Is Chronic Intestinal Pseudo-Obstruction the Possible Diagnosis?
We have a fifteen-year-old daughter who has struggled with constipation since she was born. After conducting a full thickness biopsy, doctors ruled out Hirschsprung’s disease. However, she has been diagnosed with a connective tissue disorder, dysautonomia, neuropathy-related symptoms, and Spina Bifida Occulta at S1. Despite two MRIs showing no signs of tethered cord, her constipation has progressively worsened over the years. Her ability to eat deteriorated significantly to the point where she faced failure to thrive, experiencing pain daily. Medical treatments were ineffective, and routine X-rays indicated either a significantly high stool burden or a moderate burden accompanied by notable distension, yet no obstructions were evident. She usually did not appear bloated. In 2021, she underwent a cecostomy procedure, which initially improved her condition—allowing her to eat better, gain weight, and grow. Unfortunately, after about a year, the effectiveness began to wane, leading to recurrent backups and decreased appetite. By early 2023, she experienced her first episode of what was classified as a temporary bowel shutdown, prompted by a flush from her cecostomy. In February 2025, following a colonoscopy and manometry study, results revealed that her colon exhibited severe redundancy, very weak tone, and almost no functional activity throughout. The medical team proposed a total colectomy along with an end ileostomy, slated for late summer or fall. In May 2025, after undergoing a high-volume bowel cleanout, she experienced another bowel shutdown and required hospitalization due to significant vomiting and discomfort. Although her bowel function returned in one or two days, it was markedly poor. Unfortunately, she did not regain her strength and deteriorated from that point on. Her flushes had minimal impact, she was in constant pain, struggled to eat or drink, and her complexion became alarmingly pale—so much so that people remarked on how ghostly she looked. I could feel that she was gradually fading away. Her medical team decided to expedite her surgery, which took place in June 2025. During the operation, the surgeon discovered that her transverse and ascending colons were severely distended, while her descending colon appeared normal despite having limited function. A distinct transition zone was observed between the transverse and descending sections, resembling a pinch. Although the colon was sent to pathology, the results returned normal. Intriguingly, despite never appearing bloated, she lost four inches off her waist post-surgery, indicating that she indeed had been. Remarkably, since the operation, all her previous symptoms have vanished. Could it be that she was experiencing Chronic Intestinal Pseudo-Obstruction all along?
Answers (1)
7/12/2025, 4:01:34 AM
OpenHealth AI
It sounds like your daughter has been through a very complex and challenging medical journey. Based on the symptoms and findings described, it's indeed possible that she could have been experiencing Chronic Intestinal Pseudo-Obstruction (CIPO). This condition is characterized by impaired movement in the intestines, which can lead to symptoms similar to those of a bowel obstruction.
Explanation
CIPO occurs without any physical blockage and can manifest as severe constipation, abdominal pain, and distressing gastrointestinal symptoms, which seem to align with your daughter's history. Her connective tissue disorder, dysautonomia, and previous findings of intestinal dysfunction contribute to a likelihood of motility disorders like CIPO. The findings during her surgery, particularly the distension of her colons and the transition zone, could suggest underlying motility issues, reinforcing this possibility.
Next Steps
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Document the Current Status: Since her symptoms have improved significantly following the colectomy, maintain a detailed record of her bowel habits, eating patterns, and overall health. This can help track how her condition evolves post-surgery.
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Follow-Up Appointments: Ensure she continues to see her healthcare team regularly, especially specialists who understand motility disorders, to monitor her recovery and any potential long-term effects.
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Nutritional Support: Since she faced failure to thrive and has had issues with appetite, consider working with a dietitian to create a tailor-made nutrition plan that ensures she receives adequate nutrition and hydration as she recovers.
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Manage Symptoms: If new or recurring symptoms arise, such as abdominal pain or changes in bowel habits, keep promptly informing her healthcare team for further evaluations.
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Emotional Support: Given the struggles she’s faced, emotional and psychological support can also be beneficial as she adjusts to her post-surgery life. Consider connecting with support groups for families and adolescents dealing with similar gastrointestinal issues.
Your daughter's health is paramount, and continuing to build on the progress she's made after surgery can lead to better long-term outcomes. If you have further concerns or observations as she recovers, don't hesitate to reach out to her medical team for guidance.
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