Need some encouragement

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 my health?
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 prescriptions, 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.

My doctor hasn’t said chronic pouchitis. I’m just jumping to the worst-case scenario. The first course of ciprofloxacin helped, then things got worse. The second course helped a lot, then after a brief break he refilled it, and I made it to normal by the end of that course. Things went downhill quickly after finishing that last course, so I started to despair.
I don’t know if he has a lot of experience treating pouchitis. I could ask at my next appointment, if I decide to go. I’m still so angry at their lack of response. I went to my primary care doctor today to ask for help getting a c diff test, since I’ve been waiting over a week for my GI doctor to respond to my request. Within two hours, my primary care doctor got me lab orders, and I submitted a sample. I’m anxious to see what that finds.
I keep feeling like I have to be nice and easy for the doctor and nurse to deal with, like if I ask too many questions they’ll label me as a bad patient. Maybe they’re unresponsive because they’re so busy, but I keep feeling like it’s because I wanted too much information. I wonder if this is something other women have had to confront .... it feels like it might have roots in gender perceptions.

Hi Kanva. I can't imagine the absence of good medical care being persuaded by gender. I'm a 78 year old guy and I expect to be treated differently from a teenaged boy. My needs are different now. In your case, age, gender and your behavior can in no way justify poor care. You deserve answers to your questions and you deserve relief from your discomfort. You might ask your primary to help you get the care you need from the "Experts".
Respectfully,
Michael A

Hi I'm sorry you're dealing with this. I hope you find a solution.

I think it's a smart decision Kanva. You will get better results elsewhere. How are you feeling?

I’m feeling pretty good. The bidet is helping with skin issues. I still have a lot of burning and urgency and am going to the bathroom more than when I was on antibiotics, but nowhere near as bad as a full UC flare. My appointment at the Mayo Clinic is next week, and I’m looking forward to it ... as much as you can look forward to a scope!
I didn’t go to my last appointment with the bad GI, and their office didn’t do a thing. No reminder to reschedule, no phone call, nada.

My appointment at the Mayo was yesterday, and it went well. It was such a relief to be treated like an intelligent, reasonable person who has legitimate questions! I definitely made the right choice to come back.
The scope looked much better than I had feared it would: no pouchitis, moderate cuffitis. My doctor said if antibiotics had improved my quality of life, it made sense to continue treatment with them and stop the canasa, which I don’t think is helping a lot. He helped me map out a treatment plan with different antibiotics, possible alternatives, and thorough explanations. And, because he actually performed a physical exam, he diagnosed a yeast infection that he says is probably causing a lot of my discomfort, so I’ll get medicine for that too.
He also said that a lot of clinics are shifting to a model where GI doctors spend all their time doing scopes, so they don’t have any time to actually talk to clients and farm out communication to their nurses. Certainly fits with what I faced with my last GI.

Valli1234: I’m feeling pretty good. I’m alternating two weeks on ciprofloxacin, two weeks on vancomycin. When I’m on the ciprofloxacin, I feel amazing ... 4-5 stools a day, no burning or bleeding. I go a little downhill on the vancomycin .... more like 6-9 stools a day, and the burning and bleeding gradually return over the two weeks. This is only my second time through the cycle, though, so I’m still adjusting. My Mayo doctor said there’s another antibiotic we could try if the vancomycin doesn’t seem to help, so I may pursue that option in a few months. Luckily, I’m not feeling any side effects from the antibiotics, which is a relief.

Hi Kanva. I know this is an old post but I wondered how you are doing now. I read through your other surgery posts as well. Also, I wanted to let you know I've dealt with the exact same kinds of crap from local GI offices where I live and I have the exact same types of worries and thoughts as you regarding that! It's definitely not you or anything you're doing wrong!