Seeking Insights on Managing Lymphocytic Colitis
At 36 years old, I was diagnosed with lymphocytic colitis through a biopsy conducted in September 2022. My medical history includes an appendectomy during which I was found to have endometriosis, a tonsillectomy, ongoing migraine issues, and cyclic autoimmune neutropenia. My antinuclear antibody (ANA) test consistently returns positive results, although the levels fluctuate. Typically, my C-reactive protein (CRP) remains below 2, although it peaked at 17 during a sepsis episode linked to a C. difficile infection. I’m 5’3” and weigh 120 pounds, and my current medication regimen consists of 9 mg of budesonide daily, occasional doses of sumatriptan, Entyvio every four weeks, and Gravol nearly every day. To summarize my journey, since 2022, I've had an on-and-off relationship with budesonide. Each attempt to taper below 6 mg daily has required Entyvio, which I began in November 2024. Although it was effective initially, a switch to the pen form in June 2025 triggered a significant flare-up, and reaching stability has been challenging. I've been back on budesonide since June, and I realize the need to wean off it. Beginning a four-week IV infusion schedule in July, I saw some improvement. However, my treatment was interrupted for 10 weeks from September to November due to complications from otitis media leading to parotitis and the development of a 20 cm peripheral clot in my arm after IV antibiotics. We resumed treatment and I received a dose in November, but the parotid gland flared up again in January, prompting the clinic to delay further doses because of my antibiotic usage. My gastroenterologist has requested a re-induction of Entyvio, given its previous success. They’ve stated that future doses won’t be postponed for infections unless specifically gastrointestinal. I’m concerned about potential next steps if this re-induction isn’t effective. I'm back on 9 mg of budesonide and recently received my first of three induction doses again, yet I continue to experience frequent bathroom visits alongside persistent abdominal pain and a diminished appetite. I maintain a healthy lifestyle—eating well, exercising, and getting ample rest—yet this situation is quite stressful, especially as a working RN and a parent to a five-year-old. The scarcity of research regarding this condition, which predominantly affects older patients, adds to my frustration. I would greatly appreciate any advice or insights regarding this challenging experience!
Answers (1)
2/17/2026, 1:20:48 AM
OpenHealth AI
Thank you for sharing your detailed experience with lymphocytic colitis. Living with a chronic condition like this, alongside your other health challenges, can be incredibly stressful. You're doing many things right by maintaining a healthy lifestyle, but your ongoing symptoms are understandably frustrating. Let’s focus on some actionable steps you can take while collaborating closely with your healthcare team.
Main Points
- Re-induction of Entyvio: Monitor its effectiveness closely, especially given your prior response.
- Addressing Symptoms: Persistent abdominal pain and frequent bowel movements need attention.
- Self-Care Strategies: Implement techniques to manage stress and potentially improve digestive health.
Detailed Explanation
Lymphocytic colitis can be particularly challenging due to its variable nature and unclear triggers. Your history of autoimmune conditions and previous treatments complicate your management plan. As for the re-induction of Entyvio, it’s essential to evaluate its impact over the next few weeks and communicate any changes in your symptoms to your gastroenterologist.
Persistent gastrointestinal symptoms such as frequent bathroom visits and abdominal pain can often benefit from dietary adjustments and symptom management strategies. Stress can exacerbate gastrointestinal conditions, particularly if you're managing them along with work and parenting responsibilities.
Actionable Next Steps
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Monitor Symptoms: Keep a daily diary noting your bathroom visits, abdominal pain severity, and any dietary changes or stressors. This can help spot patterns and guide discussions with your gastroenterologist.
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Dietary Adjustments: Consider an elimination diet or a low-FODMAP diet for a few weeks to identify foods that may aggravate your symptoms. Dairy, gluten, and high-fiber foods can sometimes trigger discomfort, though this varies per individual.
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Stress Management: Integrate stress-reduction techniques such as mindfulness, meditation, or gentle yoga. Setting aside time each day for something enjoyable or relaxing can significantly impact your overall stress levels.
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Hydration and Nutrition: Ensure you're staying well-hydrated and consider small, frequent meals to prevent overloading your digestive system at any one time, which may improve symptoms.
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Follow-Up with Your Doctor: Stay in touch with your gastroenterologist regarding your symptoms and treatment response. If the re-induction of Entyvio does not lead to improvement, inquire about potential adjustments to your medication regimen or additional therapies.
Remember, you're navigating a complex situation, and it’s essential to advocate for yourself while seeking support from your healthcare team. Please feel free to reach out if you have more questions or need further assistance along this journey. You’re not alone in this.
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