OpenHealth Q&A

Feeling Overwhelmed and Unwell

Hello (F25 UK), Since I hit puberty at the age of thirteen, I have been battling with my health. Initially diagnosed with anemia and a deficiency in vitamin D, I have faced a range of troubling symptoms, including ongoing vomiting, recurrent headaches, nausea, a significant loss of appetite, and alternating constipation and diarrhea, as well as some blood in my stool. Various tests have been conducted to rule out allergies, such as gluten and dairy, along with diabetes, largely due to elevated inflammatory markers in my blood. This led to a referral to a children’s hospital, where I underwent treatment for Crohn's disease, which included taking 50 mg of steroids and 40 mg of omeprazole. Despite receiving iron infusions for my anemia, my healthcare team considered using injectable medication, but my blood tests indicated that my white blood cell count was alarmingly low. Following extensive procedures, including colonoscopies and endoscopies, doctors discovered ulcers, and I was fitted with a nasogastric feeding tube. For extended periods, I was advised to abstain from eating anything, yet I continued to experience the same distressing symptoms. It was suggested that I might have an eating disorder; however, the clinic declined to intervene, citing the need for a definite diagnosis of my underlying issues. Compounding my troubles, my menstrual cycle has been unending; I would bleed continuously for 30 days, with exceptionally heavy flow that required both pads and tampons, accompanied by severe pain. Initially prescribed birth control pills, I still experienced bleeding due to my vomiting condition, necessitating a switch to the Depo injection. For seven years, this situation went on without proper assessment until I attended university, where a doctor ordered a bone density scan that revealed thinning bones. Consequently, I was placed on a higher dosage of the pill (desogestrel 75 mg) alongside hormone replacement therapy (HRT) with Estrogel (three pumps). I underwent a brain scan that returned normal on a CT scan, as did ultrasounds. An MRI and X-ray revealed delayed gastric emptying. Throughout this period, my symptoms persisted despite trying numerous antiemetic medications, none of which were effective. I endured the placement of a nasojejunal feeding tube for about seven years, which was replaced as necessary, and underwent countless endoscopies and colonoscopies, yielding no conclusive results. At my worst, I experienced chronic constipation, enduring up to four weeks without a bowel movement, which exacerbated my feelings of nausea, vomiting, and lack of appetite. Upon being seen at an adult hospital, a gastroenterologist diagnosed me with gastroparesis; however, there appeared to be no viable solutions available. Now at 25 years old, I remain perplexed about my true condition. My daily life often finds me confined to bed, plagued by headaches that compel me to retreat into darkness or seek sleep. A constant state of exhaustion grips me, alongside ongoing symptoms of vomiting and constipation. The uncertainty surrounding my menstrual cycle lingers; a transvaginal ultrasound yielded no findings, and attempts to insert an IUD were unsuccessful due to the pain induced by speculum use, despite my notable pain tolerance. Feeling disoriented and frustrated, I am left grappling with an overarching sense of malaise without understanding the causes behind it. I have adhered to all medical recommendations and guidance yet remain lost in my health journey. At present, I am on a treatment regimen that includes omeprazole (40 mg), nortriptyline (10 mg), desogestrel (150 mg), Estrogel HRT (three pumps), and sertraline (100 mg, which I am trying to gradually reduce from 150 mg due to recent struggles with excessive sweating following minimal exertion, like walks). Additionally, I take a multivitamin. I would appreciate any insights or suggestions on how to proceed from here.

Answers (1)

7/18/2025, 12:50:51 PM

OpenHealth AI

Thank you for sharing your complex health journey. It sounds overwhelming and frustrating to deal with such a myriad of ongoing symptoms and challenges. Your perseverance in seeking answers is commendable. Given your multifaceted health issues, let’s focus on actionable steps you can consider to help improve your situation.

Main Points

1. Your symptoms may suggest a combination of gastrointestinal issues (like gastroparesis and Crohn's disease), hormonal imbalances, and mental health factors.
2. It’s crucial to address each aspect of your health comprehensively and to continue seeking clarity on your conditions.
3. Consider lifestyle changes, symptom tracking, and potential adjustments to your treatment plan.

Explanation

You have been through a lot, including significant gastrointestinal problems, hormonal issues stemming from your menstrual cycle, and psychological stress related to your health. Gastroparesis can lead to substantial life disruption, including nausea and vomiting, which complicates nutrition and can affect your mental well-being. The continuous blood loss from menstruation may also exacerbate your anemia, leading to fatigue and other symptoms.

It’s essential to tackle your health from multiple angles:

• Gastrointestinal Health: You should maintain close communication with your gastroenterologist. Given your diagnosis of gastroparesis, dietary modifications may help ease symptoms. Generally, a low-fiber, low-fat diet with smaller, more frequent meals can be easier to digest.
• Menstrual Health: Continuing to work with your healthcare provider to find the best menstrual management method is vital. Discuss the possibility of alternative hormonal treatments if the current method continues to cause excessive bleeding or discomfort.
• Mental Health: The emotional burden of chronic illness cannot be understated. It might be beneficial to consider counseling or support groups focused on chronic illness to help cope with ongoing challenges.

Next Steps

1. Dietary Changes: Explore a diet designed for gastroparesis, focusing on soft, low-fiber foods that are easier to digest. A nutritionist who specializes in gastroparesis may provide tailored advice.

2. Symptom Tracking: Keep a detailed journal of your symptoms, food intake, menstrual cycle, and any medication adjustments. This can help identify triggers and show your healthcare team patterns over time.

3. Assess Medications: Revisit your medication regimen, especially with your healthcare provider, to address side effects such as excessive sweating and to ensure all medications are still the best fit for your symptoms.

4. Consider a Multidisciplinary Team: If feasible, ask your healthcare provider about consulting with specialists from different areas (e.g., gastroenterology, endocrinology, gynecology, psychiatry) to have a well-rounded approach to your health.

5. Emotional Support: Look for support groups (in-person or online) for chronic illness sufferers—sharing your experiences with others facing similar challenges can provide emotional relief.

Conclusion

Navigating such a complex health landscape is understandably challenging. By taking meaningful yet manageable steps, you might begin to find a clearer path forward. Always remember that you are not alone, and it’s okay to ask for help from your healthcare team to find tailored solutions that fit your needs. If you need further resources or support, please reach out.