Living on pins and needles

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AnnieB
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Living on pins and needles

Postby AnnieB » Wed Feb 12, 2020 6:41 pm

Hi everyone,
I am fairly new to this forum. So glad I found it!

I am a 64 year old female. Was very healthy until last November when I developed diverticulitis. Doctor prescribed flagyl and cipro both. The cramping pains went away but shortly after that started severe D. Diagnosed with C. Diff, and given another round of flagyl. Seemed counterintuitive to take the thing that caused it, to try and cure it, but what did I know, I was just starting out on this journey.
Last January 27th got diverticulitis AGAIN! This time I was terrified of getting C. Diff again. Talked to my (new) doctor about how scared I was and she gave me augmenten (amoxicillin) saying it was lower risk for causing C. Diff. But sure enough, 2 weeks to the day of getting diverticulitis, the D started and it was extreme. Up all night, fever, running to the bathroom so much I thought I might be getting dehydrated. Husband took me to the ER in the morning and I got IV fluids. They tested me there and it was C. Diff.
I was given vancomycin to take 4 times a day for 14 days. I’m on day 7, feeling a little better but terrified of trying new foods. Still basically on a b.r.a.t. diet.

Also, based on reading this forum, I sent an email to my doctor with questions: Can I get a fecal transplant so this doesn’t keep happening? Can I see a GI doctor? Has she ever heard of tapering off the antibiotics? And what about Dificid instead of vancomycin?
She didn’t refer me to a GI doctor but she asked him about fecal transplant. His answer? We don’t do them for people who got C. Diff from taking antibiotics. Scuse me but isn’t that how the majority of people get it? About dificid, she said “It’s not in our formulary” Meaning their insurance doesn’t cover it? Both these answers tell me they are more interested in saving money than helping patients.
And then she forgot to answer the question about tapering. I will email her again, but I feel like she sees me as an annoying patient.
I have a friend who had a successful fecal transplant in a different hospital. Maybe I’ll have to go there and pay out of pocket?

Because I’m living on pins and needles, dreading getting diverticulitis again and having to take antibiotics and then around and I go again! Anxiety is so high!
Any and all help is SO appreciated. No one totally gets how this feels if they’ve never had it.

NanciT
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Re: Living on pins and needles

Postby NanciT » Wed Feb 12, 2020 11:27 pm

Hi

I would ask for a "Different" GI referral. Just let you med know with 2 bouts of diverticulitis and CDIFF you want to establish with a GI and certainly not the one she spoke with. You may want to ask around if you know any nurses or MD's. Depending on your insurance, you may need your primary referral.

Hopefully the Vanco will take care of this, it does for many. But I agree and would consult with a GI.

Generally FMT's are done with 3 fails, but it's complicated because you were treated with antibiotics for an illness twice.

If I were you I would find that GI especially with your recent history. Hang in there and continue with the Vanco. I also stuck with a very mild diet which helped me while on medications.

Hope you feel better soon

NanciT

beth22
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Re: Living on pins and needles

Postby beth22 » Thu Feb 13, 2020 1:11 am

FMT is usually done via colonoscopy and with your history of diverticulitis, your insurance should cover the colonoscopy part of it. Some doctors do not charge extra for the FMT and just bill it out as a colonoscopy. I would see a different Gi and discuss this. You might want to get the colonoscopy to see about the diverticulitis and do the FMT at the same time. However, FMT won't prevent you from getting c diff again if you take antibiotics. That is what happened to me. So, you will always have to be careful.

roy
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Re: Living on pins and needles

Postby roy » Thu Feb 13, 2020 3:10 am

Going forward, if the diverticulitis diagnosis was a "best guess" because of symptoms you need to see an expert before accepting antibiotics for it.

AnnieB
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Re: Living on pins and needles

Postby AnnieB » Thu Feb 13, 2020 1:24 pm

Thank you everyone for your replies! It’s great to get support!
The first time I was diagnosed with diverticulitis, it was based on just a physical exam and my description of the symptoms. But the second time I got a CT scan and it was definitely diverticulitis. And both times felt exactly the same so now I know that the first diagnosis was correct.
So if I’m understanding you all correctly, I can’t ask for a fecal transplant unless I get C. Diff a third time? And even then it won’t prevent me from getting C. Diff again? I’m confused. Then what is the point of getting one?

georgina
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Re: Living on pins and needles

Postby georgina » Fri Feb 14, 2020 1:21 am

FMT does work to cure active Cdiff , but if you take another course of antibiotics you might end up with it again.

beth22
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Re: Living on pins and needles

Postby beth22 » Fri Feb 14, 2020 2:08 am

Different doctors have different protocol. Some do FMT before 3 relapses. You need to ask your practitioner.

AnnieB
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Re: Living on pins and needles

Postby AnnieB » Sat Feb 15, 2020 12:38 am

Should I do a vancomycin taper after I finish my 14 days? I sent an article from this forum to my doctor and asked her about it. She got back to me saying she read it and some other articles too (seems she is trying to educate herself on my behalf. That’s both a good thing, but also bad because it means there’s a lot she doesn’t know. She’s awfully young!) Anyway she also said she talked to the GI guy, and he agreed I could do a taper if I want to.

Should I? Or just wait and see if the 14 days works?

And I guess my question about tapers is, isn’t that awfully long to be taking antibiotics and killing off all the good stuff with the bad? And yes I’m taking lots of S. Boullardii and drinking kefir. It just seems like a really long time!

beth22
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Re: Living on pins and needles

Postby beth22 » Sat Feb 15, 2020 3:04 am

A vanco taper did not work for me, but it has for others. When I came off cold turkey from vanco though, my symptoms returned much faster and I did not feel well at all. I think a taper might be a good idea since you are already on the medication. If that does not work, it would be more reason for a GI to consider doing FMT rather than just putting you on vanco again. But, yes, the longer you are on meds, the more flora gets killed off. That's why it is such a balancing act.

Ril
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Re: Living on pins and needles

Postby Ril » Sat Feb 15, 2020 4:21 pm

I would make an appointment with a GI as has been suggested. If you can get in that would be the perfect person to have this discussion with rather than a dr who is educating herself from articles you are providing. If you get the referral ask for an emergency appointment, let them know you have active c diff and diverticulitis and if that doesn’t work, ask to be put on a waiting list.

AnnieB
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Re: Living on pins and needles

Postby AnnieB » Sat Feb 15, 2020 6:26 pm

Thank you so much Ril! Yes, I totally agree, I don’t understand why my doc hasn’t referred me to the GI guy so I can talk to him myself instead of passing messages back and forth through her. You have convinced me to advocate more strongly for myself. Many more weeks of antibiotics is not something I want to go into blindly, without speaking to a GI first.

AnnieB
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Joined: Sat Feb 08, 2020 9:02 pm

Re: Living on pins and needles

Postby AnnieB » Sun Feb 16, 2020 8:18 pm

I’ve seen a few posts mention the anxiety that comes with C. diff but not many. My sister, a nurse, told me that her patients with C. Diff talk about feeling depressed and despairing, and she says it is the actual bacteria affecting your mind and emotions. I totally believe it, the brain-gut connection.
Can anyone offer support on that subject?
I wake up in the middle of the night feeling so anxious I want to crawl out of my skin. Then lie awake till morning with my thoughts spiraling downward towards doom and gloom.
Also if I have a day where it seems like I’m feeling more depressed and anxious than the day before I get freaked out that I’ve stopped getting better.

beth22
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Re: Living on pins and needles

Postby beth22 » Sun Feb 16, 2020 11:01 pm

I was very depressed with c difficile and many posters have said the same over the years that I have been on this board. You are not alone. Some go on medication. I did not.

georgina
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Re: Living on pins and needles

Postby georgina » Mon Feb 17, 2020 1:26 am

I can definitely relate to that ,since my first Cdiff bout i got very depressed , anxiety was overwhelming , had really bad insomnia ,had to go see a psychiatrist and started meds .I've been on antianxiety/antidepressants ever since.

exsorbed
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Re: Living on pins and needles

Postby exsorbed » Wed Feb 19, 2020 11:53 am

i can attest to getting very depressed and having anxiety and along with all of it i have brain fog as well so it makes it even worse. the anxiety that i have developed isnt me worrying about c diff, i’m anxious about everything and the depression is very foreign to me because i’ve never been depressed until i got c. diff.


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