Seeking Guidance on Persistent Digestive Issues
At 18 years old, I experienced cystitis towards the end of December. My doctor prescribed an antibiotic called Nolicin for treatment. Shortly after, I had my menstrual cycle, followed by a troubling episode: two weeks later, I began suffering from a combination of bloody mucus diarrhea and solid stools that were also bloody. This was accompanied by severe abdominal pain, extreme fatigue, and frequent bathroom visits—over six times a day. Concerned, I consulted my general practitioner who referred me to a gastroenterologist, suspecting Crohn's disease. During my appointment, I was instructed to complete a colonoscopy prep for the next day, scheduled for January 8th, but no blood or stool tests were conducted beforehand. The colonoscopy itself was uneventful as no biopsies were taken and no anesthesia was administered. The gastroenterologist noted some minor hemorrhages, diagnosing me with proctocolitis but also indicated strange intestinal movement. He prescribed Salofalk, 500 mg three times daily, along with 200 mg of mebeverine hydrochloride, which failed to alleviate my pain. Ultimately, he dismissed the idea of Crohn's or ulcerative colitis, labeling my condition as irritable bowel syndrome without diarrhea. Following a calprotectin test on January 9th, my levels were at 165 and my CRP was 2.93, which fell within normal limits. Additional white blood cell counts and other tests were also normal. Despite initially weighing 52 kg, I lost 8 kg during this painful two-week interval. While Salofalk seemed to provide minor relief, it was not substantial. I returned to my doctor when the pain, fatigue, and bloody mucus returned. The gastroenterologist suggested adherence to the Salofalk regimen for a month, explaining that my symptoms could vary greatly by individual. Unconvinced by this, I sought a second opinion in early February. This doctor suggested a likely mild case of ulcerative colitis based on my response to Salofalk and my symptoms. He opted against repeating the colonoscopy too soon, instead suggesting future hospitalization. Tests were performed that ruled out bacterial or viral infections, including negative results for Clostridium Difficile and several other pathogens. The new treatment plan included Salofalk suppositories, Creon for enzyme support, and Papaverin to manage pain. This seemed to markedly improve my symptoms until I began to feel unwell as I approached the end of my suppository treatment. On March 10, I recorded my symptoms as follows: - 10.03: Rash and gas - 11.03: Seven bowel movements, stomach discomfort, severe nausea - 12.03: Six bowel movements, multiple tenesmus episodes, stomach cramps, a slight amount of mucus, more nausea - 13.03: Three bowel movements, persistent stomach pain, gas, fatigue, some mucus - 14.03 to 26.04: Continuing series of symptoms including pain, fatigue, mucus, blood presence, and weight loss, including a peak of five bowel movements in a day, accompanied by foul odor and persistent abdominal issues. I had a scheduled hospital admission on March 27, where blood and urine tests, an ultrasound, and another colonoscopy took place. The blood results showed my albumin was 51.0 g/L while my creatinine was at 132.0 mL/min, with all other readings normal and a CRP of less than 1.0. The ultrasound detected slight dilation in the sigmoid colon. However, after the colonoscopy, the examining physician stated that my intestines appeared completely normal. He claimed my symptoms were psychosomatic and suggested I consult with a psychologist or psychiatrist. Nine biopsies were taken during the procedure, and the preliminary findings indicated non-specific proctitis without evidence of ulcerative colitis, pending biopsy results for microscopic colitis. Upon discharge on March 29, I was advised to continue taking oral Salofalk as before. Conflicting information arose from the on-call doctors; one commented on the inflammation while another suggested it might signal a light form of inflammation, leaving me confused about my health status and the nature of my symptoms. I plan to follow up with another gastroenterologist shortly and await biopsy results. Overall, I feel lost in the healthcare system and am reaching out for any advice or insights from those who may have faced similar challenges. Thank you for your support, and I'm open to any help or opinions you might have.
Answers (1)
3/30/2025, 2:30:58 PM
OpenHealth AI
It sounds like you're facing a really challenging journey with your digestive health, and it's completely understandable to feel confused and frustrated, especially given the varying opinions and the symptoms you’ve experienced. Getting clarity on such complex issues can take time, but there are steps you can take to manage your situation while awaiting further medical guidance.
Summary:
Your symptoms have led to numerous tests and consultations, pointing to potential inflammatory bowel issues while also considering functional disorders like IBS. It's crucial to follow up on your recent biopsy results and continue managing your symptoms.
Explanation:
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Understanding Your Diagnosis: You’ve been diagnosed with proctocolitis and have been experiencing symptoms that some professionals have attributed to IBS or psychosomatic origins. It’s important to remember that chronic digestive issues can frequently have multiple contributing factors, including physiological and psychological components.
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Current Treatment: Salofalk has been partially effective, and the introduction of Creon and Papaverin suggests that your doctors are taking a comprehensive approach to manage inflammation and alleviate pain.
Next Steps:
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Continue Monitoring Your Symptoms: Keep a detailed diary of your symptoms, including the frequency of bowel movements, any blood or mucus present, diet, stress levels, and pain intensity. This can help provide a clearer picture and may assist your healthcare providers with ongoing evaluations.
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Follow Up on Biopsy Results: Once you receive the biopsy results, they can guide future treatment. Be persistent in seeking clarity around these findings and what they mean for your diagnosis.
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Consult Mental Health Professionals: Given the suggestion that some symptoms may be psychosomatic, it may be beneficial to consult a psychologist or therapist who specializes in chronic illness. They can help you cope with the emotional aspects of living with ongoing symptoms.
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Seek a Second Gastroenterology Opinion: It's great that you’re planning to see another gastroenterologist. Prepare for this appointment by sharing your symptom diary and asking detailed questions about your treatment options and the reasoning behind the suggestions you've received thus far.
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Nutrition & Support: Consider consulting a registered dietitian who specializes in gastrointestinal health. Dietary adjustments can often help manage symptoms, especially for conditions like IBS or inflammatory bowel diseases. Maintaining hydration and balanced nutrition is vital, especially if you've experienced weight loss.
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Patient Advocacy: Lastly, consider involving a patient advocate if navigating the healthcare system feels overwhelming. They can assist in facilitating communication among your healthcare providers and ensure your concerns are addressed appropriately.
Reassurance:
You are being proactive about your health, which is commendable. Chronic digestive issues often require patience and persistence, and it sounds like you’re taking the right steps to seek answers. If you need further clarification or support, feel free to reach out. You're not alone in this journey, and I truly hope for clarity and relief in your treatment ahead.
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