is this a relapse? :(

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Shpakie3
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is this a relapse? :(

Postby Shpakie3 » Tue Jun 05, 2018 11:02 am

Hello Everyone,

I was praying that I would never have to post on here ever again after returning to some normalcy. I was hoping to get a few opinions and encouragement. I originally was diagnosed with CDiff in June of last year. I was put on Flagyl for 14 days (which was horrific) and seemed to have kicked it after that. Although the side effects really were bad and I really didn't feel truly myself again until January of this year! I am still dairy-free and have stopped taking Florestor since January (I know very very stupid) My BM have never been the same prior to CDiff but I guess its my new normal. Which was fine with me. Until about last Wednesday, I started having D about 3-4 times a day for 3 days and some gurgling (no pain or any other symptoms) so of course am thinking THE WORST. I started taking the Florestal again on Sunday and drinking Kefir and now I have D 2 x a day and the gurgling has for the most part stopped. I have called my GI and he is sending me for another test but if this is a mild relapse case does anyone think that I cant treat it with probiotics? I really DO NOT WANT to have to take meds again - Please God. All opinions and suggestions are welcome! Thanks in advance!

Lisa33
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Re: is this a relapse? :(

Postby Lisa33 » Tue Jun 05, 2018 11:43 am

Hello Shpakie3 - Welcome to the site. Please read the first forum for all new users on rules of posting, standard intro, etc. So sorry you aren't feeling well again. There are some posters on here who have had mild cases of c-diff and elected not to treat and have done well. Obviously, we can't give medical advice and this is something that you have to decide with your doctor, but I would think that this episode of D is unlikely to be a relapse so far out without taking antibiotics. Maybe you caught some sort of bug that threw things off, or this is a bout of IBS. You are not alone when you say that you have a new normal after c-diff. Myself and many other posters on this site will say the same. If things start to take a nose dive, definitely insist on vanco or dificid. Flagyl side effects are just the worst, and it is actually not considered a line of treatment for c-diff anymore. Hopefully it won't get to treating again though.

Feel better,
Lisa

Shpakie3
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Re: is this a relapse? :(

Postby Shpakie3 » Tue Jun 05, 2018 12:40 pm

Thank you so much Lisa, I appreciate your response. Any suggestions regarding possible IBS? What do most do to treat IBS-D?
I am aware no one is a doctor on here but honestly the information I have received in this past year from this group exceeds anything my doctors have ever told me. I dont feel like any doctor I have seen (and there have been ALOT) knows anything about this horrible horrible disease.

beth22
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Re: is this a relapse? :(

Postby beth22 » Wed Jun 06, 2018 1:32 am

There is a medical food called EnteraGam that is used for IBS-D and it even has shown to have some effect in carrying out c diff toxins. It is a prescription and insurance probably won't cover it, but there is their own foundation pharmacy where you can get it for about $60 of $70 per box. Ask your doctor about it. If you test positive, then of course, you will have to discuss whether or not to treat with vanco or Dificid. I test positive on PCR, but negative on EIA, so that is considered a negative test. If you only have a PCR and it is positive, I would ask to have the second test because you don't want to overtreat either. I used to take Pepto Bismol for your type of symptoms and it helped me, but talk to your doctor first. He or she may want you to test first.

Lisa33
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Re: is this a relapse? :(

Postby Lisa33 » Wed Jun 06, 2018 9:59 am

You definitely should discuss with your doctor as Beth said. He or she may want to do a full testing panel to rule out all pathogens, along with c-diff. If your doctor believes it could be IBS, there are some prescription meds that can help, including EnteraGam as Beth said. Many posters on this site have had success with EnteraGam. My GI recommended an OTC supplement called IBGard. You may want to ask your GI about that one as well. And some feel that probiotics can help with IBS symptoms as well.

Ril
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Re: is this a relapse? :(

Postby Ril » Wed Jun 06, 2018 5:09 pm

I have struggled with PI IBS for several years and several meds have helped.
It flares up worse at some times than others.
If it turns out to be that, you can ask about Enteragam or xifaxan , which is also widely used after c diff and also helped me for a year.

Good luck,
Rita

Shpakie3
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Re: is this a relapse? :(

Postby Shpakie3 » Fri Jun 08, 2018 4:06 pm

Thanks for everyone's responses. My D has cut down to 1- 2x a day now since adding back in Florestal 2x/day and drinking Kambucha and water kefir and a bland diet. Do I still get tested? I'm so confused and nervous - Any suggestions?

Ril
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Re: is this a relapse? :(

Postby Ril » Sun Jun 10, 2018 11:21 am

Nobody can tell you what to do. I can only say that this sounds exactly like what I experienced with IBS and eventually took meds for IBS. My dr didn’t even test me for c diff but if you feel you need to rule it out or your dr won’t treat IBS and it is interfering with your life and needs treatment, then test. Just remember, if you test, make sure you do not allow treatment for a positive result for the presence of c diff, only for a positive result for c diff toxin....which I would be surprised if you have. Your symptoms are mild and you don’t seem to have risk factors.

But I am not a dr and can only share my experiences.
Rita

Shpakie3
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Re: is this a relapse? :(

Postby Shpakie3 » Fri Jun 15, 2018 2:45 pm

I ended up getting tested, I just got a call from my doctor a week later saying that i tested positive and he called in the script for Dificid. I dont have the gurgling anymore and my BMs are about 70% back to normal (with a day or 2 off) but only having 1-2 BMs a day. The rule of thumb is not to treat unless symptoms right? Would u all consider this symptoms. Ever since i started the Florestal again my symptoms have improved a lot. But now I just dont know what to do... almost wish i didnt get tested because I have feeling better. Not 100% but a lot better than 2 weeks ago. I asked the nurse if the toxins were positive or just the antigens and she said the doctor would call me back so I will wait to see what he says too. Thanks in advance all....

beth22
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Re: is this a relapse? :(

Postby beth22 » Sat Jun 16, 2018 1:32 am

If only a PCR was done, ask to have it followed by an EIA or re-test to see if it is still positive. Did you tell the doctor you were better? If not, do so.

georgina
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Re: is this a relapse? :(

Postby georgina » Sat Jun 16, 2018 11:05 am

At this point is more your decision whether to treat or not . If you feel like your symptoms are subsiding and your BM's are starting to take form you should hold back on treatment . Treatment should be based on symptoms+ positive test result not just test result. Though i would go and pick up that prescription for just in case things go south , because we all know that with Cdiff things can go south very fast and you can get very very sick , so filling the prescription will come in handy in case that happens.


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