22F recently diagnosed with C Diff - lots of questions!

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mcflurry
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22F recently diagnosed with C Diff - lots of questions!

Postby mcflurry » Tue Apr 25, 2017 6:05 pm

Hi all -

I am new to this forum but I have read the rules and introduction so I *think* I am doing everything correctly, but if not please let me know.

I was diagnosed with C Diff April 21st after a positive stool sample. I am a 22 year old female graduating from university in May. I was recently injured while working with cattle and cut off the tips of two of my fingers on my right hand. I was put on Cephalexin 4x a day for 10 days as a result. Before making it through the full antibiotic treatment though I got horribly ill and suspected something else was going on, and lo and behold I was diagnosed with C Diff. Aside from my hand injury (which is healing super well and looks great thus far) I am a generally healthy person.

I am currently taking 500MG of Flagyl 3x a day for 14 days. It is miserable. I am still having horrible diarrhea and cramping, although not quite as bad as before I began the treatment. I am constantly nauseous and barely able to eat, so I'm losing weight. Sleeping is difficult and I have a HORRIBLE taste in my mouth, constantly. Although of this I understand to be quite normal.

So I have a few questions for you all, after pouring over this forum.

1) I can't wash my right hand currently as two of my fingers are bandaged and the bandages are not water-resistant. What should I do? I know hand sanitizer does not kill C Diff, so I'm at a loss.

2) What foods should I eat and avoid? I'm finding a lot of mixed stuff on the internet, and I'm not sure what to believe. Lately I've been eating applesauce, saltine crackers, bread/toast, yogurt and rice because I can't tolerate much else. I am a vegetarian, which complicates the protein situation.

3) Is it worth cleaning while I am still sick? Like should I clean my bathroom with bleach, wash my bedding/towels often, etc. while I'm still ill or is there no point as I'll later infect it?

4) Should I take probiotics while still taking Flagyl or just wait until after I'm done? Is there any point while on the antibiotic? I'm finding really mixed results about this on the internet too.

5) If the Flagyl becomes too unbearable to take (it sucks pretty bad right now and I'm only on day four) should I try and switch to another antibiotic? Is it worth it? Will it slow down my recovery time?

6) How can I make Flagyl more bearable? I'm getting conflicting advice. My pharmacist recommended I take it with food to reduce nausea but I've read elsewhere that taking it on an empty stomach is better.

7) I am scheduled to finish the Flagyl a week before my college graduation. My doctor told me today however that the symptoms may last up to a week afterwards. Needless to say I'm devastated and panicked that C Diff may ruin my graduation plans. Any advice for this? I already suffer from several mental health conditions and dealing with C Diff is really bringing out the worst of that. I am afraid I will never recover and lead a normal life again.

Thank you in advance!

beth22
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby beth22 » Wed Apr 26, 2017 1:41 am

Hi mcflurry - Welcome to the site and I'm sorry that you have to deal with this right before graduation. I will try to answer some of your questions and hopefully others will answer the ones I don't know about.

First, about the hand washing - I would call your doctor and ask because someone who is not a health professional really would just be guessing at an answer. I assume you can't get the bandages wet and no, hand sanitizer does not kill c diff.

As far as foods go, it varies from individual to individual. Are you certain the dairy products like yogurt are not causing you GI symptoms? I found that I could not tolerate them when I had c difficile. You could try and make some vegetable soup and puree it. That was fairly easy for me to digest. I'm not a vegetarian, but I know others are and will probably post some suggestions.

Regarding the Flagyl. If it is giving you symptoms and not really helping the D that much, I would see about getting switched to another medication. Dificid would be the best, but some insurance doesn't cover it. Check with yours before you ask the doctor. If not, vancomycin is easier on the system than Flagyl and has a better success rate. If your insurance does not cover it, it does come in a liquid form that has to be compounded, but it is much cheaper than the pills.

I took probiotics when I was on meds for the c difficile. I took them in between doses and I found that they did help me. Florastor is a yeast probiotic and that one will not be affected by the antibiotics at all. I did not tolerate that one, so I tried various and settled on VSL#3, which is a multi-strain probiotic. I still take it, although just part of a capsule. Many of the probiotics did not agree with me - Align, Culturelle, and some others. If you tolerate them, it is a good idea.

If you stop meds the week before your graduation, perhaps you can ask your doctor to taper your medication so that you are still on some kind of dose until after the big event. Usually tapering has a better success rate anyway.

georgina
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby georgina » Wed Apr 26, 2017 2:20 am

Sorry you are dealing with Cdiff .
If you cannot wash your hands properly then i might suggest thast when you go to the loo put on disposable gloves that you can throw away after using , especially when you wipe. And yes , you should clean your bathroom with bleach and wash sheets and towel with bleach and at high temperature , even though you are sick you need to practice good hygiene because you can infect others around you.
It seems to me that you have no response to Flagyl and it actually makes you even more sick so i suggest that you go back to your doctor and ask for Vanco or Dificid. Flagyl is given as a first line of treatment but it is not FDA approved as a Cdiff treatment and has lots of side effects and often fails to cure the infection.
About food : if you are a vegetarian it will be a little complicated as the most tolerable foods are meats (for me white meat was the only thing that i could eat without a problem in the first days ). You can also try vegetable soup , peanut butter , boiled carrots , mashed or baked potatoes , grilled zuchinni. I couldn't tolerate yogurt or kefir , and even now after 2 years i still can't have any , gives me gurgling and massive gas and bloating and i'm not lactose intolerant (i have no problems eating cheese and butter and cream).

Bobbie
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby Bobbie » Wed Apr 26, 2017 2:27 am

So sorry. Talk about double trouble.

I would take the other moderators' advice. Check out CDI - Nutrition for other ideas about what to eat.

Hint: buy white towels so they can withstand bleach and high temps. I ruined many towels before I "got wish."

C diff ruined my son's high school graduation for me. It also ruined my older son's wedding.

Be prepared with Pampers or some kind of padding to reduce stress. Try to "think positive" - I know how difficult it is.

Keep us posted. Best of luck.

amyc
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby amyc » Wed Apr 26, 2017 8:54 pm

If the flagyl doesn't make you feel better by tomorrow I would ask to be switched to vancomycin. You can go right from flagyl to vanco, and it has far fewer side effects. It costs more, but it is worth it, at least it was for me. I'm glad your hand looks good! The disposable latex gloves are a good idea. I would wear them while you load the laundry in the washer too. You're young and healthy, so I can't say I agree with your doctor's grim advice that symptoms will stick around for a week after finishing meds. Yes, you can suffer from post-infectious IBS, but that really shouldn't be anywhere close to as bad as C diff symptoms.

maxny1
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby maxny1 » Fri Apr 28, 2017 2:36 am

Hey, I was mostly veg but broke it temporarily during acute CDI- I lost a lot of weight and was fighting for my life.

I ate lots of (pasture raised) scrambled eggs, white toast, oatmeal, English muffins, silk unsweetened soy milk and rice krispies, tofu, boiled vegetables, lentil soup, bananas, peanut butter, olive oil, earth balance, Nancy's yogurt, kefir. I ate white chicken which I hadn't eaten in many years, and fish.

I was back to my normal diet and weight within a couple months (now i can eat curries, spicy foods whenever I please, 99% vegan, etc).

As for probiotics, I think they helped me, even during antibiotic treatment, and they are in at least one major CDI RX guideline as recommended adjunct therapy, despite mixed evidence (edit- I may have been misreading the guideline here- http://gi.org/guideline/diagnosis-and-m ... d-colitis/ "limited evidence" probably means "not enough evidence to recommend," like the other guidelines). I went for as broad spectrum and as many CFUs as I could. If you are in the US, and can afford it, the Renew Life and Garden of Life Raw brands at whole foods are each 30-40 different strains and up to 150 billion CFU. There is some evidence for the species S. boulardii too.

If your doctor can prescribe VSL#3, insurance may pay for it as well. High potency probiotics are not cheap.

As for Flagyl, good luck, I hope it helps, but the RX guidelines suggest switching to Vancomycin if you experience significant side effects or no improvement in symptoms after 5 days, and data indicate that Vanco is more effective at preventing recurrent CDI.

Congrats on graduation! Don't despair, you will beat this thing.
Last edited by maxny1 on Sat Jul 01, 2017 9:21 am, edited 1 time in total.

grandma7
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby grandma7 » Sun Jun 25, 2017 4:01 pm

Hi,I am also a new this week subscriber.
I am so thankful that I found this forum.I have read a lot of helpful information.
I got the c diff from Cipro that I was taking for diverticulitis, which I am not sure I even had,no testing for it,i was also taking flagyl for that. After finishing the meds was having bad D,I was tested for Cdiff,was positive. Put on Flagyl again after finishing that,I thought I was better.Think I started eating too many things I shouldn't have so much.Tested again positive for cdiff.I am on Vancomyisine. I had decided to put myself on a liquid diet for 3 days to let my colon and intestine rest a little.I have had some kefir and yogurt.I started taking Florastor probiotc.
How much extra cleaning do you really need to do.

beth22
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby beth22 » Mon Jun 26, 2017 1:38 am

Hi grandma7 and welcome to the site. Please read the first forum for more information and guidelines for posting.

This is an old thread, so it might be better to start a new one to get more of your questions answered. I will try to address the ones that you have asked. Some people become lactose intolerant with c difficile, so yogurt does not agree with them. I was one of those people. Kefir did not agree with me either. Neither did Florastor. It gave me a lot of gas and bloating, looser stools, and even a rash. Some people do well with it though. I had to try several probiotics before I found one that halfway agreed with me.

You may find that certain foods do not sit well. For some it is dairy, fruits and vegetables. For others it is gluten. You should start to see some improvement with the vancomycin.

I would give your bathroom a good cleaning and while you have active c difficile, wash your clothes in the hottest water possible. Bleach clothes that can be safely bleached. Also, use bleach to clean the bathroom. There are bleach wipes with real bleach that you can buy online. The ones in the supermarket do not contain bleach. Or you can make your own solution with 9 parts water to one part bleach. Some people keep a spray bottle of this solution to use on the toilet after having a bm. I never did, but I know others have mentioned it.

The most important thing is to practice good hand hygiene and have any members of your household do the same. Since c difficile is by fecal to oral route, you want to make sure that your hands are very clean after using the toilet, before preparing food, etc.

grandma7
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby grandma7 » Mon Jun 26, 2017 1:58 pm

Thank you,Beth.I had wondered about not having replies.Thanks for the info on new thread.I like yogurt and I got some kefir.It is ok.So far today I have had a banana and coffee.The D is not so much and soft.Hopefully the Vano is working.
Thanks again for your reply.So glad ad I found this site.

Ril
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby Ril » Fri Jun 30, 2017 3:47 pm

Grandma, I could also eat instant oatmeal ( not everyone can), toast with a little jam and tea, baked potato, grilled chicken, rice, crackers, egg beaters, banana, peanut butter and apple slices and a few pretzels for a snack. Try adding things one at a time to see how you tolerate each and make sure you stay hydrated.

Rita

grandma7
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby grandma7 » Fri Jun 30, 2017 7:39 pm

Thank you , Rita for your response. I am trying to not over due the eating.I have gotten my appetite back.Hopefully that is a good sign.
Thanks again,Rita and Beth 22

Bobbie
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby Bobbie » Sat Jul 01, 2017 1:31 am

Grandma,
Read CDI- Nutrition. Lots of info and even recipes, stay away from dairy products for now and also excess sugar.

Sounds as tho you are doing well. Keep it up.

grandma7
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby grandma7 » Sat Jul 01, 2017 10:36 pm

Thank you Bobby 22 .I have found a lot of info on this site by a lot of people and yourself.
I have been doing well.Hopefully The Vancomycin is working.I have been trying to stay away from a lot of gluten.I have been using soy milk.Still get a little tired at times.Not so much of the blahs.Still some fog but not as much as I have had.
I have tolerated kefir,but it isn't that tasty.It does have a lot of probiotics.Finished the florists that I had.I bought some culture today.I do like yogurt.
Thanks for all your help.

georgina
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby georgina » Tue Jul 04, 2017 1:51 am

A spoonful of yogurt or kefir contains more live cultures then a pill of probiotics , it's great if you can tolerate it . I have more then two years since I can't eat any yogurt or kefir without getting bloated and gassy.

grandma7
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Re: 22F recently diagnosed with C Diff - lots of questions!

Postby grandma7 » Tue Jul 04, 2017 5:53 pm

I am good with yougurt and kefir.kefir is just a little bitter taste.Georgina,sorry yogurt is a problem for you.Take care.


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