C. difficile

DianaCox

Bad Cop
This is a placeholder to start INFORMATIONAL posts about C. diff, which I invite those who have experienced it to contribute to:
  • What were your symptoms?
  • How was it diagnosed?
  • What treatments did you try?
  • What worked?
  • Other issues? (e.g., protections you had to take to prevent infecting others)
 

Spiky Bugger

Well-Known Member
  • What were your symptoms? Relentless, offensive-smelling diarrhea.
  • How was it diagnosed? I figured it out, confirmed by stool sample testing.
  • What treatments did you try? Flagyl, Dificid, Vancomycin, Fecal Transplant
  • What worked? Finally? The second transplant.
  • Other issues? (e.g., protections you had to take to prevent infecting others
I worried the whole time--several months--about infecting my husband (who takes Enbrel, so he has a compromised immune system), my family, my housekeeper. I kept other family members away. I abandoned my housekeeper. I have my own bathroom. Clorox makes a bleach wipe that kills C Diff spores. I bought a steamer for my bathroom, because some bitch. @kirmy told me to, and I steamed most of the surfaces I came in contact with. I slept alone. I used Depends...even for a couple of weeks after I recovered my health.

Also, it got so I could predict what would happen...how much time I'd have. Once I started responding to the Vancomycin, I was good for about five to seven days. After that, the spores, which the Vanco doesn't kill, would mature into a relapse and we'd start all over again. Each time, I had HOPED I was cured...but I never really was.

So, keeping my fingers crossed AND a close eye on the calendar, I managed to squeeze in a few gatherings during periods when it was not active...realizing that you don't REALLY know if you are cured until you get sick again.

It's been two months this time. I hope I am finished.
 

Spiky Bugger

Well-Known Member
I forgot to mention...my bathroom looked like part of a vacant house. NOTHING on the counters, no towel sets hanging on those towel bars. The huge vase full of soaps, gone. No lotions on the counter. And everything that had been out was wiped down with the Clorox wipes and stored elsewhere.


A few cotton balls in a baggie. A few Q-tips in a baggie. Paper towels. I lived in bras (when I wasn't too bloated) and Depends and those huge plaid flannel things that Woman Within sells and I've had for years. Even bought a couple extra.

As I headed toward the bathroom...again, used only by me...I took the towels I would need for the task at hand. I used only old white, bleachable towels. And I had a small bucket and a bottle of bleach in the bathroom, so that any washcloth could be used and tossed directly into that bucket with bleach water. And everything was washed in
HOT water.

HOW.FREAKING.EVER, I'm pretty sure that the fecal transplants...and I was in that small percentage of people who needed two and also btw...insurance doesn't cover most of it...were what worked.

It's weird, I know. I was on a group a while back and someone I thought was brilliant was considering a transplant and
I decided she was a freak. But you know, what's really freaky is having diarrhea 15, 18, 20 times a day, most days for month after month. When you get to the point that all you want to do is make sure your things are in order such that your daughter will know which ancestors are in which photos and why you have that funny little gold pin...that you just need enough energy so that you can die, with or without helping that task along, with your things in order...then a fecal transplant, even when it could cost a fortune, sounds like a good idea and not crazy at all. (If it meant your life, you'd add someone else's blood in with yours, right? Why not someone else's fecal bacteria in with yours? And, pretty soon, when they isolate WHICH bacteria are actually making people better, it will be just a bacterial "soup." But until then...)

There is also an antibody therapy, but I got better. That's where I'd have gone if transplant #2 had not worked.

I do, however, live in constant fear of having to take an antibiotic.

And, PS, the ONLY thing that kills the C Diff spores on your hands or on your stuff is bleach...NOT antibacterial lotions or wipes.
 

bearmom

Well-Known Member
Spiky, do you happen to know what bacteria etc were in your particular transplant? I assume it was a mix, but strains that they at least identified beforehand?
 

Spiky Bugger

Well-Known Member
we have a lot of c diff at my workplace. :neutral:
Yes...that is a prime location...so many people on antibiotics...less than ideal hygiene...few have advocates that can arrange for things like FMT or transportation to and from antibody clinical trials.

It is now an epidemic and kills more people than does AIDS.
 

kirmy

Well-Known Member
No need to thank me....oh ok...go ahead. steam EVERYTHING especially soft furnishings and carpet. You'll shed spores all over that shit. Now I'm determined you've beaten this so I can be sarcastic and passive aggressive with impunity from this point on.

The bloating......fuck that shit.
 

Larra

Well-Known Member
OK, I suppose it was inevitable that with the FDA placing limits on fecal transplant, it would come to this:

http://www.medpagetoday.com/Endocrinology/GeneralEndocrinology/45141

Well, if people can perform do it yourself artificial insemination with a turkey baster, it was inevitable that someone would try fecal transplant. For those of you who have never endured the misery of C diff or ulcerative colitis or other diseases that might benefit (or might not, no one really knows except for C diff), and the drugs can have terrible side effects, and you really like having a colon, it's worth a try. I agree with the physician who wanted a more organized approach so that results could be documented, but from the patient's point of view, if this is the only way to get the one treatment that might actually help you after you have tried and failed everything else multiple times, I don't blame them. Though I'm glad I don't share their kitchen.
 

Spiky Bugger

Well-Known Member
OK, I suppose it was inevitable that with the FDA placing limits on fecal transplant, it would come to this:

http://www.medpagetoday.com/Endocrinology/GeneralEndocrinology/45141

Well, if people can perform do it yourself artificial insemination with a turkey baster, it was inevitable that someone would try fecal transplant. For those of you who have never endured the misery of C diff or ulcerative colitis or other diseases that might benefit (or might not, no one really knows except for C diff), and the drugs can have terrible side effects, and you really like having a colon, it's worth a try. I agree with the physician who wanted a more organized approach so that results could be documented, but from the patient's point of view, if this is the only way to get the one treatment that might actually help you after you have tried and failed everything else multiple times, I don't blame them. Though I'm glad I don't share their kitchen.
For C Diff: As the article mentions, one source of the transplant material is MIT. It costs $250. Shipping, for one to ten doses, costs $250. So "materials" for one treatment can cost from $275 to $500. Insurance will probably pay for the colonoscopy part. Some insurances pay for the anesthesiologist.

But I ALSO went to a trial of a similar product, at Mayo Clinic. It was more like the DIY people do, as it was administered via enema. It was ineffective for me. The Open Biome product is placed WAY deeper into the colon and I feel like that made a big difference...and even then, I needed two administrations.

If all these other folks can try is this procedure, it's really sad. But maybe better than nothing?

(BTW, the antibiotics for C Diff can cost about $1200 for each 10-day course of treatment...and relapses are routine. Poop is way cheaper. And C Diff now kills more people every year than does AIDS. It is a HUGE problem.)
 

Leeayn Byrd

Member
I was diagnosed with c-diff on 3/30/2014.
My husband has the "24 hour bug" (he had his bicep reattached on Tuesday and was sick Friday so we weren't sure if it was a bug or a reaction to the pain meds) on Friday night and he slept all day Saturday.
I woke up at 4 am on Sunday with diarrhea, gut wrenching pain in my upper gut and throwing up which turned to dry heaves. I thought I had the bug too.....so I took an immodium, 8 mg Zofran and a Phenergan suppository - no relief. About an hour later, I took another immodium (it stayed down about 10 minutes) and another Phenergan suppository - again, no relief. So I'm thinking, the Phenergan is about 4-5 years old, maybe it's too old to work. But Zofran is my drug of choice, I will ask for Zofran before anything, I hate being nauseous!
About 8:30-9:00 am, I knew I was dehydrated and needed fluids so I had my oldest daughter call the First Choice ER (stand-alone ER) because they can do fluids and IV meds. It's just a bug, right?
9:30 ish, we get to ER, my poor husband drives me and he shouldn't be driving with a broken wing (so to speak) and I am dry heaving in the car all the way. How I didn't poop my pants on the 20-30 minute drive is beyond me!
Get to ER and they hook me up to IV immediately, well....as soon as they can hit a vein, that is. I am a breast cancer survivor, so they can only use my left arm. When you are beyond dehydrated, they are even harder to find, much less hit! I had them put me in a room near the bathroom. I was so weak, they had to wheel me in a wheelchair to the bathroom each time, and I was dry heaving like crazy! While I was there, about 4 hours or so, I had 2-3 bags of fluid, CT scan, 16 mg of Zofran, I don't know how much but at least 2 does (IV) of Phenergan and I was still dry heaving. They gave me .5 (point five) diloted for the pain. I puke with narcotics, so the .5 seems to take the edge off without having the stomach effects. They came back in and told my husband that they were transferring me to the hospital (first time in an ambulance). I got another 4 mgs of Zofran in the ambulance because I was dry heaving...... I'm not sure what all they gave me at the hospital, I pretty much lost most of Sunday and Monday.
I know they did a nasal swab and a rectal swab when I was admitted and at some point, they did a stool sample (Not sure if this was Sunday or Monday?).
Monday about 3 pm-ish, the dr came in and said the c-diff culture was positive and I had blood in my stool. They started me on Flagyl IV immediately.
They had me counting my potty visits - 17-20 every 12 hours :(
By Wed, they had not improved, so they called in an infectious disease Dr and changed me to Vancomycin.
Thursday - it's "better", only 17 potty trips in 12 hours!
Friday - 16 potty trips in 12 hours
Saturday - the ID drs partner came in about 11, ask how many times I had been and it was only 4-5 at that point, so he let me go home :) (The female ID Dr wanted me to stay until at least Monday. If the episodes hadn't gotten better, she was going to start Vanco enemas (sounds lovely, huh?) every 6 hours.
She said there is only 3 drugs for c-diff and right now I'm on #2. Last resort if the meds don't work is to remove my colon (I was a basket case when I heard this!) She had lost 2 patients in the past couple of weeks with c-diff, she was stressing to me how dangerous it can be! HOLY COW!
So, leave the hospital on Saturday and go pick up my Vancomycin, $2900 for a 30 day supply and I'll be on it 6-8 weeks! Glad I have good insurance and have met my deductible.

So, back up a bit and why my ID Dr thinks I have c-diff so bad.
12/10/2013 - Double Mastectomy (thank you cancer!) with an antibiotic
mid Jan - Flu/Crud/pneumonia - antibiotic and steroid shot
1/17/2014 - Surgery to close up the incisions on both breast - antibiotic
1/24/2014 - Surgery to remove my right expander due to infection (ended up being staph and pseudomonas aeruginosa) - So, 2 bags of antibiotic by IV in the hospital; came home that night with 3 antibiotics; changed to Cipro on 1/31/2014
3/19/2014 - Surgery to replace right expander - Antibiotic. They also cleaned me with something new and I broke out in a rash/hives, so I also got steroids.

Total of 8 rounds of antibiotic and 2 rounds of steroids from 12/10 - 3/19 (finished the antibiotic and steroid around 3/26ish)

My ID dr said that the last round of steroids probably kicked me over the edge.

I am scheduled to have a DIEP flap (breast reconstruction surgery) on 5/27. However, MY ID dr said NO WAY, she would guarantee I would get c-diff again but worse if I had another surgery / antibiotic this close to my c-diff diagnosis. So I moved my DIEP flap to 9/16 for now. I will have to have complete clearance from my ID dr before the surgery. My PS and ID dr will work together to figure out which antibiotic to give me after the surgery, too.

ok, back on track - so here I am 12 days since I got sick with c-diff and still feel like crap! I am weak, I am tired, I am still having the stomach cramps (pain scale of about 5-6, no longer the 15!), still having diarrhea 5-8 times a day. The consistency is no longer pure liquid, it's more liquid baby food, if that makes sense. How long does this crap last? UGH!

I will see my ID Dr again on Monday and we will go from there. Will probably see her weekly until I am clear. I had to go yesterday to get IV fluids - 2 bags and still didn't pee for about 4-5 hours, and at that, it was drops, not much at all. The ER nurse said that it is very normal for people with C-diff to have to have fluids every few days, no one can drink enough fluids to keep up with the diarrhea. LOVELY! Just what I wanted to hear! I am a hard enough stick, now the thought of having another IV makes me sick! I drink over 100 ozs of water (I don't count coffee and other drinks) to try to keep from dehydrating, and it works but evidently not with c-diff.


Any thoughts? Advice? Hope?
 
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