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PERSONAL STORIES OF MEMBERS OF THE
GREEN BAY AREA OSTOMY SUPPORT GROUP


Chris Demeuse

CHRIS DEMEUSE
Ileostomy at age 38,
due to ulcerative colitis

WATER AEROBICS INSTRUCTOR

I developed ulcerative colitis about the age of 29, but it took several years to receive an accurate diagnosis. For over 8 years, I suffered tremendously with diarrhea, cramps, dehydration and fatigue. For the majority of those 8 years, I was on various dosages of prednisone, which caused a 40-pound weight gain, insomnia, mood swings and a multitude of other awful side effects. I also was put on many other medications...none of which worked for me. My body was exhausted and my life was spent tied to bathrooms. The urgency of finding a restroom before I had an "accident" was a challenge...and one that didn't always have the most pleasant outcome. At my worst, I had diarrhea 25 times a day. I had no energy left to do much of anything and I had two young children at home to take care of.

I became aware of the Green Bay Ostomy Support Group in 1987. I had known that ostomy surgery might be in my future and I wanted to learn more about it. I started to attend a few meetings. There I met the most wonderful ostomates who were able to educate and share with me, to give me hope, support and guidance. I learned that ostomy surgery was not the end of the world...it could often be a new beginning.

In January of 1988, I became extremely ill from the colitis and was hospitalized. Nothing more could be done for me except to remove my horribly diseased colon. But because I was so weak and so sick, the doctors knew I would not survive the surgery unless they could "build me up" a bit first. I was put on a regimen of hyper-alimentation (intravenous feeding through a catheter inserted in my chest).

After being on hyper-al for a week, my colon and rectum were removed and I was given an ileostomy during proctocolectomy surgery. That operation was the beginning of my "new life". I have never regretted having it done...I only wish that it had been done sooner!

It took me almost a year to fully recover from the surgery. The high doses of steroids I had been on slowed the healing process considerably. I had to be weaned off the prednisone slowly, and then it took a long time for my body to rid itself of the drug. But little by little, I gained strength, lost weight, and began to feel human again.

One year after my surgery, I ventured into our local YMCA to see what I could do to help get my poor overweight, unconditioned body into better shape. There I discovered...and immediately fell in love with...water aerobics. In the water I felt free...almost weightless and my arthritic joints didn't hurt when I was in the pool. My body responded quickly. I lost weight, gained muscle, and made new friends. I was no longer tied to a bathroom and the arthritis pain (that I had developed from being on steroids for so many years) seemed to disappear. I was a new woman and loving it!

Six months after starting water aerobics we lost our instructor and was told that if someone from the class didn't step up to take her place, the class would fold. No one else would do it, so I said that I would try. I discovered that I loved it. Never in my wildest dreams had I imagined that I would ever do something like that...even without an ostomy!

My ostomy gives me almost no problems while in the pool. In the 20 plus years that I have been teaching water classes, I have never had an "accident" in the pool. I take extra care to make sure that my flange is adhering well, that my pouch and clamp are securely fastened, and that I "time" when and what I eat before I teach so that my ostomy pouch remains almost empty. No one would guess that I have an ostomy unless I choose to tell them.

Because the Green Bay Ostomy Support Group helped me so much in transitioning to my new life with a stoma, I have felt a need to give back to others. For over a decade, I was the Ostomy Visitor Coordinator for the Green Bay area. I also have led a peer-led support group for new ostmates and, as a certified Ostomy Visitor, have personally visited with hundreds of new ostomates through the years. I truly believe that I have come "full circle" and that there was a divine purpose for the challenges I have been through.

My suppressed immune system has caused some other major health issues through the years. I developed a rare auto-immune disease called dermatomyositis, which affects muscles, organs and skin. In 2004, my muscles atrophied to the point that I could barely stand or walk and could not even dress myself. After months of physical therapy, toxic doses of steroids, potent drugs which caused lung damage and hair loss, and six months of IVIG treatments given three days a month through a port-a-cath inserted in my chest, I was finally able to get rid of wheelchairs, my walker, and eventually my cane. The dermatomyositis has also caused interstitial lung disease, and I must now use oxygen whenever I exert myself and during sleep.

Through all of this, I was determined to keep instructing my Y adult fitness classes whenever I could. I had to give up teaching my very strenuous water classes. Prior to getting so ill, I had been teaching 5 - 6 days per week and often two classes per day. I also taught a chair exercise class on land and Ai Chi in the pool. When I got very ill, I had to take some time off, but then slowly worked my way back to teaching. I now teach several chair exercise and gentle water fitness classes each week. And on good days, I can occasionally even manage to sub one of those more strenuous water aerobic classes.

I must be on oxygen when I exercise, so I am connected with 50' feet of oxygen tubing to a large oxygen tank that sits on the side of the pool or next to my chair for land classes. My students are good about watching out for the tubing that floats or drags around behind me. So far, I haven't "roped" anyone!!

I also spent one full year not able to speak because of some damage to my vocal cords. When this happened, I came up with various ways of getting my class participants to know what I was doing by using facial expressions, hand and arm gestures, etc.

Everything is a matter of modification. If you want to do something badly enough, you need to figure out a way that you can accomplish it. Perhaps you won't be able to do things exactly as before, but there usually is a way to achieve the end result.

I think that I am testimony that you can do almost anything after ostomy surgery that you did prior to it...and oftentimes even much more! It may take a bit of planning ahead and a little extra care, but never let it get in the way of living your life to the fullest! Dream big. Live life!


Dave Drella

DAVE DRELLA
Ileostomy at age 45,
due to ulcerative colitis

MACHINIST, OWNED AND MANAGED A RESIDENTIAL GENERAL CONTRACTOR BUSINESS & ENJOYS HUNTING, FISHING, TRAVELING, ANTIQUE TRACTORS AND FARM EQUIPMENT
At age 40, a final, correct diagnosis was made of a problem that I had since the early years of grade school. As we know, kids can be mean, and when you're in the upper years of grade school and you have an "accident", verbal abuse can make life extremely miserable. I attended a one-room country school with the "outhouse" about 150 feet from the school. This did not help my situation at all!!

Early on, the symptoms would go into remission, sometimes for a year or more. Most of the doctors I had seen always called it the flu, a virus, or just a bug. At the time I was 40 years old, I had a major flare-up with pain levels so high that I passed out in the bathroom. I ended up seeing a new doctor, who after 45 minutes of questions, sent me to a gastroenterologist that same day. After a 10-minute scope this doctor told me, "You've got ulcerative colitis...very bad colitis!"

For the next five years, and after trying numerous medications that failed - some very miserably - the only medication that worked at all was prednisone. Prednisone had many, many side effects and I had them all. To this day I still have problems because of it...very bad headaches, rigid muscles, arthritis, and hair loss..much like after major treatments of chemotherapy.

I was hospitalized for 34 days and put on hyper-alimentation (IV feeding.) I was so sick that I could not eat anything. I had lost 54 pounds, even though I was on prednisone which typically causes weight gain. At that time I was working as a machinist and had missed 54 continuous weeks of work. I then returned to work on a rehab program, starting at four hours and adding one hour every six months. I was gaining strength, but losing ground due to the continuous flare-up.

During this time, and probably due to the prednisone, I had a herniated disk occur in my lower back. The only way I could get my back fixed was to be off the prednisone for six months. This put me between a rock and a hard place, but I made the decision to go ahead with ostomy surgery instead of living my life totally handicapped. This was January 6th of 1989.

My back injury turned out to be a huge blessing in disguise. The morning after my surgery the surgeon came into my room and made the statement, "Boy, have I got good news today!" I was thinking this man is crazy until he told me he had just gotten the pathology reports and that I had beaten full-blown colon cancer by about two months. What an attitude adjustment that was!! After the surgery and a weaning off period from prednisone, I had successful back surgery.

Since my surgery, I have been able to be very active and once again enjoy life, as it should be. I have worked as a machinist and I have owned and managed a residential general contractor business. I enjoy hunting, fishing, traveling, antique tractors and farm equipment. I do volunteer work at the National Railroad Museum in Green Bay, Wisconsin, where I am an engineer on the train ride. I have traveled Europe, Mexico and much of the U.S. since my surgery. I would never have been able to even consider most of the things listed above had I not had the surgery. My only regret is that I waited that last five years before having the surgery.

I am currently actively involved with the Green Bay Area Ostomy Support Group and serve as the group's president. I'm also a certified Ostomy Visitor. I was fortunate enough to have had an Ostomy Visitor help myself and my family see and understand the ostomy surgery and what to expect in life after surgery. Since I have been blessed with a "second chance at life," I find it very fulfilling to be able to help others to see that there is light at the end of the tunnel and this light can be the brightest of your life.

Lorena Lemerond Shamrock
Lorena Lemerond

LORENA LEMEROND
Ileostomy at age 39, due to
ulcerative hemorrhaging colitis

HAD THE FIRST ILEOSTOMY PERFORMED
IN THE STATE OF WISCONSIN!

When I was 36 years old I developed ulcerative hemorrhaging colitis. I spent about 15 minutes of every hour in the bathroom hemorrhaging...that ended up being between 12-15 times daily...and every week had to go to the hospital for blood transfusions. I was married and raising three young children.

My son developed rheumatic fever when he was in first grade and had to spend seven years in bed. During that time, I had to always carry him to the bathroom. After he got well, my daughter, Kathy, who was eight years old, also came down with rheumatic fever and had to spend a year in bed. I had to carry her to all her doctor appointments. It was in the midst of all this that I developed the colitis.

To help pay the many medical bills, I took a job at Gold Bond Ice Cream, which was right across the street from my home. I worked there for 16 years.

After suffering with the colitis for three years, I was hospitalized. At this point, I was extremely ill and weighed only 84 pounds. I spent the next nine months in the hospital.

During that time, my doctors had to travel to Ohio to learn more about ostomy surgery. Mine was the first ileostomy performed in the state of Wisconsin (55 years ago). I ended up having four surgeries to complete the ostomy. Because I developed gangrene after the first surgery, the ostomy had to be moved to my other side. Since that time, I have had numerous other surgeries, including one eight years ago to move my ostomy back to the original side again!

When I had my first ostomy surgery, there were no such things as ostomy appliances or equipment. I had to use plastic vegetable bags (from the grocery store)! To hold the bags in place, I would cut a hole in my girdle. This "system" leaked ALL THE TIME! I was fortunate that when I had a messy "accident" at work, I could run right across the street to my house to take care of it. Thank goodness for all the latest ostomy inventions that we have today!

When the Green Bay Ostomy Support Group began, I joined it. I really enjoyed talking with all the other ostomy patients.

When I was 47 years old, my husband (age 46) died unexpectedly, leaving me alone to raise my three children. I have had 38 surgeries to date and have been hospitalized hundreds of times in my lifetime (133 of those being at St. Vincent Hospital in Green Bay).

With the help of St. Vincent Home Health once a week, I am now able to still live on my own, in my own apartment. I give myself sodium chloride/potassium IVs nine hours every day, through a Hickman catheter in my chest.

I'm happy that I am still able to live in my own apartment, care for myself, and enjoy my 18 beautiful grandchildren and 38 great-grandchildren. God willing, I will celebrate my 91st birthday in September 2009. I have never regretted having ostomy surgery.

A note from Lorena's daughter, Kathy:
"My mom was so filled with faith and I just admired her soooooo much. She has been my inspiration throughout my entire life! Whenever I have a problem, I think of her and realize that I have nothing to complain about!"

FOOTNOTE: Lorena died November 20th, 2011 at the age of 93.


Lois Reineck

LOIS REINECK
Urostomy at age 5, due to spina bifida

RETIRED TEACHER & SCHOOL LIBRARIAN
Do you remember your first day of Kindergarten? I do. It was September 1957 and I was four years old. I remember putting on my high top white leather shoes, which some children called my "baby shoes". Having been born with spina bifida, these shoes were needed so my foot would not flop over when I walked. People could easily notice that my shoes were different from the other students. What they couldn't see was that I was wearing cloth diapers and heavy rubber pants. These were necessary so I wouldn"t have an "accident".

After many visits to my doctor and several specialists, I was diagnosed with Spina Bifida Occulta L-5 (closed spine) shortly before my first birthday. My parents were told I would probably never walk and I would have many problems with my bladder and bowels. My feet were put into casts that did help me walk when I was two years old. After that I had a metal brace attached to my shoe and also a special brace that I had to wear at bedtime. I had to wear the high top leather shoes until I was in third grade, thus the name "baby shoes" was often heard when I was on the playground. I finally was able to switch to saddle shoes, but by that time my right leg was two-inches shorter, so I had a two-inch lift attached to the heel of my shoe.

When I was eleven the doctors put staples in my left knee to stop that leg from growing. After a few years the staples were removed and the leg length difference was down to one-fourth of an inch. I still have a small lift on the heel of all my shoes. The casts, braces, and lifts did not keep me from walking, running, climbing trees, and riding my bike. The Lord had plans for those feet and legs. The doctors were proved wrong many times over!

I had continual problems with my bladder. I was often hospitalized with a fever 102 degrees or higher as the infections would settle in my kidneys. They would try to catheterize me and that helped for a short time. But when the catheter was removed the infection would flare up again. After many procedures to try to keep my bladder working, the doctors determined my bladder was paralyzed. Within a few short months of starting Kindergarten, the doctors told my parents I would need ostomy surgery in order to stay alive.

The doctors explained the surgery to my parents. Naturally, their greatest fear was whether or not they were making the right decision. After much prayer and discussion, they gave their approval for the surgery. Their hope was that this would bring an improvement for the way I led my life.

My urologist, Dr. Sargent, was a very kind man. He would often take me on his lap when he talked to me. One day he brought me a doll and drew a dot on her side. Then he told me that was what he was going to do to me so I wouldn't be so sick. He explained that they would attach a bag to collect the urine. Even at five years old, I could look into his kind eyes and trust that he would do what he said.

The surgery was scheduled, and after several delays, was finally done on December 20, 1957 - five days before Christmas. My mom said the surgery was delayed a few times to allow the doctors extra time to study how to do this type of surgery. After many hours, the doctors spoke to my parents and said the surgery was a success. Then they proceeded to tell my parents that I was the first child that they had done this type of surgery on at that hospital! Once that shock wore off, my parents breathed a sigh of relief and said a prayer of thanks.

After surgery, they placed a catheter in the stoma, which ran into a small baby-bottle lying on my stomach. I went with this "contraption" for about a week because the medical team did not know what to use. They literally had to go to the pharmacy to find out what to put on it! The first appliance wasn't even for a urostomy because those hadn't been made yet. I was so small that they used a rectangular colostomy bag. There were no drainable pouches back then, so I had to cut the corner of the bag, empty it, and close it up with a rubber band. These appliances were disposable and often had to be changed several times a day. I wore this type of bag until I was in third grade. Then they finally came out with appliances specifically for urostomies.

In those days there was no support group available for people with ostomies, or help for my parents. I was blessed with a special nurse, Alice, who had a colostomy. Alice not only befriended us, but also proved to be a very helpful and supportive resource.

A family friend, "Cia," suggested giving my ostomy a name. "Waltzing Matilda" was a popular song at the time, so "Matilda" was chosen - and was soon shortened to "Tillie." My family knew what was happening when I would say, "Tillie's leaking." The name stuck because it is still used affectionately today!

My grade school years were not always easy. The other children could see when I had surgery and was on crutches. They could not see how I felt when I had kidney infections and missed school...so they felt I was faking. In fourth grade, and again in eighth grade, I missed so much school that I had to repeat those grades. Thankfully I was blessed with a few close friends that knew I was not faking. They were my support system and a few of them have remained my friends throughout my life. I have always been open with people and willing to talk about my ostomy. My parents let me decide whom I would tell and how much I wanted known.

High school and college were challenging years emotionally. Having repeated two grades, I was two years older than most of my classmates and that often created a few problems. They were entering a stage just about the time I was leaving it. Those were often lonely days for me.

There was an Ostomy Support Group in the small Minnesota town where I lived and I was fortunate to meet other people who had had ostomy surgery. However, I simply did not know another person my own age that had an ostomy. I served as Treasurer, Vice-President, and eventually President of the group before I moved to Milwaukee to start my teaching career.

Fast forward to 1976, when I was no longer a student but now sat on the other side of the desk as a teacher. Of course, I told my principal and several of the teachers about my medical problems. They were very supportive and understanding. Thankfully, I did not miss many days due to illness.

My first year teaching, I was able to teach 28 active third and fourth graders, coach B-Team Cheerleading (not my favorite thing), and coach girl's softball. In later years, I added coaching girls' basketball, directing the Children's Choir and Head Librarian to my school duties. In the summer, I taught summer school and did one-on-one tutoring. I also coached, as well as played on, the women's softball team. A few nasty injuries to my leg curtailed my playing days, but still allowed me to coach. My mother much preferred watching me on the sideline with my clipboard than seeing me collide with another player!

While I was teaching in Milwaukee I was introduced to a fine Christian man named, Bruce. I had taught some of his nephews and was introduced to him by his sister-in-law. Bruce was divorced and had custody of his four children. We dated for a year before we became engaged. After eleven long months we were married and I became an instant mom to two boys and two girls. The youngest boy, Mark, had autism. With Bruce having four kids, and with Mark's problems and me with my medical problems, always makes us wonder which one of us was desperate and which one was crazy! After 27 years, we still haven't figured it out!

In 1988 we moved to De Pere, Wisconsin, so Bruce could start a new job. It took a year before I had a teaching position again. I became the Extended Learning Teacher at a Lutheran School in Green Bay, WI. Within a few years I was also teaching some second grade classes as well. I really enjoyed tutoring students one-on-one. It was such a joy to see their faces 'light up' when they understood a difficult concept. My last few years of teaching were full-time with third and fourth grades, much like when I had first started many years before. The Lord blessed me and I was able to teach for nearly 30 years before my leg problems had made my retirement necessary.

Through the years I have had about 30 surgeries...either on my legs or in connection with my ostomy. Since my original ostomy was done at age five, I have had several revisions. A few months before my wedding, it was discovered that I still had the bladder that the original doctors told my parents had been removed in 1957! So after our honeymoon, I had major surgery to remove the bladder and perform a partial hysterectomy.

Just short of forty years after my original ostomy surgery, the conduit was shrinking from the inside. The doctor said it was just so old that it was not getting the proper blood supply. A new conduit was made and I was back in business...or so I thought. I had a blockage and was in the hospital for over two weeks. I have also had several hernias because the abdominal wall has been used and cut into many times over the course of fifty plus years. A few years ago the entire stoma and conduit had to be moved. After the last revision in 2008, the doctors said I might continue to need revisions every few years as my body changes with age.

When I was ten, my father passed away. After that, my mother was faced with making many decisions on her own about my health care. At age 90, she is still my best nurse and confidant. My two brothers and other family members have always been supportive. I am blessed to have a very understanding and helpful husband. We have found humor to be very useful when certain ostomy accidents occur - even in romantic settings!

In my retirement, I still continue to be the Head Librarian at the school where I taught and occasionally do some tutoring. I also find other areas where I can volunteer, as my health permits. I enjoy spending time with my family, especially my two grandchildren. I have held the offices of Treasurer, Vice-President, and President of the Green Bay Ostomy Support Group and am currently on its Board of Directors.

The Lord willing, in December of 2009, "Tillie" and I will be together for 52 years! I am proof that you can live a full life with an ostomy. I encourage you to find a support group and meet other people with ostomies so that you know you are not alone!


Marge Voelker

MARGE VOELKER
Colostomy at age 52,
due to colon cancer

ENJOYS GOLF, CAMPING & GARDENING

The year was 1993 and life was good. Our children were on their own, I worked at the local pharmacy and my husband was an over-the-road truck driver, who was home on weekends. The talk at work was, that if you were over the age of fifty, it was important to have a colonoscopy to be checked for colon cancer.

One day I read an article in a magazine about colon cancer...how important it was to check how your body functioned daily and to have a colonoscopy done. I was having some trouble with what I thought were hemorrhoids, so I made a doctor appointment.

One week after I saw the doctor, I was in surgery to remove a cancerous polyp in my colon I had colo-rectal cancer, and I would need to have a permanent colostomy, as they could not reconnect my colon. I was scared...and didn't know anyone who had gone through this to ask what it was about.

Things were pretty much a blur the first few days. I was just starting to take short walks, when the doctor said that I would be going home in two days and that a nurse would be in to help me with putting on my appliance. Now I was really scared! I had two days to learn about this "appliance thing" before I went home...where no-one but me would know how or what to do.

The nurse came and together we worked on how and what to do. She said that I would have no trouble. I was scared but knew I had no choice but to learn how to put it on.

That same day a very nice lady came to visit me. She had a colostomy, and had had it for a few years. She talked about her experience and how well she was getting along. She also told me about a support group that met once a month in Green Bay, Wisconsin. She left information for me to take home to read.

Now I had a lot of questions! How would my husband feel about me and how would the intimate part of our life be? How would others treat me? What kind of clothes would I wear? Would my appliance show? Would my stoma make noise? What if I had a leak? I had so many questions and no-one to ask.

The next day I left the hospital to go home. I was happy to be home, but scared about how I was going to do this appliance thing on my own. I was told I could return to my daily routine, and that in six weeks I could go back to work.

Well, the day came when I had to change my appliance for the first time myself. Now I was scared...but told myself that I had no choice, so get out the directions the nurse sent home with me and just do it. Well, I couldn't believe it when I had everything in place and it was staying on. I was so happy that I had actually done it. The next day I had my husband take me to town...shopping. And nothing happened.

Now it was time to return to my job. Once again, the questions started to come to mind again. My family, friends and co-workers were so supportive and helpful that things were almost the same as before my surgery.

After a few months of trying to be tough and deal with little things that came up with a new ostomy, I had to talk to someone who knew what I was talking about. I remembered the nice lady that had visited me at the hospital and left information about the support group in Green Bay. Now, Green Bay was 50 miles away from our house and my husband was out of town...but, my best friend said that she would go with me to a meeting.

I had had my surgery in June, but didn't go to my first meeting until October. It was the best thing I could have done. Everyone made me feel so welcome and it was like I was no longer alone. A lot of other people had ostomies too, and I felt much better after talking with them. They talked about their daily lives and how they dealt with their ostomy problems. I really felt more confident, and for the first time, I knew I could live with the ostomy.

I began to realize how lucky I was. My cancer was caught in time and I didn't need chemo or radiation. I really could live a very normal life with a colostomy.

That was 16 years ago in June. I am so blessed with my faith, my family and my friends.

My husband and I are retired now, and we travel some, camp a lot, golf in the summer, snowmobile in the winter and keep busy with family and friends. LIFE IS GREAT!