Seeking Insights on My Health Condition
Age: 25 years Gender: Female Ethnicity: Caucasian, Australian • Official diagnoses: Deep infiltrating endometriosis (diagnosed in 2020), adenomyosis (2024), suspected unspecified inflammatory bowel disease (IBD) (2025), suspected small intestinal bacterial overgrowth (SIBO) (2025). • Medications currently taken: Ondansetron 8mg three times a day for chronic nausea, Budesonide 9mg daily for IBD, and Visanne 2mg daily for endometriosis. • Known allergies: Metoclopramide, cyclizine, Augmentin, and tapentadol. • Medical background: Tonsillectomy in 2018, appendectomy in 2019, four laparoscopic excisions of endometriosis (in 2020, 2021, 2023, and 2024), and a single oophorectomy in 2025. Symptoms include: • Diarrhea accompanied by blood and mucus • Persistent nausea • Episodes of vomiting • Significant weight loss exceeding 15 kg • Fatigue • Occasional dizziness • Pain in the lower abdomen • Joint discomfort • Skin rashes on various parts of the body and face • Calprotectin levels varying between 200-600 • Hot flashes and heat sensitivity • Night sweats • Palpitations of the heart • Increased heart rate Tests conducted: • MRI considering Crohn's disease • Colonoscopy and endoscopy • Abdominal ultrasound • Abdominal CT scan • Blood work (normal aside from elevated testosterone and ferritin levels) • 24-hour heart monitoring • ECG (results abnormal) I've consulted both my gynecologist and gastroenterologist, and I am on a waiting list to see an immunologist, cardiologist, and pelvic floor physiotherapist. Despite undergoing multiple surgeries, trying various medications, and extensive imaging and blood tests, my health issues remain elusive. The complexities cannot be solely attributed to my existing diagnoses, and medical professionals are uncertain if I truly have IBD or another condition that mimics its symptoms. While I have noticed slight progress with Budesonide, I still feel far from my pre-illness state. I have increased my fluid and electrolyte intake, maintain a LOW-FODMAP diet, consume probiotics, and have eliminated gluten and dairy from my meals. Additionally, I engage in daily meditation practices to soothe my vagus nerve. These symptoms have persisted either daily or at least five times a week since November 2024. I am reaching out in hopes that someone might have unconventional thoughts about what this condition could entail or could suggest potential ways to alleviate my situation.
Answers (1)
7/28/2025, 1:40:47 AM
OpenHealth AI
It sounds like you’re managing a very complex health situation, and I appreciate how much effort you’ve put into understanding and navigating your symptoms. With multiple diagnoses and ongoing symptoms, it can be incredibly frustrating when you're not experiencing the relief you seek. Let’s break down your situation and explore actionable steps that might help.
Main Points:
- Your current symptoms may be interconnected, and further evaluation by specialists will likely be helpful.
- A focused approach on symptom management and lifestyle adjustments can also aid your quality of life.
- Monitoring symptoms and dietary choices plays a vital role in identifying triggers and improving your condition.
Explanation:
You have several ongoing health concerns, such as deep infiltrating endometriosis, adenomyosis, and suspected inflammatory bowel disease (IBD). Each condition can contribute to your symptoms, like chronic nausea, gastrointestinal disturbances, pain, and fatigue.
Your elevated calprotectin levels suggest inflammation in the gut, and while Budesonide seems to be making some progress, it may not fully address all of your symptoms, especially if there's uncertainty about the nature of your bowel condition.
Next Steps:
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Symptom Tracking: Keep a symptom diary. Document what you eat, any flare-ups, and how you felt before and after meals. Look for patterns that might reveal triggers for your symptoms, particularly related to your gastrointestinal health.
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Dietary Adjustments: Continue with the LOW-FODMAP diet, but consider working with a dietitian experienced in gastrointestinal disorders to fine-tune your eating plan. They can help ensure you're getting adequate nutrition while managing your symptoms effectively.
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Hydration & Electrolytes: Maintain your focus on hydration, especially with any gastrointestinal upset. Incorporating oral rehydration solutions can help replace electrolytes lost through diarrhea and vomiting.
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Integrative Practices: Since you’re engaging in meditation, consider other integrative approaches like gentle yoga or tai chi, which may help with joint discomfort and enhance relaxation.
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Plan for Appointments: Given that you have multiple specialists involved, creating a summary of your health journey, including key symptoms and treatments tried, could be beneficial during your consultations. Prioritize your upcoming appointments with the immunologist and cardiologist, as understanding any autoimmune or cardiac components could be essential.
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Follow-Up on Cardiac Symptoms: Since you mentioned abnormal ECG results and symptoms like palpitations and dizziness, prioritizing follow-up with a cardiologist is crucial to rule out any underlying cardiovascular issues that could be contributing to your sensations of increased heart rate and fatigue.
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Mental and Emotional Health Support: Chronic health problems can take a toll on mental health. If you're feeling overwhelmed, consider seeking support from a counselor or therapist who specializes in chronic illness, which can provide an additional layer of support.
These steps can serve as a foundational plan to help manage your symptoms while you await further specialist insights. It’s understandable to feel frustrated, but small, manageable changes can lead to improvements over time. Keep advocating for yourself, and please feel free to return if you have more questions or need further guidance.
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