2 weeks off Vanco, fear of relapse.

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ramu
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2 weeks off Vanco, fear of relapse.

Postby ramu » Mon Jun 13, 2016 5:02 pm

I am really struggling here. I want to thank this group for being here because I am so frustrated. I am just off vanco, today is day 14 off of it. I am having stomach pains, had 1 wet D yesterday, and undigested food today- and gut burns. Also, I am struggling to eat over 2000 calories to maintain weight (trying to stay at 185- but weighed 182 today). Thirdly, I am having kidney issues, so am drinking 10-12 glasses of water a day to maintain kidney function. All this eating and drinking is exhausting, but if I eat less, the pounds fly off.
I am sitting on a 2 week supply of vanco because we were going to take a trip at the end of the month and wanted a safety net. My GI guy prescribed it. There was some burn on my recent 2 week course of vanco, but my next step I believe is a tapered course or a pulsed course. But to be honest, I WANT a tapered course of dificid. I thought vanco was the go-to treatment, but it seems most people who actually get better do so on dificid.
Questions: Somehow I got the 250mg vanco for 2x/day instead of the 125mg 4x a day. Has anyone taken this and is it more painful compared to the 125? I won't even let doctors prescribe flagyl (that stuff should be illegal). Is the dificid painful? How well do the guts handle a 10 week taper or a pulsed regimen of either?
More Questions: How long do I wait before jumping back on the antibiotics (something I don't want to do [just to be clear])? Do I wait for Wet D, three times a day with gut pain? I usually have blood on the toilet paper. Do I wait longer? Should I convince a doctor to give me dificid instead? How long can someone have this? It seems unbeatable. I think I picked it up around december and finally got diagnosed around march. I guess I should also state that I have had 2 tests that came back cdiff negative, but quite frankly, I don't believe them. My body tells me a different story most days. (it was the less effective test [70%ish one]).
Sorry so much, but I am so frightened. Jonathan

ppp67
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Re: 2 weeks off Vanco, fear of relapse.

Postby ppp67 » Mon Jun 13, 2016 6:38 pm

Believe the tests if they are negative.
Your story sounds like mine. Two weeks off VANCO I was sure it was back.
I didn't have continual D but it hurt.
(Yes I had wet B too).
Went to ER and got re-tested.
It was CDIFF negative. Like you.

I had some "very dark" D over the next two days but it cleared.
It's been almost three years now and I'm almost 100% better.
It just takes time. No further antibiotics were necessary.
Whew!

Fresh blood sounds like you really need to heal.
I'm pretty sure that's what "hurts" inside too.
(OK, I can't say that... I'm not a doctor, and I've never met you.)
I think what you eat and drink is so important, especially now.
Ask someone else what you should eat and rebuild your good gut bacteria supply.
Healing is so slow but it's essential.

It's a bit odd. Drinking 10-12 cups of water a day sounds like a great idea.
But that will fill you up too, making it harder to hold or gain weight.
Don't worry, once you heal, you'll get your weight back pretty quick.
It happened to me (and then some more and more) :(
So be careful what you wish for!

(BTW, I think the rule is 3 DAYS of D. Going by your message, you had 1 episode on 1 day.)

roy
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Re: 2 weeks off Vanco, fear of relapse.

Postby roy » Mon Jun 13, 2016 7:13 pm

2 negative tests.
D only once a day.
Being able to maintain a decent weight.
Your drinking 6 to 8 pounds of water a day so allow for that if you weigh daily!
That's enough water to cause D and defiantly enough to supress your appetite
Being able to consume 2000 calories when drinking that amount of liquid is well above average.
All these would indicate your recovering.

No c.diff med should cause burning and blood from c.diff is very evident in the stool not just when you wipe.
It's dark red to black and tarry not the red blood that is from a fissure, hem, or just irritation of anal skin.
DO NOT take the vanco you have in reserve unless your Dr advises it.
Recovery starts after you finish meds and your normal gut flora recovers.
Having a reserve of meds in case you relapse while away is a good idea and your VERY lucky to get a Dr to prescribe it.
All I can suggest is that you only go back on Vanco if you get watery D 3 plus times a day
Judge it by this.
Think of making Mc Donalds fries and the fry basket they cook them in.
If you did your business in that basket would it stay in or fall through!
If it falls through for more than 3 episodes a day suspect c.diff!
Anyone for a Big Mac:-)

amyc
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Re: 2 weeks off Vanco, fear of relapse.

Postby amyc » Mon Jun 13, 2016 7:38 pm

Ah, no thanks on the Big Mac haha. If your symptoms get worse you can specifically request the PCR test so you can trust the results. I've never heard of taking vanco twice a day, so you might want to call your doctor's office to make sure that was the dose they intended to prescribe.

ramu
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Joined: Mon Apr 25, 2016 10:05 am

Re: 2 weeks off Vanco, fear of relapse.

Postby ramu » Tue Jun 14, 2016 8:25 pm

I am so worried. I had 3 movements today, 1 formed, 2 wet D. Is a weakness in legs part of cdiff? My stomach feels awful. Is dificid easier on the intestines than vanco? Which is more effective- taper or pulsed? Thanks... Jonathan

NanciT
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Re: 2 weeks off Vanco, fear of relapse.

Postby NanciT » Tue Jun 14, 2016 11:58 pm

Jonathan,

Hang in there, if the test is negative then this all could be IBS. I was on Dificid for 3 months, the IBS post treatment lasted months, I still have it on occasion now.
Give it some time, I also tested negative twice, I thought 100% it was back and I had been on antibiotics for a UTI!
CDIFF creates alot of fear in people, I have never experienced anything like it. Start back on a bland diet for a few days and see how you do.
Take Care
NanciT

ramu
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Re: 2 weeks off Vanco, fear of relapse.

Postby ramu » Wed Jun 15, 2016 12:12 pm

I think I eat very bland. Let me know if you see anything not ok: yogurt, oat bran with honey (1 tbs) and blueberries, eggs + tortilla, ham sandwich (sheepherder's bread), apples (chewed thoroughly), apple sauce, chicken and boiled veges for dinner. I keep losing weight. Its scary. I can't keep it on.

NanciT
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Re: 2 weeks off Vanco, fear of relapse.

Postby NanciT » Wed Jun 15, 2016 4:32 pm

Looks good if you tolerate it well. The fresh fruit is something I still have trouble with, I have had small pieces of apple so far.
Give it time
NanciT

amyc
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Re: 2 weeks off Vanco, fear of relapse.

Postby amyc » Wed Jun 15, 2016 6:54 pm

Have you spoken with your doctor yet? Do you like baked potatoes? Those always are great for me, and a teaspoon or so of butter, salt and pepper never caused any problems either.

beth22
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Re: 2 weeks off Vanco, fear of relapse.

Postby beth22 » Wed Jun 15, 2016 7:09 pm

It might be the yogurt that is bothering you. I was never lactose intolerant and for my first round of vanco, I could tolerate it fine. But, during the second round, I could no longer tolerate yogurt, milk, etc. You might try not eating it for a day to see if it makes a difference.

Ril
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Re: 2 weeks off Vanco, fear of relapse.

Postby Ril » Wed Jun 15, 2016 11:07 pm

Could be yogurt or fruit for sure, or might be oat bran. I would eliminate one of those at a time and see what happens.
In terms of weight loss I could not gain weight for a long time but eventually, much later, it turned around.
Have you tried supplements like Ensure or Boost to up your calorie intake?
Rita

Lisa33
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Re: 2 weeks off Vanco, fear of relapse.

Postby Lisa33 » Thu Jun 16, 2016 9:54 am

Hi Jonathan - I just wanted to say that the weight loss scared the heck out of me too when I had c-diff. I think most of us lost a decent amount of weight during c-diff and in early recovery. I lost 15 pounds in a very short period of time - I don't think it was even 3 weeks. The weight just kept dropping off. I wasn't able to eat at all when I took Flagyl because of terrible nausea. On vanco, I got a little better, but it was still very bland and little bites. In early recovery, I had terrible mornings which was always accompanied by nausea, so I didn't eat much even then. I think you just have to give it some time for your gut to heal. You will start to get a bigger appetite and want to eat more. Eventually the weight will come back up. The others gave you great advice on what to try with diet. As Rita said, if you can tolerate Ensure or Boost, that can be helpful.

Also - I found that smaller, more frequent meals/snacks was better than 3 meals per day.

Lisa

Nancy1
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Re: 2 weeks off Vanco, fear of relapse.

Postby Nancy1 » Fri Jun 17, 2016 12:20 am

I lost 27 pounds to cdiff. What helped me to get my appetite back and stop losing weight was Primadophilus Reuteri.


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