New, Scared

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darkside
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New, Scared

Postby darkside » Thu May 10, 2018 5:40 pm

Hello,

I'm 31 and was recently tested positive for CDiff after a hospital stay from a post EGD bleed. I was not on any long course of antibiotics but was on a high PPI dose to help a resection site in my stomach heal.

My primary care doctor said I was "antigen positive, toxin negative"... My initial symptoms were loose stools several times a day a few days after getting out of the hospital and cramping.

I started Flagyl and had formed stools every day (once a day) since the day after starting Flagyl until the last day of my Flagyl (2 days ago) on which I started having more cramps and loose stool again. I got scared and went to the urgent care and explained my situation to them and they prescribed me Vanc. I am scheduled to see my usual GI doctor next week.

I have not started the Vanc yet because I was waiting to see how the symptoms progress after finishing the Flagyl. Yesterday I had 3 BMs, the first was fairly normal... then 2 looser ones, though not watery - I also had just general crampiness throughout the day. Today I have had 2 BMs, same story... first one pretty much normal, and second one a little looser. Again, cramps, feeling of fullness, gurgling this afternoon as well. While sleeping and first thing in the morning I generally feel pretty fine. But a few hours after waking up I will have the first BM and cramping will start.

I was taking Culturelle most of the time I was on the Flagyl, but switched to Florastor yesterday. It's still not totally clear to me if I still have CDiff or my gut is just out of whack from the treatment... So, I am kind of in limbo not sure if I should go ahead and start the Vanc while my symptoms are still fairly mild compared to some. I'm leaning towards the Flagyl not knocking out the CDiff entirely... but just don't know what to do... I may wait one more day and see how things go.

Overall, my appetite is pretty fine. I haven't had any fevers. My white blood count was 7k yesterday so that is not elevated either.

On top of this, I was a *severe* hypochondriac before all this happened. As in, have been in therapy for hypochondria. I am terrified of this infection. I'm worried I won't respond to anything. The antibiotics will fail, any future FMT will fail, etc. and I will eventually die from this. It's over-taking my brain thinking about it. What if that happens? Do most people find something that works. What if I get to the point of FMTs and they keep failing? I just worry I will eventually die from this and won't be able to beat it... :( I have a young family and don't want to leave them behind.

Thankfully I am in a position where I can pay for any treatment necessary, even flying somewhere for FMT if necessary.

roy
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Re: New, Scared

Postby roy » Thu May 10, 2018 6:20 pm

"My primary care doctor said I was "antigen positive, toxin negative"

That's a negative test result and your Dr should have known that you did not need treating!

There's many types of c.diff, half of them are harmless, but the antigen test detects all of them. (so does PCR)
They follow up the antigen test with a toxin test to see if its one of the disease causing strains but if that's negative you don't have c.diff as a disease.

darkside
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Re: New, Scared

Postby darkside » Thu May 10, 2018 6:27 pm

Thanks for the response, Roy.

Maybe you can help me understand. From what I have read, there is a toxin test that is only about 75% effective. Isn't it still possible that I could test negative on that and have active disease? I thought you needed 3 negative tests to confirm it is not present? I'm still new to all this, sorry.

Ril
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Re: New, Scared

Postby Ril » Thu May 10, 2018 8:16 pm

Hi Darkside and welcome to the site. Please read the first thread on rules for posting.

Roy is the real expert here on test results and what they mean so I will let him clarify if my explanation requires help, but I believe that the 3 test thing is a very old outdated thing and not required for a long time. Tests are more accurate today. If toxins are negative that means there are no “poisons” being excreted c diff bacteria therefore no disease.

Please put your mind at ease.
Rita

darkside
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Re: New, Scared

Postby darkside » Thu May 10, 2018 8:22 pm

Thanks for the response. That's interesting. Will continue to monitor symptoms and thank you for your time. Will look forward to see if Roy has anything else to contribute. I truly salute all the people here who have stuck together and encouraged each other around this difficult infection.

I guess my main question is I don't know if the hospital I submitted my sample to uses the accurate NAAT testing or an older method that isn't as accurate?

roy
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Re: New, Scared

Postby roy » Fri May 11, 2018 4:16 am

The older tests are not used anymore, they were more expensive and unreliable, testing has improved a lot singe then.
To diagnose c.diff the Dr must first suspect it because of symptoms, the test is only to confirm that diagnosis.
If the test is negative but symptoms continue the guidlines say retest after 7 days, labs are supposed to reject test requests that are made sooner than that.
The 3 samples routine is at least 10 years out of date.
If symptoms demand it ask for a retest but c.diff is considered a normal part of the gut flora unless it causes symptoms (D).
A Dr should suspect c.diff if there's 3 or more liquid stools a day, emphasis on "liquid".
Anything other than that means that even if you test positive your body is doing it's job and dealing with c.diff exactly as nature intended and it does a MUCH better job than any medication can do!

darkside
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Re: New, Scared

Postby darkside » Fri May 11, 2018 11:03 am

Wow, that's interesting. Was not aware of that. Even at smaller hospitals?

I have only had 1 (mainly formed) BM this morning but still a little crampy and gassy like I have been the last few days. Not sure what is going on. I feel like I may have to go again sometime today. Still taking the Florastor morning and evening. I was off probiotics entirely for a day or two this week and that didn't seem to make a difference so not sure if that is causing it. I could try that again but scared to stop if I do actually have CDiff.

Update: I did end up having another BM this afternoon. It was pretty much formed and normal looking for me... though I never went more than once a day before all this started. Definitely not 3 times a day like yesterday. Still having some gurgling and gas. The mental / anxiety aspect of this is really troubling. Not knowing if I'm better or not. Not even knowing if I have CDiff at all or not. :/ ... I do wish I had more information on what kind of test was used by the hospital so I could be certain it was the newer, more accurate test for toxins.

Ril
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Re: New, Scared

Postby Ril » Fri May 11, 2018 4:54 pm

You are obsessing and looking for trouble.
Read old posts about recovery and how people feel after c diff. Their bm’s are what we have described as a “new normal”.

Even small hospitals do not use the outdated tests. Sometimes you have to believe the test results, especially when your symptoms support that you are getting well. You do not have symptoms of c diff.

darkside
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Re: New, Scared

Postby darkside » Sat May 12, 2018 7:23 pm

Another thing that concerns me is I read many stories on here of people saying they never had watery D... just some cramping and going twice a day or so. That sounds a lot like what I’m dealing with. :/

I went once today so far but think I’ll have to go again. It was formed. I can’t say my symptoms have really gotten any “worse” the last 3-4 days but they are about the same. 2-3 trips to bathroom and basically formed stool. Also some gas.

roy
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Re: New, Scared

Postby roy » Sat May 12, 2018 8:08 pm

What you read on sites like this are people's personal non medical opinions, none are experts and c.diff might not be the only cause of what they describe.
A lot of posters are like you, worriers! and write about their positive tests without classic symptoms and get treated by their inexperienced Drs because of it.
Medical sites/expert Drs would not agree that c.diff causes anything except Watery D.
Measels causes spots, C.diff causes D!
On the rare occasions that it causes constipation (illius) the sufferer is severely ill and close to death, it's unmistakable and not the same as ordinary constipation.
It follows after many weeks of severe c.diff symptoms.

Lisa33
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Re: New, Scared

Postby Lisa33 » Mon May 14, 2018 9:24 am

I also agree with the others that you do not sound like you have an active infection. I wouldn't start the vanco without having the copious, watery D. The meds will only prolong healing and wipe out even more good gut bacteria. Formed stool, even though multiple times is not a symptom of an active c-diff infection, but more a symptom or normal recovery or Post infectious IBS. I think every one of us could say that we went a lot more than prior to c-diff. We all had new normals after.

Good luck to you and try not to worry. No D is good news!
Lisa

darkside
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Re: New, Scared

Postby darkside » Mon May 14, 2018 10:21 am

Thanks for the advice. It's all so confusing to me, especially as a hypochondriac.

Yesterday I only had 1 BM, and it was semi-constipated at that. I still had some cramping and gas yesterday. Today I have already had one BM... kind of thin and hard to pass, but formed in general. And, again, soon after the BM, the mild cramping starts. It's so frustrating feeling like I am in limbo and not knowing if anything is wrong with me or not. :/

The thought of the next BM just consumes my thoughts all day.

roy
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Re: New, Scared

Postby roy » Mon May 14, 2018 10:32 am

What you describe is nothing like c.diff!
Your using "constipation" wrongly as well, if your going daily your not constipated.
Pain killers can cause constipation though so be carefull.
To answer your next question, pain meds would not mask the D caused by c.diff!

darkside
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Re: New, Scared

Postby darkside » Mon May 14, 2018 2:00 pm

Ugh, today is maybe the worst yet for just the general crampiness feeling. Have had 2 BMs now... both basically formed... just a lot of small, thin pieces... but formed. Somewhat hard to pass.

I'm really on the fence about starting the Vanco. On one hand I really do feel like something is wrong, but on the other I don't want to wipe out my gut flora all over again. I'm not taking any pro-biotics beginning today so I can see if laying off of that helps some. I took a little bit of fiber as well to try and bulk things up a bit.

I'm worried I'll never feel better and will need a lot more treatment. Perhaps the cramping is because CDiff has severely inflamed my colon? Couldn't the reason I'm hearing gurgling and having some cramping is because of the toxins attacking my colon?

beth22
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Re: New, Scared

Postby beth22 » Tue May 15, 2018 1:50 am

My doctors told me not to treat unless I got D. When I was first diagnosed, I did not have watery D. Just had loose stools, but a LOT of M. I treated with vanco and I am sorry I did. I got worse and then I really did get true relapses with all the symptoms. I would call your doctor and voice your concerns, but ultimately you are the only one who can make the decision.


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