10 days post-vanco and that smell is back

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OverIt33
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10 days post-vanco and that smell is back

Postby OverIt33 » Fri Oct 26, 2018 12:15 pm

You know the one I mean. That unique smell has been coming and going for almost 2 days now, accompanied by gurgly discomfort and soft, formed stools. No D so far.

But that smell went away entirely before now, and that's what concerns me. I'm taking Florastor and 2 strong (complementary) probiotics, along with kefir once a day. A day after I ran out of my strongest probiotic (which I've since re-stocked) is when that smell reared its ugly head again. I doubt that's a coincidence.

Is it possible to have that smell present (on and off, not constantly) without needing another full course of vanco? Or does that smell mean it's already too late? I know you aren't medical professionals, and I have already consulted my doctor. I just want to hear firsthand stories or opinions before I make my final decision about getting back on vanco.

Brief summary: 33 year old female, had a kidney infection and had to take two different antibiotics for it (Cipro, then Cefdinir)- and that's when I came down with CDAD. Was going about 10-15 times a day and lost 10 lbs in a week. Stool sample was positive for c diff. My doctor tried to put me on Flagyl, but I said no after some research and insisted on vancomycin. I don't have health insurance, so even with loopholes and coupons, etc., the lowest price for a course of vanco is about $300. It worked nicely, but then during my last 3 days on the vanco, I came down with a UTI (probably leftovers from the kidney infection, plus dehydration..... I find it very hard to stay hydrated on vanco). So, my last 3 days of vanco, I was also on a low dose of Cipro to knock out the UTI. *eyeroll*

It was all fine until the last couple of days. Note- I have also started eating more diverse foods over the last few days, and I even had a cup of coffee yesterday morning (yikes, that was a mistake... talk about irritation).

I know it's normal to have IBS after c diff, but what about *that smell*? I've loaded back up on those probiotics in the hopes that my gut flora can win this battle without another round of vanco, but the prescription is waiting for me at the pharmacy in case I need it. Again, no diarrhea so far- just discomfort, soft stoool, and every once in a while, that very specific smell.

Opinions are welcome. Of course, I want to avoid another course of antibiotics if my gut flora can win the fight without them, but I'm not sure if my symptoms are in the normal range of post-treatment experience or not. I'm back to eating bland foods and certainly no coffee... I feel fine otherwise- no fever or weakness like I had the first time. So far.

NanciT
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Re: 10 days post-vanco and that smell is back

Postby NanciT » Fri Oct 26, 2018 1:00 pm

The "Smell" is not something everyone experiences. I never did and I had 5 relapses over a year.
I would not put much thought into that. Be careful not to jump in and treat unless you start with the D all over again and it's consistent. We see this on this site over and over. Post Vanco it can take a long time, everyone is different.

The most difficult thing is the "waiting" and wondering if it will come back. I would do the same thing, still to a bland diet and see how it goes. There can be good days and bad days in recovery.
Each time I relapsed, it was very clear to me, the D started and continued with all the other symptoms I had( I also had vomiting with CDIFF)

One thing I want to mention is the UTI you stated you had while on Vanco. Vanco can cause bladder irritation and UTI symptoms. If they were to return, make sure the DR does a Culture and Sensitivies on the urine. If it's positive, it will also be clear which antibiotic works. There are many of us on the site that had this issues with Vanco, it is now stated in common side effects. I had this issue for a long time ( was on Vanco 3 months) post Vanco. Finally had my urologist and GI meet and discuss, both agreed.

Hang in there, hopefully things will slowly improve

NanciT

roy
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Re: 10 days post-vanco and that smell is back

Postby roy » Fri Oct 26, 2018 2:44 pm

Smell does not mean anything, you gut is adjusting so expect some "off days"
Nanci is right about the UTI symptoms, vanco can cause that!
If you Dr did not send a sample for culture (not an in house dip test) to prove you had a UTI it was very likely a vanco side effect and not need treating.
A Dr that gives cipro to someone having treatment for c.diff is not a Dr I would be trusting!

sammyp
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Re: 10 days post-vanco and that smell is back

Postby sammyp » Fri Oct 26, 2018 10:49 pm

I am 9 weeks off a Vanco taper/pulse and I still have the occasional smell especially if I eat cheese or drink coffee. Early in recovery I had smell every single day so I asked my ID doc about and he said smell is not indicative of active infection. He told me soft stool, stomach pain, food sensitivities, bloating, gas, etc were all normal in recovery at varying degrees and to give my body a good 6 months to heal (some people take even longer or have a new normal as I've learned in support groups). He told me absolutely don't treat unless profuse, watery D returned. He said overtreating is common because people expect to take meds and feel better immediately but that's not the case with CDiff. You're gut suffered through a major infection and it will take time and patience to heal.

On another note. I had excruciating bladder pain on Vanco. Thought I had a UTI multiple times but cultures came back negative. I took Tylenol routinely every 6-8 hours which seemed to help. I would get bladder pain twinges for about a month after being finished with Vanco. It's definitely a common Vanco side effect but I was determined to finish treatment no matter what and so far no reoccurance at 9 weeks.

beth22
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Re: 10 days post-vanco and that smell is back

Postby beth22 » Sat Oct 27, 2018 2:39 am

If you do wind up with a relapse and vanco causes bladder irritation, you could try and get a coupon for Dificid. We have had several posters who were able to get it free of charge. It is more expensive than vanco.

OverIt33
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Re: 10 days post-vanco and that smell is back

Postby OverIt33 » Tue Oct 30, 2018 12:48 pm

Somehow I'm just now seeing these responses- thank you everybody! This really helps to hear external feedback from people going through the same thing.

I decided to hold off on any further treatment, because really I have felt fine other than some mild to moderate irritation along with the intermittent smell. The smell is *definitely* worse when I drink caffeine. Otherwise, all things considered, I do think my gut is healing well under the circumstances.

It's 5 days later now, and I'm really doing fine aside from that odor and some soft stool. Still no D. My system may not ever really tolerate caffeine well again, but that's okay. I'm just going to keep taking strong probiotics for a long while and let things heal as naturally as possible.
Hopefully I don't relapse, but if I do, I will keep in mind what everyone has said about vanco and UTI symptoms.... good to know. I'll also look into how to get Dificid without paying $1K+. Hopefully it won't come to that.

It's so strange going through the process of figuring out what you can and can't consume, and it's completely different than it was before. No Brussels sprouts (my favorite), no caffeine, no hummus, nothing spicy, etc... my poor gut.

Happy healing to everyone. <3

sammyp
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Re: 10 days post-vanco and that smell is back

Postby sammyp » Tue Oct 30, 2018 7:45 pm

Omg, no joke, I tried roasted brussel sprouts about two weeks ago and for TWO days after I felt like I was dying. Gas pains that almost had me going to the ER. And terrible nausea that woke me in the middle of the night. I'll never make that mistake again haha.

So glad you're feeling better. I switched to decaf coffee after all this (helps the anxiety too to not have caffeine) and my stomach handles it really well.

Ril
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Re: 10 days post-vanco and that smell is back

Postby Ril » Tue Oct 30, 2018 11:11 pm

Brussels sprouts are extremely high in fiber and extremely gassy. I love them but even 6 years later they still make me ill!

roy
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Re: 10 days post-vanco and that smell is back

Postby roy » Wed Oct 31, 2018 7:53 am

When my wife eats them I sleep on the sofa!


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