Vent: Mistrust of Doctors (and myself)

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Elvish2
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Vent: Mistrust of Doctors (and myself)

Postby Elvish2 » Tue Apr 07, 2020 4:13 pm

As many of us are aware, the process of c-diff recovery is a mental one as well as physical. I'm actually doing all right overall lately, but I still have these feelings of anger, frustration, and my mind casting around for someone to blame. And all the "if onlys"... If only my doctor hadn't prescribed Augmentin in January (after telling me it was low-risk for causing c-diff). If only I hadn't trusted her and agreed to take the antibiotic. If only I had done some more research first.

Now I'm over 2 months into dealing with the whole c-diff process (3 weeks post-Dificid) and sitting with the anxiety about potential relapse as well as experiencing some unpleasant side effects I've developed, like bladder spasms (which I've had to consult the doctor about, and may need to continue to do so). My life was so upended by the c-diff already that the pandemic (serious as I know it is) just felt like another drop in the bucket.

I know I have a lot of frustration to work through, and this certainly hasn't helped with my issues around trusting doctors that I developed my first go-around with c-diff! I hate the feeling that I have to constantly advocate for myself and do my own research, but I feel like if I don't, things like this happen.

Trying to focus on things to be grateful for, my improvements, and the things that have gone well this year... but sometimes I just feel the need to vent!
2011: contracted c-diff after taking Amoxicillin and Cipro. Successfully treated with Flagyl taper. (Posts under old username, Elvish)

2020: contracted c-diff after taking Augmentin. Finished Dificid taper/pulse on 3/15.

Ali-Mar
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Re: Vent: Mistrust of Doctors (and myself)

Postby Ali-Mar » Tue Apr 07, 2020 5:00 pm

Not too many doctors have experience with the C-Diff, I also felt I had to advocate for myself and did a lot or research and I am still doing it. I had to convince my dr to switch from Flagyl to Vanco on the 8th day. At that time I didn't know about Difcid otherwise would have asked for that instead... he didnt mention it either untilI I was halfway through the Vancomycine when he said if this didn't work will use Dificid, when answering my question.

My GI didn’t even prepare me for the PI-IBS and all the symptoms after completing the treatments. My GI didn't even warn me or mention anything about relapse or dehydration and the danger etc. When I showed my concerns he told “it is not cancer it is just an infection” :-)

This site ( the Cdiffdiscuss.org) has been great, my frist day off the vanco I thought I had a relapse because my GI made me believe after few days on Vanco I will be myself again if working. For the frist time I heard of PI-IBS on this site, after posting about my symptoms my concerns of relapses. I am 18 days post ( would be 3 weeks on Friday) Vanco, and keeping my fingers crossed. It is helpful reading all these success sorry, also knowing that there is FMT as the last option which seem to be very successful . My GI has done 6 FMT and only 4 has been successful , that is whey I am changing my GI ... because I read that FMT using Colonoscopy combined with the Upper GI tract has close to 100% s success rate see the following doc from UCSD https://health.ucsd.edu/medinfo/nursing ... ion%20.pdf
Last edited by Ali-Mar on Fri Apr 10, 2020 10:27 am, edited 1 time in total.
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

BetsyS
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Re: Vent: Mistrust of Doctors (and myself)

Postby BetsyS » Fri Apr 10, 2020 9:21 am

I caught C Diff last Nov. while in the hospital for a hemi-colectomy for Appendix cancer. Both are a life sentence, but in my opinion C Diff is worse. I had a good outcome for the cancer surgery, but given the nature of the tumor I will need to be monitored the rest of my life. I can easily live with that. As to C Diff, I had 2 relapses and have had a slow recovery. I'm 2-1/2 mos. post a Vanco taper. I've lost 50 lbs, and am still struggling with food. I just had my first week with four days of normal BMs., but I've learned to celebrate each small victory. I am high risk for recurrence, and my ID Dr tells me I will need to avoid antibiotics the rest of my life, or go on Vanco/ Deficid when I do have to take them. I am not thrilled with the prospects.

Your doctor makes all the difference. Fortunately I've been blessed with good physicians for both the cancer and C Diff. Between this site and their advice I know 1). Every recovery is different; what I am experiencing is not abnormal or a recurrence; and 2) I'll eventually get through this and back to some semblance of a normal life; it just takes patience. I am looking forward to the day I can eat a salad and drink a Starbucks coffee again!

Ali-Mar
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Re: Vent: Mistrust of Doctors (and myself)

Postby Ali-Mar » Fri Apr 10, 2020 10:56 am

Betsy, based on the CDC website: https://www.cdc.gov/cdiff/after.html, “ One in 6 people who’ve had C. diff will get infected again in the subsequent 2-8 weeks”

you passed the 8 weeks relapse window, you should be fine as far as the relapse.

How long after the treatment you had the other two relapses?

I am 20 days post Vanco, counting the days to 8 weeks and keeping my fingers crossed
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

BetsyS
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Posts: 107
Joined: Wed Jan 08, 2020 10:33 pm

Re: Vent: Mistrust of Doctors (and myself)

Postby BetsyS » Fri Apr 10, 2020 11:23 am

Less than a week both times. My Dr. called them relapses, but I was not that sure I was over the original infection. I had 4 rounds of Vanco in all. I am not worried about a relapse at this point. I am on PODs for GERD which is one of the factors that increases my risk for recurrence. My ID would like to see me off of them. I'm trying to get a referral to my GI, but all non-essential appointments were canceled because of COVID

Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Vent: Mistrust of Doctors (and myself)

Postby Ali-Mar » Fri Apr 10, 2020 11:40 am

Yes, I read that acid suppressant could cause C-Diff infection and relapses. I used to take over the counter Prilosec as needed, only few times per month . But my GI told me to stop taking it. I do Video and Telephone appoint with my doctors now, it is not the same but much easier and safer. I had a video appointment with my GI yesterday
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020


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