I could really use some encouragement. I having issues with my doctor and some health roadbumps, and I could use reassurance that I’m not pushy or imagining things or expecting too much. This is going to be a long post, but I hope some of you will wade through it and give me some support/tell me if I’m crazy. You also could skip all the background and jump to my ask at the bottom.
And I know I’m technically not an ostomate anymore. I know about
and use jpouch.org, but I’m posting here now because of all the support I’ve found from folks here over the years.
It’s been almost a year since my takedown surgery, and overall life is a zillion times better than it was with my colon. I feel like I got my life back, and it’s been amazing. But ... I started seeing blood with my bms in January and having discomfort/urgency. I didn’t want to deal with it, because I wanted to be healthy. I did go to my local GI specialist, who I had only seen once, right after my first surgery at the Mayo Clinic. He gave me ciprofloxacin to try and scheduled me for a scope. Had a scope, diagnosed with mild pouchitis and severe cuffitis. Was given canasa suppositories. He sent me the biopsy reports that showed pouchitis, but he didn’t recommend further antibiotics, and he said the diagnosis was cuffitis.
We had a series of exchanges over the patient portal with me updating on symptoms, asking about
probiotics and antibiotic treatment options, and trying to clarify my results/diagnosis. Basically, he forgot the biopsy results had showed pouchitis, told me it was cuffitis, and said VSL wouldn’t help with cuffitis. When I pointed out the biopsy results, he said, yes, he had misremembered and I did show both cuffitis and pouchitis. But he didn’t mention anything about
antibiotics. I wrote back again and asked if he wanted to refill antibiotics given the pouchitis diagnosis and asking about
his protocol for antibiotic treatment ... alternating antibiotics, avoiding antibiotic resistance, etc. At that point, his nurse responded, just saying she had called in a ciprofloxacin refill.
On the ciprofloxacin, things improved a lot. I hadn’t felt like I was having a lot of bms before, but once on the ciprofloxacin, I realized I was so much more comfortable than I knew I could be. I didn’t have any idea what the new normal was with a j-pouch, and so I thought if I didn’t feel as bad as I did at my UC worst, I had no right to complain.
I messaged the nurse with an update that the ciprofloxacin was helping and asking how I would know if the pouchitis was completely resolved, whether I was at risk for antibiotic resistance, and what his long-term recommendations were for antibiotic management of pouchitis. The response was “the doctor told me to call in a 2-week course of ciprofloxacin and for you to continue the canasa.” No answers or information about
any of my questions. I wrote back the next day and asked if VSL#3 was something I should try ... I did NOT point out that they had completely ignored my questions. The nurse responded that she had routed my messages to the doctor but to keep in mind that I would be seeing him in 6 weeks, so “let’s wait and see what he recommends.”
I found that really dismissive and frustrating. I took the next course of ciprofloxacin and let my annoyance stew.
As soon as I finished the ciprofloxacin, things got worse again. Like, within a day, my frequency and urgency started to increase and my bleeding started to return. I started to see changes in my stool that reminded me of when I had c diff. a couple of years ago, so after waiting about
a week, I messaged my doctor again and asked if I could be tested for c diff., given my history and recent antibiotic use. The nurse replied that she would route the message to the doctor, that “let’s wait and see what his recommendations are,” and “we will be in touch.” Then, no response for a week.
This is really weighing on me. I’m mad, I feel pushed aside, and I’m worried about
my health. I can’t sleep, because I keep stewing about
it. I finally wrote a snotty message in the middle of the night last night saying that I know I’m not as sick as I was with the worst of UC, but that’s not an acceptable standard for me. I said I didn’t see the function of waiting two weeks, having another scope that would show inflammation, and then trying to have a groggy conversation with the doctor. I said want to manage my care proactively and understand what my treatment options are, and I want to be checked for c diff. I asked whether there was a better way to communicate with my doctor and said I’d be willing to schedule an in-person appointment if that’s what it take to have a conversation. The nurse responded that she had forwarded the message to the doctor, and that actually I was wrong about
my appointment ... it’s not a scope, it’s an office visit. Still no lab orders for c diff.
So here’s what I want to know from you all: am I asking for too much? Should I just be content to wait for weeks before addressing something that’s less than ideal about
Here are the things this situation is making me feel: my discomfort isn’t important, I’m a complainer, I’ve annoyed my doctor and must be too pushy, I shouldn’t ask so many questions. I should be patient and deal with the discomfort, especially since it’s only a fraction of the discomfort I lived through for the past few years.
I left my last local GI specialist for the Mayo Clinic because of similar issues ... I felt like my worries weren’t being heard or valued, and I felt like I wasn’t getting timely responses to my questions. That time, I waited for answers and suffered until I collapsed on the street and had to be helped by EMTs, so I feel like waiting for answers isn’t going to work.
This doctor has been great about
answering all my questions in person during my appointments, but this string of communication has been terrible.
Am I expecting too much from doctors? What do I do?
I’d go back to the Mayo Clinic in a heartbeat, but they’re in another state. Even if I could get there for an appointment and initial treatment, I need a doctor in state who can help me get prescript
ions, lab work, diagnostics. My primary care doctor is great, but she has said it’s more than she’s comfortable managing.
I’ve been having trouble sleeping at night. I lay awake worrying about
whether I’m going to be ok, and about
how to make this better.