C. difficile

[Spiky Bugger]

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?

As you know by now, some of the antibiotics do a decent job of killing the bacteria but are completely ineffective against the spores, which grow up a week or so later and it starts all over again.

I did a ten-day course of Flagyl...maybe one day with 10 instead of 18 bathroom visits, then back to Square One. Then
I did ten days of Dificid. Same thing. Then ten days of Vanco, and relief showed up on day eight of ten.

I was "cured" for about a week and then it was back. This went on for about four months. (Some people fight it for years! Some people lose that fight! Do NOT give up...keep fighting.)

Each Vancomycin cap costs about $30...so $120/day...insurance farts around approving it. There is no good readon for this...for many it is life saving.

Anyway, then I was part of a clinical trial of a poop transplant. It was delivered via enema, which means it doesn't go very far into the colon. Ineffective for me. I wouldn't recommend it to anyone.

Then I had a real poop transplant. The product is OpenBiome from MIT. It is instilled via colonoscopy. Insurance pays for the colonoscopy part, and mine paid for the anesthesiologist. I had to pay out of pocket for the poop...about $350-500. I got eleven days of relief and then it was back.

So I went for another poop transplant. Some people require two of those. That was in early December, and so far, so good. But I am terrified of antibiotics.

When the antibiotics don't work, the options are limited...poop transplant(s) or there are clinical trials on another approach, using antibodies. But in a clinical trial situation, you may or may not get the real stuff...and by then, I didn't want to travel the distance I would have had to go, just to get the pkacebo. Firtunately, I didn't need to do that.

Good luck with this...the entire epusode was exhausting, but do not give up and start looking for a bridge to jump off of. You MUST try everything you can try. And if all you can do is limit it with repeated rounds of Vanco, that week or so of relief between episodes is life-and sanity-saving.

 

[Leeayn Byrd]

I am petrified to take another antibiotic at this point! I know with the DIEP flap I will be on something for 5 days as preventative. At this point, I'm ready to say no more ****ies!
For now, I'm on Vanco every 6 hours (7 am/pm and 1 am/pm) for 2 weeks, then go to every 8 hours for 1-2 weeks (need to go get the rx to see) then 12 hours for 1-2 weeks, then 24 hours 1-2 weeks, but she said that may change when I see her weekly. Change as in doing 3 weeks rather than 2 weeks per "dose". The male ID dr (that let me go home on Saturday) explained it to me pretty good - he said the spores in your stomach are in a "shell" and with the meds every 6 hours, they stay in their shell. When you change to every 8, they think "Hey, I can come out of my shell and start wrecking havoc on your gut" and BAM they get hit with Vanco at 8 hours rather than the 6 they are use too. That's why they decrease the timing of the meds. Made it pretty simple to understand.
I'm not at the jump off of a bridge state YET, but I am sick of feeling like crap. I'm a mover and shaker, on the go all the time! I miss seeing my grandkids! I have seen them once in 2 weeks, we normally see them 3-4 times a week! this sucks!
Mark's step-mom came and cleaned my house yesterday. I keep "my" bathroom bleached down every time I go in there, bleach my sheets and towels daily, bleach down my counter tops every time I go in the kitchen, cook (what little I am cooking) I wear rubber gloves. It's depressing, that's about the only way to put it, honestly! I keep a clean house, but having to ask someone to come help clean is depressing, too. I guess it just goes to show, I'm really NOT superwoman
Thank God I have a job where I can work from home. I had to go back on Short-term disability since I am having to rest and go to the dr quite a bit, but I just want to be back to my old self! I know you "get it", too.
I only had to pay $78.80 for the Vanco, We have hit our deductible this year, gee wonder why? and I think we are done with out "out of pocket" which is 10% of what's allowed up to $2K.
Last week in the hospital, I was critical, so I am better, but by no means am I well! ugh ugh ugh!

 

[Spiky Bugger]

I am petrified to take another antibiotic at this point! I know with the DIEP flap I will be on something for 5 days as preventative. At this point, I'm ready to say no more ****ies!
For now, I'm on Vanco every 6 hours (7 am/pm and 1 am/pm) for 2 weeks, then go to every 8 hours for 1-2 weeks (need to go get the rx to see) then 12 hours for 1-2 weeks, then 24 hours 1-2 weeks, but she said that may change when I see her weekly. Change as in doing 3 weeks rather than 2 weeks per "dose". The male ID dr (that let me go home on Saturday) explained it to me pretty good - he said the spores in your stomach are in a "shell" and with the meds every 6 hours, they stay in their shell. When you change to every 8, they think "Hey, I can come out of my shell and start wrecking havoc on your gut" and BAM they get hit with Vanco at 8 hours rather than the 6 they are use too. That's why they decrease the timing of the meds. Made it pretty simple to understand.
I'm not at the jump off of a bridge state YET, but I am sick of feeling like crap. I'm a mover and shaker, on the go all the time! I miss seeing my grandkids! I have seen them once in 2 weeks, we normally see them 3-4 times a week! this sucks!
Mark's step-mom came and cleaned my house yesterday. I keep "my" bathroom bleached down every time I go in there, bleach my sheets and towels daily, bleach down my counter tops every time I go in the kitchen, cook (what little I am cooking) I wear rubber gloves. It's depressing, that's about the only way to put it, honestly! I keep a clean house, but having to ask someone to come help clean is depressing, too. I guess it just goes to show, I'm really NOT superwoman
Thank God I have a job where I can work from home. I had to go back on Short-term disability since I am having to rest and go to the dr quite a bit, but I just want to be back to my old self! I know you "get it", too.
I only had to pay $78.80 for the Vanco, We have hit our deductible this year, gee wonder why? and I think we are done with out "out of pocket" which is 10% of what's allowed up to $2K.
Last week in the hospital, I was critical, so I am better, but by no means am I well! ugh ugh ugh!

I bought a steam cleaner. I had a small steamer, but I got a larger one, I think, at Kohls, with coupons. http://i.walmartimages.com/i/p/00/88/44/93/00/0088449300073_500X500.jpg

And I got a clorox product for cleaning. It is rated for killing C Diff on hard surfaces. On soft things...we're screwed. https://www.cloroxprofessional.com/products/clorox-germicidal-wipes/at-a-glance/

 

[Leeayn Byrd]

we spent about $300 at Costco on Clorox cleaning supplies on Saturday - my house smells like bleach! I'll look at the steam cleaner, thanks for that info!
I'm washing my sheets and white towels (I think I have 3-4) daily. What a pain! but it's something I need to do....

 

[Larra]

Leeayn, I'm sorry you're having such a miserable time with C diff. In the old days it wasn't so bad, but the strain that we have now is so virulent that it makes people much more sick, as you have learned, and does sometimes kill people, esp if the patient is older or weak or chronicly ill to start with.
If the drugs don't work, and sadly there are only a few even worth trying, sometimes an additional course of the same drug does the trick, but if not, discus fecal transplant with your ID doc. It isn't perfect, but when you consider that it's only used on the toughest cases and still has a high success rate, it really is worth a try. You just have to get past what the medical profession so delicately calls "the yuck factor". But anyone really struggling with C diff can leap right past the yuck factor, probably faster than the doctor can.

 

[Leeayn Byrd]

Leeayn, I'm sorry you're having such a miserable time with C diff. In the old days it wasn't so bad, but the strain that we have now is so virulent that it makes people much more sick, as you have learned, and does sometimes kill people, esp if the patient is older or weak or chronicly ill to start with.
If the drugs don't work, and sadly there are only a few even worth trying, sometimes an additional course of the same drug does the trick, but if not, discus fecal transplant with your ID doc. It isn't perfect, but when you consider that it's only used on the toughest cases and still has a high success rate, it really is worth a try. You just have to get past what the medical profession so delicately calls "the yuck factor". But anyone really struggling with C diff can leap right past the yuck factor, probably faster than the doctor can.

Oh trust me, I will try anything at this point. It is hard to describe just how sick I have been.
Protein / album level was a tad under 3 due to me being so un-godly sick. I am working on getting it back up.
I was on IV from Sunday until I went home Saturday - my electrolyte levels were not even near normal until Friday! to me, that was forever.
I am immune compromised, thank you cancer and chemo So when I get something, I get hit hard!
I go to the ID dr on Monday afternoon, so hopefully, will have next step and hoping to feel much better, too.

 

[Terri]

I hope the vanco and all the preventative measures you are using work and quickly for you.

 

[JackieOnLine]

@Leeayn Byrd - any update? I can't believe what you (and Sue) have been through with this stuff.

 

[Leeayn Byrd]

Yes, went back to the ID dr on Monday, she requested another stool sample (that is disgusting!).
She wants to see if I am still testing positive. If so, she will start Dificid along with the Vanco.
I go back on Monday but I got my results today via the LabCorp patient site, C-diff negative! I AM SO HAPPY!
I will know More on Monday, but I don't think she will shorten my Vanco dose. She said since I have had it before, she wants to be sure I am on it for 6-8 weeks.
I still have good days and ickey! About every 3rd day, I cramp like crazy, poop up to 12-15 times a day (TMI) and on good days, it's only 8-12. No "texture", it's still like baby food. However, the smell is still horrible. Not a DS smell, but the c-diff smell. She also said that if I'm still going that much, she will give me something (like Imodium, but not Imodium) to stop the frequency.
I had to go back to ER Wed after I got out of the hospital for IV fluids. She said she expects me to go in, maybe a couple time a week, for fluids. I haven't needed any more that I can tell. (fingers crossed!)
I get really tired after doing anything for 2-3 hours, and I'm not lazy. I don't take naps, but trust me, I have had several since my diagnosis. It sucks! Is this normal? I had c-diff with chemo, but to be honest with you - I was so ungodly sick with chemo, I don't remember the c-diff making me this sick/weak. I was so weak with chemo, maybe I just didn't realize the c-diff effects.

I have a sore throat, my grandson has a throat infection and I think the little stinker drank out of my drink! I get strep really easy, and if it gets that bad, I don't know what I'll do! I normally get a penicillin shot, the pills do me NO good with strep. I am scarred of the thought of another antibiotic!

OH - I ask my ID (Infectious Disease) dr what antibiotic would be best for my Plastic Surgeon to use when I have my DIEP flap (moved it out to 9/16). Her first suggestion was a sulfa drug - well, guess what? I'm allergic to supfa drugs so she is going to do some more digging and together, they will come up with a plan.
I just want to be well! I'm tired of this crap - literally!!!!!

so, I'll post an update after my Monday appt. Thanks for asking

 

[JackieOnLine]

ooh, boy, C Diff negative?!!!!

 

[Larra]

Leeayn, not to rain on anyone's parade, but keep in mind that testing for C diff has a substantial rate of false negatives. That's how it got its name - difficile - it's difficult to detect. So if symptoms persist, you will need to be tested yet again. Yucky but necessary. And you may also need further treatment. I'm sure your ID doctor is well aware of the limitations of lab test for C diff, it's very well known.

Meanwhile, the fact that you are having some better days is encouraging, keep up with the fluids and your nutrition, and let us know how things go.

 

[Spiky Bugger]

A

Yes, went back to the ID dr on Monday, she requested another stool sample (that is disgusting!).
She wants to see if I am still testing positive. If so, she will start Dificid along with the Vanco.
I go back on Monday but I got my results today via the LabCorp patient site, C-diff negative! I AM SO HAPPY!
I will know More on Monday, but I don't think she will shorten my Vanco dose. She said since I have had it before, she wants to be sure I am on it for 6-8 weeks.
I still have good days and ickey! About every 3rd day, I cramp like crazy, poop up to 12-15 times a day (TMI) and on good days, it's only 8-12. No "texture", it's still like baby food. However, the smell is still horrible. Not a DS smell, but the c-diff smell. She also said that if I'm still going that much, she will give me something (like Imodium, but not Imodium) to stop the frequency.
I had to go back to ER Wed after I got out of the hospital for IV fluids. She said she expects me to go in, maybe a couple time a week, for fluids. I haven't needed any more that I can tell. (fingers crossed!)
I get really tired after doing anything for 2-3 hours, and I'm not lazy. I don't take naps, but trust me, I have had several since my diagnosis. It sucks! Is this normal? I had c-diff with chemo, but to be honest with you - I was so ungodly sick with chemo, I don't remember the c-diff making me this sick/weak. I was so weak with chemo, maybe I just didn't realize the c-diff effects.

I have a sore throat, my grandson has a throat infection and I think the little stinker drank out of my drink! I get strep really easy, and if it gets that bad, I don't know what I'll do! I normally get a penicillin shot, the pills do me NO good with strep. I am scarred of the thought of another antibiotic!

OH - I ask my ID (Infectious Disease) dr what antibiotic would be best for my Plastic Surgeon to use when I have my DIEP flap (moved it out to 9/16). Her first suggestion was a sulfa drug - well, guess what? I'm allergic to supfa drugs so she is going to do some more digging and together, they will come up with a plan.
I just want to be well! I'm tired of this crap - literally!!!!!

so, I'll post an update after my Monday appt. Thanks for asking

Be VERY careful with those drugs!

Although it is really tempting to LIVE on the stuff, Immodium and Lomotil are now considered contra-indicated in C Diff. I used it to GET to the doctors...sometimes a four-or five-hour drive...but I also had my earthquake (emergency) poop bucket in the car for those treks.

Loperamide treatment is not used in symptomatic C. difficile infections, as it increases the risk of toxin retention and precipitation of toxic megacolon. (Wikipedia.)


Lawyers think it is grounds for a good malpractice case...
http://www.millerandzois.com/Maryland-C-difficile-lawyer.html

http://www.medquestltd.com/c-difficile-cases-worth-pursuing/

 

[Leeayn Byrd]

Went back to my ID dr on Monday - she is pleased with my progress. She extended my Vanco.
every 6 hours for 2 weeks (complete)
every 8 hours for 1 week (started Monday)
every 12 hours for 1 week
every 24 hours for 1 week
every-other day for 1 week
every 3rd day for 1 week
every 4th day....... I dropped the RX off at Target, but I'll be on it for about 2 more months.
She offered to give me something to firm up the poop, but I didn't want it. Thanks for the info, Sue!

She did a strep-culture and I should know late today or tomorrow the results. If it is strep (which is what she suspects) she will have to give ma an antibiotic (the only thing that helps me with strep is a shot of penicillin, pills don't cut it for me!) and any antibiotic will put me back at square one with the c-diff and meds. If it is negative, then I will just have to ride it out. I have had a low fever - 100.9 and below, but I'm a 97.5 girl normally. So taking Advil to keep the fever down. the pain in my throat is icky! I can't eat much besides Yogurt and deviled eggs (I think I've had 16 since Sunday!). I'm stopped up and hard to breathe and coughing. OMG, I can't have strep!

I just want to feel normal (whatever normal is) again!
I'll update when I find out about my strep culture. Pray it is negative!

Oh - she said just because my c-diff culture was negative doesn't mean I no longer have it, it means the meds are doing their job. She won't do another culture until I become more symptomatic.

 

[Spiky Bugger]

BTW...right now, Costco has a Haan steamer for $99 delivered, which ain't a bad price. (I will check to see if it's the same model if you're a Costco person.)

 

[Leeayn Byrd]

and the (freakin') saga continues!
Went back yesterday to my ID dr. Not getting better, but not worse.
Monday was suppose to be my first day on 1 Vanco every 24 hours, took it at 7 am; Dr appt at 1:00. She started me back on 4 a day, then taper to every 8 hours after 2-3 weeks, then taper, taper, taper - so will be on Vanco another 2 months, at least. I know it's a good thing, I just want to get better, not sit at this stand-still!
Every 2-3 days, I have the horrible stomach cramps and horrible diarrhea, then I'm ok for a couple of days and only having 5-8 bms per day. My "normal DS day is 1-2 times in the morning and I'm done.
So just really frustrated. I feel like a prisoner in my own house. I am afraid to go out much, never know when the pain will hit. I had to take my laptop back to work the other day (it died, it has to have a new system board) and I had to stop 3x on the way and it's only 30 miles! ugh!
Last night was a horrible night, I was about 2 seconds from asking to go back to ER I handle pain well, but man-o-man, when the pains hit it is like a grip around my waist that won't let go. OUCH! I was up every 1-2 hours last night and finally got some relief about 10-11 today. It just hits with no rhyme or reason, just bam!

I know, TMI!

Yes, I am a Costco person, I will check it out. Thank you, Sue!
Oh - strep culture was negative, just have to let it run it's course - sore throat, swollen lymph nodes, cough, snotty, but that is all getting better!