CDiff Relapse, not seeing any improvement on Vanco

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Birdy
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CDiff Relapse, not seeing any improvement on Vanco

Postby Birdy » Sun Aug 19, 2018 10:24 pm

Hi everyone!

God knows I never imagined I'd have to make an account on a forum like this. I'm in my late-20s and, to the best of my knowledge, contracted Cdiff unknowingly for the first time back in January from a relative who was unaware they were infected at the time. All I did was use their bathroom once and kiss them on the cheek. Pretty soon after coming home I acquired horrible D, but that only lasted a few days. I then "progressed" to D of varying degrees once a day, accompanied by severe stomach pain at night and the telltale awful smell. After two months of living like this I had had enough and went to my primary doc. They did a battery of GI tests on me that all came up negative. Then my mom casually mentioned the relative I'd visited back in January had been diagnosed with Cdiff shortly after... and my doc flipped. The next stool sample was tested for Cdiff and came back positive. The doctor put me on Dificid and told me to bleach the entire house. After one day on Dificid I was back to normal (Edit: to be clear, I still took the full ten day dosage but felt better after one day!). It felt like a miracle. I spent an entire day bleaching. I thought I was golden.

Well fast forward four months and slowly but surely, all the symptoms started returning. One daily completely unformed stool. Horrific nightly stomach pains. Overpowering smell. I was in complete denial but at the same time knew this couldn't be recovery. I had no ebb and flow in the symptoms. I go back to the doc, do another stool sample, and it comes back positive.

Now the doc has me on vanco, because she says that is the guideline for first recurrence. However, it's not doing anything. I'm halfway through my 125mg 4x a day for 10 days and the only thing that's gone is the smell. What's worse, is I'm now having D up to 3 times a day instead of 1.

So I'm here to ask you all if any of you have had a similar experience with vanco making things worse and what I should do in response. I have an appointment to see a Cdiff specialist at another hospital in my area this week. She sent me a document outlining a kefir regimen in addition to Florastor, so I'm taking both now. I'm scared straight though now that I've relapsed and I feel paralyzed. Did I not clean my house enough before? Why did this happen again? What can I do to stop it? I feel like there is so much conflicting information out there about how long someone is contagious afterwards and how diligent you should be about bleaching. The GI specialist says I now have a 1 in 2 chance of relapsing again and the thought of that kills me. Am I going to have to be on alert for this for the rest of my life? Part of me wonders if I never should have taken any antibiotics to treat this in the first place since I only had "one" D or D-like stool per day. I wonder if this "relapse" was even a relapse and if I ever should have started vanco. It's enough to bring me to tears.

As an FYI, the last time I had taken antibiotics (macrobid for a UTI) was a year before the Cdiff was contracted. I have no idea if that is still within the acceptable range for being at risk for infection, but there you have it :(. I didn't get Cdiff from taking the antibiotics originally, so I have no idea what any of this means or if it's going to be safe for me to take them again in the future.
Last edited by Birdy on Sun Aug 19, 2018 11:32 pm, edited 1 time in total.

NanciT
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Re: CDiff Relapse, not seeing any improvement on Vanco

Postby NanciT » Sun Aug 19, 2018 11:18 pm

Hello Bridy and Welcome to the site Please read the first thread for all new posters

Sorry you had to find us. As I read through your post, I wondered if you only took Dificid for ONE day? Did you complete the 10 days?

I ask because most generally start with Vqanco, if that fails they move onto Dificid. Currently since your D continues along with all of your symptoms, I would talk with the new GI about a Dificid taper. We have several on the site who have done a 30 taper and done great! Please don't think you will have another relapse, see the new GI and talk about this. The new DR already has told you to take Kefir and Florester, those are good signs they are familiar with this illness.

Hang in there, it may take time to feel better but it sounds like you are lined up with a good GI, sometimes that is half the battle!

NanciT

Birdy
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Re: CDiff Relapse, not seeing any improvement on Vanco

Postby Birdy » Sun Aug 19, 2018 11:32 pm

Hi Nanci! I definitely completed the 10 days of Dificid despite feeling better after one day. I'm very conscientious about antibiotic resistance and proper usage.

I really appreciate your words of encouragement. This doctor wanted to use Dificid because she said it would be less harmful to my other gut bacteria and had a smaller incidence of relapse. Unfortunately I guess I was in the small minority of Dificid patients who do :(.

beth22
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Re: CDiff Relapse, not seeing any improvement on Vanco

Postby beth22 » Mon Aug 20, 2018 12:00 am

I got worse symptoms when I started vanco and in hindsight wish I hadn't taken it. I agree with Nancy about doing a Dificid taper.

Birdy
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Re: CDiff Relapse, not seeing any improvement on Vanco

Postby Birdy » Mon Aug 20, 2018 12:05 am

beth22 wrote:
> I got worse symptoms when I started vanco and in hindsight wish I hadn't
> taken it. I agree with Nancy about doing a Dificid taper.

Ugh, this is exactly what I feared. Unfortunately it's a lost cause for me now I guess because I won't have access to the new GI doc until Friday and will have no way to swap out the vanco for Dificid until then. I did ask my current doc if I could do Dificid again and she said no, it wasn't recommended :(.

Also, have any of you dealt with yeast infections while on vanco? I always get them after taking broad-spectrum antibiotics and I'm not sure how to proceed. GI doc does not support Diflucan or any oral yeast killer because she says you want to preserve as much as the microbiome as possible. Guess I'll be using the nasty creams if it strikes...

Kuro
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Re: CDiff Relapse, not seeing any improvement on Vanco

Postby Kuro » Mon Aug 20, 2018 1:07 am

You are no longer considered contagious by most standards (including hospital) once you stop having D. Of course, you always need to be sure to keep your hands washed after using the bathroom and before preparing any food. This is not only for the safety of others, but for yourself, too.

On the topic of cleaning, the "clean your house from floor to ceiling!" mindset is one which does not seem to be widely accepted as necessary. CDI just isn't that contagious. Unfortunately, it's a scary line which often accompanies the patient being told they have the infection. I use Clorox Germicidal bleach wipes (you can get them on Amazon) to wipe down the toilet after each BM. Once a week, maybe twice, I go around my corner of the house and wipe down frequently touched things. The laptop, mouse, phone, any game machines, etc. Beyond that, a more regular cleaning schedule is what we keep to. You might want to be more aggressive when you are actively infected, but still don't obsess over it.

Your doctor did the right thing by starting you on Dificid, as it was designed to be a new first line antibiotic. The cost wrecked that idea. It kills the least flora and specifically targets the Clostridia. I would have thought they'd go to a taper after that if they were being so aggressive (starting with Dificid is pretty aggressive -- some docs still start with Flagyl!) but Vanco has worked for many. As Nanci says, please don't decide you've relapsed yet. Give it time and talk to the GI if things don't seem to be resolving. I don't know where they got that 1 in 2 figure, because 80% are cured in one to two rounds of antibiotics. That's just me thinking, though, and not medical advice!

With regard to Beth saying she regrets taking the Vanco, I'm in the same position, but it's not because Vanco is a bad medication for this. Rather, I was in a position where my body may have been fighting it on its own, as I did not have full blown symptoms at the time. Unfortunately, that "scare call" prompted me to just do whatever they said. Taking the Vanco may have knocked the original, natural flora fighting for me down just enough. It's all theory, though; I could well have needed the antibiotic. I'm 5 months out from my first round of Vanco as of this writing, and I also did not have antibiotic involvement. This is a so-called "community acquired" infection and could be acquired by doing so many things you don't even think twice about. Antbiotics are still something for us to avoid.

Why people relapse is something that nobody can really answer, because one person can do something and be fine, while another does exactly the same thing and is not. Very unlikely to have been your fault, though, so don't feel like that. CDIFF is a difficult disease because it's unpredictable and it does tend to leave behind spores which can germinate if conditions in the gut are right. Your GI's suggestiions of kefir and Florastor are very good. These are highly regarded source of probiotics which, at least in theory, help to populate the gut and "crowd out" the CDIFF. It may still be there, but it's a small part of your microbiome kept under control by the rest.

Whew! I typed a lot, but I hope there's some encouragement or help in there somewhere. Wait for what the specialist has to say, because it's my personal opinion that your GI is perhaps being a bit grim about one or two points. Try to relax, put the thought of relapse out of mind for now (especially hard for me even still) and understand that you have plenty of options left, if your present course of medication doesn't work out (emphasis on if). I've never read a post on here about any members dying of CDI, but I've read plenty about members making it through.
Last edited by Kuro on Mon Aug 20, 2018 1:30 am, edited 1 time in total.

georgina
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Re: CDiff Relapse, not seeing any improvement on Vanco

Postby georgina » Mon Aug 20, 2018 1:24 am

It might be a good ideea to test for other illneses like : stool culture for other pathogens , parasites ,SIBO. Also i do not understand why were you treated the second time since you had only one loose stool per day? Most doctors don't treat unless the patient has D multiple times per day along with urgency,cramps , fever.
Are you keeping a diet? If not , you might wanna consider eating bland until your gut heals , start from BRAT and gradually add more bland foods back like eggs , roasted or mashed potatoes , chicken soup , vegetables soup.

Birdy
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Re: CDiff Relapse, not seeing any improvement on Vanco

Postby Birdy » Mon Aug 20, 2018 11:28 am

Kuro - thanks for your detailed, thoughtful reply. I really appreciate all of that information.

Georgina - the first time I had all these symptoms I did go through all the tests (pathogens, parasites, celiac, colitis, SIBO, etc.) and they all came back negative. Then we found out about my contact with Cdiff so the doctor was convinced that there was no other explanation for my sudden onset of symptoms. I had no history of IBS or other abnormal bowel movements. So she decided that I must have a freakishly mild infection. I guess the same logic applied for the second round. I am so torn over whether or not it was the right thing to do but because I completely went back to normal after taking Dificid the first time that leads me to believe something was working.

I'm going back to my general doc today, and have asked her to speak with the GI person I'm scheduled to meet Friday. I'm doing bloodwork for that doctor tomorrow. I'd like to get off vanco, because I don't think it's helping at all. I have no idea what they will consent to me doing instead, if anything though.

NanciT
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Re: CDiff Relapse, not seeing any improvement on Vanco

Postby NanciT » Mon Aug 20, 2018 11:59 am

Yes about the yeast infections, mine became chronic post Vanco

Not sure why your MD did not want you on a Dificid taper, make sure to review this with the new GI I also failed Dificid 10 days, went on taper ( much longer than 30 days at the time) and finally got rid of it after a year.

Hope all goes well with the new GI

CSHF
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Re: CDiff Relapse, not seeing any improvement on Vanco

Postby CSHF » Tue Aug 28, 2018 1:09 pm

Hi Birdy.

I have a hx of cdiff, including relapses. I wonder how you're doing now? In case this is helpful: Vanco has caused me diarrhea that turned out to be non-cdiff diarrhea.

Good luck. Hope you're doing better.


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