Follow up from Doctor

Veteran support board users and new posters - use this forum to talk about whatever you want. Topics may be C. diff. related but are not required to be. Post here about posters' birthdays, holiday greetings, vacation plans, etc. If it doesn't fit in another forum, put it here.
Cheese
New User
Posts: 5
Joined: Wed Jul 18, 2018 12:55 pm

Follow up from Doctor

Postby Cheese » Wed Jul 18, 2018 1:30 pm

Are there any tips or tricks for getting follow-up care? I'm having what seems like an extraordinarily difficult time addressing questions and concerns and even with an ED physician documenting that I needed to be seen again within documentation available to the practice and advocating for myself, the best I could do was to get the physician on the phone. There is no plan in place for follow-up care or timing of any such care despite my husband and I both insisting.

I was recently diagnosed via PCR by a gastroenterologist after the biopsies from my small intestine had shown inflammation (colon biopsies were normal). I had a really difficult time on flagyl, which was called in since the positive result occurred over the weekend, my insurance required prior auth for vanco, and I felt funny about waiting days to start treatment. I called and spoke with the nurse Monday about abdominal pain and how I'd been getting worse over the weekend even prior to starting the medication. I spoke with the on-call physician that evening since the abdominal pain had worsened and was concentrated under my rib cage on the right side. I confirmed with him the medication because from my reading of journal articles and guidelines, I strongly suspected the dosage I'd been given was half of what it should be. The answer was to double the dose (they'd call in a new prescription to fix it), and I should either go to the ED or try to follow-up with their practice in the am. I ended up going to the ED to ensure there was nothing urgent, because I also had concerns about whether the care I was receiving was adequate at this point. The ED physician coached me in following up with the office manager of the practice to try to get them to help me since I've been unwell for at least a month and lost a considerable amount of weight already. I left a voicemail for the office manager and given the instructions on the voicemail called back and asked the nurse to paged to try to follow-up since it was urgent. They refused and I was sent to the physician's nurse's voicemail. He called back shortly after and wasn't much help. The pain was due to the c diff in his opinion and I should try to stick it out for 3-5 more days on the flagyl. I was offered nothing to manage it and wasn't able to set up a plan to follow-up. My husband called the nurse back that afternoon because I was still barely drinking anything (10 oz in almost 24 hours) and had stopped eating since it was worsening the pain, which I was managing at this point by crying often. The nurse said they weren't too worried about me not eating and to try to stick it out on the flagyl longer before switching. She said this even after my husband told her that our regular pharmacist knew the vanco script could be filled for 7 days at a time without an auth. It was clear to us that I was going to end up back in the ED within a day if we didn't make the switch. I feel like a different person today. The abdominal pain, aches, joint pain, nausea, and appetite are much improved. I'm drinking comfortably and eating some bland food. I get the sense that because I'm fairly young (30) and not too medically fragile otherwise that this practice believes I should just take the pills and go away. I'd figured out from my first visit which took 5 phone calls and 7 business days to schedule that they were procedure driven and was seen at another practice recommended by my PCP last week. The physician was nice and seemed happy to help. I followed up with the new physician's nurse Monday morning via her vociemail with results from the original office, again Tuesday mid-day because I wasn't struggling with the meds and pain and needed help. As of today (Wednesday afternoon), the nurse of the new physician hasn't called me back. Yesterday, I had tried to schedule a follow-up with the new physician and it would be 4 weeks out. I got a new patient appointment in much less than half this time.

I'm feeling like because of this diagnosis the only place I can receive actual care when I need it is in the ED. Does anyone else feel this way? Is there anything that works? I'll be seeking care at a new practice in the future if I need it, but I'm finding it pretty distressing.

Kuro
Contributor
Posts: 87
Joined: Thu Mar 29, 2018 5:12 pm

Re: Follow up from Doctor

Postby Kuro » Wed Jul 18, 2018 5:55 pm

Honestly, there shouldn't be any tips or tricks necessary for this one. The physician should be caring for you properly, end of story. If the new one seems to be following in the first doctor's footsteps, then I'd seek out another choice yet again. It would be even better if you could get a good GI or ID, maybe at a hospital clinic?

That said, it's a very good thing that you turned a corner and you're feeling better. You often won't have a good appetite when just out of CDIFF, but it's important to eat (try a bland diet like BRAT at first) and very important to drink enough fluids.

Treatment will probably consist of a lot of waiting unless anything goes wrong, as unfortunately, recovery from this infection is all about waiting for the healing to happen. You finish your antibiotics and then the actual recovery starts.

I'd push to be seen if you feel that you need to be. At the very least, use their cancellations list. Your age is no reason for you to be overlooked. I had only just turned 33 when I was diagnosed and I have been given very responsive care. Maybe someone new can get you off the Flagyl (which is an outdated treatment) and onto Vancomycin if you need it, but if you continue to do well after Flagyl, that's a great thing. 80% are cured in 1-2 doses of antibiotics.

roy
Long Time Contributor
Posts: 3118
Joined: Sat Aug 02, 2014 1:05 am

Re: Follow up from Doctor

Postby roy » Wed Jul 18, 2018 6:31 pm

I dont know what you mean by "follow up care"
Typically a person is diagnosed with c.diff because frequent watery D indicates a stool test is needed to confirm a Drs suspected diagnosis.
Treatment is given (flagyl is not recommended) and in most cases no further visits to a Dr are needed so that's the end of any contact with health care.
IF symptoms return after finishing the medication (and the majority do not) the patient goes back for more advice and treatment.
Theres no automatic follow up Dr visits and no tests to see if it's gone.

beth22
Long Time Contributor
Posts: 9331
Joined: Tue Apr 07, 2009 2:23 pm

Re: Follow up from Doctor

Postby beth22 » Wed Jul 18, 2018 6:59 pm

7 days is a short course for sure. If your insurance gives authorization for 7 days at a time, try and get one more course. Talk to your doctor if you should take 3 full days and taper the rest or see how they want you to do it. Hopefully, the vanco will do the trick for you and rid you of the infection. Were you diagnosed from biopsies or from a stool sample?

Cheese
New User
Posts: 5
Joined: Wed Jul 18, 2018 12:55 pm

Re: Follow up from Doctor

Postby Cheese » Wed Jul 18, 2018 7:21 pm

Thank you all for replying. This forum has been tremendously helpful.

I was diagnosed via stool sample (PCR testing). The inflammation in the small intestine led the pathologist to determine my issue was likely caused by an infection and/or partially treated celiac disease.

I am feeling better since I switched off the flagyl and onto the vanco. The reason for following up was the abdominal pain per the ED physician's recommendation. I had also been in touch with the nurse because of what I perceived could be and what she also felt were likely side effects from flagyl. It didn't seem to matter that I didn't think I could tolerate them. The gastroenterologist also didn't feel that I needed to be seen despite the ED physician's recommendation, so unfortunately a visit really didn't seem to be an option. They were insisting that I keep taking the flagyl for 3-5 more days, but I'm so glad I made the switch anyway.

There is an ID clinic here and I'll keep them in mind for the future. It's helpful to know that my experience isn't entirely normal. Prescribing the wrong dosage for something like c diff initially was a red flag. I even had to explain to the nurse that flagyl wasn't considered first line anymore per the on-call gastro who the lab had contacted. I'd only started it because I didn't want to wait several days to start treatment at all and we had been told prior auth was needed for vanco originally. Unfortunately, I too had problems tolerating it and luckily, we found out on Tuesday from my regular pharmacist we could fill 7 days at a time (and do this twice) to get the full 14 days needed so that it would be covered by my insurance even without the prior auth. It's crazy how complicated and fractured the system is, but I am grateful that all the other physicians were honest that 250mg x 3 for flagyl was not the standard adult dose and for the pharmacist who knew how to get the vanco paid for. I'm new to this, but I'm hoping that asking about filling it this way could help someone else get vancomycin if they need it someday.

roy
Long Time Contributor
Posts: 3118
Joined: Sat Aug 02, 2014 1:05 am

Re: Follow up from Doctor

Postby roy » Wed Jul 18, 2018 8:22 pm

You said "partially treated celiac disease" so I assume you have a confirmed diagnosis of celiac.
That's a lifelong condition and not something that's treated and cured, its only controlled.
Pain is a typical symptom of celiac.
You dont mention having frequent watery D though.
PCR is a very sensitive test that often results in positive results that might not need treating, most labs now follow up with a toxin test to confirm the PCR has detected toxicagenic c.diff and not one of the harmless strains.
All test results have to be looked at alongside symptoms to make a diagnosis.
You will read cases here where someone says they have c.diff without D, no expert would agree with that and safeguards are in place to prevent that diagnosis being made but inexperienced Drs still consider a positive test thats undertaken wrongly is a reason to treat.
If its confirmed that your a celiac dont ignore that diagnosis just because of a positive PCR test, it might just be coincidental.

Insurance rules are mad!
2 x 7 day courses of vanco are probably a lot more expensive than 1 x 14 day course.
If you have a high copay you might consider liquid vanco that's made from IV powder and pay for it yourself
Full cost for 14 days is around $100 and it's the same med.

NanciT
Long Time Contributor
Posts: 2348
Joined: Thu Sep 18, 2014 12:01 pm

Re: Follow up from Doctor

Postby NanciT » Wed Jul 18, 2018 8:43 pm

Sorry your GI is NOT getting you in to follow up from an ED visit. At discharge all patients are told to follow up with their doctor within 2-3 days.
The PA or NP of the practice should know that and they should have seen you.
The point is the patients care is reviewed with their doctor and they don't end up back in the ED.

I would really consider another GI, hopefully you will start feeling better but just for the future.

NanciT

Cheese
New User
Posts: 5
Joined: Wed Jul 18, 2018 12:55 pm

Re: Follow up from Doctor

Postby Cheese » Thu Jul 19, 2018 9:53 am

So, the biopsy results indicated that the inflammation in my small intestine was related to partially treated celiac disease or an infection. I have had weight loss, nausea, D, etc. that would fit c diff, so the culture and celiac panel were ordered. I've been on a gluten free diet for years. I spent a month in Africa and felt fantastic and gained almost 10 pounds. I realized afterwards I'd been gluten free and my grandfather had a wheat allergy, so I cut gluten out then. I'd asked about celiac disease before and no one had wanted to do testing prior. It's been more than a week since the biopsies and I had a lot of black areas this morning, but at least not D! I can see the results of the IGA for Celiac as 182 mg/dL (normal range 61-356), so it was negative, but it also says "patients who are already adhering to a gluten-free diet may be seronegative. If celiac disease is highly clinically suspected, consider HLA-DQ typing." I'm hoping I can get this test. I did find gluten has slipped into my diet, but this seems rather high considering the very small quantities I found. It seems like I do have c diff and am responding to the medication, but it does seem pretty unusual to have the biopsy results show the significant intraepitheleal lymphocytes only in the small intestine with normal results for colon biopsy if c diff is the only thing going on.

I'm going to call the gastro's nurse to report that I had some bleeding again, but I doubt they'll give me much guidance about when to go to the ED or how many times is too many. Are there any generic recommendations? I know this site isn't for medical advice. I just wasn't sure if there were any guidelines about this stuff like there are about dosages for treatment. Thanks in advance.

NanciT
Long Time Contributor
Posts: 2348
Joined: Thu Sep 18, 2014 12:01 pm

Re: Follow up from Doctor

Postby NanciT » Thu Jul 19, 2018 10:16 am

Did your GI review the biopsy results with you? They really should, unfortunately as technology has entered medicine if they are released to you maybe you read them online?

They should always be reviewed with the patient, you can then ask about additional testing and also about your current symptoms and any next steps if necessary.

I would ask for a review of pathology report with the GI

NanciT

Cheese
New User
Posts: 5
Joined: Wed Jul 18, 2018 12:55 pm

Re: Follow up from Doctor

Postby Cheese » Thu Jul 19, 2018 11:09 am

I haven't seen the biopsy results. The nurse called last week to review those, but that was what was shared and what led to the celiac labs and stool tests. They haven't reviewed the celiac results with me, but they were automatically released through a portal. That's a good idea. I'll see if I can schedule an appointment even if it's a ways out to discuss. I've only been able to speak to the physician on the phone when I escalated and left a message for the office manager as the ED physican suggested. The ED physician was pretty optimistic that they might actually follow-up with me after the prescribing mistake occured. The doctor's nurse seems really well intentioned, but it seems like communication and staffing could be out of whack at this practice.

NanciT
Long Time Contributor
Posts: 2348
Joined: Thu Sep 18, 2014 12:01 pm

Re: Follow up from Doctor

Postby NanciT » Thu Jul 19, 2018 10:51 pm

It get's down to the physician. The nurse is following his orders to review the results....which is not the way it should be.

Is it possible to find a new GI? Especially if you have other issues that have come up. Maybe it's time to gather your records and find someone new, if you do that I would let them know why.
It sounds like you have done all you can to advocate for yourself and get your results, the fact they would not give you an appt RIGHT AWAY following an ED visit....ridiculous. All patients deserve quality care and sadly there are physicians out there that get so busy they forget medicine is about Patient Care

I hope you get this resolved soon

Take Care
NanciT

Cheese
New User
Posts: 5
Joined: Wed Jul 18, 2018 12:55 pm

Re: Follow up from Doctor

Postby Cheese » Tue Jul 31, 2018 12:46 pm

Thank you all for helping me to navigate through all this. I wanted to post an update in case someone else was in a similar situation in the future. I had a positive c diff test via PCR, but the symptoms didn't exactly fit and several outpatient and ED physicians quickly dismissed this despite me continuing to worsen. I just got discharged from the hospital yesterday after a 3 day stay. I had severe abdominal pain and was no longer tolerating eating or drinking to any extent. My PCP had also confirmed the presence of blood in my stool. Inpatient, 4 physicians including 2 gastroenterologists were in agreement that we were missing something and had to go back to square 1. They concluded based on the timing of my endoscopy and colonoscopy, labs, biopsy results, etc. that I likely never had c diff and was simply a carrier. Vanco was stopped and they discovered that I do have gastroparesis. I've been a lot better since they started treating the gastroparesis. I'm eating and drinking again and no longer need anything for pain (I was on strong opioids like morphine for pain prior to diagnosis and treatment).

I've been referred to an academic medical center to determine what is causing the inflammation in my small intestine and some other findings. I wanted to share my story, because if I hadn't educated myself through journal articles and spent time on forums like this one, I wouldn't have known that I needed to advocate for myself strongly. During my most recent trip to the ED, we had to push the ED physician who wanted to send me home yet again, and defend our rationale to get an admitting physician called. The second that admitting physician walked in the room was a turning point for me. She was completely in agreement not only that we were missing something, but also that I needed to be admitted. To be clear, I'm not advocating making any decisions about your care into your own hands, but if something doesn't seem right don't be afraid to stand your ground, push for answers, get a second opinion, or if it gets desperate like it did in my case and you're not even able to eat or drink anymore, ask for your case to be reviewed by an admitting physician or by another physician. They may try to turn you away in the ED initially, even if you do need an inpatient stay, so ask the questions, educate yourself, and advocate. Thank you all for helping me find the courage to do it and to get better.

beth22
Long Time Contributor
Posts: 9331
Joined: Tue Apr 07, 2009 2:23 pm

Re: Follow up from Doctor

Postby beth22 » Tue Jul 31, 2018 11:44 pm

I'm so glad that you finally got someone to look into this for you and that you are feeling better. I do recall a poster a few years back who had gastroparesis as well as c difficile. She eventally got better and got everything under control. I wish you the same.


Return to “Free Form Discussion”



Who is online

Users browsing this forum: No registered users and 1 guest