Seeking Guidance for Ongoing Illness
Age: 19 For more than eight months, I have been grappling with an illness that has left me in a persistent state of distress. Currently, I am taking ondansetron to manage my nausea, but I was also prescribed lansoprazole. Unfortunately, the latter made it very difficult for me to eat, prompting me to discontinue its use against medical advice. I understand that this choice was not ideal. My situation is complicated further by the news that I might remain on a waiting list for a gastroenterology appointment until March or April of next year, hit hard by this condition since December. Initially, my episodes of vomiting occurred about once a week or every other week. However, things escalated to a point where I often experienced nausea for several days, followed by multiple days of vomiting. After that, I would have short intervals where I could eat, but eventually, the cycle would start anew, repeating every few days. Lately, my throat has also been quite sensitive. For instance, over the past two days, I’ve found it impossible to drink anything cold. Today, I felt nauseous even after laughing. Just a week ago, I had difficulty coughing without ending up sick, and I can't even take large gulps of liquids without discomfort. I have undergone several tests, including an endoscopy, MRI, and blood tests, all of which returned normal results. If you need details about specific blood tests to better understand my situation, feel free to ask. I'm reaching out for any advice you might have because I don’t know how much longer I can cope with this. Eating has become a significant struggle, and I avoid social gatherings where alcohol is served as I can’t tolerate it anymore, which is a drastic change since I never used to have issues in that regard. Moreover, I find myself anxious about going out due to fears of an uncertain place to manage my symptoms. Any recommendations or guidance on how to obtain medical assistance more swiftly or insights into what might be at play here would be greatly appreciated. I’ve searched online for answers, but haven’t had much luck.
Answers (1)
7/24/2025, 10:20:50 PM
OpenHealth AI
I'm truly sorry to hear about the distress you're experiencing with your ongoing illness. It sounds incredibly challenging to deal with such persistent symptoms, especially given the delays in getting specialist care. You deserve relief and support.
Main Points:
- Persistent Nausea and Vomiting: Your symptoms suggest a complex issue, possibly related to gastrointestinal or other systemic conditions.
- Medication Side Effects: Discontinuing lansoprazole may have implications for managing your symptoms, but it's critical to prioritize your comfort.
- Need for Immediate Self-Care and Coping Strategies: Focusing on dietary adjustments and anxiety management might provide some relief while you await further medical appointments.
Explanation:
Your ongoing symptoms, including the vomiting and increased sensitivity in your throat, could be linked to various causes, ranging from gastrointestinal causes to more functional issues. The normal test results, such as endoscopy and blood tests, can be frustrating but provide some reassurance that there are no obvious structural problems. The feelings of anxiety about eating and social situations are also common when dealing with chronic illness, which can exacerbate physical symptoms.
Next Steps:
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Dietary Adjustments:
- Small, Frequent Meals: Instead of large meals, try eating smaller amounts more frequently throughout the day. This can help reduce nausea and prevent overwhelming your stomach.
- Bland Foods: Focus on bland, easily digestible foods like toast, rice, bananas, or applesauce. These are less likely to trigger nausea.
- Hydration: Sip small amounts of water or electrolyte drinks throughout the day. Avoid cold beverages if they trigger discomfort.
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Re-evaluating Medications:
- Consult Your General Practitioner (GP): Since you're experiencing significant side effects from lansoprazole, discuss other options with your GP. They might suggest alternatives that can help manage gastric acid without the adverse effects on your appetite.
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Symptom Monitoring:
- Keep a Symptom Diary: Track your food intake, symptoms, and any potential triggers. This can provide valuable information for future medical consultations and help identify patterns that might inform your care.
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Explore Anxiety Management:
- Relaxation Techniques: Practice deep breathing, meditation, or mindfulness exercises to help reduce anxiety when you’re out or anticipating meals.
- Support Groups or Counseling: Seek out local or online support groups for individuals with similar experiences. This can provide social support and coping strategies.
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Follow-Up on Specialist Care:
- Reach Out for Updates: Contact the gastroenterology office periodically to check on your waitlist status or inquire if there are any cancellations. Expressing your symptoms might prioritize your case if it's deemed urgent.
Given the disruption this condition is causing in your life, please remember you are not alone in this. Taking small manageable steps can help lead to improvement, and I encourage you to keep advocating for yourself as you navigate this challenging situation. If more specifics about your symptoms or treatments come to mind, please share so we can refine this advice further.
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# 7-Month-Old Child with Abernethy Malformation - Exploring Treatment Options ## [7-Month-Old] Identified with Abernethy Malformation (Congenital Portosystemic Shunt) - Treatment Methods? **Age:** 7 months **Gender:** Female **Height:** Age-appropriate **Weight:** Currently 9 kg, was 2.8 kg at birth **Ethnicity:** Asian **Duration of Symptoms:** Present since birth **Location:** Uzbekistan **Pre-existing Health Issues:** Abernethy malformation (congenital portosystemic shunt), liver hemangiomas, chronic jaundice, anemia **Current Treatments:** Supportive management --- ## INITIAL PRESENTATION (June 2025 - July 2025) Our daughter arrived on **June 27, 2025**, presenting with: - Birth weight: **2.8 kg** - Marked jaundice (yellowing of skin and sclera) - Pale or clay-colored stools - **Bilirubin level: 245 μmol/L** (typically <20) An immediate ultrasound indicated multiple liver anomalies, initially thought to be hemangiomas. --- ## FIRST COMPREHENSIVE ASSESSMENT (August 1, 2025 - 1 Month Old) ### Multislice Computed Tomography (MSCT) with 3-Phase Contrast (August 1, 2025): **RESULTS:** - 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WBC: 5.8 × 10⁹/L (SHOWS IMPROVEMENT) - **RBC: 2.93 × 10¹²/L** (IMPROVED but still low) - **Hemoglobin: 72 g/L** (SHOWS IMPROVEMENT but still low) - Platelets: 223 × 10⁹/L (BACK TO NORMAL) - Neutrophils: 30.0% - Lymphocytes: 64.8% - Monocytes: 4.6% ### Biochemistry (January 28, 2026): - Total protein level: 67 g/L (slightly deficient) - Creatinine: 20.7 μmol/L - **Total Bilirubin: 242 μmol/L** (STILL HIGH - unchanged) - **Direct Bilirubin: 142 μmol/L** (VERY HIGH) - **ALT: 50 IU/mL** (DRASTICALLY LOWER from >1000!) --- ## OVERVIEW OF PROGRESS OVER 6 MONTHS | Parameter | August 2025 | January 2026 | Change | |------------------|-------------|---------------|--------------------------| | **Hemoglobin** | 69 g/L | 72 g/L | ↗ Slight improvement | | **RBC** | 2.1 | 2.93 | ↗ Improved | | **ALT** | >1000 | 50 | ✓✓ MAJOR IMPROVEMENT | | **Bilirubin** | 245 | 242 | → Unchanged (still elevated) | | **Portal vein** | 6.1 mm | 3.9 mm (US) | ↗ Decreased | | **Platelets** | 403 | 223 | ↘ Normalized | | **Shunt size** | 9.9 mm | 9.9 mm | → No Change | --- ## CURRENT SITUATION (February 2026 - 7 Months Old) - **Weight:** 9 kg (good growth rate in spite of condition) - **Jaundice:** Continues to be present (yellow skin) - **Stools:** Remain pale/clay-colored - **Development:** Achieving appropriate milestones - **Energy:** Appears to have a good energy level - **Feeding:** Normal appetite --- ## QUESTIONS FOR r/AskDocs We have been informed this is **Type 2 Abernethy malformation** (portal vein present). **Three treatment avenues have been proposed:** ### Option 1: **Endovascular Coil Embolization** (minimally invasive approach) - A catheter is inserted via the leg vein to access the shunt and deploy coils/plugs to close the abnormal vessels - Pros: No surgical incision, minimal discomfort, short hospital stay (2-4 days), no scars, enhanced safety - Duration: 1-2 hours - Recovery: 2-4 weeks for jaundice to show improvement ### Option 2: **Open Surgical Intervention** - An incision in the abdomen to ligate abnormal vessels and redirect blood to the liver - Pros: Direct visualization, effective results - 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