New and Confused

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Caligirl
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New and Confused

Postby Caligirl » Fri Mar 08, 2019 1:16 pm

Here is a little background on me:
27 year old female that has been a pretty healthy person my whole life. During my third trimester of my pregnancy (December) I got kidney stones and had to go to the hospital for them to monitor me and my baby because of the dehydration caused by vomiting. After two days in the hospital the pain stopped and I went home. I ended up back in the hospital a week or so later with kidney pain again, and was scheduled to have a nephrostomy tube put in the next day, so I stayed overnight at the hospital. I got the tube put in and went on my way. A week later I started having extremely frequent BM for a day, and then that night I was having WD every few minutes and stomach pains. I went to the hospital again first thing in the morning and they gave me IV fluids, took a stool sample, and stopped the contractions. I was still having WD and pain, but they discharged me and told me to go to my OB appointment later that day. I went to my OB office and she told me that I have c-diff. She prescribed me Flagyl for 10 days and a probiotic and a muscle relaxer to help with the pain so that I could sleep. I had my baby 3 weeks later, and had to have antibiotics due to an infection that I got from being in labor for so long. A week later I started having symptoms again and had a stool test done, and it came back positive. She referred me to a GI who prescribed me 125mg Vanco 4 times a day for 10 days. My symptoms were extremely mild this time compared to the first time, and I started feeling better within a day of taking the Vanco. A week and a half after I finished the Vanco I had my surgery to get my nephrostomy tube removed, kidney stones blasted, and stent put in and the urologist told me that I HAD to have one dose of antibiotics through IV since they were putting a foreign object in me. About a week later i started having the frequent bowel movements again followed by D. I called the GI and he ordered a stool sample that came back positive, so he is starting me on the 250mg Vanco and then going down to 125mg. I have some questions though because I had never heard of c diff before January and I’m so confused.

1. He told me that I don’t have to have any dietary restrictions. I see a lot of people on here alter their diet, is that because your stomach can’t handle the food? Or does it aid in curing the c diff? My symptoms are mild this time around and my stomach can handle anything right now, though I don’t have much of an appetite thanks to the depression that this has caused (started antidepressants last night).

2. What precautions should be taken during and after the infection? Right now me and my husband are using separate bathrooms, I bleach wipe the toilet after every BM, and I only use my towels one time and put them in a trash bag with my panties and pants until I wash those things separately. The GI said that if I’m a carrier that I need to do these things for the rest of my life, that I will need to carry bleach wipes with me to clean any toilet that I use in public, is this true?! That is what sent me spiraling mentally.

3. This is awkward to ask, but how do I continue to have a sex life with my husband? My fears of giving it to him and my baby have gone down a lot thanks to the precautions that I’m taking, but that is one thing that is still giving me anxiety.

4. Is it possible to NOT be a carrier? Like do some people completely get rid of it? Or is everyone always a carrier for the rest of their life? And if so, what does life after the infection look like?

I love my baby girl so much and I am thankful to have her and that she is healthy, but this has been the hardest 3 months of my life, and I’m trying to get through it and am hoping that life after this will be good again. I’m also hoping that the antidepressants that my OB started me on kick in soon. Any advice and encouragement is appreciated.

Musings
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Re: New and Confused

Postby Musings » Fri Mar 08, 2019 1:41 pm

1. I found, while on vanco, I could eat basically anything but afterwards (when your gut is left to heal and finish the "battle") discovered many foods caused issues which is why most will recommend eating bland and slowly introducing different foods back into your diet. Dietary choices won't cause a relapse though so technically you can eat whatever you want but wouldn't recommend it :-)

2. Transmission is fecal to oral so the biggest help against spreading is hand washing especially before preparing food and/or eating and if you can avoid preparing food while in an active infection, that's best.

3. I was single during my battle (and for a year or two afterwards) so really can't help here - sorry!

4. Some people remain carriers, others shed the bacteria entirely. Life after c.diff can be different for everyone but a lot of people are left with PI-IBS which can be for a few months, years, or forever. I still have PI-IBS, three years out, but it's much better than it was during my initial recovery and honestly doesn't affect my life all that much.

Caligirl
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Re: New and Confused

Postby Caligirl » Fri Mar 08, 2019 1:51 pm

Thank you for your reply. I’m also weary about starting this next round of Vancomycin for it, since my symptoms are gone. My stools have been formed and normal for the last 5 days. My GI says that there is no risk and that I should take them since the test came back positive and that I was having the symptoms last week.

Musings
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Re: New and Confused

Postby Musings » Fri Mar 08, 2019 2:00 pm

I would maybe recommend finding a new GI, one with more c.diff experience. In c.diff, you are treating for a cure not a test result so even with a positive test result treatment should not happen without symptoms. While vanco is a bit more gentle than Flagyl, it is still upsetting the balance of bacteria in your GI tract which could make you more susceptible for a relapse.

roy
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Re: New and Confused

Postby roy » Fri Mar 08, 2019 7:05 pm

An experianced Dr would say if theres no symptoms theres no disease.
Test results must match the symptoms to make the diagnosis.
Are you aware that 3 out of 4 babies carry c.diff?
It's fairly certain your baby picked it up as she was born and that is 100% NORMAL, no test or treatment needed (but be aware that you can pick it back up), your husband gets the diaper job from now on:-).
Most people do not become carriers but it's a very common natural bacteria that inhabits humans (and animals) in tens of millions of people without causing disease.
It's only a disease if it overgrows and even then it's only a disease if it causes symptoms.
It's regarded as normal and no treatment needed if a toxin test is positive and you dont have symptoms.

Caligirl
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Re: New and Confused

Postby Caligirl » Fri Mar 08, 2019 7:48 pm

Roy, how does someone know if they became a carrier or not? And if I’m not having an active infection, am I contagious? I’ve heard conflicting information about this. What precautions need to be in place when I’m not having symptoms? And do you have any advice about being intimate with my husband? I want to try to find a GI or ID doctor that is well versed in C diff, but I don’t even know where to start with that.

My current GI is saying that he wants to treat it because I was having symptoms a few days ago and the test came back positive, and that he wants to try to prevent me from being a carrier and “get rid of this once and for all”. I’m just so confused and honestly petrified. I’m such a happy person normally and this has driven me so crazy to the point that I started antidepressants yesterday. So it’s hard for me to tell if my loss of appetite is a c diff symptom or a depression symptom.

AllisS
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Re: New and Confused

Postby AllisS » Sat Mar 09, 2019 2:04 am

I understand why you'd be depressed, given the overwhelming amount of inaccurate information that your GI doctor has given you. Specifically, "The GI said that if I’m a carrier that I need to do these things for the rest of my life, that I will need to carry bleach wipes with me to clean any toilet that I use in public." This is absurd. Not only is it unnecessary; you'd be exposing yourself to whatever germs the public toilets might harbor in the process of messing around with bleach wipes after using them! C. diff is NOT easily transferred to others, including household members. Though it might be prudent to use a separate bathroom in the house, if you have that option, if you are having watery diarrhea, there is no need to continue this practice otherwise. Ditto the other practices that you mentioned. The "carrier" designation doesn't have any meaning with regard to transmission. I strongly suggest that you find another GI doctor or an infectious-disease doctor if you need further follow-up.

The only preventive practice that makes sense on a lifetime basis is to get in the habit of washing your hands thoroughly with soap and water prior to preparing or eating food, after bathroom use, and upon returning home from errands, etc.

Like you, I had kidney-stone illness (recently, last fall), and I, too, was treated with a stent and needed a couple of stone-blasting procedures. I, too, was apprehensive about the doses of antibiotic that the surgeon said were necessary in connection with the procedures. I talked with an infectious-disease doctor, who got in touch with the kidney surgeon to discuss the least-risky antibiotic option. Prior to at least one of the procedures, Macrobid was substituted for another, more risky antibiotic that he had planned to use. I didn't have any recurrence of C. diff after the antibiotic doses, whether due to sheer luck or to the choice of antibiotic I don't know. I also got advice from an infectious-disease doctor prior to hip-replacement surgery a few years ago, since several doses of antibiotics were required for that surgery as well; no C. diff recurrence after that surgery, either. With a c. diff history, having an infectious-disease doctor weigh in prior to an antibiotic being used can be very helpful, since specialists such as orthopedic surgeons and kidney-stone surgeons aren't generally as tuned in to antibiotic concerns.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

roy
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Re: New and Confused

Postby roy » Sat Mar 09, 2019 6:09 am

Your a "carrier" of at least 500 types of bacteria, plus many viruses, yeasts and fungi!
Some potentially nasty, some helpfull!
Most dont even have a name!
Just because you know what this one is does not mean you need to change your life.
If your healthy enough to be intimate theres no problem.
In fact, even if you had not had a diagnosis of c.diff theres a 1 in 10 chance that one of you had it as normal gut flora.
Reasonable hand washing is all thats needed.
1 : to prevent you spreading it if you did have it on your hands
2 : and the most important, is that you will prevent a brand new infection from c.diff or any other bacteria.
C.diff bacteria is common, its found on 1 in 4 shoes, 1 in 4 doorsteps. 1 in 20 "healthy" people carry it and 3 in 4 kids carry it.

If your BMs are normal, so are you!

Ril
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Re: New and Confused

Postby Ril » Sun Mar 10, 2019 9:07 pm

At this point, I can’t stress enough the importance of finding a new GI dr who is familiar with c diff.
The amount of erroneous information you have been given is inexcusable.

Best of luck,
Rita

D1dad
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Re: New and Confused

Postby D1dad » Tue Mar 19, 2019 10:16 am

Luckily my doc is also the provider, and has been at a local retirement home for 20 yrs so he’s somewhat of an expert. As far as dietary goes he told me “if you can eat i it than eat it” same way with alcohol or just about anything else. I’ve found this board to be helpful for the 2 plus weeks I’ve dealt with it and thus far I’m having great results from Flagyl. One things for sure though. If after my AB I have no symptoms, you won’t see me here. I know that this is awful stuff and I’ve experienced more than I ever wanna know, but setting around living in fear is something I won’t do as I beleive in the power of the mind as well as the body. I’ll hopefully put this in the rear biew mirror and live life without fear.


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