It took her 15 years to discover she has Crohn’s disease: ‘It was a relief’ – 08/12/2022

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With several misdiagnoses, Débora Suzane Weber, 37, took 15 years to discover what caused her recurring and persistent stomach pains, diarrhea and vomiting. During the long journey, she underwent several tests, went through several doctors, was referred to a psychiatrist and came to think that she was crazy.

At 26, the business administrator had rushed surgery to control an intestinal obstruction, removed 69 cm of her small intestine, had a biopsy and discovered she had Crohn. “It was a relief, I was going to be able to treat myself.” Then she tells her story.

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

From the age of 12 onwards, the symptoms were accentuated and worsened with the appearance of hemorrhoids and cracks. My mother would take me to the hospital, visit gastroenterologists, proctologists, do several tests, but nothing was detected.

Over the years, I’ve heard everything imaginable, that I was that way because I ate wrong, ate too much sweets, had a worm, had irritable bowel syndrome, lactose intoleranceto gluten, was a picture of food poisoning.

At age 15, I was misdiagnosed with gastritis and since then I started taking medicine and following a balanced diet, but I didn’t improve.

In adolescence and adulthood the situation only got worse, I felt a lot of pain in the upper part of the abdomen, I had diarrhea daily and recurrent episodes of vomiting. This greatly affected my quality of life, sometimes I isolated myself and became selective about the environments I frequented.

Anywhere he went, from a restaurant to the mall, the first thing he did was let me know where the bathroom was so I could access it quickly.

In addition, he had some strategies to avoid getting sick: he took antidiarrheals before going to a concert, traveling, going on the road, and he stopped eating at parties and events.

I’ve been through several unpleasant situations, such as not getting to the toilet in time and evacuating on clothes. The most humiliating of these was the day I evacuated in my car on a completely congested road. I felt terrible.

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

I was misunderstood by my family and I’ve often heard comments like: ‘Get out of bed’, ‘go do something’, ‘go to the gym’, ‘you’re too lazy’.

For more than a decade I looked for an answer to find out what disease I had, but I confess that there came a stage in my life that I thought was crazy. My mental health was extremely shaken because no one gave credit to what I felt and my pain.

Image: Personal archive

I blamed myself for getting sick. Doctors relied on test results, and since nothing was found, they thought I had a psychiatric problem.

The last gastro I went with sent me to the psychiatrist, said I had anorexia, bulimia and some image disorder — he thought I made myself vomit to lose weight. It was nothing like that, I felt pain, vomited and had diarrhea every time I ate, I stopped eating so I wouldn’t feel sick.

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

I went to the psychiatrist, he gave me medication to anxiety and to sleep. Four days later, I woke up urinating blood and not having the strength to get out of bed. An aunt took me to the hospital, I was hospitalized with suspected kidney inflammation.

On the fourth day, my abdomen tripled in size, became very swollen. I couldn’t eat or have a bowel movement. I had a CT scan and it was found that I was having an intestinal obstruction.

My mother called the gastro who had sent me to the psychiatrist, he went to see me and operated on me in a hurry because he said my life was in danger. During the surgery, he removed 69 cm of my small intestine that was necrotic. He even removed my appendix and performed a temporary ileostomy—a connection between the small intestine and the abdominal wall to divert stool into a collection bag. I had two respiratory arrests and spent three days in a coma in the ICU.

Débora Suzane Weber, 37 - 3 - Personal archive - Personal archive
Image: Personal archive

Upon waking up, I was informed that a biopsy had been taken and that I was suspected of having small bowel cancer or Crohn’s disease, the former was curable, the latter was not, just control. My first reaction was anger and denial.

I was hospitalized for a month, I spent my 27th birthday in the hospital, it was a lot to process. During this period, the results of the biopsy came out, 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 I was going to be able to treat myself. I was referred to a gastro specialist in inflammatory bowel disease.

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

Six months later, I stopped using the immunosuppressant and started using the biological medication, which is carried out in a vein, at the hospital, every two months — I still use it today.

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

Evolution in the treatment of IBD

At DIIs (inflammatory bowel diseases) affect more than 5 million people worldwide. In Brazil, the prevalence varies from 12 to 55 individuals per 100,000 inhabitants, mostly young men and women, between 15 and 40 years old. years old.

Crohn’s disease can affect any part of the digestive tract, from the mouth to the anus, affecting the small intestine, the colon segment and the perianal region. The most common symptoms are abdominal pain (cramps), weight loss, fatigue, and periods of diarrhea, which may contain blood or mucus (phlegm).

According to Rogério Saad, 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 the diagnosis. Another characteristic of this clinical picture is that it occurs in outbreaks with periods of improvement and intensification.

intestine;  stomach;  digestion - iStock - iStock
Image: iStock

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

aderson Damião, gastroenterologist and professor at the Faculty of Medicine at USP (University of São Paulo), divides the history of inflammatory bowel diseases into 5 eras: despair, therapeutic options, evidence-based medicine, biological drugs and disease modification.

The proctologist Saad explains that the despair phase is related to the scarcity of information about IBDs and the few therapeutic options that there were until then. “In the beginning, the use of corticosteroids was one of the prerogatives of treatment, which brought little quality of life to 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 IBDs are studied, the more scientific knowledge is generated. From the evidence-based medicine — pointed out as the third era — there was a better understanding of the treatment. In the case of Crohn’s disease, it was noted that it can present and evolve in different ways in each patient, according to its presentation, location, intensity and extent.

We are currently in the era of biologics, considered the most innovative therapy today. Saad explains that the first drug discovered and used more than 20 years ago to the present day is a specific monoclonal antibody against one of the elements of the inflammatory cascade, anti-TNF.

“This has changed the evolution, the knowledge and the way we treat any of the inflammatory bowel diseases. It is always important to know how to decide which is the best medication for each phase and moment of the disease”, says the president of Gediib.

Saad emphasizes that as Crohn’s disease has no cure, it is necessary to have mechanisms and drugs that allow control over time, patient adherence to treatments and a multidisciplinary approach (nursing, nutrition and psychology/psychiatry), so that the patient able to resume their daily activities with better quality of life.

Janssen, a Johnson & Johnson pharmaceutical company, launched in 2021, with the scientific support of Gediib, a multidisciplinary guide that brings topics to patients such as the need for a support network, care for the mind and emotions, nutritional tips, a diary for recording of routine, evolution of care and doubts to be resolved in medical consultations.

The material is part of the Siga Sem Pausa campaign and is available for free download on the campaign website: https://www.janssen.com/brasil/blog/sigasempausa.

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