Marge's Journey: Overcoming Crohn's Challenges
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My Name is Marge and this is my Story--
Living with Crohn's Disease
My name is Marge Gabbert, I am 79 years old, and I have had a wonderful life. Great parents, many wonderful friends, a loving and devoted husband, and good health. I do not have any children. I had one brother who passed away from Aids in 1989. My parents have passed.
What is Crohn's Disease?
I had never heard of it before. It falls into the category of IBDs, inflammatory bowel disease. This includes Crohn's Disease and Ulcerated Colitis. It affects the entire gastrointestinal track starting from the mouth to the colon.
It most commonly affects the end of the small intestine and the beginning of the colon. It can go deep into the bowel tissue and lead to complications.
The symptoms are diarrhea, severe abdominal pain and cramping, weight loss, fatigue, and malnutrition. The exact cause is unknown.
There is no cure, but thankfully, there are treatments. The most successful treatments for severe Chron's disease are biologics. This requires getting a shot once a month. The cost is (I hope you're sitting down) $32,829.19 per dose...yes, you heard it right!
I have severe Chron's Disease. It is insidious. It sneaks around inside your body, attacking your vital organs, your skin, hair, eyes, teeth, fingernails, and you don't know it's happening. It's unpredictable. I've had it since 2000. It was not problematic then, and I lived a normal life, until November 27, 2021.
My Life Before November 27, 2021
The majority of my life I have been wearing dance shoes. Mom put me in dance school at age 4 to learn tap, ballet and acrobatics. I was affectionally called Shirley Temple, after the child singer and tap dancer because I had curly hair like hers. (Fun Facts: Shirley Temple's hair wasn't curly; it was naturally straight! Her mom set 56 pin curls to create the famous curly look...my is naturally curly, ha-ha, so there!)
I fell in love with dance as a child, discovered Ballroom and Latin dance as an adult, studied really hard, and founded Fascinating Rhythm Dance School in 1977, (www.margegabbert.com).
I love teaching Ballroom and Latin dance and performing, and I had the pleasure of teaching the late Robin Williams for the movie Bicentennial Man. Because of Crohn's disease, I have been forced to retire, temporarily, I hope.
I love teaching and I am miserable if not doing it.
It is who I am, my identity.
The events of November 27, 2021
There's so much I want to say.
I don't know how to start, and once I do, I'm afraid I won't know how to stop. And I don't want to bore you. I apologize that my story is so long. I tried to make it shorter, but it's been four years and five months, and a lot has happened. A whole lot.
Excruciating abdominal cramps sent me to the hospital for emergency surgery for a hole in my intestine. Partially digested food, stomach acid, bacteria, and fecal matter leaked into my gut causing widespread infection (peritonitis), and sepsis. This is a life-threatening condition causing organ failure and death if not treated
quickly.
After four surgeries (I don't remember any of them), an unknown amount of intestine was removed, plus a great deal of infected muscle from my abdominal wall was cut out. My abdomen was cut up in random sections as the surgeons removed the infection, leaving very pronounced bulges. My belly looks like a landscape of hills and valleys. I have very little inner core muscle to help me stand up straight and support my back.
It looks grotesque. I've only been able to look at my belly in the mirror twice over four years.
No more bikinis for me!
Hospital Days
This initial hospital stay was eight weeks. Little did I know that
there were many more to follow.
I was in bed almost the entire time. My legs atrophied, and I had to learn to walk again. I was afraid I would never walk again, let alone dance.
I felt so isolated. Day-after-day of boredom. Getting poked constantly, daily dressing of the wounds, blood draws, IV lines, and hooked up to this machine called a wound vac.
I had a lot of time to think about my new life as a disabled person. I was tired and weak. I didn't know if I was going to get better. Was a going to be a burden on my husband? I thought when it will end.
I was mentally and emotionally fading away. I reached a point when I didn't care anymore about what happened to me--just waiting to die, even looking forward to it. Peace at last.
Going Home, Hooray!
Going home was like being set free. The doctors and nurses were all awesome. They were kind and compassionate. They literally saved my life! I am especially grateful to my surgeons and GI specialist. But eventually the walls start to close in around you. Too much time to think. I need to get out of here.
They were reluctant but agreed to let me come home (after eight weeks) when my husband proved he could care for me. We took videos of the nurses cleaning my wounds, changing my dressings and ostomy bag, and treating the skin rashes. In addition, I required a home nurse three times a week to help clean the wounds and monitor the wound vac machine. They took vitals and kept an eye out for any infection. Sometimes they took pictures, and all this was reported back to my doctor.
Complications of Recovery
I made many unexpected trips back to the hospital ICU. It was like a revolving door. Every two months it was something else; always waiting for the other shoe to drop. I got deep abscesses and fistulas...the abscesses required drains to be inserted into my abdomen, and the fistulas (abnormal connections between organs) required a pouch to collect the output of fluids. I had a PICC line inserted into my neck to a vein near my heart to feed me liquid food from a bag.
Then there was another big surgery for an intestinal blockage.
I woke up with another deep wound and another hook up to a wound vac (a vacuum-assisted closure which creates a controlled, negative pressure around the wound).
The suction of this gentle vacuum pulls the edges together, removes fluids and infection, promotes blood flow, encourages new tissue growth, and maintains a moist environment, which speeds up the healing of deep wounds. Still, I needed a blood transfusion for sepsis infection, even dialysis for a few days.
I had to learn to walk again.
Life Adjustments
I wear an ileostomy bag, called an appliance that I must wear for the rest of my life. It is high maintenance, requiring attention every three hours, even during the night.
I have three holes in my belly putting out fluids. Besides the ileostomy stoma, I have an opening for mucus fluid to drain, and a hole for fistula output. This requires 24/7 observation and maintenance.
I've had to change the way I dress to hide the bulges and plan every outing carefully with a go-bag of supplies, and my walker or cane. I miss being spontaneous.
I'm not used to depending on other people so much for so many things. It's demoralizing. I felt defeated, at times hopeless. Nothing to look forward to.
Present-Day
I am taking Stelara now, a biologic. I go once a month to San Francisco General Hospital to get an injection. It's working wonders. I haven't had a complication since I started.
I watch what I eat religiously, exercise, meditate, and keep a positive, optimistic outlook. I am still under doctor's care and always will be.
I have awesome friends. My amazing husband is my tireless caregiver, my rock and hero.
I have been humbled. I feel like I've died and been reborn many times due to all the unexpected complications and setbacks. My life has changed completely; I now know what it means to be disabled for the rest of one's life, and yet I feel blessed because it could be much worse and my heart bleeds for those less fortunate than me.
Didn't See This One Coming
I have recently discovered that I have extensive dental work to be done. A side effect of Chron's disease is malnutrition, painful mouth sores, thrust, dehydration, and dry mouth. This leads to a climate in the mouth for the development of cavities. During my recovery I was too sick to travel to my dentist (my dentist is a two-hour round-trip commute) and sit in a dental chair for an exam and X rays.
My dentist gave me a treatment plan of $17,500 for crowns and fillings. This doesn't include tooth extractions and implants. There is major work to do. I am devasted with this news, and scared.
I'm scared about many things, but mostly how am I going to pay for this. It is huge financial burden. Being self-employed, I didn't have dental insurance. I always had good, strong teeth and a twice a year cleaning was all I needed. I never expected an illness in my gut would cause such serious dental problems. I never thought I would need to ask people for money.
Fortunately, all my hospital/medical expenses, surgeries, MRIs, CT scans, Stelara injections, and so much more, are covered by Medicare and Medi-Cal.
My life has been blessed with the best family and friends anyone could ask for and I give thanks daily. Now, I humbly ask if you can spare any small amount to help with my dental expenses. I will be forever grateful. I will be reporting back to you about all the procedures as they occur. Thank you from the bottom of my heart.
Love and Peace, Marge
Organizer
Marge Gabbert
Organizer
San Francisco, CA