thinking c-diff - scared, please help...

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sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/23/2009 10:46 PM (GMT -7)   
So a few days after I started my Cipro/Flagyl cocktail I started in with the D.  Typically I am loose, bloody, etc, but not D.  Last time that happened it went away when I quit, so I figured Oh Well. 
 
After 2 weeks I quit Flagyl.  After another 1 1/2 weeks (so 3.5 weeks total) I quit Cipro.  The D was intolerable...  Accidents all the time.  It doesn't seem to hit during the day (thank goodness) but come 6pm until 10am I am completely at its mercy.
 
My GI is out of town and has been for a week.  He's not coming back until about May 4th.  They said they don't really like patients to see the other doc when one is out so they wanted me to wait.  I pitched a fit and insisted on a stool sample which I turned in last night.  Today I went to my family doc just to see someone.  They did another CBC and a blood culture (new for me).
 
Since I started the antibiotics, my white blood cell count went up from 13.2 to 14.9.  My HCT went from 34.2 down to 32.2.  My stool are watery, terribly foul smelling, pain and NO control whatsoever.
 
Nobody is willing to treat me until the stool sample comes back which won't be until Mon/Tues.  I am going insane with stress and fear.  I am *terrified* that the C-diff will go out of control.  I don't know if I am rational in any way about that, but it's how I feel.
 
I know the two main treatments are Flagyl and Vancomycin.  I have plenty of Flagyl.  I could start now...  But, what if it makes it worse?  I don't know what to do.  I've considered checking myself in at ER, but I feel stupid doing that. 
 
I am really scared...  Thanks in advice for any advice anyone can give me...
 
Oh and I am taking VSL#3 and another good quality probiotic - one in the morning and the other in the evening.  I don't notice a difference...  Can hardly eat.  Nothing is being digested.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 not enough response
--currently taking budesonide suppositories, 3mg at night.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/24/2009 2:30 AM (GMT -7)   
(((Shari))) I have no experience with c-diff so can't offer any advice, but I do send you my support and sympathy. You've been through so much; you really don't need this.

I wonder if it might be a good idea to take yourself to the ER. I'm worried that if you can't eat anything, you're at risk of becoming dehydrated over the weekend. But then, maybe you don't want to have to deal with uncontrollable d in the public atmosphere of a hospital... I don't know...

*another hug*

Ivy.
Co-Moderator Crohn's Forum.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 4/24/2009 4:45 AM (GMT -7)   
Shari, I am so sorry! One thought that came to mind is the probiotic Florastor. It's often prescribed by doctors to help fight Cdiff, though it is available over-the-counter. It is one strain of a specific probiotic, Saccharomyces boulardii (not in VSL#3), that has been proven in medical studies to fight the Cdiff bacteria. You can google Florastor and read about it and also Saccharomyces boulardii. I believe it's Wiki that tells about the successful studies against Cdiff. Just a thought...
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/24/2009 5:06 AM (GMT -7)   
I have had CDiff several times. It is ok, it takes time for it spin out of control, as long as you are keeping hydrated you should be ok, but as always if you feel bad enough to go to the ER PLEASE DO!
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/24/2009 7:32 AM (GMT -7)   
My husband had c-diff last year, and the combination of c-diff and crohns's landed him in the hospital for about 6 weeks, and it was absolutely terrible. The hallmarks of c-diff diarrhea are very very watery, and very very foul smelling. If you have it, and it gets worse, it can damage your colon quite a bit with psuedomembranous colitis. When he was initially diagnosed with c-diff we too waited for the weekend to be over, to make an appt with his doc, then for the stool results to come back, all in all, adding about 8 days of delay between onset of symptoms, and start of vancomycin. I don't know which started first, the c-diff or the crohn's flare, but boy in those 8 days, things very quickly spiraled out of control, and it took the rest of the year, for my husband to get some of his strength back. We decided that the next time he exhibits symptoms of either crohn's or c-diff, we go to the ER right away, and get a stool and blood test - just to start treatment as early as possible, even if we have to pay extra for the ER visit.

I am not trying to alarm you - in our personal experience, it is best not to let c-diff take hold, especially if crohn's is also flaring. For my husband it was like the c-diff caused his immune system to go completely nutso, and attack his colon mercilessly in addition to the c-diff doing its worst. I don't think there's any harm in using the flagyl, especially if flagyl has not caused you problems when you've used it for crohn's. In addition to VSL, I also added a yeast called sacchromyces boullardi to my husband's regimen (sold as florastor), it is known to have some efficacy against c-diff.

MMMNAVY, perhaps you had a milder experience with c-diff, but for my husband it just was horrible. Shari, I'd advice you to seek medical assistance as quickly as you can, and to start treating the c-diff, and your crohn's aggressively.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/24/2009 7:50 AM (GMT -7)   
Thank you all So much... I woke with a 101 degree temp this morning so I called the hospital. We discussed with a nurse there if I need to be admitted. We came down to getting in to see my regular doc (they could *not* even get a hold of the GI on call at my GI office!!!). I am seeing them today to get more stool sampling and they are going to follow up on the cultures I submitted on Wednesday. I don't want to go to ER, but I have got to get some attention and treatment.

It seems like nobody will treat until the stool samples come back. I've asked three doctors... I guess it makes sense, but I also know the stool samples are not always reliable. So I guess if they get the results by tomorrow They can start my treatment asap instead of waiting until Tuesday for my GI's office to step up. I'm thinking it might be time for a new GI. They've been completely unhelpful with this and it's NOT the kind of thing a patient should have to deal with while it spirals!

Thanks again so much... if anyone has more advice I welcome it all. I am going to the store this morning to get Florestor. I hope that helps! Thanks for the suggestion!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 not enough response
--currently taking budesonide suppositories, 3mg at night.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl


dt19&99
Regular Member


Date Joined Apr 2009
Total Posts : 174
   Posted 4/25/2009 9:33 AM (GMT -7)   
Is this c.diff just caused when you use antibiotics? Or does being diagnosed with Crohn's make you more apt to get it? I just heard about it last week because my girlfirend works at a convalescent center and said one of the patients there had it so I looked it up and it sounds terrible...

And sr5599, I think I'd be looking into new GIs as well... To go out of town for a while and not recommend anyone to see if things flare up and just expect you to wait over a week or so until they get back doesn't seem logical... Expecially since they always have to run tests which delay treatment longer.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/25/2009 10:12 AM (GMT -7)   
Antibiotics can create an environment conducive to the overgrowth of c-diff bacteria, which is why a lot of times pseudomembranous colitis caused by c-diff is also called antibiotic associated colitis. Some antibiotics are particularly bad about this - and these include clindamycin, keflex, augmentin, amoxicillin. Some antibiotics are fairly safe to safe (in terms of causing c-diff) and these include macrobid, flagyl, vancomycin, Aminoglycoside. Most people who get infected with c-diff do so because of taking some of these antibiotics, or because they've been in a hospital setting where c-diff is common (like in nursing homes).

But my husband was neither in a hospital setting, or taking antibiotics when he got diagnosed with c-diff. Folks with IBD like Crohn's a more susceptible than the general population to infection with c-diff. So folks with IBD can get c-diff infections without having any of the risk factors for c-diff such as a hospital setting, or use of antibiotics.

Shari, I hope you are feeling better, and that you've got some help by now.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/25/2009 10:46 AM (GMT -7)   
Well, it's been very frustrating. I woke yesterday with a temp of 101. Peaked at 101.8 yesterday. They told me my stool sample tested neg for c-diff. Everything I've read is that they are not always reliable. I tried to push for treatment regardless, they refused.

They DID get me in for a CT scan since my low-grade temps have been going on for about 3 months. Showed continuous colitis from left side down to rectal. My Crohn's is typically in rectal with some in traverse. I asked, "Couldn't that me the pseudomem. colitis?" They wanted to admit me to the hospital, but my daughter has her last State gymnastics meet today and I could not miss it.

In the meantime, I admit that I have made the decision to self-medicate. I cannot get treatment from anyone... I have Flagyl in my kitchen and I've been prescribed it off and on even just a few weeks ago. It's not so far off to think it would be a good thing to do with the fevers. I also started Florestor as suggested by EMom.

I don't know... The CT prep cleaned me out (almost like the colonoscopy prep!) but whatever the case, I am feeling like my belly is settled at the moment - for the first time in weeks.

Thank you all for your support. I welcome all advice. And, pb4 is right... take probiotics with antibiotics. I blew it BIG time... I will never do that again. I take VSL but get lazy... Laughs on me, I guess.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 not enough response
--currently taking budesonide suppositories, 3mg at night.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/25/2009 11:14 AM (GMT -7)   
Hi 5599 how are you doing now? Glad to here that your belly is settling down a bite so did you get the results back from your CT scan yet hopefully it will show were the problem is?I have a question for you i have never heard of C-DIFF what is i don't think i have ever had that test is it blood work but on the other hand don't they go crazy testing us with everything always maybe i have had it and don't remember how do you get your lab results your numbers levels and so fourth our doctors wouldn't think of letting us see our charts or any results for that matter i know my chart is thick but i have nevr got to peak through it i tried once when i left ER to be sent up to the ward but the nurse tld me very quick that i wasn't allowed to look at my charts its for doctors eyes only i think that what ever is in that file is my concern and it would shead some light on things for me. Best of luck to ya 5599. Jenn smilewinkgrin
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 4/25/2009 6:01 PM (GMT -7)   
When getting tested for c diff, always ask for 2 stool samples because of the high rate of a false negative.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/27/2009 5:26 AM (GMT -7)   
sr, I wanted to check and see how you are doing? I do agree with what everyone else said. I should clarify that my crohns has been so bad I did not even know that I had Cdiff the times I have tested positive for it (when you are going 30+ times a day it is hard to know if there is a change because of cdiff). PLUS, I wondered from your first post if something else is going on? 
 
Especially with that fever, were you on the cipro and flagl for the crohns or for some infection?  
 
I also think chroniemom has a very good idea, but I would caveat it with make sure you keep a couple of days (like at least 3 to 4 between the samples and take them at different times in the day) because sometimes we can feel it before it is has the ablility to be evident in lab.


Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 4/27/2009 6:29:55 AM (GMT-6)

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