Starting to feel that I can't beat this

Veteran support board users and new posters - use this forum to talk about whatever you want. Topics may be C. diff. related but are not required to be. Post here about posters' birthdays, holiday greetings, vacation plans, etc. If it doesn't fit in another forum, put it here.
jw81
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Starting to feel that I can't beat this

Postby jw81 » Tue Mar 15, 2016 2:02 pm

I am a 34 year old father who has been very healthy my entire life but now have had C. Diff for the last three months. I apparently got C. Diff. after being on antibiotics for a sinus infection back in November. Since then I have done 2 runs of flagyl and 1 vaco in pill form. After completing the vaco ( third treatment) I started to feel better though I still had a little pain and could not stomach everything. I called the GI and she told me that I didn't need to retest unless I started having major symptoms again so I took her advice. Fast forward six weeks and I decided I needed a test for my own satisfaction and it still came back positive even with little symptoms. I won't lie as I am starting to get very depressed and feel this may be it for me :(. I so desperately want to live a normal life again. Just today my GI decided to put me on a Vaco liquid taper that is supposed to last 28 more days. I pray to God this works because I feel like this horrible disease is destroying my life around me. If not I will have to go the FMT route but I suppose there are no guarantees there either. Has anyone had success with the Vaco liquid? FMT?

Lisa33
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Re: Starting to feel that I can't beat this

Postby Lisa33 » Tue Mar 15, 2016 2:42 pm

Moved your other post here, as it was a response on an older post. It's basically the same question, so you will get answers all on this thread.

Re: Should you test to see if your cured?
by jw81 » Tue Mar 15, 2016 1:45 pm
I have had C. Diff for over three months now and am still postive. I have been on flagyl twice and vaco once (i am about to start another vaco taper). After using the vaco I felt much better but could only stomach certain foods. My nurse told me I did not need to test again if I felt better so I reluctantly took her advice. Six weeks later I decided to get tested again because I just didn't feel 100% still. Sadly, I found out that I was in fact still positive even though I felt pretty good and could tolerate many foods. I would say test no matter what.
jw81

Lisa33
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Re: Starting to feel that I can't beat this

Postby Lisa33 » Tue Mar 15, 2016 2:58 pm

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.
“Doctors” lists physicians our posters recommended and also a worldwide list of C. diff. specialists with contact information. (Many perform FMT's.) See the forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.
The majority of patients (about 70%) recover with one to two rounds of Flagyl, vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. 20l6 will be a year of many advances and HOPE.
Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.
For more information, see other support groups including http://www.peggyfoundation.org, Clostridium Difficile Infection (CDI) Support Group, FMT Discussion, Fecal Transplant Foundation, C Diff Foundation, and the UK Support Site. There is also information on some of the better medical sites like Mayo's, Medscape, and WebMD, and the CDC website. Don't use "Dr. Google" to diagnose yourself.
This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. The best protection for you and others is thorough hand washing (soap and water are preferable) and good hygiene by you, those around you, and your health care providers.
No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it is.
Again, welcome. Remember, the odds are in your favor. (End of letter.)

Welcome to the site, jw81, but so sorry you have been suffering with c-diff. I hate to say it, but your nurse was right. The proper protocol is not to test for a cure, but treat based on symptoms alone. This is to avoid over-treating. However, many doctors do retest still when it comes to possible relapses. In your case, although you tested positive, you were not having the typical c-diff symptoms still. Was your test positive for the toxins? I ask this because you can still test positive by PCR for quite some time after an active c-diff infection. It is possible that you were colonized and did not have active toxins, therefore treatment would not be necessary. If you were positive for the toxins, then that's a different story. Some posters who have had mild symptoms with a positive test have chose not to treat and tested negative later on. It can take quite some time to feel a sense of normalcy after c-diff and meds. The real healing starts to take place after you finish the meds. Are you taking any probiotics. Many of us take VSL-3 and Florastor. The probiotics will help to restore good gut bacteria and ward off c-diff. VSL-3 is a live lactic acid bacteria and Florastor is a yeast probiotic called Sacchromyces Boulardii. Meds will kill off live bacteria probiotics, so they should be spaced apart from the meds. Yeast probiotics are not killed off. Many also drink a probiotic drink called Kefir. I relapsed on Flagyl, was put back on Flagyl, but could not tolerate it at all. I was then switched to vanco in the oral pill form. A 14 day course of vanco cured me. However, recovery was a rollercoaster ride from hell. I thought I was relapsing many times. The symptoms that you describe are not abnormal for early recovery. Many of us, including myself develop post infectious IBS, which present similarly to c-diff. See CDI Info- 3 Day Rule IBS under the Board Index. Many also develop food intolerances. Some become lactose or gluten intolerant. Loose, frequent stools can last a while. It took me 8 months to have just 1 BM per day. As long as it's not frequent watery D (more than 3 times) with the urgency to go and just feeling unwell, it's probably recovery. Your gut and colon need to heal after fighting an infection like c-diff. I hope this round of vanco does the trick and you can start to heal. There are many posters who have been cured by Dificid after Vanco tapers have failed. And then there is always the FMT, which has the highest cure rate after several relapses on meds.

But remember, don't be discouraged if you don't feel 100% after finishing meds. Almost nobody does. It takes time to get back to normalcy. And you may actually have a new normal after this ordeal. I certainly did. I also wouldn't get too caught up on testing, but rather on how you feel. You don't want to over-treat or unnecessarily treat.

I hope you feel better soon. You will get rid of c-diff!
Lisa

roy
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Re: Starting to feel that I can't beat this

Postby roy » Tue Mar 15, 2016 5:15 pm

C.diff can be part of the normal gut flora.
Thats one reason they dont test to see if its gone.
Its only a disease if it overgrows and causes symptoms.
If theres no real symptoms a Dr should know not to treat.
I like your first Dr that said dont test.
A lot of posters and at least one moderater tried to treat asymptomatic c.diff and ended up sicker than when they were diagnosed.

Bobbie
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Re: Starting to feel that I can't beat this

Postby Bobbie » Tue Mar 15, 2016 10:43 pm

See CDI - C diff Testing and Diagnosis.
viewtopic.php?f=4&t=135#p42285

Most recent info is last. Most experts treat on symptoms as some test positive for some time after active c siff is over. In particular, see what the expert I quoted said.

Agree with Roy and others, I would call your doc and suggest waiting awhile unless your symptoms become worse.

TowerL
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Re: Starting to feel that I can't beat this

Postby TowerL » Fri Mar 18, 2016 8:58 am

I know it's hard not to want to retest, a negative test eases so many fears of contamination. After my last vanco dose it took another two weeks with three probiotics daily before I felt normal to some extent. IBS is very common after and you may have to alter your diet. I still eat primarily my safe foods but have slowly expanded to include more. There are trigger foods that may make you feel like cdiff and it's just IBS.

Nothing is certain with this but most docs agree don't retest without symptoms for a good while.

jw81
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Re: Starting to feel that I can't beat this

Postby jw81 » Thu Mar 24, 2016 5:17 pm

Thank you everyone for the encouraging replies. I can't express to you how much better I feel just from reading your replies. I suppose now I wonder if I might be okay and just going through a typical recovery? How does one truly know if they are clear or not if the tests are somewhat unreliable. Anyway, I have already started the 28 Vanco taper and suppose I will finish it and go from there.

beth22
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Re: Starting to feel that I can't beat this

Postby beth22 » Fri Mar 25, 2016 1:16 am

That's all you can do. Take it one day at a time. Hopefully, this will do it for you and if not, there are other treatments. Eventually, you will beat this, hopefully sooner rather than later.

dessay13
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Re: Starting to feel that I can't beat this

Postby dessay13 » Fri Apr 15, 2016 9:59 pm

Hi everyone-

I'm new to the board today. I'm a 42 year old female who caught C Diff in the hospital after hip resurfacing. I've gotten a ton of comfort from this board- I'm on my first course of Flagyl and of course, I'm very scared. Just taking it day by day.

But I wanted to offer up something- I saw my GP yesterday, and he's up on most of the research. He's echoed what many here have already said- you can't really chase a negative test result- we have to go by the absence of symptoms. But he also said that you can test positive for 6-9 MONTHS after infection, which is a good deal longer than some here are saying. Just thought I'd share, and if it's really that long, that maybe we're (myself included) too hung up on reassuring "official" testy stuff. :) I know I have a ton of anxiety about this, and I'm one who tends to dwell on things, though I try not to. My GP told me his lab won't even test for CDI unless the sample is WD.

Anyway, I'm so glad I found this board, I'm getting a lot of strength and hope from it. Cheers!

Cara

beth22
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Re: Starting to feel that I can't beat this

Postby beth22 » Sat Apr 16, 2016 12:52 am

We have had some posters that tested positive even for a year, but did not treat, so 6 - 9 months is not unusual. Even if a person tests positive, without symptoms, it is not necessary to treat and can even cause a relapse.

georgina
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Re: Starting to feel that I can't beat this

Postby georgina » Sat Apr 16, 2016 12:54 am

Hi Cara
Welcome to the site but sorry you are dealing with Cdiff , be sure to read the first forum.
Belive me , we all know how scare you are , nobody understands better then someone that had to deal with this.I ended up with Cdiff one year ago.Like you , i was put on metronidazole , but sadly for me it didn't work and actually it made me sicker then Cdiff but hopefully it will be your magic bullet , remember 80% of people reciver from the first or second round of meds.To help prevent relapse you can ask you doctor for some probiotics , they "can't hurt , might help".I've found saccharomyces boulardii to be most effective for me.
I wish you a speedy recovery!

dessay13
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Re: Starting to feel that I can't beat this

Postby dessay13 » Sat Apr 16, 2016 9:33 pm

Hi beth and georgina-

1 year- I'll tell my GP. I'm sure he won't be surprised.

Georgina- my Mom is an RN and recommended Florastor probiotic, so I've been taking that. Praying that I don't relapse. But if necessary, I'm already looking ahead. Edward Hospital in Naperville does FMT via colonoscopy and I'm in the Chicago area.

Does anyone know if hip replacement is a contraindication to FMT? I guess its good to be prepared.

All best to you-
Cara

georgina
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Re: Starting to feel that I can't beat this

Postby georgina » Sun Apr 17, 2016 12:18 am

I don't think that anything can contraindcate FMT , other then colon or rectum surgery or having to be on antibiotics ( you can't take antibiotics and do at the time the FMt , as it will ruin your starter culture).
Prayers you don't relapse.

Drm
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Re: Starting to feel that I can't beat this

Postby Drm » Sat Jun 25, 2016 1:21 pm

I have only been battling C-diff for about 2 weeks and I already feel like I can't beat this. When they switched me from Flagyl to Vanco I was excited and thought I would move past the nausea, but that hasn't happened. I seem to be struck ill everyday for at least 5 hours. Even the nausea meds just take the edge off. My weight is dropping and I am doing all I can to try to maintain with ensure and food as tolerated. This is a nightmare. Someone told me when I had salmonella (which started this nightmare) that I was lucky it wasn't c-diff and now I know why they said that. Truer words were never spoken. This is hard. REALLY hard! But we are going to make it through this. I am glad we are able to support one another and remind each other that we are not alone.


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