Litchfield woman has paralyzed stomach, can no longer have food or drink through her mouth
While seated at a restaurant recently with friends, Rosie Hartwig-Benson was informed by an employee that if she was not going to order anything to eat or drink, as her lunch companions had, she must leave the establishment because she was taking up a seat.
“I was stunned,” she recalled. “I didn’t know what to say, so I just smiled.”
Her friends weren’t in a smiling mood, however. Angry, they voiced their feelings to restaurant personnel while Hartwig-Benson, 60, sat quietly, hurt and confused.
It’s not that Hartwig-Benson wasn’t hungry. Nor was she not thirsty. The problem is that the 60-year-old from Litchfield is afflicted with a silent disease that left her stomach paralyzed over 20 years ago.
“I haven’t been able to eat or drink by mouth since 1995,” she said. “I’m always hungry and thirsty. But this is what I’ve been dealt, and I have to live with it.”
It began as celiac disease, which affects 1 in 100 people. Celiac disease is a serious genetic autoimmune disorder where the ingestion of gluten can lead to damage in the small intestine. Gluten is a protein found in wheat, barley and rye. If untreated, celiac disease can lead to gastoparesis, generally a partial paralysis of the stomach.
In rare cases such as with Hartwig-Benson, the stomach becomes completely paralyzed. And because the stomach can’t empty itself, a person is no longer able to tolerate eating or drinking.
Following a surgical procedure, surgeons at Abbott Northwestern Hospital in Minneapolis bypassed Hartwig-Benson’s stomach and inserted a 3-foot tube that connects to her small intestine.
Now, instead of sitting down to bacon and eggs for breakfast, or even a bowl of soup for lunch, Hartwig-Benson’s food and beverage is served throughout the day by an IV nutrition formula called total parenteral nutrition (TPN). The formula is fed through a tube that protrudes through her stomach.
The pouch containing the formula is tucked neatly in a fanny pack that Hartwig-Benson wears around her waist. A monitor releases the formula a little at a time through the tube, much like an IV drip, and also lets her know when to replace the formula pouch.
Unbeknownst to physicians at the time, Hartwig-Benson had been afflicted with celiac disease as a young girl. In first grade, a rash broke out on her elbows and knees that became so severe that those areas would bleed. Rashes and blisters are two of the many symptoms of celiac disease.
“I remember my teacher and the students feeling sorry for me because I was in a lot of discomfort, and there wasn’t anything they could do,” she recalled.
Through the years, the disease progressed to the point that her autoimmune system was ravaged and eventually led to her stomach becoming paralyzed.
“Food was poisoning me,” she said. “And it slowly began to affect my other autoimmune organs.”
Since then, she has battled serious infections and undergone a multitude of surgical procedures.
“I’ve had to be rushed to the emergency room a few times,” she said, matter-of-factly.
Imagine how food and beverages are such a big part of our everyday life. Now imagine not being able to go out for coffee with friends, look forward to a Thanksgiving feast, taking a drink of cold water on a hot day, or even sucking on a mint.
“I can take a sip of water if my mouth gets dry,” Hartwig-Benson said. “But I have to swish it around and spit it out. And I can’t take any oral medicines.”
And because she isn’t hydrated, there isn’t enough saliva build-up to even lick an envelope.
It’s hard to tell the difficulties and frustrations Hartwig-Benson is enduring when meeting her. She has an engaging smile, an infectious laugh, and a seemingly positive outlook on life.
“I am grateful every day for being alive,” she said. “I’ve seen the light when I thought I was dying, and it changed my whole outlook on life.”
Hartwig-Benson has discovered an unfathomable way to at least partially compensate for a desire for food.
“If I smell food, it’s a way to help curb my cravings,” she explained. “It’s a little strange, but it works to some extent for me. My friends know about this, and they will let me smell their food at a restaurant.”
Smelling is certainly not a cure-all for her hunger pangs when seeing, smelling or thinking about food.
“It’s hard when I’m at a restaurant and I see all the plates of food going by me,” she admitted. “But it is what it is, and I have to deal with it as best I can.”
Hartwig-Benson’s son Justin, who lives in Mankato, recently returned to Litchfield to celebrate his birthday with his mother.
The day before, Hartwig-Benson spent the afternoon preparing a cheesecake with caramel topping that he had requested.
“It smelled so good,” she mentioned.
Preparing a cheesecake and then not being able to eat it, is a little like a child going to a playground and not being permitted to play on any of the equipment.
“I enjoy baking,” she said. “Sometimes I bake for the smell, and people find that hard to understand. But I mostly bake for others because I like doing things for people, especially my son. And it gives me satisfaction when I see them enjoy what I baked.”
Since she hasn’t been able to eat or drink since 1995, it would only seem natural that she mostly misses something like a tender steak, spaghetti with garlic bread, pizza, or even a glass of wine.
“I really miss cashews and red licorice,” she said, followed by a laugh. “And a frosty mug of A&W root beer. And I also miss my mom’s lemon cake that she would always make for my birthday.”
Food consumes a great deal of time in our daily lives. We focus on what to eat or drink, and then we spend time shopping, preparing, eating and cleaning up following our meals. We also grab snacks throughout the day.
Hartwig-Benson has found alternate ways to spend those hours. As well as being an excellent photographer, she wrote a book about her life called Petals of Distinction, a story of survival and faith that takes a reader through her heart-wrenching medical journey and into her mind, body and soul. The book honors the memory of her parents and is dedicated to her son.
“The ‘petals’ in the title of the book and the photo (of a rose) on the cover is in reference to my name (Rosie),” she said. “The photos on each chapter were ones I took, too.”
“I have found that writing about and sharing my experiences has helped me, and I hope it helps others,” she said. “Some of the things I wrote about had been locked up inside me for a long time. And it feels better to let them out.”
One of the doctors at Abbott Northwestern has marveled at the way Hartwig-Benson has gone about life despite not being able to enjoy food or beverages.
“He asked me how I cope,” Hartwig-Benson remembered. “My answer to him was that I know I am being carried by God. I’m a very spiritual person.”
Despite her illness, she also has discovered a new appreciation for life.
Being a nature and enthusiast and a photographer, the pictures Hartwig-Benson takes usually deal with some type of outdoor scenery.
“I see things now that I never noticed before,” Hartwig-Benson said, while pointing to a photo she took of a cloud. “I love to look at clouds and see things in them, like a heart shape. Or, I’ll notice something like a drip of water clinging to a spider’s web and take a picture of it.”
Hartwig-Benson spends the majority of her days now bedridden because of chronic pain, weakness and fatigue. Her cat, Sophie, usually cuddles beside her in bed.
“The cat’s purring seems to be telling me not to give up,” she said. “It gives me hope.”
Hartwig-Benson recalled the absolute lowest point of her life when she was about to give up hope while in her room at Abbott Northwestern Hospital in 1998.
“I was hooked up to all these monitors, listening to all the whirring and beeping machines,” she said. “And I was so malnourished. I weighed about 80 pounds.”
Hartwig-Benson, her body so weak that it was hard to even move in bed, mustered enough strength to shut off the machine that was keeping her alive.
A doctor then came into the room and began to talk to her about her situation.
“As he was talking to me, I noticed there was an envelope by my bed,” she said. “I was too weak to open the envelope so I asked the doctor to open it and read the note to me.”
The note was from her son, and the doctor read the uplifting message to Hartwig-Benson.
“Everything changed for me after that,” she said, with obvious emotion in her voice. “I knew I had to go on living for his sake. He means everything to me.”
Hartwig-Benson will require four surgeries a year for the rest of her life to replace the 3-foot tube running inside her with a new one.
“The hardest thing for me is learning to cope with the constant pain,” she said. “But I can’t emphasize enough how grateful I am for being here. I wake up each day and am grateful to experience another day. I embrace life the best way possible.”
Petals of Distinction is available on Amazon, from Barnes & Noble, Natural Food Co-op in Litchfield, or through Jan-Carol Publishing.