Relapse after 17 months?

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cryingsilly
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Relapse after 17 months?

Postby cryingsilly » Sun Feb 07, 2010 8:23 pm

Was just wondering if anyone had experienced a relapse of C. diff without having taken antibiotics.

I have been having lower right quad pain (I do not have appendix) for 10 days. Went to gyno to check for cysts, no ovarian problems.

Have had loose stools, with that tell tale C. diff odor.

Needless to say, I am not excited :(

Just thought I would ask if anyone had gone a year and a half and then had a spontaneous relapse without taking antibiotics.

My initial c.diff infection was brought on by clindamycin and lasted 7 months.

Thanks for your help!
Darlene

Justmyluck
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Postby Justmyluck » Sun Feb 07, 2010 8:56 pm

Maybe you are just having a bad month. Although not impossible, it's unlikely it's c diff again. I've had many scares since being cleared for 3 years. It could be IBS, i hope you start feeling better soon. Keep up on the yogurt and probiotics.

Vikingjeff28
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Postby Vikingjeff28 » Sun Feb 07, 2010 9:46 pm

I went 9 months, took no antibiotics, relapsed and have now relapsed 2 more times since that one. I originally got C diff in Sept 08, cleared in December 08, relapsed Sept 09.

cryingsilly
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Postby cryingsilly » Sun Feb 07, 2010 10:22 pm

Crazy stuff!

I have been having lower right quad pain now for about 10 days, I don't have an appendix.. am having c.diff stools.. sort of. The smell is there, the ribbon quality.

I've been in sort of denial until I read an article that stated c.diff that occurs in the cecum tends to not cause D.

Sigh. Just the thought of going in for stool tests and all that junk makes me weary. I have been feeling EXHAUSTED and achy too for the last 2 weeks.

Will keep you guys posted.

I cured myself 17 months ago with stool transfer enemas that I did at home. I suppose at least this time I know what to do!

Darlene

anlockwood
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Postby anlockwood » Sun Feb 07, 2010 11:21 pm

VikingJeff,

Please know I mean absolutely no disrespect but I think your case is a little unique in that you take PPI's and this could have been the reason you relapsed after such a long period. Dr Borody feels very strongly these can lead to c diff. Once again, absolutely no disrespect, I just worry about others thinking that they could relapse at any point for absolutely no reason. It sort of takes away the peace of mind many get from the 90 day rule. I know it is possible that someone could relapse at anytime but the likelihood after the 90 days is like 1% and after 6 months is probably like .01%. Very very low. I think you are amazing VikingJeff for all the help and support you provide to everyone on here all while you are fighting your own battle!

Sincerely,
Amanda

Hua Kul
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Postby Hua Kul » Mon Feb 08, 2010 1:53 am

From what I've read the signs of a cecal cdiff infection include lower right abdominal pain, fever, nausea, but diarrhea in only 6% of cases. I believe my elderly father-in-law had that as those were his exact symptoms and he was helping to care for my wife, who had recurrent cdiff. He ended up in the hospital with severe "congestion" (water retention and swollen organs) but was never checked for cdiff. I believe his congestion was due to a robust immune system response called a cytokine storm, which can produce the water retention. He is now doing fine with no sign of cdiff but spent a couple of weeks in the hospital due to the side effect. Darlene, your exhausted and achy feelings could be a result of your immune system fighting off an infection, the same type of response which can happen with flu, for example (this is NOT medical advice, only my own speculations).

You mentioned a home stool transfer by enema. I don't know if that would reach up to the cecum (but again, I am only speculating).

God Bless,
--Hua Kul

Vikingjeff28
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Postby Vikingjeff28 » Mon Feb 08, 2010 5:46 am

I understand, no sweat. I have been reading more and more of people relapsing for no apparent reason and even healthy people who have not been exposed to antibiotics or C Diff in hospitals getting C diff and Dr's do not know why? They said within last few years this is new phenomenon and they were not on any medications at all and contracted C diff. This is one weird, strong bug.

Kathy George
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Postby Kathy George » Mon Feb 08, 2010 5:02 pm

Amanda, You stated that Dr. Borody feels PPI's can cause C-Diff...... I don't want to sound ignorant, but does that stand for Probiotics???
I ask not for a lighter burden, but for broader shoulders.

Vikingjeff28
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Postby Vikingjeff28 » Mon Feb 08, 2010 5:13 pm

PPI's are proton pump inhibitors. Anyway, just got back from ID doc, first visit. Very nice guy but I know as much about C diff as he does(thanks to this site). One interesting thing, he has 6 other patients now that he is treating for relapsing C diff and he said he has success with (4) vanco a day for two weeks then he jumps right to 1 every other day for 6-8 weeks and if relapse on that back to 4 a day until under control then back to every other day. The thought is that once you blast them for 2 weeks they sit idle as spores(we all know that) and one every other day will coax them to germinate quicker. It takes like 24-72 hrs for them to germinate so he thinks this is quicker method. He told me to finish my reg taper and when I go to pulse to try this next. We will see....

Mommy23
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Postby Mommy23 » Mon Feb 08, 2010 5:58 pm

Darlene,
I'm praying for you, hope this isn't relapse....that would be so strange after such a long time.

Laurie

cryingsilly
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Postby cryingsilly » Mon Feb 08, 2010 8:24 pm

thanks for the support everyone, and thank you for your prayers Laurie!

I went to the doctor this morning. She verified the lower right quadrant tenderness. I left a stool sample, will know in the morning if it is positive or negative. I did tell her that I had 3 negatives prior to my positive before.

And yes, she is thinking cecal colonization.

Her feeling is that it is c. diff. This could be because I am the 4th case this week. 2 of the others did NOT take antibiotics prior to coming down with c. diff. It is becoming near epidemic now, community acquired c. diff is happening more and more.

Its just a wait and see. I am taking tons of probiotics and trying not to freak!

I am currently in school to get my Bachelors in Nursing. This is causing some serious trouble. I am just so tired :( I am thinking about dropping a class or two to see if I can keep up.

I also do not have insurance, have an unemployed husband, and am living off of student loans. My doctor is going to check into how I would go about affording Vanco.

Scary!

Will keep you updated.

Darlene

anlockwood
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Postby anlockwood » Mon Feb 08, 2010 8:42 pm

Darlene,

There is a program to get your vanco free from the company. You dr sends in the form to them and they send the vanco to your dr. Here is the link. http://www.viropharma.com/products/pati ... ogram.aspx Try that. Also you can use liquid vanco for much cheaper. It is just the iv powder that gets mixed with sterile water. Works just as good as capsules, some even believe it works better. There are instructions for it under treatment or FAQ.

Amanda

Mommy23
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Postby Mommy23 » Mon Feb 08, 2010 11:11 pm

Darlene,
The liquid vanco is way cheaper something like $70.00 for a couple weeks supply in contrast to over $1000. That will be my next route too.
Hugs,
Laurie

Kathy George
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Postby Kathy George » Tue Feb 09, 2010 10:13 am

CryingSilly, Have you been checked out for Diverticulitis. I have had several attacks which causes pain in the extreme lower part of your stomach. The pain is usually the left side, but during my attacks it was the whole bottom of the stomach. Just something to run by your doctor.
I ask not for a lighter burden, but for broader shoulders.

cryingsilly
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Postby cryingsilly » Fri Feb 19, 2010 6:59 pm

Well, here is a little update.

I have had a CT scan with barium contrast which showed absolutely nothing.

I have had further c.diff tests which continue to come back negative.

My physician said that if it were c.diff and if it was causing this much pain, that we would see thickening of the cecum. I am not so sure. I have had no fever, no raised WBC, a slight viral shift in my WBCs. So nothing bacterial I think. With C.Diff, if I have had it for over 3 weeks now, you would think I would have at least a low grade temp. Especially with this much pain. I did not ever have this much pain when I had c.diff before.

I have had constipation. The pain is worse after bowel movements.

I went to my physician yesterday and he told me he thinks i have a very very small hernia in my abdominal wall in that area and that the area is inflamed.

I have been prescribed alleve 2 in the morning 2 in the evening to reduce inflammation.

I am at a loss, just really really tired of being in pain.

Darlene


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