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Old 02-15-2009, 03:43 AM  
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Join Date: Oct 2008
Location: NY state
Posts: 40
JustJen8 HB User
Clostridium Difficile recurrance - $1200 Rx!!

Hello, I usually do not get replies to my posts on healthboards but I'll try once again.

My husband has recurring C Diff and after two full courses of Flagyl he's now on vancomycin and questran.

His oral vancomycin dose is one teaspoon (5 mL) four times a day mixed in apple juice. The bottle says "250/5 SOL" which I assume means 250mg/5mL solution. Can anyone confirm this for me?

If this is the case, he is only taking a total of one gram daily, which is half the max doseage - seeing as how this is his second replapse and third infection since Christmas, and the vancomycin is doing NOTHING (at least Flagyl made him feel better until he went off it again - not so with this) it would seem to me that he'd be on a full 2 grams daily!

Has anyone dealt with C. Diff? He's a healthy 39 year old man who has not been hospitalized or in a nursing home or operated on OR on antibiotics prior to infection, and we are at a loss to understand how he became infected in the first place, or how to get it out of his system.

At $1200 per Rx for vancomycin, we won't try this again!

Thanks for any help you can give.

edit: I've searched the site since posting and see that someone named "Director" has a lot to say about C-Diff. I had read about the fecal infusion elsewhere but my husband insists he would rather die first (and he just might by the sounds of it).

To add information in case Director or others finds this and replies, I will let you all know that my husband felt much better on Flagyl each time, but within 3-7 days the C-Diff came right back each time. When on Flagyl he was also taking Florastor, but his GI specialist told him not to take the Florastor with his new treatment plan of vancomycin + questran.

He says that he feels as if he never saw the doctor at all this time - the vanco and questran do absolutely nothing whatsoever, but now he has a yeast infection on top of everything else. He is miserable and we are desperate.

I have read that this is very contagious, which nobody told us. My husband and I share the same soda at times, we share the same bathroom and bed of course, we haven't been told not to kiss or not to have sex.... we have three children who also all are feeling bad now, as am I. Should we be worried about getting it from him??

PPS - his colonoscopy was completely normal, but stool culture was positive for C Diff and CT scan showed colitis.

Last edited by JustJen8; 02-15-2009 at 04:41 AM.

 
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Old 02-15-2009, 05:22 PM  
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Join Date: Oct 2002
Location: Pittsburgh PA
Posts: 344
libloom HB User
Re: Clostridium Difficile recurrance - $1200 Rx!!

Wow...I felt compelled to reply to your post even though I have no experience in dealing with C-Diff. So sorry to hear of your husband's situation....no hospitalization, no previous antibiotic use? Just seems as though all the "bad" bacteria in his colon took over.

First, I'd contact the doc or pharmacist to make sure the dosage of Vancomycin is correct. Secondly, I'd search for a C-Difficile support group online.....people who may have or are dealing with the same situation. Most C-diff is spread fecal to oral....so, as I'm sure you are aware, wash, wash and wash those hands. It is the C-diff bacteria that more than likely caused the Colitis.

Get a second, third or fourth opinion if necessary. There's an answer out there.....you just haven't found it yet.

Much good luck to you all,
Linda

 
Old 02-16-2009, 06:31 AM  
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Join Date: Oct 2008
Location: NY state
Posts: 40
JustJen8 HB User
Re: Clostridium Difficile recurrance - $1200 Rx!!

Thank you for your reply Linda. My husband will be contacting his GI specialist today to make sure this is a high enough dose of medication, as well to find out the results of his most recent culture. We definitely were aware that it was the C-Diff that caused his colitis and the beginnings of sepsis, though not at the time of his ER visit in December. We found out that day he had colitis, but it was the next week when following up with the GI doctor that we found out the C-Diff was causing it.

We still have no clue where he got it from. He's not been so much as to a doctor's office between November 2006 and when he came down with the C-Diff, let alone been in a hospital or nursing home. However he does go out to eat at the same chinese buffet a lot of times and always uses the bathroom there - I keep wondering if this is where he got it.

The only other place he may have acquired it is through our well water - we finally had it tested in desperation and found that it was contaminated with 19 colonies of total coliform bacteria, and we were told to chlorinate the well ASAP which we have now done. However we are left with my husband being ill, and no clue how to fix it. I won't even worry about my children and I right now since our symptoms are quite mild compared to his.

I am hoping that someone who has been through this themselves will post and let me know whether they felt better on the flagyl, yet recovered on the vancomycin, because that would give me hope for my husband. He isn't feeling better and I'm not sure where else there is to go from here.

 
Old 02-16-2009, 07:13 AM  
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Join Date: Oct 2002
Location: Pittsburgh PA
Posts: 344
libloom HB User
Re: Clostridium Difficile recurrance - $1200 Rx!!

JustJen.....

Did your husband ask if he could take the Flagyl in combination with the Vancomycin?

Also, it's quite possible that he contracted the C-Diff at the restuarant...i.e., food contamination, touching contaminated surfaces in the restroom, etc. We're all exposed to this bacteria and those with compromised immune systems are most susceptible.

I sure hope your husband feels better soon. Living with the condition is bad enough, but not understanding why adds to the stress of it all. BTW, any chance his gastro doc can refer him to an infectious disease specialist? Just a thought......

Best wishes,
Linda

 
Old 02-16-2009, 11:33 AM  
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Join Date: Dec 2008
Location: UK
Posts: 213
kennyboy HB Userkennyboy HB User
Re: Clostridium Difficile recurrance - $1200 Rx!!

So sorry to hear about your problems jen. From what I understand of the bacillus that can lead to C-diff intolerance is that it is anaerobic. This points the finger at your water supply. As you and your children are also suffering (at a lower level) I would say you have all been exposed to the bacillus from your well water. I know you have now treated it with chlorine but if I were in your situation I wouldn't risk it and would use bottled water for drinks.

I was in Ireland last year on holiday and the main loch that supplies drinking water to Galway County was infected with C-diff and made quite a few people ill before they realised it was contaminated and warned everybody to boil their water for at least two minutes to kill the bacteria. We just went out and bought gallons of bottled water and wouldn't risk drinking it. The C-diff had been caused by excess rainwater which had washed animal feces and after-birth from the lambing season into the loch. You may have had a similar problem with birds or animals falling into your well without realising it. I hope your husband regains good health. Good luck, kennyboy.

Last edited by kennyboy; 02-16-2009 at 12:05 PM.

 
Old 02-18-2009, 11:42 AM  
Senior Veteran
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Join Date: Oct 2001
Location: Washington
Posts: 1,358
RetiredDirector HB UserRetiredDirector HB User
Re: Clostridium Difficile recurrance - $1200 Rx!!

Hi JustJen8...Sorry I didn't notice your post earlier and write in to give you a little insight. I know what you and your poor husband must be going through. First of all, before I forget, to tell you, Questran and Vancomycin should notbe taken together. If the doc has him on it and wants him to stay on it, they should be taken a minimum of four hours apart. Questran will block the effects of the Vancomycin. Ask the doctor about Paregoric to stop some of the diarrhea.

I had Clostridium difficile in 2005, and it was discovered when I went in for a colonoscopy. I had four, 10 day courses of Vancomycin and it wouldn't clear the C. diff up. It sounds like to my your husband is on about half the normal dose. I don't remember what I took, but they were pill form and yes, they were $1,200 retail. My co-pay for insurance was only $40, thank God.

Anyway, after four courses of Vancomycin, my doctor had read about the fecal transfer in a medical journal (and I have a copy of the article) and decided to try it on me. It's done fairly routinely in Europe. My wife was the donor and it needed to be fresh within an hour to use. I went in and they got me ready for a colonoscopy and after preparing the solution by pouring saline over the stool sample, they took the liquid and infused it into my bowels starting at the top about every 10 cm. Sorry, I don't know how much was used at each infusion. It wasn't pleasant experience but it sure beat what I was going through. If you read my other writings, you probably read where I was having two small "accidents" in public places and several (maybe 10-12) times I had nocturnal accidents in the middle of the night. The transfer stopped all the C. diff and I haven't had a problem since 2005! I still take Florastor daily. Two caps, 250 mg each for the good flora.

I will try to do more research on it and if you have any specific questions, please post me and I'll do my best.
__________________
Director

Last edited by RetiredDirector; 02-18-2009 at 11:46 AM.

 
Old 12-19-2009, 03:26 PM  
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Join Date: Oct 2009
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Hockeymama1 HB User
Re: Clostridium Difficile recurrance - $1200 Rx!!

How are you with staph..did you get rid of and how?

 
 



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