Dificid did the Trick

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
TiredOfCDiff
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Dificid did the Trick

Postby TiredOfCDiff » Fri Feb 17, 2012 10:40 pm

When I chose the username "TiredOfCDiff" here, I'd been fighting for 5 months and I WAS tired of it. Later, I read some of your stories about fighting for years and the horrific experiences some folks went through and realized I have been relatively fortunate.

My story: routine annual sinus infection in August, but instead of the usual Zpac, my doc prescribed Augmentin. Ten days later, sinuses were much improved but within a few days I experienced the symptoms we're all familiar with. Tried to tough it out, thinking I'd eaten something foul - but as it progressed I went back to the doc.

To his credit, he quickly diagnosed it and I started Flagyl. Ten days, felt somewhat better - but after that course, it came back. Following that, two ten-day courses of Vanco. Each time, the vanc controlled symptoms (I felt generally OK, even traveled on vacation) but each time within 3 to 5 days, symptoms returned. I'd already involved my gastroenterologist by then, but I also enlisted the help of an infectious disease doc. Long course of vanco with an extended "pulse/taper" dose followed - and after over two months of that, I was on my final few days of the taper dose when symptoms came back.

Hit it with a few days of vanco that remained in my medicine chest, and then the ID doc started me on Dificid (fidaxomicin). It HURT. (That's about when I sought you folks out). I was stridently requesting that my doctors prepare for the in-hospital fecal transplant but since they were not experienced with it (and since my hospital was dragging their feet) I asked a few of you for advice on the home transplant. (Thanks for sharing your experiences and paperwork - you know who you are!)

During the dificid course (ten days), my donor's blood and stool were tested and I was in contact with the GI and ID docs almost daily. I was also carrying Tucks wipes and two tubes of Prep H to work (on those days I went to work) because I was on fire inside and out. (Sorry if that's TMI). At the end of the dificid, if my doctor wasn't ready to do the procedure on the first sign of relapse, I was going to home-administer...

... and then an interesting thing happened. Although I was still tender and sore and generally exhausted, I started feeling a bit better. A negative test happened about 3 days later. And each day, I felt a little bit better than the day before.

So, amazingly, it looks like dificid gets credit for the win! Just to be safe, I also had someone come in and clean my house (liberal use of bleach in the bathroom and kitchen, and general sanitizing and scrubbing of anything I may have touched).

What did I learn worth sharing?
1. I found some doctors in Kansas City who care enough to call me after hours and respond to my questions and requests. (I'll provide their names if you ask).
2. The transplant is NOT currently happening very frequently in this town - but they are making some headway on it.
3. An individual needs to be VERY attentive to their own care and communicate clearly to their healthcare providers their demands and questions. (Two nurses at two different offices were sadly ignorant and dismissive and I reported their conduct to the doctors in charge. I also dealt with some nurses who were GREAT and I reported their conduct as well.)
4. There are a lot of healthy probiotic foods and I advocate all of them to my friends and family.
5. Antibiotics should be respected - and approached with open eyes. It's worth an extra day or two of sniffling or sore throat to get a culture returned before starting antibiotics for something that may be viral in the first place.
6. Finally: you are not alone, and there IS hope.

I wish you all the best of health.

- Sean

gm37
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Re: Dificid did the Trick

Postby gm37 » Fri Feb 17, 2012 10:52 pm

Sean,
I am beyond thrilled for you! Dificid seems to have done the trick for me, too. There can't be a better feeling than to be free of c-diff.
I live in KC also. Could you please PM me and send me the names of your doctors? Thanks.
Anne

Bobbie
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Re: Dificid did the Trick

Postby Bobbie » Fri Feb 17, 2012 11:31 pm

Congrats., Sean. (I have a son named Sean - same spelling.) I, too, live in KC and am interested in who your ID and GI are. Pls. PM me.

I had C. diff. from l993-l997 and again in l999. A "new" antibiotic called Vantin given by a doctor I'd gone to for a long time and respected started me down the long road of C. diff. (I, too, had sinus problems and had 3 sinus surgeries. The last was a Godsend. If you have more problems, try sinus irrigation - CDI - Infections. I have a wonderful ENT if you need one.) I was finally "cured" by the broth (see Doctors - Dr. Allen, KC). It failed the first time but was successful the 2nd and 3rd times but left me with years of IBS. (Fairly common in those who have long bouts of C. diff.)

After all these years, I developed C. diff. again in Jan. after ampicillin for a strange UTI - tried my best to make sure an antibiotic was necessary - insisted they run two tests. My urologist was out of town for the holidays. I still wish I'd insisted on Bactrim instead but broke out from sulfa years ago. My younger son had C. diff. in l979 (at the age of 4) and again 6 years later. C. diff. is not supposed to be genetic, but it makes one wonder.

You did a great job as your own advocate. I believe health care workers should be praised for good "stuff" and reported for the opposite.

I am one month off Vanco. but not home free . Years ago, I had reoccurrences after 6 wks. completely off Vanco.I am now "waiting and seeing" whle my GI decides what to do if I reoccur. Dificid would cost me $545.00 co-pay, but I'd pay much more to be C. diff. free.

This is one strange disease. Congrats. again on your victory over it.

Bobbie
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Re: Dificid did the Trick

Postby Bobbie » Wed Feb 22, 2012 9:29 pm

Sean,
I posted your info. in CDI - Coping with C. diff. CDI is not alphabetized and the most recent posts are the last ones.

Thanks for the info. Glad you have overcome this horrible disease.

Chelle1106
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Re: Dificid did the Trick

Postby Chelle1106 » Mon Jun 04, 2012 8:10 pm

Sean- we live in Wamego and our 13 year old is suffering from C-Diff after a round of Augmentin as well. He did a full treatment of Flagyll and is still experiencing cramps and symptoms of C-Diff. We had labs done today but if he comes back positive, we'd like to skip the hoops and go to someone with experience. Can you please PM me the doctor you see in KC? It's a drive but well worth it! Thanks!

Kathy George
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Re: Dificid did the Trick

Postby Kathy George » Mon Jun 04, 2012 9:11 pm

Sean, What an inspirational post!!!!! Thank you for sharing your C-Diff Journey!!!
Kathy
I ask not for a lighter burden, but for broader shoulders.


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