10.5 weeks post Vanco. Normal recovery?

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LT428
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10.5 weeks post Vanco. Normal recovery?

Postby LT428 » Sat Nov 11, 2017 10:39 am

Hi!

I hope everyone is doing well. I'm a 32/F that was diagnosed with CDIFF back in July from Clindamycin. I took Flagyl for the first treatment. Was going once a day with no D after that treatment. Retest after 10 days and was positive. The Nurse Practitioner decided to put me on Vancomycin for 10 days. Since then, I've seen a GI doctor and I have not been retested. The GI doctor told me since I'm not having the D, there is no need to be retested. I've been doing well with one firm bowel movement a day in the morning. However, I'm still having upper stomach pain and doesn't go away with whatever I eat. The GI thinks it's PI-IBS and he is not concerned. He basically thinks "I'm going to be okay."

Recently, I've marked the 10.5 weeks post Vanco. On Wednesday, I had one bowel movement in the morning and that was firm. In the afternoon, I had 1 episode of D with WD. Thursday, I didn't go at all. On Friday, I went once and it was firm. This morning, I went once and it was really loose with food (sorry, TMI). I've been feeling okay minus the upper stomach pain and my stomach is rumbling. I'm also noticing the smell is back. My question is, is this a relapse or PI-IBS? I may have eaten something that triggered the abnormal BM the past 3 days. I know about the 3 days rule. I'm just really concerned because my symptoms for positive CDIFF have been different from everyone. I'm taking Align everyday and drinking Kombucha. I have an appointment with my GI on 11/28, but will call on Monday to see if I can get a sample kit.

Thank you everyone for your support.

LT428

NanciT
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Re: 10.5 weeks post Vanco. Normal recovery?

Postby NanciT » Sat Nov 11, 2017 11:24 am

Hello LT428 and Welcome to the site Please read the first thread for all new posters

We are not able to diagnose you but I can share my experience as well as other's who will post. I often to tell people Post IBS things can be "all over the place" and it takes time to heal. If D comes back and you have several bouts of it along with the smell and other symptoms, then I would get it checked. But often it takes time to get back to a " new normal". I had left abd pain for a very long time, had CT scans, lab work, ER visits and it has taken a very long time for me to recover. Each time I was told" Post IBS". I still have days with Left ABD pain and I still watch my diet.
If the abdominal pain persists and you feel something is going on, ask to see the GI again and explain your concern.
Recovery can be different for everyone, mine took a very long time and I am still having post CDIFF issues.
NanciT

LT428
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Re: 10.5 weeks post Vanco. Normal recovery?

Postby LT428 » Sat Nov 11, 2017 2:22 pm

Hi NanciT,

Thank you so much for the reply. Unfortunately, I went again about an hour ago. This time, I could tell that it's definitely back. My stomach is hurting more than usual. The distinct color, smell, urgency, and consistency that was there from the original diagnosis is back. I was able to page my GI and was told to restart Vanco. I just took my first pill 20 minutes ago. I thought I was doing so well for the last 10 weeks. This is definitely one of the hardest thing I've ever dealt with. I was perfectly healthy before this whole thing started.

I was wondering...anybody ever consider a lawsuit? This has changed my life, and now I'm beginning to think if I will ever be okay again.

LT428

amg
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Re: 10.5 weeks post Vanco. Normal recovery?

Postby amg » Sat Nov 11, 2017 2:32 pm

LT, I'm so sorry you're having another relapse.

Have you talked to your doctor about Dificid? This is your second relapse. A Dificid taper is what some c diff experts use when their patients have gotten into a cycle of relapsing c diff.
https://academic.oup.com/ofid/article/d ... r-Patients

That is what ultimately cured my daughter who had relapsed twice on Flagyl and twice on Vanco.

Good luck! And yes, you will beat this. We felt like you do during my daughter's ordeal (she was 14 and a healthy athlete until her appendectomy which brought on c diff). But there are other treatments out there and you are young and healthy. Hang in there, be aggressive about your treatment, get rest and good nutrition, and some day soon this will all be in the past.

NanciT
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Re: 10.5 weeks post Vanco. Normal recovery?

Postby NanciT » Sat Nov 11, 2017 2:53 pm

I am really sorry it is back, 10 1/2 weeks is a long time between relapses. Mine were 2-3 weeks each time but it is terrible to be getting well and have it return.

I also would call you GI and ask for Dificid. Since you have already completed a treatment with Vanco.

As far as a lawsuit, I don't think it's been mentioned on the site since I have been on here in 2014. It is very difficult to prove anything. I do believe Clindamycin has a blackbox warning along with most antibiotics today. Each case is different but most of us here have taken antibiotics and ended up here.

Sorry you are going through this, especially after such a long time to have a relapse.

Feel better soon

NanciT

roy
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Re: 10.5 weeks post Vanco. Normal recovery?

Postby roy » Sat Nov 11, 2017 5:30 pm

I don't think I would trust a Dr that prescribes vanco 10 weeks after the last course just on the basis of a message and 2 bouts of watery D.
Minimum should be another test to see if its back before another round of meds is administered.

MKW
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Re: 10.5 weeks post Vanco. Normal recovery?

Postby MKW » Sat Nov 11, 2017 7:39 pm

Hi LT428, just wanted to say I definitely considered a lawsuit, but eventually found that nothing was done with me that was not totally legal or within proper guidelines for dentists. I was in perfect health and my dentist prescribed Clindamycin (I was at that point considered penicillin allergic) because the gum around ONE of my teeth was inflamed at a dental check up. I read the black box warning on the package, but it did not say the word "incurable" from what I recall. Fatal without treatment is one thing ... indefinitely incurable is another. Or only curable by experimental non-FDA approved treatment is another. I consider myself in the category of people injured by medical care. It's not a TV commercial now ... it's me. I was cured by an FMT but still live with PI-IBS. For some of us it's a long road to recovery, but we get there. This is just a really psychologically difficult health issue. But, fortunately for all of us we have this board for emotional support and guidance going through it!

Ril
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Re: 10.5 weeks post Vanco. Normal recovery?

Postby Ril » Sun Nov 12, 2017 7:21 pm

I am not quite sure what you are thinking about in terms of a lawsuit but all antibiotics list c diff as a possible side effect.
I also got it from clindamycin and have my own feelings about it’s use, but legality is another matter.

I also agree with Roy. I too question whether you actually relapsed based on such vague symptoms at 10 weeks after formed stool (which I didn’t even have) and would personally have waited - or at least asked to retest since it was so much later. I know my anxiety caused me to think I was relapsing when in fact it was PI IBS.

You will get better. I hope it is sooner rather than later.
Rita

LT428
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Re: 10.5 weeks post Vanco. Normal recovery?

Postby LT428 » Tue Nov 14, 2017 9:27 am

Hello everyone!

Again, thank you for your support and feedback. My reasoning behind getting back on the medication is because I didn’t want to wait for another 5 days to get my result. The color and smell are what triggered me to think it was back because my bowel movements have been good for the last 10 weeks.

The doctor followed up with me on Sunday. I had one bowel movement and it was formed. He told me it couldn’t be cdiff if I was having a formed bowel movement after 1 day on the medication. Since I’m on the medication, he said we’re committed to it. He told
me to taper it off to 2 times a day and give him an update on Friday. This is definitely a weird order, but I’m hoping he knows that he is talking about. Doctors around here are so hard to get an appointment. This is the best I can get until I find another doctor to get a second opinion :(

As for an update to how I’m doing, I’ve had one bowel movement Sunday, yesterday, and today. Somewhat formed, I believe. The color is still that bright yellow. I read on here to ignore the color, but it scares me since it kinda falls apart when I flush. I’m hoping and wishing that this small amount of medication this time around will kick whatever is left of the cdiff in by body. I’m still having that upper belly pain, but that’s pretty much a pain I’ve been dealing with for 4 months :(

I can’t express how much I appreciate everyone on this forum. This whole situation has been so depressing and only people on here know how I feel.

amg
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Re: 10.5 weeks post Vanco. Normal recovery?

Postby amg » Tue Nov 14, 2017 11:57 am

My daughter's BMs firmed up within 2 or 3 doses of starting Dificid. I think it was helpful that by that time, after multiple relapses, we knew her relapse symptoms and the ID trusted our descriptions of things. We were able to start meds before things got really bad. why wouldn't symptoms improve quickly if they're not severe to begin with and it's responding well?

Good luck!

2MG
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Re: 10.5 weeks post Vanco. Normal recovery?

Postby 2MG » Tue Nov 14, 2017 9:30 pm

AMG - I would agree with you, that things improve quickly when caught early. As they say, "a stitch in time saves nine".

LT428 - as soon as I started having what I recognized as relapse symptoms, I got in to see my doc. She would not prescribe for treatment with testing, but as soon as she got positive test results, she called me and called in my prescription. (That was on a Saturday and right as she was leaving for vacation.) With that said, my symptoms were not nearly as drastic as the first bout (thank goodness!). The relapse stuff started 6 days after I finished my first round of Flagyl, and I got my samples turned in on day 7. I got the news on day 9, and started the next round of meds on day 10. By day 12, I was much improved.


I hope things continue to improve consistently for you.


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