Need some advice

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
tanya12
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Need some advice

Postby tanya12 » Tue Dec 20, 2016 1:11 pm

To make a long story short I was diagnosed with C DIfF on November 30 after taking clindamyacin. Negative for toxins positive for antigen and was treated with 10'days of flagyl because of my diarhea.
Within 5 doses d had stopped. Started having formed stools and going one a day or twice and day. Had the typical nausea. Flagyl finished on Saturday December 10th. Was still having nausea and lots of grumbling in the belly but no diarhea at all. Come Thursday , had formed broken stools x2 not a large amt. same Friday and one Saturday. Still was having nausea and o stand gut rumbling. Come this past Sunday, decided to try and eat some apples, then cooked some eldente baby carrots, shaved steak and pasta. Stomach pain within and hour followed by three bouts of d throughout the night. I decide to go to er to have stool checked. Mind you anxiety level has been through the roof. They test and I get a call I'm positive for both toxins and antigen.. had about four bouts of d yesterday but tons though. Started vancomyacin at 4.00 yesterday, have taken three Doses. I had one bout of d this morning. Nothing since. I am just so baffled by this disease. I go to a gastro today at 3:30pm and I pray he can shed some light on al the anxieties and feAr I am having. All I read are horror stories a si am plagued with the fact I will never get rid of it
My question is, Is it common to relapse from flagyl? Could I have tested positive yesterday because I only finished treatment 8'days ago? I'm so confused

Lisa33
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Re: Need some advice

Postby Lisa33 » Tue Dec 20, 2016 1:49 pm

It is common to relapse on Flagyl. I relapsed two weeks after finishing the round. Vanco has a higher cure rate. It is what cured me. Testing too soon after finishing meds can lead to false results. Also treating c-diff with a test result of negative toxins really doesn't make sense either. It is possible that treating with Flagyl actually caused a c-diff infection, as Flagyl does kill good gut bacteria. That good gut bacteria could have been keeping the c-diff bacteria in check. But hindset is 20/20. Looking forward, I would think that your GI will have you complete this course of vanco. The proper protocol is not to test for a cure, but rather to treat based on symptoms alone. So, if you are not having the copious watery D any longer, that is a good sign that you are going into recovery. Things usually don't go back to normal quickly. It can take some time for your gut to heal. You should also consider taking probiotics, such as sacchromyces boulardii (Florastor) and VSL-3. These are the two most used probiotics by posters. VSL-3 is a live lactic acid bacteria. Any probiotic with live bacteria should be spaced apart from meds, as the meds will kill it off. Sacch. Boul. is a yeast probiotic, which is not killed off by meds. People also find Kefir, the probiotic drink, to be beneficial as well. There is a ton of info on this site which can be helpful.

Also, I know that you are learning the ropes of this site, but just continue on this thread, as this is the third thread opened on your case. I am going to lock the other two under Tanya72, as it will start to get really confusing. Also, please read the first forum on rules of posting, standard intro, etc.

Thanks,
Lisa

tanya12
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Re: Need some advice

Postby tanya12 » Tue Dec 20, 2016 7:09 pm

So I went to the gi doctor and feel frustrated. Told me there is no need to take probiotics at this point. I asked him if this round of vanco fails would I be able to do a fecal transplant. He said no way that I have not failed medical treatment yet. he said I'd still have to go through pulse , then tapered then dificid and they would all have to fail before a fecal would be considered
I just feel if it had such a high success rate why would they keep putting people through all the antibiotic treatments

roy
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Re: Need some advice

Postby roy » Tue Dec 20, 2016 7:26 pm

Because Faecal transplant is untested, the side effects are unknown and you have to sign a disclaimer that you take full responsibility if you end up sicker than when you started!
Almost all sufferers will be cured by mainstream meds.
Think of the people who had blood transfusions in the past and ended up with HIV, Hepatitis, or Cancer.

It's still probably the best treatment on offer for recurrent C.diff but it's a long way from perfect.

tanya12
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Re: Need some advice

Postby tanya12 » Tue Dec 20, 2016 7:34 pm

Thank you Roy I know I am probably jumping way ahead of myself and that's what he said. He said just because the Flagyl did not work it does not mean the Vanco will not clear it on the first try he said this happens all the time and I shouldn't feel like the Vanco is going to fail me

amyc
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Re: Need some advice

Postby amyc » Tue Dec 20, 2016 7:41 pm

I was cured by a single course of vanco after flagyl failed. My GI doesn't think probiotics do much to prevent C diff relapses, but does like Align if a patient wants to take a daily one. He uses VSL#3 in patients with more serious stuff and said it was fine if I wanted to spend the money.

tanya12
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Re: Need some advice

Postby tanya12 » Tue Dec 20, 2016 8:01 pm

It's been a strange run with me so far I don't feel I ever had the typical symptoms. I had two bouts of d Sunday night, then four bouts yesterday. Statrted vanco at 4 yesterday and only had two small bouts today. Crazy

amyc
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Re: Need some advice

Postby amyc » Tue Dec 20, 2016 10:33 pm

The vanco made me feel normal quickly, so hopefully tomorrow will be better and you will be done with C diff after this treatment.

Lisa33
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Re: Need some advice

Postby Lisa33 » Wed Dec 21, 2016 8:58 am

I also was cured by a 14 day treatment of vanco after Flagyl failed. I relapsed two weeks after Flagyl, was put back on Flagyl, which made me sicker than the c-diff. After 9 days of hell, was finally switched to vanco. That is what cured me. Your doctor is right. You have to exhaust meds first before an FMT. I wish that the first line of treatment was vanco or dificid. There would probably be much higher success rates on the first try. But, they are much more expensive, so that is why Flagyl is used first. Dificid was actually meant to be for the first line of treatment. The vanco is already working, so that is great news! My experience with probiotics has been a positive one.

tanya12
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Re: Need some advice

Postby tanya12 » Wed Dec 21, 2016 9:46 am

I am so happy to have found this forum. My anxiety level is through the roof.i cry, I'm anxious, I'm constantly taking my temp, I'm paranoid that the vanco will lower my potassium. I'm hungry but afraid to eat anything other than bananas rice and soup.I feel like I should put myself in mental health because I feel like I'm breaking down
I feel like I should put myself in mental health because I feel like I'm breaking down I feel like this is never going to go away
I can't get a full night sleep

NanciT
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Re: Need some advice

Postby NanciT » Wed Dec 21, 2016 10:55 am

Talk to your doctor about the way you are feeling. There is a Brain/gut relationship and when things are "off" as in the case of CDIFF, it can be very difficult emotionally. We have many threads on the site here about it. You may want to speak with them about some short term medication for your anxiety.
Know that your are not alone in these feelings, many of us have had them. I never cried so much in my life than I did during my treatment, looking back I now realize why.
Your GI should know all that is going on including the emotional side of it.
There are things that can help
I hope you feel better soon
NanciT

tanya12
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Re: Need some advice

Postby tanya12 » Wed Dec 21, 2016 1:22 pm

As I said, I am so grateful to have found this group and it helps to hear of people's recoveries and gives hope. I do have to ask this. The flagyl seemed to work within 5 doses and I had no d thrughtout treatment. Even a week after, my stools were formed. I was careful,about adding foods. Sunday night I ate shaved steak carrot and pasta, had an apple earlier , foods,I was not eating for weeks. That night sent me into two or three d bouts, Bristol 5'and 6. Panicked went to er to get retested. Had theee more bouts of d Bristol 6 that day. Got the call positive both antigen and a and b and started vanco that day. Yesterday two small bouts Bristol 6. Today so far 1 time Bristol 5 but all,came apart when flushing ( I know I know close the lid don't look)
I'm just confused to whether or not this was just a false positive being it had only been 9'days off flagyl or if it was stilll there. I only question because of how quickly the vanco seemed to kick in. Knock on wood. I don't mean to flood people with questions but as you probably know my concern is should I have held off in case it was just post ibs.

Lisa33
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Re: Need some advice

Postby Lisa33 » Wed Dec 21, 2016 1:58 pm

As long as you are not having frequent watery D, with the urgency to go, you are doing fine. Loose, semi-formed stools is completely normal. Don't think about the past anymore. Whether or not you should have been treated with Flagyl is not relevant anymore. You were and now on vanco. You are doing fine. Just get through the vanco, and then your body will heal. I also agree with Nancy on speaking to your doctor about your anxiety. It may be helpful to have something to help you stay calm through this time. We all know how you are feeling. It's not an easy time, but you will get through it.

tanya12
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Re: Need some advice

Postby tanya12 » Wed Dec 21, 2016 2:06 pm

Thank you lisa . I seem to obsess over everything I read the thread that someone kept having their potassium dropped from vanco so now I am convinced that's going to happen to me. I had blood work Three weeks ago and everything was fine I cannot imagine anything being out of whack because I really haven't had continuous d unless my diet has made me deficient. I eat one to two bananas a day I'm more worried because I have not been eating vegetables basically rice, chicken, chicken noodle soup bananas bagels and peanut butter Kiefer today I ate scrambled eggs I'm wondering if my weakness and fatigue is from all the anxiety. I do have a Xanax and I take it sparingly but perhaps I should use it so I am not on edge so much
I hope that as each day goes I've become more positive my fear is having my hopes up as I did with Flagyl that it was cleared, only to have to be going through this all over again and in the same token I'm embarrassed to be behaving this way because I read other people stories and they have gone through so much worse and I am acting as if I have been battling this for months and months and I have not taken into consideration that statistics say most people are cured after 1 to 2 rounds of anabiotic's. I guess I just assumed I would take the Flagyl and that would be it. So now I have thrown myself into that category that I'm going to just keep having reoccurrences over and over and over again
Perhaps I need to get off my butt and do something and stop fixating on this so much

Lisa33
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Re: Need some advice

Postby Lisa33 » Wed Dec 21, 2016 3:00 pm

That is the best advice - try not o fixate on it, and do something to get your mind off of things. I really think that you are doing fine. My potassium did not drop on vanco, and I was hardly eating. Myself, along with many others on this site, were cured after just one round of vanco. Remember, the majority of the people who get better after one or two rounds of meds are not on this site anymore. Most of the time, just like with anything else, the people who have had hard times are the ones that are still on sites like this for the support. So, you will of course read more about the more stubborn cases. Don't psyche yourself out anymore. Everything that I have read from your posts is not alarming and all normal.


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