Worried about a relapse. Why is this happening to me!

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MkeitStp
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Worried about a relapse. Why is this happening to me!

Postby MkeitStp » Sat Mar 03, 2018 6:41 pm

I'll start with a little about me I'm a 23 year old female. Mom of 3, only ever heard of cdiff when I worked in the nursing home back 5 years ago. Never did I think I would get it! Over all health is pretty fair. I initially went in for a fullness feeling/pressure under my right rib cage that wrapped around into my back. The pain had gone on for about a week on and off but then became constant for 2 days. The day before I went in to the doctor I started having a tight pain/cramps across my stomach. I figured I was getting the stomach flu. It had just gone through our house the beginning of January. While at the doctors office(Monday the 12th) I went to the bathroom and (tmi) had watery diarrhea. I proceeded to have it 2 more times that day. I had some blood work done and got scheduled for an ultrasound of my gallbladder (thinking gall stones would be the cause of my pressure/fullness). Bloodwork came back normal. During the ultrasound they discovered I have a fatty liver and a lesion on my right kidney. The fatty liver diagnosis stopped me in my tracks. I don't consume alcohol, don't have diabetes and I'm certainly not overweight. 5ft2 123lbs at the start of all this. So I had to do a fasting set of blood work on Wednesday and mention the watery diarrhea that I had for 2 days. She had me collect a stool sample, which had been relatively formed considering the diarrhea the previous 2 days. On Friday morning I had a CT scan for the lesion on my kidney. Everything came back looking good. The lesion had benign charcteristics. Then about mid afternoon my doctor called and said my pcr panel was showing I have cdiff and astrovirus. She sent in an order for metronidazole 500mg 3x a day for 10 days. Which I started that evening. I have (tmi) mushy/soft stool averaging 2-3times a day throughout the 10 day course. Still on and off pressure under my ribs. The metallic taste was awful and I dont ever want to take it again! I finished my last dose on Feb 26th at dinner time. Since then my stool has been staying pretty well formed. Still "feels" soft coming out and looks fuzzy around the edges. Still going 2-3times a day and Yesterday felt like my most normal day. But today...not watery but deffinently not formed. I'm terrified its coming back! Ive gone 3 times all this am. The last 2 smelled like raw onions (assuming its because I ate onions on my homemade veggie pizza the night before). Could this just be from the veggies I ate yesterday or is it the start of it all over again!? I lost 10lbs and have yet to regain any. I am taking floragen 3 once a day on an empty stomach. I tried to call my doctor but being a weekend I wont hear back til Monday. Do I get rechecked? Is it normal to have soft stool after finishing metronidazole? Should I request to see a gi specialist if this is indeed a relapse? Help!
Edited to add: My dog is also being treated for cdiff. Assuming he caught it from drinking out of the toilet! He was having (tmi) 5+ small mucus/bloody/foul smelling stools on the carpet..which leads to my next question. Because I can't bleach carpet does this mean we should tear it up? Will the spores in my carpet reinfect me or him? I also further questioned my doctor and they said that toxin A was present in my sample. The last time I was on antibiotics was in November for a sinus infection. And the only time I was around the hospital was for my outpatient ultrasound. I'm super vigilant about washing my hands I just cant wrap my head around why I caught it!

Megs717
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Re: Worried about a relapse. Why is this happening to me!

Postby Megs717 » Sat Mar 03, 2018 11:18 pm

Hi there. I wish I had a good answer as to why this is happening to you, but needless to say, I've asked myself the same question plenty as of late. Your story resonated with me some because last year, I went through the same thing with the pain in my right side. I had ultrasounds, a HIDA scan (thinking it was my gall bladder) a CT and an endoscopy and it all came back perfectly normal. The GI tract is a strange thing. If they can eliminate all the scary possibilities, that's great news. Everything else is more or less a grey area and finding a balance. I also had fatty liver. I am not overweight. I am not a drinker. I am in my 30s and typically the picture of health.
As for C Diff, it can also be caught in the community. As for me, I got it starting the end of January after taking antibiotics as a preventative measure (I had a laser facial) and I ended up with C Diff. I took 10 days of Flagyl and had the same 2-3 stools per day. I relapsed within a few days. The GI I saw thinks it never went away, just the symptoms were suppressed as they don't even want doctors prescribing Flagyl anymore. Anyway, I went back to the hospital last Sunday and now I am on Vancomycin. Trust your gut (oh, the irony) if you think it's back, don't wait and go get on Vanco. Don't mess with Flagyl. That stuff is awful and made me feel worse, and presumably more sick when the symptoms reared their ugly head. I have been on Vanco now for 6 days and its FAR easier to take. I don't even notice it. Hang in there, this too shall pass. Stay on top of it, and don't wait for days and days if you feel it's returned.

Megs717
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Re: Worried about a relapse. Why is this happening to me!

Postby Megs717 » Sat Mar 03, 2018 11:24 pm

One more quick thing to note - when I first relapsed, I did not have watery D. While I was on Flagyl, I had formed, but soft stool and went 2-3 times per day, but it still felt kinda urgent. My doc said that was my first sign actually. Also, the original doc I saw had me on 2 - 500mg Flagyl pills for 10 days. It should've been 3 for 14 days - BUT, they've finally come out and said Flagyl isn't effective and to start with Vanco. If you're feeling poorly tomorrow, go into the ER and specifically request Vanco. Also, the one thing I can say to you or anyone else newly experiencing this with me is this - Definitely go see a GI or Infectious Disease doctor in your area. It's VERY apparent that my primary care doc had little/no experience in this, and had I gone into a GI, I may have avoided this relapse I am currently in. Hang in there, you're not alone. I am here suffering with you!

MkeitStp
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Re: Worried about a relapse. Why is this happening to me!

Postby MkeitStp » Sat Mar 03, 2018 11:46 pm

Megs717 wrote:
> One more quick thing to note - when I first relapsed, I did not have watery
> D. While I was on Flagyl, I had formed, but soft stool and went 2-3 times
> per day, but it still felt kinda urgent. My doc said that was my first
> sign actually. Also, the original doc I saw had me on 2 - 500mg Flagyl
> pills for 10 days. It should've been 3 for 14 days - BUT, they've finally
> come out and said Flagyl isn't effective and to start with Vanco. If
> you're feeling poorly tomorrow, go into the ER and specifically request
> Vanco. Also, the one thing I can say to you or anyone else newly
> experiencing this with me is this - Definitely go see a GI or Infectious
> Disease doctor in your area. It's VERY apparent that my primary care doc
> had little/no experience in this, and had I gone into a GI, I may have
> avoided this relapse I am currently in. Hang in there, you're not alone.
> I am here suffering with you!


I haven't had any more bowel movements since this am. Were you going through out the day or all around the same time? I ate a very bland diet today so I guess I'll see how my bm is in the morning. I called the nurse on call today and they were going to forward the message on to the practitioner I have been seeing but I more than likely won't hear back from her until Monday our Tuesday. If it's still loose tomorrow like it was today I'm going to call the nurse and see if I can request the vanco. If I have to go to the er I will. I'm a very anxious person when it comes to taking new antibiotics because I'm allergic to quite a few. Thank you for your input. I'm so tired of being sick.

Megs717
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Re: Worried about a relapse. Why is this happening to me!

Postby Megs717 » Sun Mar 04, 2018 12:12 am

For me personally, my BMs were in the morning or afternoon. Not often in the evening until I got very sick. I am also an anxious person. Just remember you know what this is, and you'll get rid of it. Sometimes it just takes longer than others. Also, I loathe medications. On Flagyl, I woke up many times throughout the night in a state of panic. Vanco has been super easy. I don't even notice it. Normally I hesitate to take ANY medicine, but by the time I got the Vanco, I was so sick I didn't even wait for water to swallow it. Anything to get it working as quickly as possible!

MkeitStp
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Re: Worried about a relapse. Why is this happening to me!

Postby MkeitStp » Sun Mar 04, 2018 12:23 am

When in doubt I get it checked out lol! There are so many times I've questioned wether I really feel one way or if it's my anxiety making me think I feel that way. I sometimes feel like I get myself more worried than I should be and sometimes I'm not as worried as I should be. I've read that many people have less than normal stools weeks after being treated for cdiff and then there are people who relapse right away or days after treatment. I want to believe that it's just because I ate a ton of veggies yesterday but I also know there is a high chance it is a relapse mainly being that I was on flagyl and not vanco to start off with. I guess tomorrow will be the deciding factor on what I do.

Megs717
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Re: Worried about a relapse. Why is this happening to me!

Postby Megs717 » Sun Mar 04, 2018 12:34 am

For sure. Anxiety can wreak havoc on your health, mainly your GI tract. I've dealt with it my entire life. My relapse was hard and fast, and there was no mistaken that's what it was. Within 4 days of stopping Flagyl, my white blood cell count was 17,000+
Your stomach may be weak for a while. Try not to let it consume your mind. You're young and will bounce back from this!

MkeitStp
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Re: Worried about a relapse. Why is this happening to me!

Postby MkeitStp » Sun Mar 04, 2018 12:37 am

When you relapsed was it watery D? Or just soft? What other symptoms did you have?

Megs717
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Re: Worried about a relapse. Why is this happening to me!

Postby Megs717 » Sun Mar 04, 2018 1:00 am

I sent a PM :)

shooten
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Re: Worried about a relapse. Why is this happening to me!

Postby shooten » Tue Mar 06, 2018 5:11 pm

Whenever I relapsed there was no question. My BMs would go back to just the way they were in the beginning and I would feel awful. I will say during c diff me and veggies were not friends. My digestive tract would not process them at all, especially raw veggies. The only way I could eat veggies was to cook them really well. I would definitely ask your doctor about sending you to a GI. My PCP followed the typical flagyl first, then flagyl again, and was thinking about it a third time but I brought in a journal article with a vancomycin taper/pulse protocol and said I want to follow that. After that he sent me to a GI who knows C diff and the first thing he said was if i relapse again he is putting me on dificid and if that doesn't work then he would do an FMT. The GIs who know C diff don't seem to want to mess around with the lower level drugs. Also, after finishing the antibiotics BMs can be all over the place so try to follow the 3 day rule because you don't want to take more antibiotics if you don't have c diff. If you aren't on any probiotics get some, a lot of people here use Florastor and VSL #3.

MkeitStp
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Re: Worried about a relapse. Why is this happening to me!

Postby MkeitStp » Tue Mar 06, 2018 5:18 pm

Thanks for the reply. My stool sample from yesterday came back positive for toxin a & b. Was just toxin a previously so that is pretty discouraging. The doctor I am currently seeing ran some blood work today. My creatine, esr and wbc are all within normal range. I deffinently have the gurgling/rumbling, pressure under my right rib cage again. But I don't have watery D its more mild and last night I actually had a hard time going. I only went twice yesterday and so far once today. She is sending in a referral to a GI but said it could take a while to be seen by one. I just picked up my prescription on vancomycin 250mg 3x a day for 10 days. If need be we will do taper/pulse dosing for 6-7weeks. This is surely a miserable thing to deal with. I think my biggest fear right now aside from what if this doesnt cure it is worrying about toxic megacolon. Ugh.

shooten
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Re: Worried about a relapse. Why is this happening to me!

Postby shooten » Tue Mar 06, 2018 11:27 pm

I recommend the taper pulse protocol. I was on 4 a day for a week, then three a day for a week, 2 a day for a week, 1 a day for a week, 1 every other day for a week, 1 every third day for a week, and finally 1 every fourth day for a week. This is what finally kicked it for me. Do not take vanco on an empty stomach. I did this and it gave me horrible heartburn symptoms. When I stopped taking it on an empty stomach it kicked in quick and I could eat almost anything I wanted which was nice cause it got me to stop losing weight.

MkeitStp
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Re: Worried about a relapse. Why is this happening to me!

Postby MkeitStp » Wed Mar 07, 2018 12:11 am

My doctor called me today and said the doctor she had been consulting with recommended I take 500mg of vancomycin 4x a day AND 500mg of flagyl 3x a day for 10 days and then they would retest after 10 days... I don't want to take flagyl again. And I took my first dose of 250mg of vancomycin tonight ( originally prescribed 250mg 3x a day) and my ears are ringing pretty bad. I've only been having 2 bms the last 2 days. I don't get it.


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