C Difficile/post infectious IBS

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m&ms
Regular Member


Date Joined Oct 2005
Total Posts : 51
   Posted 10/7/2005 8:52 AM (GMT -7)   
Hi,
I've been battling what GI doc's called 'post-infectious IBS' ever since an intestinal bout in May.  I live in South America so my plight has been somewhat dismissed down here as 'e-coli' or food poisoning.  After no change for the better by late August, I came home to the states for further testing.  The only thing I seem to test postitive for is c-difficile, which happens when you take too many antibiotics.  (I was on Cipro in May and some spanish named antibiotic in August).  They put me on Flagyl 12 days ago and I have been off it for 2 days.  I want to know if there are other out there who either had C-diff or Post Infectious IBS and how they're coping with it.  I still feel messed up and different than how I felt before this nightmare. 

7Lil
Veteran Member


Date Joined Apr 2005
Total Posts : 3269
   Posted 10/7/2005 8:57 AM (GMT -7)   
Hi m&ms, welcome to Healing Well!
I haven't had either of what you mentioned, but I believe we have at least 1 member who has: Sarita. Hopefully she will be able to give you some advice.
Are you currently taking (or have taken) any probiotics to counter the antibiotics? If not, you may want to try it to help replenish your good bacteria.
Just curious... where in south america were/are you living? I'm from Brazil and I haven't seen anyone else on here from the "South."
Take care and keep posting!
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dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 10/7/2005 9:03 AM (GMT -7)   
Hi m&ms,
I also have very limited knowledge confused of this as well and have not seen it brought up too much.
I did find something interesting when searching for some answers for you though, this looks like it gives a lot of details:
tongue  
Hugs, Des
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Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 10/7/2005 12:19 PM (GMT -7)   

Oh man, I just wrote this huge thing for you and my computer crashed.  Okay, let me sum up:

Your C. diff was treated and hopefully your diarrhea will begin to abate.  That nasty bug can wreak havoc on your guts.  If your diarrhea doesn't go away, you may have a tricky parasite.  U.S. doctors and microbiology labs have no clue how to correctly test for parasites.  You need to send three samples of your stools to someone who really knows their stuff, and they need to test for all the weird, crazy stuff that they don't normally see.  They absolutely need to do a stool culture. 

I lived in East Africa and parts of South America for months, and contracted several parasitic infections over the course of my travels.  High fevers were the mainstay symptom (up to 104 degrees); diarrhea was always terrible, like 30x/day; stomach cramps could be absolutely debilitating.  Three years later, I still have low-grade fever (around 100-101), very frequent and sometimes bloody diarrhea, and stomach cramps.  IBSers tend to have a lot of colicky abdominal pain and alternating constipation and diarrhea.  According to many sources, IBS should not cause nocturnal or bloody diarrhea (unless you have hemorrhoids), fever, or significant weight loss.  If you have these symptoms, I would be very suspicious of an IBS diagnosis.  There is probably something else going on that should have focused treatment!

Your diarrhea may improve on its own, if you're lucky.  In the meantime, here are some things that have helped me intermittently:

1) Fiber supplements, like Citrucel - make it into a slurry, like a heaping tablespoon of the powder in 3-4 oz. of water.  Start slow, once a day, and increase it as you can.  Sometimes this causes gas and discomfort in people, which is why you need to start slow.

2) Imodium or Lomotil.  These usually help most people, but you want to make SURE you don't have a parasite or bacterial infection before you take them.

3) Probiotics, like Lil mentioned, are a must.  Acidophilus capsules - 4x/day.  Yogurt is a good bet too.

4) Anti-cholinergics like hyoscyamine or dicyclomine can help with the cramps, if you have them.

5) A good multi-vitamin is important if you have a lot of diarrhea.  Take it with food so it doesn't upset your stomach.

6) Stay hydrated with diluted Gatorade (Gatorade itself is full of sugar, which can cause worse diarrhea; if you dilute it by half with water, it's a better hydration tool) or Pedialyte.

I totally feel your pain.  Did any of this help?  Let us know how you're doing!


sick&tired
Regular Member


Date Joined Sep 2005
Total Posts : 25
   Posted 10/7/2005 12:50 PM (GMT -7)   
Dear M&Ms,
I just did some research for friends of my cousin who have PI-IBS contracted from trips to underdeveloped countries. They live in England & for some reason they weren't able to get this particular antiprotozoal drug -- the chemical name is 8-hydroxyquinoline. In the US, the drug names are Diquinol, Yodoquinol, Yodoxin. They were going to try & go through the American Consolate to get a prescription. It's also available in Canada--I think the spelling is diodoquinol. But what Sarita said, you must do the stool samples to make sure certain that what you have is a parasite infection. Good luck.

m&ms
Regular Member


Date Joined Oct 2005
Total Posts : 51
   Posted 10/7/2005 1:24 PM (GMT -7)   
I have had many stool tests, and was starting to think that I was getting Crohn's because everything kept coming up negative.  After the last round of tests in I got a new GI Doc while visiting the states and he looked at all my work up and was shocked to see that I'd never been tested for C-difficile.  After the first test I came up positive!  My symptoms aren't debilitating or anything, but it seems like I keep getting better and then worse.  I'll go an entire day without noticing symptoms, and then the next day I'll start to think I am getting back to normal, and then I'll get cramps and I'll go 2 or 3 times in one day.  I used to go 5 days without any bms!  I guess the C-Difficile would explain why I have had nightsweats off and on thru-out the summer.  Oh - and to Sarita - I started taking a multivitamin last month along with Iron (found out I was anemic also).  I am contemplating taking Omega 3 fish oils as I heard it helps with inflammation.  That is another thing I don't get - how can I have colitis if my colonoscopies all turned out clear?  I did read up on post-infectious IBS that those people have microscopic inflammation for up to a year afterwards.  Maybe that explains it.  Oh -and to the person who asked what South American country - It is Bolivia.  Nothing like having a sensitive stomach in a third world country!

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 10/9/2005 6:16 PM (GMT -7)   
m&ms, what tests have you had other than the stool tests and colonoscopy?  Have they confirmed that the C. diff cleared up?  You said you go to the bathroom up to 2-3x/day - is it always diarrhea?  Do you have blood in your stool?  Fevers?  Vomiting?  Weight loss?  Stomach cramps?  Sometimes the symptoms tell the tale...sometimes not.  If you expand about your symptomatology a bit more, we may have different advice.  IBS is a diagnosis of exclusion, meaning they have to rule out everything else first.

Peppertree
Regular Member


Date Joined Sep 2005
Total Posts : 116
   Posted 10/10/2005 9:35 AM (GMT -7)   

Hey,

im fairly  new to this forum, but my mother in law had cancer and was given lots of antibiotics for a biopsy she had ,,and ended up with cdif. They gave her flaygl to, and it didnt help. We called in an infectious disease doctor, and she put her on vancomyacin, which got rid of the cdiff. Hope that helps smurf Pepper


7Lil
Veteran Member


Date Joined Apr 2005
Total Posts : 3269
   Posted 10/10/2005 10:00 AM (GMT -7)   

Thanks for sharing, Peppertree!  Nice to see you again.

Glad to hear your mother is better.
Please keep posting.  :-)


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m&ms
Regular Member


Date Joined Oct 2005
Total Posts : 51
   Posted 10/12/2005 12:16 PM (GMT -7)   
Thank you all for your advice.  I have been feeling GREAT for four days since finishing the Flagyl.  I am taking probiotics and yogurt and eating low residue foods that won't irritate things.  I am also taking Metamucil as I was told that it will assist in pulling out the bad bacteria.  I pray that this will not come back because it is soooooo horrible, and I had only a mild case, apparently. 

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 10/12/2005 2:15 PM (GMT -7)   
m&ms, that's awesome that you're feeling better!  Oh my goodness let's hope it stays that way!  Please keep us updated.  You might have some clues to offer me.  Maybe I should try some Flagyl again and see what happens!

GAWZ
Regular Member


Date Joined Jun 2005
Total Posts : 74
   Posted 10/13/2005 4:06 PM (GMT -7)   
flagyl is the best antibiotic for gastro infections ova paracites and cdiff!! Just FYI! Flagyl is also tolertaed pretty well by most people and it is cheap. A Doc may give you a RX for it just to try his luck and blindly treat things (this post is a little off subject).

m&ms
Regular Member


Date Joined Oct 2005
Total Posts : 51
   Posted 10/14/2005 7:38 AM (GMT -7)   

Sarita-

I am still feeling so good, and I think you should definitely try the Flagyl.  It is imperative that you replenish your colon with good bacteria, though, so that whatever is screwing up your system will have to fight it out with the good bacteria.  Right now your colon bacteria is obviously lacking in some capacity, as was mine.  This experience has given me so much knowledge about how important good nutrition is.  You know, when I was worried about having an autoimmune disorder, I read that the best way to avoid it is to make sure you're as healthy as possible.  I am going to stick with vitamins, supplements and healthy eating for life.  I am praying that you find the relief I have found!!  I have cried so many time in the past few months just thinking such horrible thoughts about the future. I was eating probably 500 calories a day to try to stop the diarrhea, and I would still go to the bathroom as if I'd eaten 10 feasts.  My ribs were so prominent that I looked like an anorexic.  I would black out when I would stand up from lack of nourishment.  I woke up drenched in night sweats.  My wieght at the worst was 104 and I am 5'6!  I had to switch GI docs because the first one thought I was just manic and prescribed my paxil for IBS.  I knew in my heart it wasn't IBS and I'd now like to write that doctor a letter and thank him for wasting my time!! 


perth1972
New Member


Date Joined Dec 2006
Total Posts : 15
   Posted 12/22/2006 3:12 AM (GMT -7)   
hi m&m

i m glad you have recovered. I have ibs aswell, and on flagyl
.

expat312
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/23/2009 10:12 PM (GMT -7)   
Dear Sarita and Others

I'm new to the forum and found this forum through google. I live in Brazil and was diagnosed, finally, with IBS about 5 months ago.

I first fell ill in Feb of 2008 with sudden onset painful diarrhea (including nocturnal), tons of gas, cramps, low fever, mucous in stools. The first (genius by the way, how he missed a classic giardisis diagnosis I have no idea) doc I saw said "you seem nervous, it's probably IBS" and gave me nothing. I lost 10 pounds and saw another two docs. While I almost certainly had or have some parasitic infection, I have no been given an official IBS diagnosis by a gastroenterologist.

I mention you Sarita because I spent 6 months living in Kenya, 3 of which were in very unsanitary rural conditions, and have also traveled to India, etc.

I feel much better than a year ago, but nowhere near what I felt like when I was a normal, non-Post-infectious IBS human being! I want to be sure I have no parasites and I am interested in B. hominis and D. fragilis testing - would anyone be able to give me recommendations on where to go to get tested in Brazil or the US?

- thanks

finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 6/24/2009 3:45 AM (GMT -7)   
Hi M&Ms,
 
I got c diff in May from getting too many antibiotics following a kidney procedure.   The dr that overmedicated called me and said I needed to see a surgeon right away to have my colon removed which meant that I would need a colostomy bag as I only have 2 inches of my colon due to a subtotal colectomy last July.  I went to my GI who did a scope and cultures & found severe inflamation; he admitted me to the hospital & the next day diagnosed the c diff. I spent 5 days in the hospital in isolation because the c diff is contagious and I was severely dehydrated, had extreme abdominal pain and severe diarrhea.  They put me in flagyl for for 2 weeks and the followiing day it can back in full force.  My GI then put me on vancomycin in a strong tapered dose for 6 weeks; it's a very expensive drug ($8,000.) but they say it is they best one for the c diff., I'm also on a probiotic from a health food store and eat a yogurt called super yogurt 3xs a day.
 
I continue to have diarrhea after I eat but it isn't uncontrollable not and I'm not losing weight; I lost 16 lbs in 2 weeks.  With c diff you need to clean your house and wash your hands thoroughly.  The only thing that kills the spores is diluted bleach and the spores can live up to a year.  We also was all of my clothes in hot water.
 
This infection has taken its toll on me and I am taking a long time to bounce back.  My GI calls me every week to see how I am doing and I have to go back when the antibiotic is done for another culture to see if the infection is gone.  I've been hospitalized 3 times since I've had the infection for kidney reasons and they put me in isolation every time.
 
C diff can cause serious intestional problems that can lead to drs having to remove your colon or even getting sepsis.  It is not something to take lightly so if you start to get symptoms back please see your dr right away.
 
I hope you feel better and I wish you the very best,
Judy
 
 
Judy
 
spleen/appendix/gall bladder  removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08-
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


ElleS88
New Member


Date Joined Sep 2010
Total Posts : 1
   Posted 9/27/2010 7:24 PM (GMT -7)   
Hey M&Ms,
I had a parasitic infection, treated with antibiotics, followed by C. Diff infection and then treated for that. I was 16 when all that happened and now I'm about to turn 22 and I was recently diagnosed with Post Infectious IBS. I have had diarrhea an average of 4 times a day for the last 6 years. I've done everything from pro-biotics to therapy to accupuncture and have found no relief. I take Lomotil after I "void" in the morning.
Good luck,
-Elle

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 9/27/2010 8:33 PM (GMT -7)   
Funny, I just got an e-mail just this minute from my Vets saying that parasite season is not over. I wonder if that is meant to be a message to me? I've always wondered if I picked something up traveling overseas when I was in my 30's. We traveled a lot to the Caribbean. That was about the same time my problems started too.

Anyway, I did want to say that VSL #3 is the strongest antibiotic. You can find it online or ask for a prescription from your doctor for the double strength dose. It works pretty well. When you get better, keep taking some form of a probiotic to make sure it doesn't come back.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, joint pain, fatigue, Mixed Connective Tissue Disease
claritin, prometrium, VSL#3 probiotic, Vit. D, colazal, nexium, pexeva (paxil), synthroid, cozar, Vit D,
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.

shawn12
Veteran Member


Date Joined Jul 2004
Total Posts : 1293
   Posted 9/28/2010 9:11 AM (GMT -7)   
I just want to clarify VSL #3 is actually a probiotic, not an antibiotic.

There is a lot of newer information on PI IBS, which is how my IBS developed.
IBS Forum Moderator


I am not a doctor. All information I present is for educational purposes only and should not be subsituted for the advise of a qualified health care provider.

Please make sure you have your symptoms diagnosed by a medical practitioner or a doctor.

ampatel
New Member


Date Joined Nov 2010
Total Posts : 3
   Posted 11/3/2010 8:55 PM (GMT -7)   
Hi everyone,
I was diagnosed with a c. diff infection after I had a rotation in a hospital for a month. I took flagyll (metronidazole) for 10 days. After taking another stool test, the GI doc said it was gone. It has been 2 weeks now and I still get stomach discomfort after eating, and the doctor told me the only explanation he had was post infectious IBS. He told me it could last days up to several years. Has anyone had a similar experience? If so, any helpful recommendations on how to get back to normal? I have been taking probiotics for a while now, but to no avail.

shawn12
Veteran Member


Date Joined Jul 2004
Total Posts : 1293
   Posted 11/4/2010 12:44 PM (GMT -7)   
Do an internet search on Dr Robin Spiller in the UK. Pubmed and and a basic internet search.
 
Keep your stress levels as low as humanly possible.
 
You might also try gut directed hypnotherapy, which may have the potential to nip it in the bud.
 
Probiotics are good.
 

What Is Post Infectious IBS?
Frequently Asked Questions about Post Infectious IBS (IBS-PI)

 
 
 
IBS Forum Moderator


I am not a doctor. All information I present is for educational purposes only and should not be subsituted for the advise of a qualified health care provider.

Please make sure you have your symptoms diagnosed by a medical practitioner or a doctor.

shawn12
Veteran Member


Date Joined Jul 2004
Total Posts : 1293
   Posted 11/4/2010 12:45 PM (GMT -7)   
Dr Spiller is one of the major leading experts on PI IBS.
IBS Forum Moderator


I am not a doctor. All information I present is for educational purposes only and should not be subsituted for the advise of a qualified health care provider.

Please make sure you have your symptoms diagnosed by a medical practitioner or a doctor.

fosterm
New Member


Date Joined Nov 2011
Total Posts : 3
   Posted 11/11/2011 10:56 PM (GMT -7)   
My husband was diagnosed with UC about 5 years ago and was recently diagnosed with c.diff. We're not sure how he contracted this - it showed up not long after his last colonoscopy, so it could have to do with the clinic he had it done.

He has lost 20lbs in 2 months, diarrhea every day for almost 3. At his worst, he was making over 20 trip to the bathroom each day. He barely makes it to work. I feel so bad watching him leave. He has a lull in symptoms around lunch time until late afternoon; when he gets home, he rests on the sofa, then goes from there to bed until the next morning. Initially, his GI doc put him on Flagyl, it did nothing. He finished two weeks of Vancomycin a few nights ago. He started back on Prednisone, at higher dose. He felt better for a couple of days, but last night the severe symptoms returned.

He had to speak with his supervisor at work as the trips to the bathroom are so frequent. He was doing a lot of OT before this hit him. His sup said he had noticed a decline is his work, but is sympathetic at this point.

I have been reading blogs, etc.. it gets overwhelming, as most of you know. I have made an appt for a 2nd opinion. I purchased some supplements and he started taking them after the Vancomycin. It's hard to know which is doing what, so it's trial and error.

Right now he is taking:
Bentonite clay
Oregano oil
L- Glutamine
Probiotics
Saccgarromyces BoularrdII
Cod liver oil
Daily vitamin
Culturelle

He is currently on Humira, used Remicade before that. Also Lialda. Now his doc thinks the Humira is not effective so he is waiting approval from his ins for Cimzia. The side effects are horrible.

I welcome your comments, any advice you might have to offer...

ellen37
New Member


Date Joined Jan 2012
Total Posts : 1
   Posted 1/11/2012 3:10 PM (GMT -7)   
to the wife w/ very sick husband, 
I am an RN and have post infectious IBS after having C Diff.
There is lots of good info in some of these posts.  My advice would be to search the internet and find the very best GI doctor you can find, one who specializes in Ulcerative Colitis.  There are poor, medium and good doctors and you want a good one.  Try getting names by reading journals and finding names of doctors who write about and treat UC.
Even if you have to travel a long way, go to the best doc you can find. Ask at an Ulcerative Colitis forums, who other patients and families think are good  doctors and cross index that with names you find about doctors that are researching and treating UC.  God Be with you. Ellen 37

mpt2222
New Member


Date Joined Jan 2012
Total Posts : 1
   Posted 1/17/2012 11:35 AM (GMT -7)   
ampatel,
 
I was diagnosed with c diff last August and finally kicked it in October after rounds of treatment with Flagyl (didn't work) then Vancomycin (worked).  Unfortunately, ever since then, I still don't feel back to "normal".  While I certainly don't experience the horrible c diff symptoms consistently, i constantly experience mild abdominal pain, short durations of loose stool, general digestive discomfort, bloating, etc. Occasionally, I get severe cramping and diarrhea which lasts a few hours.   I've followed-up with a GI who basically said he's in a wait and see mode... as long as the Diarrhea doesnt come back for more than 24 hours straight or other symptoms like fever or blood etcy show up.  I wonder if I'm experiencing post infectious IBS.  It sounds like we could be in for many months, if not years, of recovery.  I keep worrying that I'm relapsing with the c diff.  Every time diarrhea shows up, i get very nervous.
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