Two Relapses in 6 Months (3 times total)

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gflong
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Two Relapses in 6 Months (3 times total)

Postby gflong » Mon Mar 12, 2007 10:43 am

I have had longstanding IBS issues (lifelong) and was born with an imperforate anus which was repaired at birth. I have had more than 15 bowel obstructions throughout my life. Last Aug (8/6/06) I was diagnosed w/c-diff after severe colitis attack that included bleeding from the rectum.

Since then I have relapsed twice. This last episode I had bleeding and colitis again. Was started on Vanco for 14 days, then started on Flagel 500mgs 3 x's per day for 14 days and am now tapering off on 250mgs 3 x's per day for 10 days. I have 3 days left on this course. Still experiencing symptoms, including cramping and diarhea that were characteristic of my previous bouts and I'm not even off the Flagel. I gave a sample on 3/5/07 (one week ago) which tested "negative" for the toxin.

Should I be concerned? Does testing negative for toxins A & B necessarily mean you are free of the bug (but not the spores)?

Also, has anyone heard of C-Diff patients having had C-DIff for years without being diagnosed or having a colitis episode? In other words is it possible my IBS symptoms were really moderate C-Diff symptoms and that I was not properly diagnosed? (They did not take samples prior to Aug).

Finally, should I be careful about visiting my elderly parents? Is there a significant risk that they could contract it from me?

Any info on relapses would be greatly appreciated.


thx

Bobbie
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Postby Bobbie » Mon Mar 12, 2007 12:07 pm

gflong,
Hopefully, you've read the first forum ALL USERS READ THIS FIRST, its subtopics, & Dr. Borody's and Dr. McDonald's articles.

Sounds as though you've had prior problems that make your diagnosis more complex. Please remember this isn't a medical site -- we can't diagnose you. We can tell you what worked for us.

Some experts think IBS is low-level C. diff. Others disagree. Many with C. diff. suffer post IBS. I am one of them. Not fun but preferable to C. diff. Yes, some people can have C. diff. for a long time before being diagnosed. (Refer to Dr. Borody's article.)

If you are on Flagyl or Vanco. when you are tested, they can negate the test results. Best to be off meds. for 10 to 14 days before being tested (14 best) if possible. This also applies to a colonscopy and flex sig. For more info. re. tests, see FAQ-Tests.

If Flagyl doesn't seem to be working, discuss going back on Vanco. with your doc. again. Sometimes it works when Flagyl doesn't; some can't tolerate the side effects of Flagyl. Also, Vanco. seems to work better than Flagyl for the newer strain of C. diff. altho. every case is different.

Were you on antibiotics before developing C. diff.? Their use is associated with most cases although there are other causes

If you are on Flagyl or Vanco. & your symptom are controlled, I would have little concern about visiting your elderly parents, but check with your doc. I would use good hygiene, however, and wash your hands thorougly. Be extra careful about hygiene in their bathroom & wash everything with a cleaner containing bleach (don't forget the sink & toilet handles & doorknobs) after using. See FAQ-Hygiene.

Nan
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Postby Nan » Mon Mar 12, 2007 3:26 pm

Sorry about your many bowel problems. How awful for you.

It has been more than 2 years since I tested positive for Cdiff after clindamycin for dentistry and after many relapses I am still fighting the disease. I do think, though, that I had mild Cdiff before it was “official” by my symptoms that were similar to IBS for a few years prior. Coincidentally or not, IBS symtoms starting about the same time I started on protein pump inhibitor for severe reflux (with stricture in my esophagus). I had not been on any antibiotics for years and years before taking that Clindamycin 2 years ago. Anyway no doctor will say that it was Cdiff before for sure, I am just pretty convinced myself that it was.

The Flagyl did little to help me, had miserable side effects and I relapsed immediately after going off of it. Vanco puts me in remission within a day or two. I am vanco dependant at this point and have not been able to be off more than 7 days without a relapse. My relapses are the sudden onset of the same symptoms that we all know way too well. My time will come, though, and I’m hanging in there in the meantime.

When on Vanco and Flagyl it is hard to get a positive toxin test. It may take 2 weeks off of those meds to get a positive test again as the antibiotics put the bacteria in sort holding pattern, back to spore state, waiting for more favorable conditions, no antibiotics, to hatch again.

I agree that although Cdiff is infectious, if you use excellent hygiene you should be able to visit your elderly parents, but like Bobbie said, check with your doctor. I have been super careful with my hygiene. I had two grandbabies during the time with the IBS symptoms, two grandbabies after Cdiff diagnosis, and now number 5 on the way. I would never visit (too sick to anyway) with active symptoms, but my doctor says OK otherwise as long as I continue to use super hygiene, etc.

Waldog
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Postby Waldog » Tue Mar 27, 2007 1:26 pm

gflong,

From what I recall from reading is that having both Toxins + is more accurate than just one, as some people can have (don't recall which one) a single toxin present and not be positive. If that makes any sense.

About your question in regards to can people have this for years and not really know.

I too feel that I am in the same boat as you. My GI doctor and most people on this site seem to feel that it is not possible. Especially for someone like myself who has have C. Diff type symptoms for about 15 years of my life. The say it is just too long, and doesn't make sense.

However, we know our own bodies better than anyone. All I can say is I don't think anyone can say no to that question with 100% accuracy.

My reasoning for this is what else is there to explain the symptoms for so long if no other underlying cause can be found?

I personally think, in my humble opinion that it is definatley possible to have mild to moderate symptoms of C. Diff and be able to live with it for quite some time before discovering it.

I say this because as other people on here can attest, C. Diff is a very different disease for each individual.

For example, I have noticed there are a significant number of sufferers who have been hopspitalized. However, when I was at my "worst" I was only approaching the point of going to the hospital. Was I in the early stages and caught it early? Or am I just less likley to have severe symptoms, and not that my symptoms were something to scoff at, just not enough for *ME* to tell my spouse to take me to the ER.

In the past 5 years of my life, my symptoms had all but subsided to the point I did not notice them.

I only discovered C. Diff once I had been two weeks on a healthy diet.

In my opinion, it seems to make logical sense, based on how I have felt, and what I have read and observed, that IBS and C. Diff are somehow connected if not the same thing on some level.

In regards to visiting relatives, everyone here talk about maintaining good hygiene, and I feel that is a valid point.

However, it is also stated that the spores can survive even the most harsh cleaning. It seems that bleach is the only thing that will actually work on penetrating spores.

This begs the question, how much good can good hygiene do?

I have always been OCD about washing my own hands, and about cleaning in general. If antibacterial soap is useless against spores, then what good is it to clean my toilet with cleansers, and soap, as well as wash my hands with extreme caution using something that will not penetrate the spores???

Of course this is not to say I believe we should not bother to wash our hands or clean, I just wonder how much good are we doing. Are we putting ourselves at more risk by touching exposed surfaces where spores may be hiding???

Should I keep bleach spray near the toilet and use clorox wipes to clean my bum? Sounds painful and it would probably sting!!!

I don't know. As someone else said in another post I read today...

DAMN YOU C. DIFFICILE!!!
-Waldog

Waldog
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Joined: Mon Feb 19, 2007 8:37 pm

Postby Waldog » Tue Mar 27, 2007 1:33 pm

BTW, I'm on my 1st relapse.
-Waldog


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