Chantele is 46 years old and found out that she had intestinal malrotation at age 40 during an emergency room visit for abdominal pain. She was told that it was ‘no big deal and it wasn’t the cause of my pain.’ Although she wasn’t told what the cause was. As with many who are given an intestinal malrotation diagnosis, she wasn’t given the medical term, intestinal malrotation, just that her “intestines were backwards”.

After obtaining her medical records and doing her own research, she discovered that the condition can be life-threatening. As she understood, based on her findings, if her intestines twisted the wrong way, she had very little time to get to an emergency room. If she was able to make her way to an emergency room safely, there was no assurance that a medical professional would accurately assess the problem and provide the emergency surgery necessary to survive. This is not exactly what Chantele had in mind for life in her 40th year.

She followed up with her primary care provider and went to see a gastroenterologist. The consensus was, that if she had made it that far in life without any life-threatening events, she must be fine. Again, she was told not to worry about her diagnosis.

She continued to research symptoms and treatments. So many things that she had dealt with her entire life made sense as she read about them. The abdominal pain after eating, chronic constipation (no matter how much fiber intake), random bloating was so bad that her waistline would increase by roughly three inches overnight and her clothes wouldn’t fit. She was jarred that there was a reason for it. This new information didn’t make Chantele feel better. Life went on, she never found help and her intestinal concerns were put on the back burner until July of 2023.

At age 45, July 3rd, 2023, her meal of choice was breakfast at a local diner. Four hours later she recalls telling her husband that she felt overly full and uncomfortable. She hadn’t eaten much, an average size breakfast, yet she felt like she had just eaten Thanksgiving dinner. She was uncomfortably full. It was after this meal and the extreme feeling of fullness that she began vomiting. The vomit was bright yellow. She remembers thinking, ‘what in the world did I eat that made it so yellow?’ She had just been living her normal life for the past 5 years, her intestinal malrotation was not at the front of her mind. She noted that she hadn’t seen bright yellow vomit listed as a troubling warning sign of intestinal malrotation and volvulus. It was not on her radar. She vomited on and off the rest of the day and still felt really horrible the next day. The illness caused her to skip her 4th of July plans. The vomiting had stopped, but she couldn’t eat. She would take one or two bites of food and that uncomfortably full feeling returned. She lost 10lbs in one week. She felt herself despite not being able to eat but decided to get an Xray because of her intestinal malrotation diagnosis. She knew that she should probably see a doctor. She went to my PCP and had an x-ray and an ultrasound, but all tests were normal. The medical staff’s advice to me was that she should ‘chew slower.’ They treated Chantele, at age 45, like she didn’t know how to chew properly. Their suggestion was belittling and dismissive.

By August 2023, she still couldn’t eat. Smoothies and high calorie nutrition shakes had infiltrated her dietary rotation. She was tired and weak. She turned to a friend whose husband is a doctor. He went to medical school at a major hospital/university in her area. It was simply luck that he went to medical school with the current CEO of her hospital. The doctor reached out to assist Chantele in finding adequate care. She was connected with a surgeon who had done the Ladd’s procedure on adults before. The Ladds procedure is often seen as a standard procedure for infants and children, but finding a doctor who had worked on adults was not an easy task.

September 2023, Chantelle still couldn’t eat more than a few bites at a time. She had laparoscopic Ladd’s done on September the 8th. She had Ladds bands growing directly above my stomach, making it difficult for food to travel properly through her digestive tract. She realized that this was likely why she couldn’t eat more than a few bites at a time. She finally came to terms with the fact that she was not crazy. She did not need to chew slower. Her concerns were valid. She spent one night in the hospital for recovery.

February 2024. It is now five months later, and Chantele is feeling better than she has ever felt before. She can eat, she has no more chronic constipation, no bloating, and no vomiting. She reports her recovery and quality of life to be ‘amazing.’

Chantele’s wish is that through sharing her story, that others don’t have to go through the same pain and diagnostic challenges. She shared that the entire experience from diagnosis to surgery was exhausting. She harbors a huge dissatisfaction with the dismissiveness of the medical providers that she encountered prior to her intervening clinician. Having to educate every single medical person that she encountered wasn’t a fair ask. Medical professionals had Chantele questioning her own sanity. Chantele’s word for her intestinal malrotation journey can be summed up as ‘exhausting.’