue. Once the doctors cleared me, I took my FAA flight physical and sent in all my information about the treatment. The FAA granted me a second class medical license to fly. I could instruct, but I couldn’t be a captain on the jets I had been flying for an air ambulance company. The FAA wants you cancer free for five years before they will consider re- issuing a first class medical. I still get to fly as a co-pilot and love it! Just in the past month I have been in the Dominican Republic, Quebec, Massachusetts, New Jersey, Illinois, and Ohio. It is still a thrill to be at 41,000 feet traveling at over 450 miles per hour and bringing a very sick patient back home.

 

Learning to live with a colostomy was new and different. I think the thing most unsettling was waking up at 3:00AM with a football on my abdomen and hoping in my sleepy state that I could make it to the bathroom without an “accident”. I wondered if I could do anything to mitigate or solve the “football” problem. I had heard about “irrigation” but a nurse (incorrectly” told me, “We don’t do that nowadays.”

 

Research, research, research. I found people in their nineties who had had colostomies for 40+ years who irrigated successfully. That sounded good to me. The internet can be a wealth of information, both good and bad. I found a you tube clip of an Australian demonstrating the process. He had been irrigating for over 15 years. Coloplast sold the pouch and cone and Hollister had the drain sleeves that fit my barrier.

 

Starting slowly and carefully and listening to my body, I began irrigating. Wow!! What freedom. I had been a three times a day guy, and had soon returned to that pattern after surgery. Gas was also a problem…after all I am a guy. My pouch filter would last about a day before it quit working. Then I would have to burp the pouch regularly or suffer a balloon on my abdomen. My pouching system would last 2-3 days.. Once I started irrigating I would have very little gas, no bowel movements between irrigations, and the system would last seven days!

“Football” problem solved. I realize irrigation is not for everybody, but for me it gave me back the freedom to “go” without fear. Now if I have a 10 or 12 hour trip I don’t have to sweat worrying about finding a bathroom. On a side note, the odor is almost non existent. I remember rushing to the bathroom one time, emptying the bag and cleaning up and just starting to walk out when a young boy was coming into the bathroom. He sniffed and his eyes got real big, and he said, “Oh wow. Something is dead” I just smiled and said,”Yep, pretty bad.” My wife came to my rescue with a spray called “Poo-pourri” Their motto is “A little spray before you go and no one will ever know.” It really works even if you don’t have an ostomy. It helps save little boys from tearing up and running from the bathroom.

 

Editor Note: As Jerry noted, “Irrigation is not for everyone.” All of you are individuals. Through the years as I worked as an ET Nurse there were patients that I would encourage and teach the use of irrigation with the physician’s approval, and there were others wasting their time with the procedure. If you cannot remain clean following a properly done irrigation you shouldn’t bother doing it. When receiving radiation and chemotherapy you seldom are successful staying continent. Your WOCN/ET nurses can teach you the procedure with your doctor’s approval.

 

“Living with an ostomy is a learning experience. I had been told that approximately 15% of ostomates will get hernias (some report 35-50%) “Not me I thought. I have a strong core.” My surgeon gave me the all clear two years and three months after surgery. I could do whatever I wanted to do. Hind sight is wonderful and he had forgotten who he was talking to and that I would take him literally.

I started running 4 miles a day, and doing Bowflex exercises. I also did kicking and punching as I am a black belt in Tae Quon Do. I was lifting and carrying as I had done before the surgery. Oooops. At my next check up it was found that I had not one, not two, but three abdominal hernias, one as large as the surgeon’s fist. I had a six hour surgery to repair it. Apparently the radiation and chemotherapy had weakened the abdominal wall, and my lifestyle did the rest.

 

No more running, kicking and weightlifting. We make adjustments and go on. It is what it is. I’m still waking up on the green side of the grass. I have a loving and supportive wife,. I still get to play with my granddaughters and I still get to fly. Life is precious, and it is good! Some people don’t realize you can be a pilot with an ostomy, but you can do almost anything you put your mind to do.

So I challenge all of you to try something new and different. Maybe something on your “bucket “ list or something you have always wanted to try, but the only thing holding you back is your fear. GO FOR IT!!!

 

We are fortunate that we have Jerry as our president. He brings so much to our meetings.

If you don’t have a subscription to the “Phoenix” I strongly suggest you get one. Every issue has so much wonderful information, and inspiration.

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