I Have C Diff - Worst-Case For Pots! Anyone Else Dealt With This? Have To Travel For Holidays!

[iheartcats]

I was very optimistic it wasn't C Diff. The Doctor didn't even think it would be...but alas, it came back positive.

I'm panicking due to a flight I have Sunday, but he said if I start Flagyl tonight with a very good Probiotic I should improve within a few days.

I knew I felt really bad - and it's even worse because I took a dose of Imodium today. I'd been putting it off (they kept telling me to take one to stop the intense diarrhea and I wouldn't, but finally gave in). They said one dose wouldn't cause that much issue, but it would cause the severe abdominal pain I'm having.

I can't believe it. I almost didn't take that does this AM. I'm glad I did not take more.

I'm also glad that I listened to you guys and got the C Diff test today. Thank you for telling me to do that.

For those who have had this - has anyone felt somewhat better in a few days? Should I wear Depends on the flight? I already have a cane chair and medical note for POTS...I don't know how much more I can deal with.

[MomtoGiuliana]

Oh you poor thing!

My sister got this--presumably at the hospital when she was treated for a large kidney stone that required a minor procedure (but required overnight stay). It took her a long time to get over it b/c she kept getting recurrances. But she is fine now (she does not have POTS, just to clarify). It did seem to always clear up quickly for her with Flagyl. Hopefully by Sunday you will feel greatly better. I know how severe it can be and I am sorry you are experiencing it.

[iheartcats]

MomtoGiuliana: I'm very glad to hear your sister's cleared up fairly quickly with Flagyl. I keep reading the 'worst-case scenarios' online (I'm sure you know how that is!)...but my Doctor keeps telling me Flagyl and Probiotics often make you feel better in a few days. And stopping my problem antibiotic should help, too. Still, very stressful!

[rubytuesday]

I might suggest Bentyl which I took (and still take occassionally) if you can. I've had the C-diff and you rock if you can do this travel. The Bentyl really helps with the cramping and spasms and makes me a little drowsy so that I can sleep through some of it once the spasms ease. Best wishes.

[issie]

Bentyl is great, but for me it loosens my colon which goes into spasms. Not sure how it would go if there is severe D. Bentyl and Tramadol are the only two things I've found that I can take that helps my POTS.

So, sorry you're so sick. I so remember my spell with the colitis. For me, it had gone so far that the doc said I should've been dead. It was the worse case he'd seen in his entire 30 year career. I was so weak I could hardly ride in a car and my visits to the bathroom were every 10 minutes. I got so bad and so weak I couldn't get off the floor to get on the toliet. So, not sure how bad yours is - but you will have to plan whether you are WELL enough to take your trip. The airlines will usually work with you when there is a real bad illness.

Get some of the kefir and take your probiotics. Feel better.

Issie

[jackiemxoxo]

yes, I had c-diff when I first got sick with dysautonomia after having my gallbladder removed in the hospital. I was one of the unlucky few that did not respond the flagyl and it made me throw up and my legs numb. I did not know those were side effects at the time (I thought it was the pots) so be careful if you are feeling very nauseous. I ended up switching the vancomyocin which was much better and eradicated the c-diff faster. The only downside is it is more expensive. When I had c-diff, it made me really hypovolemic from the diarrhea which was causing me to almost faint. so be very careful and drink lots of fluids. If your c-diff gets really bad, you will need the IV fluids because dehydration can be dangerous. c-diff is a nasty bug that can reoccur when you take any other antibiotic in the future so always keep that in mind. I hope yours clear up and you get past it! Also, the best probiotic i found was florastor (helped to stop diarrhea a lot) and I also had post infectious ibs for about 6-8 mths after c-diff.

[MomtoGiuliana]

This is what my sister wrote just now when I asked her about this..I stand corrected! I hope this is useful info...

I'm allergic to flagyl. Flagyl is always prescribed first because it is cheaper, and it works for some cases,but I think vancomycin is more effective. Unfortunately it costs about $100 per day (for 4 pills), it is very expensive. The vancomycin worked eventually, after it was prescribed for a period of approximately 40 days straight, but I had c diff for six months. It is standard to give a 7 day dosage, and they kept doing that for six months and eventually it resolved.

[iheartcats]

Flagyl seems OK to me...it's not bothering me in any major way thank goodness. I've had mild to moderate stomach pain for a while so I think that's just part of the C Diff.

They did tell me Vancomycin is used as a second-round if you need it (they try to clear on Flagyl for 10 days).

I also started a probiotic with '4 strains' so of course it was $30 for 30! It says it's usually 1 a day, but you can take 2 dealing with various gastro issues so I'll be taking 2 for a month.

They caught mine somewhat early. It started on Friday and I was on Flagyl by Tuesday evening (apparently they don't always catch the C Diff that quickly or people think it's just food poisoning/flu). I'm very glad I pushed for the culture so soon! I think that really helped.

Still hard to force food. Lots of saltines and yogurt.

[andersondebra]

Hi,

I can't believe that someone brought this up right now, you see I just got hit with an unbelievable sinus infection and need to go on antibiotics, which scares the heck out of me b/c back in 2007 I took some clindamyacin for an infected tooth and within 3 days developed c-diff. Unfortunately, several months of flagyl never cleared mine and then I was put on vancomycin for almost 7 months straight. It still never cleaned it up and I went from 142 lbs to 79 lbs in the first three months. I was repeatedly hospitalized and then put on a TPN feeding line. The doctors were looking into doing a bacteria colon transplant when an infectious disease doctor said that there was a new drug on the market that treats IBS but they were seeing a small amount of drug resistent strains of C-diff (which is what mine was considered b/c it never responded to any of the drugs) respond to this drug. So, I was put on Xiaxafen and within two weeks I had finally conquered the bug. In all I was infected for 11 months. I would then three months later for no reason at all break out with it again but again it cleared right up with xiaxfen. one month later again I got hit for no reason but again it cleared it right up. I have been c-diff free since, but have not had to use antibiotics since. Now I have no choice but to use them and I am scared. My GI doc has been made aware of it and is also starting me on xiaxfen, so we will see what happens. I also have been on three different probiotics and Keefer since the beginning with this bug and eat one activia a day, so we will see what happens.

Mine unfortunately, is one of those horror stories, but I was found to have a drug resistent strain and I was eventually dx as being colonized, which means I can have it sponatiously re-occur for no appearant reason and using antibiotics ever can bring it back out. The scariest thing is that I am afraid one of these days it will become resistant to Xiaxafen too, and then I do not know what they will do. And living on a TPN line like I did for 9 months was horrible but it kept me alive. I was fortunate b/c 22,000 people die each year from this bug.

My heart goes out to you and hope this drug works the first time around and bless you for having the strength to get on a plane and travel. For me it was all I could do just to go back and forth to the doctors. My best advice to you is don't forget to bring your meds, take them as prescribed and take all probiotics, I would also keep your doctors number with you incase you have any problems while away. One last thing, this is HIGHLY CONTAGIOUS, so make sure you wash your hands repeatedly, wash all underware in boiling hot water with bleach if you have it, and make sure to scrub your bathroom everyday with bleach or ammonia. If you are not very -very clean about this stuff you can re-infect yourself or others. When washing your hands do not use the hand sanitizers you must wash with soap and water because the hand sanitizers do not kill this bug. Trust me I gave it to my husband by accident during the 11 months that I suffered with it and that is when the infectious disease doctor explained all this to me and my family. I hate to say it but you should have nothing to do with helping to make food this holiday, b/c even if you think you have washed well all it takes is one cyst which is smaller than the head of a pin to be left on your hand somewhere and you will spread it to others. I know it sounds sick but this is how it spreads in hospitals and nursing homes, so please be careful.

My best to you and hope you are able to enjoy your holiday meal.

Debra

[rubytuesday]

Debra.

Eat yogurt with your antibiotic course. It doesn't matter what kind it is. It doesn't have to be they hyped-up stuff, just something you like or can tolerate.

[iheartcats]

Debra...Wow. You did have a worst-case scenario and that's very scary. Since mine seems to be responding to Flagyl, they feel it's a normal strain but I'll find out more when I see a GI tomorrow (they are squeezing me in because of my concern/situation). If the Flagyl wasn't working, I would be having many more 'movements' than I am. I'm also trying to eat more (I did not eat much for about 5 days) and that in and of itself is problematic especially with POTS.

But I feel so bad you had to get such a resistant strain. I am afraid to take antibiotics too and I'm prone to sinus infections and bronchitis. Going forward, I have to only take antibiotics as a final resort and that's scary.

I did not think about the meal. I will explain to my family why I cannot help cook. They will understand! I will also practice the good hygiene as I don't want to pass this on.

I do read about people having C Diff for weeks and going undiagnosed...and that's somewhat common? You would think it wouldn't be. But it's scary how easy this is to pick up, and how people don't even know they have it and how it's hard to avoid stuff.

I'm glad they caught mine early! And...I have to make the husband do the bleaching of the bathroom again. I just bought some and cleaned it yesterday! Such a pain when you're so tired, as you understand.

I'll let you know what the GI says tomorrow!