Model (30) suffers from a chronic illness: Now she is explaining the disease

Created: 01/04/2022, 5:02 pm

From: Dominik Stallein

Regina Huber (30) is successful as a model on Instagram - despite her illness.

The Wolfratshauser suffers from Crohn's disease © Christoph Mittermüller

Regina Huber (30) is a successful model on Instagram.

The young woman suffers from Crohn's disease - and uses her reach to encourage people.

Wolfratshausen - No matter what Regina Huber does, Nelson doesn’t leave her side.

When she goes to work, Nelson comes with her.

When she meets up with friends for coffee, Nelson sits with her at the table.

And when she goes to sleep in the evening, she shares her bed with him.

Sometimes he takes a back seat, but there are times when Nelson causes a lot of trouble.

Even if the 30-year-old never wanted Nelson, the world should know about her companion.

Regina Huber wants to encourage other people who have to grapple with their own Nelson.

Model (30) suffers from a chronic illness: she explains the illness on instagram

Nelson, that's how the Wolfratshauser named her illness.

Sometimes she also speaks of her "little belly monster".

Regina Huber suffers from Crohn's disease, a chronic, incurable bowel disease.

With the nickname, suffering loses some of its horror.

The belittling could hide the suffering the young woman has already gone through.

Sick and no diagnosis: Wolfratshauserin tortured herself for years

At the age of 16, Huber first noticed that something was wrong. "I had a stomach ache, much more severe than I knew it before," she recalls. She suffered from indigestion and visited one doctor after another. Sometimes she heard it was just puberty. Other doctors said that the young woman simply suffered from stress, perhaps because of her hairdressing training. She accepted that for a while. "But if you have to go to the toilet 37 times in a day, you no longer believe that there has just been a bit of stress lately."

For five years the woman from Wolfratshausen suffered from an illness that no one recognized.

Her complaints got worse.

Much worse.

An emergency operation saved the then 21-year-old's life.

And the procedure finally brought her a diagnosis.

The future course?

Not clear.

Chances of recovery?

Equals zero.

But at least she now had a diagnosis.

Crohn's disease: Chronic bowel disease turns Model's life upside down

Before the operation, Huber had built up a second mainstay as a model in addition to his job. She was photographed in underwear or immersed in the 1950s in a retro outfit. She celebrated success with the Bavarian pin-up photos and was the advertising face of local companies. The self-confidence with which the young woman posed in front of the camera received a sensitive crack with the operation. “It was an extremely difficult time,” she says, both mentally and physically. She continued to step in front of the camera, but showed neither the surgical scars nor the artificial anus that she wore for months. It took a long time before she realized for herself what the diagnosis means for her, the young woman with an affinity for Bavarian joie de vivre: that from now on she will forever carry a "little belly monster" inside of her,that can start raging at any time.

Despite Crohn's disease: Regina Huber is self-confident on Instagram

Over time, she learned what is good for her and what it is better to do without.

She experienced some of this with pain.

If she went around the houses with her friends, with a full program, “Canale grande furtstieg”, as she calls it, then she had to pay for it for a week.

She even had to change jobs because all the standing in the salon and the fumes from bleaching did not get along with Nelson.

Today she works as a financial accountant, part-time.

Huber is “not resilient enough to work more or more physically”.

And although she smiles cautiously when she says this, you can see that she does not want to acknowledge some of the side effects of the disease.

Scars: Regina Huber (30) is open to her illness on instagram.

© Clasky Photography

Sometimes she has a great desire to “feel like a young woman again”.

Then she and friends want to turn night into day, eat whatever she wants and live a normal everyday life without taking between eight and twelve tablets in the morning “in all the colors of the rainbow”.

Every now and then she allows herself the luxury of going out in the evening.

"But then carefully and only rarely," she says thoughtfully.

Nelson then accompanies them, and Huber doesn't want Nelson to have to get upset again.

Crohn and other intestinal diseases: Instagram model wants to educate and give courage

That cannot be avoided entirely.

Crohn's disease occurs in flares and is relatively unpredictable.

The 30-year-old was operated on five times in eight years, most recently last September.

She has an attack about every twelve to 16 months.

Then she suffers from the most well-known symptoms - abdominal pain, diarrhea, nausea - but also from many other problems that few have on their radar.

“My skin becomes impure, my eyes get worse, I get migraines and am chronically exhausted.” But that's not all.

"For example, my nerves are pretty offended by the many operations."

Huber chooses simple pictures to explain the disease.

She wants you to understand her.

Mental stress during illness is a big problem for Wolfratshausern: "The worst thing is being alone"

The years of suffering, with its ups and downs, eats away at your psyche. She visits a therapist, which is what she would advise anyone who receives such a diagnosis. "The worst thing for me was being alone with the illness." Nobody in my circle of friends could empathize with what she was going through. That's why Huber made a decision: With her model pictures, she had already gathered a large fan base on her Instagram account. About ten thousand people see the pictures and videos she publishes there. “I wanted to use this range for something useful,” she says. As "crohniegingin" - she gave this stage name to her appearance on the platform - she explains about her illness, gives insights into her rehab, her prevention and deep into her soul. She uses Instagram like a diary.“It's good for me,” she says.

Regina Huber is the ambassador of Purple Hope - "knows how lonely you feel"

Huber is an ambassador for "Lila Hope", an association that wants to get intestinal diseases such as Crohn's disease out of the taboo zone.

The 30-year-old sees this as her personal mission.

“I know how lonely you feel,” she says.

"It would have helped me back then if there had been someone who empathized." That someone would like to be Huber.

"A lot of young people write to me, some already have a diagnosis, others are made aware through my photos that their intestinal problems could also be a serious illness."

The Wolfratshauserin gives them advice.

For example, not being satisfied when a doctor succinctly brushes problems aside.

And she explains how she manages to endure the annoying Nelson in everyday life.

This is important.

Because once the "little belly monster" clings to someone, it stays for a lifetime.