I am terrified!

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tessa63
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I am terrified!

Postby tessa63 » Fri Apr 01, 2016 2:08 pm

So most of you know I have been off of Dificid for over 3 months and had been doing very well with 1 BM/day, lots of energy, but eating a limited diet. Everytime i have tried to eat out (just a few times) I had colon pain for a few days after but no D. Last week, I was feeling so confident that I ate out and ordered Salmon, risotto and grilled asparagus. I had noticed some B in my formed stool the next day but just assumed the asparagus irritated my colon. A few days later in happened again and it was frank B and seemed to come out at the end. I called my ID doc at Penn and my colo-rectal doc who thought it could possibly be an internal hemorrhoid. Both doctors thought it was highly unlikely that it was C Diff again. I also made an appt with a new GI per recommendations from the colo-rectal doc because he said the hospital this GI doc was associated with has the pills? for fecal transplant. My appt is 4/11 but in the meantime, today I had a liquid stool w/B and M so I drove it to Penn to get a C Diff test. My ID doc insisted that we do a C Diff toxin Assay as he said other tests show colonization and we don't want to over treat. I am now waiting on the test and haven't eaten anything but a banana today. In January my ID doc did said that I should get a colonoscopy due to the amount of B Bm's I had during C Diff and he thought there may be a UC component. I don't know what to think anymore.. I just feel incredibly depressed and almost numb. How could I go 14 weeks off of meds, feel great, have formed Bms and have a complete turn around after eating grilled asparagus?? It was last Tuesday, before Easter. Also I had some wine on Easter and ate a little out of my comfort zone. ... I just needed to vent because I can't believe this is happening. I have had formed BM 1 x day for months now. I have also been working out 4x/week with lots of energy. UGH!!!!

T

tessa63
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Re: I am terrified!

Postby tessa63 » Fri Apr 01, 2016 4:44 pm

so the doctor just called with the test and the toxin test was negative but the GDH and PCR were positive. He said its either very early
C Diff or that I have some sort of IBD and need a colonoscopy soon. He is not going to treat the C Diff unless I start with WD. I hate the idea that my PCR was positive but its the toxins that are important correct?

T

beth22
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Re: I am terrified!

Postby beth22 » Fri Apr 01, 2016 5:40 pm

Yes, it is the toxins that are important. I have had positive tests and did not treat. Funny you should mention salmon. I had that last week and got sick from it. No D, but other symptoms. I thought maybe it was an allergic reaction, but two days later I got WD and then B and wound up in the ER. All my tests were negative. I don't know if I got food poisoning or a virus or what it was. I also have pancreatitis, so that kind of complicates things. The GI told me that he has had many calls in the last week of WD, so there is a virus going around. I only took Pepto Bismol the day it happened and not since then. But, when I had positive c diff without the D, I took small amounts of Pepto and it helped get rid of the M.

tessa63
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Re: I am terrified!

Postby tessa63 » Fri Apr 01, 2016 5:52 pm

Beth

So you have had +PCR and GDH and negative toxins? I had one liquid BM today with B and M but haven't gone since. I do feel gurgly but still have lots of energy. Yesterday I did 2 workouts at the gym just to keep my mind of things. Today I cried most of the day. I don't know what to think anymore. I just went around bleaching my house all over again because I had become a little lax. I also drank some enteragam just in case. Are the toxin tests accurate??

T

zinnia1
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Re: I am terrified!

Postby zinnia1 » Fri Apr 01, 2016 6:37 pm

tessa- I am near Penn too. I had positive toxin test when the sale started a year ago, but since then the gastro I used/switched to has only wanted a PCR one swab test and I have been negative many times. I was sure in had a relapse a while ago (well many times) when I ate chicken soup from a deli for three days- that turned out to have a pretty intense onion base. I was sick for about 10 days.... I am also having a "routine" colonoscopy hopefully in a couple of weeks.

tessa63
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Re: I am terrified!

Postby tessa63 » Fri Apr 01, 2016 7:44 pm

It took me awhile to get to Penn this AM and I am concerned that the stool was in room temp for a few hours. Should I be feeling positive at all that the toxins were negative? I had only 1 BM today but it was liquid with M and some B. Its the B that scares the heck out of me. I just feel so confused at this point and am scared to death. Why would C diff return after 3 months? I thought the toxin test was not as accurate. Can someone please explain?

T

ResearchGrandma
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Re: I am terrified!

Postby ResearchGrandma » Fri Apr 01, 2016 8:06 pm

Yes the toxins are proteins and there can be proteases (enzymes that break down proteins) present in stool. So it is posible that you got a false negative. It is a good idea to transport stool samples in a cooler. I usually freeze tap water in a used water bottle. I keep the container with the stool sample in a zip-lock bag, and then both the zip-lock bag and frozen water bottle get put in 2 plastic grocery bags, which then go into the cooler (trying to keep the cooler from getting contaminated). After I drop off the sample I throw the bags and frozen water bottle into the nearest waste bin.

tessa63
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Re: I am terrified!

Postby tessa63 » Fri Apr 01, 2016 9:04 pm

zinnia

My pcr was positive so how is it different than the one dip test? Where is your new GI located?

Research G... that scares me even more..

t

susant
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Re: I am terrified!

Postby susant » Fri Apr 01, 2016 10:40 pm

Is this the first time you've tested since dificid?

Bobbie
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Re: I am terrified!

Postby Bobbie » Sat Apr 02, 2016 1:23 am

Agree with Research Grandma.

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

Sterile container, keep refrigerated, labeled.

beth22
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Re: I am terrified!

Postby beth22 » Sat Apr 02, 2016 2:19 am

I was positive a little over a year ago with PCR, after having been negative for 4 years and also on the toxin test. GI ran both. However, I never got the full blown symptoms, so I guess it was low grade. I did not treat with antibiotics. That time, I did do 3 home FMTs and I have not tested positive since.

Before that, I had positive tests, both PCR and toxin and only treated with Pepto and it too, never developed into a full blown infection. You can check with your doctor about taking Pepto Bismol. That is what I was told to do.

tessa63
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Re: I am terrified!

Postby tessa63 » Sat Apr 02, 2016 9:56 am

Susan-- no I have not been tested since the Dificid. I had a PCR neg test between vanco and dificid but I had only been off vanco for a few days. Right now I am not having WD and I am not convinced the smell is the classic C Diff smell. The little bit of B is concerning so I am going to get it checked out. The ID doc told me to go to ED this weekend if I have BD and to start Vanco (which I have) if just WD. If neither happens, I am going to see GI next week to talk about a scope.
http://www.medscape.com/viewarticle/850855-- I read this article and I would like to believe the toxins were negative. I cried all yesterday and had to take anti anxiety last night just to sleep. My S is graduating college in May and I have to travel 6 hours to see him. I need to get healthy before then and I hate this horrible bacteria that is ruining my life this year. Bryn Mawr Hospital in PA apparently has pills for C diff. Can anyone comment on them?

T

NanciT
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Re: I am terrified!

Postby NanciT » Sat Apr 02, 2016 12:23 pm

Hi Tessa,

I can really feel your frustration.....having important events coming up and just wanting to be rid of this once and for all....I have been there and the anxiety it causes is terrible. I believe a few here have tried the pills, it is something my GI considered if it came back with me post Keflex for a UTI. She had planned to investigate more but it did not return.
It might be better to start a new thread asking opinions about the pills, you may get more response.
Hope you feel better soon
NanciT

tessa63
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Re: I am terrified!

Postby tessa63 » Sat Apr 02, 2016 12:32 pm

Thanks Nancy

Right now I want to confirm what is actually causing the blood first and if C Diff is the culprit I will ask the GI at Bryn Mawr about the pills. I am not in pain and just have a few gurgles. I had a soft BM this am and not really W. I don't want to start the vanco and wipe out my flora just because my PCR was positive. Until I have real symptoms, I am going to believe the toxins were negative. I will see doc early next week I hope. Would you start the Vanco??? Im not asking for medical advice as I already got them from my physician, but I would like to know your opinion. If things get worse this weekend I will go to ED or start the Vanco.

T

NanciT
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Re: I am terrified!

Postby NanciT » Sat Apr 02, 2016 12:49 pm

Tessa,

Just looking back on my experience, my GI would not test but he also did not explain the severity of Post IBS I might have. Therefore, although I went up to 3 wks and then developed symptoms, I look back and wonder for myself if I really had active CDIFF back. I was on treatment for 10 months, he did not do FMT's and at the time I could not find anyone who did. I eventually did but it was a four month wait and I had been put on a long DIficid taper out of desperation.
If it were me, I would not treat unless I had watery D and I have actually had watery D for 3 days since...and tested negative( I have a new GI now).
I am glad you are following up on the B. I also developed a fissure during this time and had it checked out which was causing the B with me, it is always best to get that checked out.
We can't advise but with my history, I wish I had known what I know now. The post IBS has been tough for me to recover from due to the length of time I was treated. I am now 16 months out but still dealing with IBS on and off.


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