Exploring Digestive Challenges Beyond Constipation
Hello everyone, I’m a 42-year-old woman (5’6”, 275 lbs) dealing with hypermobile Ehlers-Danlos Syndrome (hEDS) and small fiber neuropathy. Throughout my life, I’ve experienced chronic slow bowel movements, but since contracting Covid and going without medication, my bowel movements have become quite infrequent. I have undergone anorectal manometry but it did not yield positive results, and I’ve completed pelvic floor physical therapy three times. Currently, I’m on a regimen that includes Amitiza, magnesium, and bisacodyl every other day. Additionally, I take Lyrica, Zoloft, Xyzal, Propranolol, Mobic, and Zanaflex. **May Incident:** I went an entire eight days without a bowel movement, during which my gas production was nearly non-existent. My abdomen became extremely bloated and painful, with notable tenderness and muscle guarding. I found myself burping frequently, while passing minimal gas. This led me to seek emergency care, where I received IV fluids, nausea medication, and GoLYTELY (of which I could only tolerate about 2 liters). The outcome was primarily watery stool with some softer pieces. A CT scan indicated, "Constipation with stool throughout colon," showing a mildly dilated colon (approximately 6 cm) and slight dilation of the small intestine (around 3.0–3.2 cm) without any obstruction or transition point. My abdomen remained sore for several days, and it took about a week for my bowel movements to resume normally. **July Incident:** Once again, I faced over eight days without any bowel movements or significant gas. This episode brought severe nausea and extreme tenderness in my abdomen, alongside substantial bloating and distention. I experienced similar symptoms as in May, with noticeable burping and little gas output. At the ER, I received IV fluids and GoLYTELY (this time I managed to tolerate 2 liters). The result was primarily water and a few small, firm stool fragments. The CT results reiterated the previous diagnosis, stating, "Constipation with stool throughout colon," with images showing moderate dilation of the colon (approximately 6–6.5 cm) and mild small bowel dilation (around 3.2–3.5 cm), both gas and fluid present, yet no obstruction was found. Following that episode, I endured nine days filled with severe bloating, nausea, and tiny bowel movements. On August 1, I began taking bisacodyl every other day and shifted to liquid meals for breakfast and dinner, as per my doctor’s advice. Although I've started to pass larger stools, I've continued to experience bloating and discomfort. **Current Symptoms:** - Noticeable bloating and abdominal distention - Very decreased bowel sounds - More burping than passing gas - Early feeling of fullness (satiety) - At times, I burp up a meal 6–7 hours post-eating if I halt solid foods prematurely - Abdominal tenderness during and following these episodes It genuinely feels as though my digestive system completely “shuts down” during these flare-ups. I’m actively trying to understand what’s causing these issues, as I suspect it might not be limited to just constipation or IBS.
Answers (1)
8/3/2025, 2:02:11 AM
OpenHealth AI
Thank you for sharing such a detailed overview of your experiences with digestive challenges. It sounds incredibly frustrating and painful. Your symptoms point towards complex interactions between your underlying conditions (like hEDS and small fiber neuropathy) and your digestive health. I will address key aspects of your situation and suggest practical next steps to help manage your symptoms.
Main Points:
- Current digestive issues likely stem from multiple factors.
- Implementing dietary changes and symptom tracking could provide relief.
- Continuous communication with healthcare providers is essential.
Explanation:
Given your history of hEDS and small fiber neuropathy, both can contribute to gastrointestinal motility issues, leading to constipation and discomfort. The impacts from COVID-19 might have also exacerbated these issues. Your experiences of bloating, abdominal pain, and infrequent bowel movements suggest involvement of your digestive tract well beyond simple constipation.
The CT scans showing dilated bowel without obstruction indicate severe constipation, which can lead to complications like the ones you experienced. It’s important to manage not only the constipation but also any potential underlying issues that might be affecting your digestive motility and function.
Next Steps:
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Dietary Modifications:
- Increase Fluid Intake: Aim for at least 2-3 liters of fluids daily to help soften stool.
- Adjust Fiber Intake: Gradually increase soluble fiber (like oats, bananas, and apples) to help with bowel movements while being cautious with insoluble fiber (like raw vegetables), which might exacerbate bloating for some individuals.
- Consider Liquid Meals: Since you responded well to liquid meals, continue with them and possibly explore other easily digestible foods (like smoothies).
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Symptom Tracking:
- Keep a Diary: Record your diet, bowel movements, bloating episodes, and any medications taken. Identifying patterns can reveal triggers or effective strategies for managing flares.
- Monitor Medication Effects: Note how medications like bisacodyl and Amitiza affect your bowel movements and any side effects.
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Lifestyle Approaches:
- Regular Gentle Exercise: Engage in light activities, such as walking, to stimulate digestion.
- Frequent Smaller Meals: Eating smaller, more frequent meals can alleviate feelings of fullness and improve digestive efficiency.
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Consider Probiotics:
- Discuss with your healthcare provider the potential benefit of probiotics to help maintain gut flora balance, which can be beneficial, especially during episodes of digestive distress.
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Ongoing Medical Communication:
- Regularly update your healthcare team on your symptoms, dietary changes, and any challenges you face. Working together may facilitate a review of your current medication regimen to ensure it supports your digestive health.
If you ever experience severe symptoms such as intense pain, inability to pass any stool or gas, or severe nausea that disrupts daily life, seek immediate medical attention, as these can indicate complications.
Feel free to reach out if you have more questions or if specific areas need further clarification. You are taking proactive steps; that’s commendable!
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