Mary's First CDiff Battle

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maryinflorida
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Mary's First CDiff Battle

Postby maryinflorida » Tue Feb 12, 2008 9:38 pm

This is my 5th day off Vanco after 33 days on 250mg 4 x daily and about 4 weeks on a slow tapering off. So far so good but I know it is too soon to tell if it is going to work. There is some rumbling going on in there but with all the probiotics I’m taking, all the yogurt and kefir I’m eating, and the two slices of pizza and glass of wine I had last night, it is hard to tell what is causing it. I think as long as I’m only going to the bathroom once a day and there is no fever or intense pain anywhere I’m ok.
I got CDiff like most people: a hospital stay involving antibiotics (Cipro and Cliydamycin), just a week before Thanksgiving 2007. Three weeks after that event I was back at the ER dying from what I thought was food poisoning. I had gone to bed the night before feeling fine, but woke up a few hours later with a high fever, nauseous, and running for the toilet. By the time my son drove me to the doctor a few hours later I could barely walk or open my eyes, I was disoriented, totally uncoordinated, and looked so bad they immediately called an ambulance. I did not improve until they put me on Vanco my second day at the hospital. As soon as I got better and was able to ask questions I learned about CDiff —the little known infection from hell that can re-arrange your life in a hurry.
Ever since I have tried to learn as much as possible about this invisible enemy and how to best fight it. And this website has been the best source of information and moral support, since this is not exactly a disease you feel comfortable discussing in public—or even with family members! So after gathering information from as many sources as possible (all the great postings in this website, google, online medical journals, and both my GI and ID doctors) here is what I have done about it so far and I sure hope it’s working:

I was on 250mg of Vanco 4 x daily for 30 days, then did a slow tapering down for 4 more weeks.

While on the full dose of Vanco I took Florastor 2 x daily, Culturelle 2 x daily, Primadophilus Optima 1 x daily, and Primadophilus Reuteri 1 x daily. Once I started tapering down the Vanco I doubled all the probiotics. If everything goes well, I plan to keep this up for another 2-3 weeks and then taper down to the normal once-a-day dose each, and later maybe just take one for maintenance. I am trying to crowd-out any hatching CDIff spores until my own flora comes back.

I drink a glass or two of Lifeway Kefir daily, in small amounts at a time. It was all I ate when I first came home and had no appetite, but now I just like it.

I eat yogurt 3-4 times a week.

I also recently started drinking a V8/fruit drink and orange juice, and using vinegar as much as possible to create a more acidic (and possibly CDiff-unfriendly) gut environment. It was suggested on one of the posts, I looked into it, and it made sense, so why not try it? It could work.

Besides these additions I have also modified my regular diet in other ways: I now eat/drink about 90% less red meat, coffee, alcohol, fried foods, or dairy products (except for Kefir and yogurt). I say 90% because I do occasionally have a glass of wine, or some pizza, or something else I shouldn’t.

I take a daily fiber supplement and eat high fiber cereals (with soy milk) to try to prevent another diverticulitis attack that will require more antibiotics.

I also take a multivitamin and a calcium supplement (500mg 2 x daily).

And I do A LOT of cleaning with bleach: laundry, floors (we have tile), bathrooms, kitchen counters. I have also developed a bad case of OCD when it comes to washing my hands.

My only symptoms at the moment are feeling gassy and bloated, some days more than others, but with the amounts of bacteria I am taking and my imperfect diet it may be normal. I can only hope that it’s a sign of all the bacteria fighting for gut-real estate with the good guys wining, and not a sign of the CDiff taking over again. Time will tell, and I will keep you posted!

maryinflorida
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Postby maryinflorida » Sat Feb 16, 2008 1:43 am

So much for my perfectly laid out plans! Yesterday I left the house early with a dog-back-to-the-vet emergency and forgot to take any of my pills and drinks. By mid-day when I finally got home I realized I was not feeling bloated or gassy anymore, so I decided to reduce some of the probiotics in half for a few days and see how that goes. It just felt so good to be “back to normal”! I hope I’m not making a big mistake, but since this is not an exact science maybe I should listen more carefully to what my body is trying to tell me. So I’m now on 3 Florastors a day, 2 Culturelles, 1 Prim. Optima, 1 Prim. Reutieri, plus lots of Kefir, yogurt, and juices.

This is my 7th day off Vanco and so far so good.

maryinflorida
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Joined: Sun Jan 13, 2008 12:31 am

Postby maryinflorida » Wed Feb 27, 2008 7:26 pm

Today I have been off Vanco for 20 days and so far so good. Not perfect but good enough: no diarrhea, no cramps, no nausea, no fever. I do get some bloating, gas, and rumbling some days, so I am reducing my pro/prebiotics again:

1 Culturelle
2 Florastors
1 Primadophilus Optima
1 Primadophilus Reuteri

I am also still drinking Kefir in small amounts throughout the day, eating yogurt every other day or so, drinking a slightly acidic juice mix (V8 Fussion, orange juice & apple juice), and dipping bread in vinegar & olive oil as much as possible.

Except for dairy, red meat, fried & greasy foods, and most alcohol I still eat most everything else, but I'm starting a food diary to see if I can connect some of the uncomfortable days (gassy, bloated) to something I ate & eliminate it.

Let's hope my own intestinal flora is recovering and almost ready for primetime again. This has been the most expensive disease I ever had! Last night we had 7 hour power failure (most of Florida) and I was in more of a panic about all my meds and drinks in the fridge going bad than the rest of the groceries. Luckly the lights came back just in time to avoid disaster!

maryinflorida
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Posts: 115
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Postby maryinflorida » Fri Mar 07, 2008 5:49 pm

Today it’s been a month since my last Vanco and so far things are looking good, but I am waiting until my colonoscopy Monday to claim victory (at least for the time being) on my first Cdiff battle. Except for a couple of days of too much gas or too many trips to the toilet, I can’t complain. I am down to just a minimal maintenance dose of probiotics and on a pretty much “normal” diet.

I still keep dairy products to a minimum, except for yogurt and kefir. And if I eat anything too cheesy—like pizza or italian food—I take a Lactaid pill and that seems to do the trick.

I have also drastically reduced the amount of sugar, butter, fried foods, and red meat in my diet. I think it has helped me settle my digestive track, and not gain back the weight I lost when I was in the hospital with Cdiff (I’m still about 20-30 lbs overweight at 5’4’’ and 154 lbs). And as a bonus my acid reflux problem is all but gone--no more popping Tums at bedtime.

I’m still keeping alcohol to a bare minimum: just an occasional ½ glass of wine once or twice a week. When socializing with friends I have become an expert at nursing the same ½ glass of wine all night while pretending to pour more for myself as I refill everybody’s glasses. I sure miss the drinking but I have to admit that I do not miss the headaches that usually came with it.

What I’m taking now:

Daily:
2 Florastors
2 Culturells
1 Primadophilus reuteri
1 Centrum multivitamin
a calcium/vit D supplement
1/3 cup of Kefir 3-4 times a day
½ glass of V8 Fussion/Gatorade/OJ/apple juice mix 1-2 times a day

Other new things I eat/drink several times a week:
yogurt (Stoney Farms)
bread dipped in an olive oil/vinegar mix
high-fiber Vanilla soymilk
high-fiber cereal
very finely grounded flax seeds (pour over cereal)
more fruits and vegetables
brown rice
fish and chicken instead of red meat
lentil soup
green mint tea
prune juice

All the high-fiber stuff is to try to prevent another diverticulitis attack, but I think it also helps with the Cdiff, since it keeps “things” moving on a very regular schedule.

More after Monday.

maryinflorida
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Postby maryinflorida » Thu Mar 13, 2008 8:13 pm

The good news is that the colonoscopy didn’t show any signs of inflammation from Cdiff, or polyps, or cancer anywhere (my mother died of colon cancer at 59, I’m 56, and I’ve been having colonoscopies since I was 45). The bad news is that my diverticulitis is still there and my doctor will probably want to schedule the colon resection as soon as possible when I go to see him on Tuesday. And that means going back on some kind of antibiotic for the surgery so the Cdiff will probably flare-up again. So, yes, it looks like I won my first Cdiff battle but it may be a short-lived victory.

In the meantime, my whole system has been all messed up since the colonoscopy, probably from the gallon of GoLytely I had to drink the day before. That stuff is awful! I just hope everything gets back to normal after a few days and that I don’t need another colonoscopy for a long time.

maryinflorida
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Postby maryinflorida » Mon Mar 24, 2008 6:13 pm

I guess that prep for the colonoscopy was pretty brutal but after a couple of days all is back to normal: the bloating, burping, and acid reflux are all gone. On the bad side, my husband has been having some "problems" so I hope he didn't get infected from any left-over spores in our bathroom. He hates yogurt but I'm going to give him Culturelle for a while and see how it goes. It's probably just something he ate at a dinner party this weekend, but now I see CDiff behind any stomach problems.

I'm now sprikling the Primadophillus OPTIMA in some yogurt or kefir, instead of taking the whole capsule. I think the capsule was delivering a little bit too much bacteria to my instestine, so instead I'm spreading it along the entire digestive track. I hope it will provide some benefits along the way and reach its final destination in lesser numbers.

Surgery coming up probably next month, but at least my surgeon seems very aware of the antibiotic problem with CDiff and willing to minimize the expossure. We still have to work out the details but at least he is very open-minded about it.

maryinflorida
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Postby maryinflorida » Wed Apr 09, 2008 2:07 pm

Bacteria: we can’t live with it, but we also can’t live without it!

A couple of nights ago I was back running to the bathroom or trying hard to control that sense of urgency, something I have not felt for a long time. I knew it had a lot to do with the two servings of homemade lassagna I had for dinner, but I was surprised since I had italian food before (post-Cdiff) without any problems. What had changed? I finally figured it out the next morning: the previous day I ran out of both Kefir and the Primadophilus Optima probiotic capsules I sprinkle on my food so it passes thru the stomach on its way down. I also did not have any yogurt all day. No bacteria in my stomach to help me digest! I guess it makes a big difference because I thought I was having a relapse, but everything went back to normal as soon as I ran to the store and pumped some good bacteria in my stomach instead of just in my colon. So all these enteric capsules that can deliver live bacteria to the intestines are great, but delivering some probiotics to the stomach may be as important. So I’m back on my routine, but I think the next time I’ll play it safe and skip that 2nd serving.

It's now about 60 days since my last Vanco.

maryinflorida
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Postby maryinflorida » Wed May 14, 2008 10:28 pm

I think once your own flora makes a comeback too many probiotics can become a problem so I'm off most of them and feeling better. I'm just taking one reuteri and one or two Florastors a day, but I see very little difference if I forget and skip a day. I am still eating yogurt and drinking kefir daily and pretty much sticking to the rest of my diet: high fiber, acidic foods, green tea, very little red meat, sweets, or fried foods, no dairy (except for the occassional pizza or lassagna, followed by a lactaid). I know most people with cdiff stick to a bland diet but this seems to have worked better for me. It keeps everything moving like clockwork---I have never been so regular in my life.

After surgery next week I'll probably have to start all over again.

maryinflorida
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Postby maryinflorida » Thu May 29, 2008 6:58 pm

It’s been a week since my intestinal surgery and I’m still waiting for Cdiff to strike again. I had planned to have this surgery done with very minimal use of prophylactic antibiotics but I developed a fever and some stuff in my lungs so my doctors all panicked and extended the antibiotics. I’m not sure how much of my good intestinal flora was killed by a total of 3 days on antibiotics (first on Flagyl and Vanco as originally planned, and then Tygacil). The surgery itself went very well but I’m having all kinds of problems “down there”, from gas to bloating to hourly trips to the bathroom. No diarrhea, though. Just a lot of small trips, an urgency to “try.” Hard to tell if it is the Cdiff rearing its ugly head again or just part of the normal recovery process after some of your gut is cut off and reattached.

I’m taking Florastor and some probiotics in moderation but I’m not sure if it helps or makes it worse. I may stop everything tomorrow except for the Florastor and the yogurt, stick to an easy diet for a while and just hope enough of my good bacteria is still there and able to fight the Evil One on its own.

That vaccine they have in the works cannot come soon enough!

maryinflorida
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Postby maryinflorida » Thu Jun 05, 2008 10:24 pm

Well, it's been two and a half weeks after surgery and antibiotics and still no sign of a relapse. I don't expect things to be 100% back to normal for at least a couple of more weeks but as long as there is no sign of CDiff (my biggest fear going into this surgery) I'm happy. I am down to just 2 Florastors a day and no other probiotics except for lots of yogurt and my usual diet. I'm still keeping my fingers crossed but I think I made it!

maryinflorida
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Postby maryinflorida » Fri Nov 14, 2008 2:55 am

Five months and a presidential election later, still no signs of CDiff! I have been very lucky not to relapse after surgery and a couple of ear and UT infections that required antibiotics (Cipro ear drops & Macrobid). I just increase my daily servings of yogurt, kefir, and probiotics every time I have to take an antibiotic and for 3-4 weeks after, and then back to my normal diet. I don't use bleach or antibacterial soaps except for in the bathroom and when I go to a hospital, since I do want to attract and cultivate as much "good" bacteria as possible to keep the CDiff under control. It has worked for me so far and it serves as my excuse not to keep my house perfectly clean!

maryinflorida
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Postby maryinflorida » Thu Jan 01, 2009 10:36 pm

On the Z-pack this week, after a month of trying to get rid of a flu/respiratory infection without antibiotics. This will be my first time on antibiotics for anything longer than a day or two since I had cdiff, so I am keeping my fingers crossed, and my probiotics up.

So far no problems, but it is probably too soon. I know others have been on the z-pack with mixed results so I hope I'm one of the lucky ones.

maryinflorida
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Postby maryinflorida » Fri Feb 06, 2009 10:15 pm

Happy to report that the ZPAK seems safe to use. I have been on it twice during the past month and survived without relapsing. The first time I took it for the full 5 days for a respiratory infection, and then last week I had to take just the first dose (two pills) from another ZPAK to have a molar removed. I have also been taking probiotics, eating more yogurt, and drinking lots of kefir. It seems to have worked!

maryinflorida
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Posts: 115
Joined: Sun Jan 13, 2008 12:31 am

Re: Mary's First CDiff Battle

Postby maryinflorida » Sat Oct 03, 2015 4:54 pm

Seven plus years later I'm still C-Diff free! So don't give up ---it is possible to win the battle.

Good luck to all!


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