Navigating the Challenges of Chronic Illness and Urology Care
I’m a 43-year-old female, standing at 5'3" and weighing 140 pounds. I've been living with Crohn's Disease for over three years, currently enjoying remission, alongside managing ADHD. The treatment for my Crohn's has left me immunocompromised, as I’m on Remicade and azathioprine. I drink moderately, about three to five times a week, and I don’t use recreational drugs. Please understand this is a burner account, and my intention is to seek advice because I’m feeling quite overwhelmed and anxious about my current situation. Back in mid-June, I mistakenly held my urine for an extended period, likely stretching my bladder too far. The following day, I began experiencing symptoms indicative of a urinary tract infection (UTI), which quickly escalated to painful bloating. A visit to the emergency room revealed I was retaining over 1.5 liters of urine and confirmed I had a UTI. Though I could pass small amounts of urine during that time, I never fully emptied my bladder. A CT scan ruled out any obstructions. I was sent home with a Foley catheter and a three-day course of antibiotics. After consulting a urologist, I had to keep the catheter for an extended duration of 12 days until I could undergo a voiding trial. It was confirmed that the antibiotics I had taken should have resolved the infection; however, my bladder required healing. Throughout this ordeal, I was in considerable discomfort — the urologist attributed it to catheter irritation, but I suspect the infection was still present due to the insufficient treatment. When the catheter was eventually removed, I performed well on the voiding trial, but soon thereafter I noticed a resurgence of burning sensations and bladder pain. I was initially informed to expect some burning for up to 48 hours post-removal, so I waited patiently. However, by the third day, I found myself increasingly anxious that the UTI symptoms lingered. When I contacted the urologist’s office, a urine test confirmed my fears. They prescribed another five days of Macrobid, but as my symptoms worsened, I found myself completely unable to urinate within 48 hours. It felt as if my urethra was blocked. I returned to the emergency room on a Sunday and had to undergo catheterization again. The medical staff noted significant swelling in my urethra which complicated the procedure. The ER doctor diagnosed me with a complex UTI and prescribed a ten-day course of cefdinir. He assured me the urologist would reach out on Monday to schedule catheter removal later that week and advised me to continue antibiotics for three days following the removal to prevent a resurgence of the infection. Due to these complications, I was compelled to postpone my Remicade infusion by 12 days. While I was reluctant to reschedule — as consistent treatment has kept my Crohn's in remission — I understood the importance of addressing the infection. Disappointingly, the promised call from the urologist on Monday never came. That Tuesday, when I followed up, the nurse informed me that the urologist was deliberating how best to proceed with my care, and I would have to wait to hear back. The next day, a urology nurse communicated that I would need to keep the catheter in for at least 14 days, with a void trial to be scheduled afterward. I expressed my concern that waiting so long, especially since I would be undergoing an immunosuppressive infusion right before catheter removal, could put me at risk for infection with such significant breaks in antibiotic coverage. They responded with a recommendation to simply extend my antibiotic regimen by a few days to 17 days total but would still only prescribe a single dose post-catheter removal. To make matters worse, I’ve now developed the first yeast infection I’ve had since my teenage years, likely a side effect of the extensive antibiotic use. The urologist suggested over-the-counter treatment, which I have started. However, I’m now experiencing renewed discomfort in my bladder, which raises concerns about the potential for a yeast-induced UTI on top of everything else. Although I felt some improvement with the cefdinir, this new pain, which coincided with the yeast infection, feels ominous. I’m utterly fatigued by this cycle of catheters, infections, and treatment adjustments. Despite my attempts to communicate my health concerns about prolonged catheterization and its impact on my weakened immune system — shared with several urology nurses and in messages to my urologist — I feel my pleas are falling on deaf ears. Am I asking too much? Is there a specific request I can make to mitigate the risk of further infections at the time of catheter removal, so I don’t have to defer my Remicade treatment? I would sincerely appreciate any advice you might have.
Answers (1)
7/11/2025, 10:10:55 PM
OpenHealth AI
It's understandable to feel overwhelmed by your situation, especially dealing with Crohn's Disease and the complications from your recent urological issues. You are navigating a challenging path, and it's clear you're seeking effective ways to manage your health while ensuring that your Crohn's remains in remission.
Here’s a breakdown of what’s currently happening and some steps you can take to help mitigate your concerns:
Summary of Your Situation
- Recent Urological Complications: You've experienced recurrent UTIs, catheterization, and troubling symptoms related to both the infection and irritation.
- Antibiotic Use: Extensive use of antibiotics has contributed to a yeast infection and increased discomfort in your bladder.
- Immunocompromised State: Your treatment for Crohn's places you at higher risk for infections, heightening your anxiety around managing these recent health issues.
Explanation of Concerns
It’s common to feel fatigued and frustrated when health issues seem to compound. The use of catheters can irritate the urinary tract, and with an immunocompromised condition, the risk of infections increases. Anticipating your Remicade infusion is important, as maintaining Crohn's remission is a priority, but this adds complexity to your current situation.
Actionable Steps
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Follow Up on Antibiotic Treatment: Since the urologist has suggested extending your antibiotic regimen, make sure to clarify how many additional days you will be taking the medication. Ensure that the total duration covers your treatment appropriately to prevent the resurgence of infection.
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Request a Comprehensive Plan: In your next communication with the urologist or their office, you might consider requesting a detailed plan addressing:
- The potential for further urinary tract and yeast infections.
- A specific timeline and protocol for catheter removal and voiding trials, considering your immunocompromised status.
- Confirmation of antibiotic coverage throughout the treatment process.
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Discuss Pre-Removal Protocols: Advocate for a follow-up urine test a few days before catheter removal to confirm that the infection is adequately treated. You might ask for a prophylactic antibiotic (typically a single dose) to take after the catheter is removed as a further preventive measure.
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Manage Yeast Infection Symptomatically: Continue with the over-the-counter treatment for your yeast infection, and consider discussing options with a healthcare provider about potentially using probiotics or antifungal medications if symptoms persist.
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Monitor Symptoms Closely: Keep a record of your symptoms, particularly any burning sensations or urinary issues, and communicate these effectively to your healthcare providers. This documentation can help in making informed decisions quickly.
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Emotional Support: Given that this journey has been taxing, consider reaching out for emotional support through friends, family, or even support groups for Crohn's Disease and chronic health issues. Sharing your experience can help lessen the burden.
Make sure to express your worries clearly to your medical team; they should understand the urgency given your situation. You're not asking too much—advocating for your health is essential, and it’s vital that your concerns are acknowledged.
Feel free to reach out if you have further questions or need more guidance. Your health and well-being are paramount, and you're doing well to seek the help you need!
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