It took 15 years to find out she had Crohn's disease: 'It was a relief'

It took 15 years to find out she had Crohn’s disease: ‘It was a relief’

With so many misdiagnoses, it took Deborah Susan Webber, 37, of Rio Grande do Sul, 15 years to discover the cause of her frequent and persistent stomach pain, diarrhea, and vomiting. During the long journey, she underwent many tests, went to many doctors, was referred to a psychiatrist, she even thought she was crazy.

At the age of 26, the director of the company hurried to an operation to control an intestinal obstruction, removed 69 cm of the small intestine, took a biopsy and found out that it was infected krone. “It was such a relief, I would have been able to treat myself.” Then she tells her story.

“At the age of two, I already had frequent gastrointestinal symptoms, had diarrhea interspersed with dehydration and a lot of stomach pain. I went to hospital, but they didn’t find out what I had.

From the age of 12, symptoms worsened and worsened with the appearance of hemorrhoids and fissures. My mother used to take me to the hospital, visit gastroenterologists, proctologists, do many tests, but nothing was discovered.

Over the years, I’ve heard everything you can imagine, that I was because I ate wrong, ate too many sweets, had worms, had irritable bowel syndrome, lactose intolerance, gluten intolerance, it was a case of nutrition poisoning.

At the age of 15, I was mistakenly diagnosed with gastritis and since then I have been taking medications and following a well-balanced diet, but I haven’t improved.

In adolescence and adulthood, the situation worsened, I felt severe pain in the upper abdomen, I had daily diarrhea and frequent bouts of vomiting. This greatly affected my quality of life, sometimes isolating myself and becoming selective about the environments I frequented.

Wherever he went, from a restaurant to a shopping mall, the first thing he did was tell me where the bathroom was so I could get to him quickly.

Plus, he had a few strategies for avoiding getting sick: Take anti-diarrheals before going to a concert, travel, go on the road, and stop eating at parties and events.

I went through many unpleasant situations, such as not going to the toilet in time and removing clothes. Most humiliating was the day I got out of my car on a completely busy road. felt bad.

In addition to my digestive symptoms, I also felt very tired, and had almost no energy or disposition for anything. I even managed to do chores, like cleaning the house or doing a college project, but it was an effort beyond the norm.

My family misunderstood me and I often heard comments such as: “Get out of bed”, “Go do something”, “Go to the gym”, “You are too lazy”.

For over a decade, I searched for an answer to find out what disease I had, but I admit there was a point in my life that I thought was crazy. My mental health was severely shaken because no one gave credit for what I felt and my pain.

Photo: personal archive

I blame myself for my illness. The doctors relied on the test results, and since nothing was found, they thought I had a psychological problem.

The last stomacher I went with him to the psychiatrist sent me, and he said I had anorexia, bulimia, and some image disorder – I think I made myself vomit to lose weight. It wasn’t, I had pain, vomiting and diarrhea every time I ate, and I stopped eating so I wouldn’t feel sick.

At the height of one of the crises, I went to the bathroom 15 times a day. I lost 20 kg in three months and reached 51 kg, I was malnourished.

I went to the psychiatrist, and he gave me medication for anxiety and sleep. Four days later, I woke up peeing blood and didn’t have the strength to get out of bed. An aunt took me to the hospital, I was hospitalized on suspicion of kidney infection.

On the fourth day, my stomach tripled in size, and it became very swollen. I couldn’t eat or defecate. I had a CT scan and it turned out that I had an intestinal obstruction.

My mother called the gastroenterologist who sent me to the psychiatrist, and he went to see me and perform surgery on me in a hurry because he said my life was in danger. During surgery, he removed 69 cm of my small intestine that was necrotic. He even removed his appendix and performed a temporary ileostomy – a connection between the small intestine and the abdominal wall to turn stool into a collection pouch. I had two respiratory arrests and spent three days in a coma in the intensive care unit.

Debora Suzane Weber, 37 - 3 - Personal Archive - Personal Archive
Photo: personal archive

Upon waking, I learned that a biopsy had been taken and that I suspected I had either small bowel cancer or Crohn’s disease, the former being curable, the latter not just controlling. My first reaction was anger and denial.

I stayed in the hospital for a month, spent my 27th birthday in the hospital, and it was so demanding. During this period, the biopsy results came in, and the doctor closed the diagnosis and confirmed that I had Crohn’s disease.

After 15 years of searching for an answer, I was relieved to know I wasn’t crazy. I was really sick and would be able to treat myself. I was referred to a gastroenterologist for inflammatory bowel disease.

I had a new bowel surgery, removed my ileostomy bag and started treatment with an oral immunosuppressant.

Six months later, I stopped using the immunosuppressants and started using the biologic drug, which is given intravenously, in the hospital, every two months – and I still use it today.

The disease is stable, I no longer have any pain and my intestines are working well. I follow up with gastroenterology twice a year, and once a month with a psychiatrist/psychotherapist. My quality of life has improved a lot, I feel more productive and have more energy. I’m another person.”

Advances in the treatment of inflammatory bowel disease

in DIIs Inflammatory bowel diseases (IBDs) affect more than 5 million people worldwide. In Brazil, the prevalence ranges from 12 to 55 individuals per 100,000 population, mostly young men and women, aged 15-40 years. year.

Crohn’s disease can affect any part of the digestive system, from the mouth to the anus, affecting the small intestine, the section of the colon, and the perianal area. The most common symptoms are abdominal pain (colic), weight loss, tiredness, and bouts of diarrhea that may contain blood or mucus (phlegm).

According to Rogerio Saad, a proctologist and president of Gediib (Brazilian Organization for Crohn’s Disease and Colitis), these symptoms can be confused with signs and symptoms of other diseases and delay diagnosis. Another characteristic of this clinical picture is that it occurs in outbreaks with periods of improvement and intensification.

Intestine.  stomach;  Digestion - iStock - iStock
Photo: iStock

“If symptoms persist for more than two months, it is necessary to seek a specialist. In these cases, there is a possibility that we are talking about inflammatory bowel disease, as is the case with Crohn’s disease and ulcerative colitis,” warns Saad, who is also a member of the Brazilian Society of Colon and Proctology. .

Anderson Damiao, a gastroenterologist and professor at the University of São Paulo School of Medicine (University of São Paulo), divides the history of IBD into 5 eras: despair, therapeutic options, evidence-based medicine, biologics, and disease modifying.

Proctologist Saad explains that menopause is linked to a paucity of information about IBD and few treatment options that had existed until then. “Initially, the use of corticosteroids was one of the perks of treatment, resulting in poor quality of life for the patient,” he comments.

Over time, other possibilities were studied, ushering in an era with new treatment options — including corticosteroids themselves.

Also, according to the doctor, the more inflammatory bowel diseases are studied, the more scientific knowledge is. From evidence-based medicine – referred to as the third age – there has been a better understanding of treatment. In the case of Crohn’s disease, it has been observed that it can appear and develop in different ways in each patient, according to its presentation, location, severity and extent of spread.

We are currently in the era of biology, which is considered the most innovative treatment today. Saad explains that the first drug discovered and used more than 20 years ago to this day is a monoclonal antibody against one of the elements of the inflammatory cascade, an antitumor necrosis factor.

“This development has changed the knowledge and the way we treat any IBD. It is always important to know how to determine the best medication for each stage and moment of the disease,” says the Gediib chief. .

Saad stresses that since there is no cure for Crohn’s disease, mechanisms and medications that allow control over time, patient adherence to treatments and a multidisciplinary approach (nursing, nutrition, psychology/psychiatry) are essential, so that the patient can resume their treatment. Daily activities have a better quality of life.

Launched in 2021, with scientific support from Gediib, Janssen, a pharmaceutical company of Johnson & Johnson, is a multidisciplinary guide that introduces patients to topics such as the need for a support network, caring for mind and emotions, nutritional advice, and logging notes on routines and evolution of care and uncertainties. To be resolved in a medical consultation.

The materials are part of the Siga Sem Pausa campaign and are available for free download at the campaign website:

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