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bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 3/29/2009 6:27 PM (GMT -7)   
Hi everyone.  I have crohn's disease for 9 years now and i recently had a small bowel ressection with a temp ileostomy.  My ileostomy was reversed on October 23 of 08.  I had gotten the flu some time in feb and went to my primary care doc and she put me on an antibiotic for an upper respitory infection that I had gotten with the flu.  After a few days of taking the antibiotic it seemed as if diareah was worse than ever.  I stopped the antibiotic after only 6 days because I thought the antibiotic was causing the diareah.  So I go to my gastro doctor 2 weeks after being sick b/c the diareah had not stopped and I just was not feeling right.  It felt like I was flaring with the crohn's.  We scheduled a colonsocopy and he had me do blood work and a stool sample.  Turn out my crohn's is back right at the reconnection site and I have inactive crohns in my rectum and another patch of inflammations starting out a little higher up in the small intestine.  He suggests that I start cimzia and 6mp together.  I've been on 6mp many times before and it never helped.  I've done every med except methotrexate and cimzia.  Has anyone here ever been on cimzia and what were your results.  Also it turns out I have c diff from the antibiotic i was taking for the upper respitory infection.  So i was also put on flagyl which i'm sure everyone on here has been on at one time or another.  It made me sick to my stomach.  I'm finished with it now and I'm going back to the gi doc next week to see if the c diff infection is gone.  anyone here ever had it and what was your experience with that.  if anyone has any advice i greatly need it.  by the way i just have to vent that i'm extremely pissed off that my crohn's is back after only 7 months of surgery.  i was told i would have 2 to 5 years on average.  i'm so angry.  anybody had a similar experience.  thank you guys in advance for your help. blush

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 3/29/2009 10:41 PM (GMT -7)   
C difficile is a common result of taking antibiotics. A much less dangerous way to handle it is to take a probiotic supplement. It is controlled by probiotics as well as by antibiotics and you get several other benefits from probiotics such as reduced inflammation. Since you have had another course of antibiotics, you really should try a probiotic supplement to repopulate your gut with bacteria other than the antibiotic-resistant varieties.

asc58
Regular Member


Date Joined Jun 2006
Total Posts : 83
   Posted 3/30/2009 8:16 AM (GMT -7)   
Long story short, about six months after my third ressection two years ago, I did not feel right and was having the worst flares in years.  Thinking it was the crohns, my doc put me on put me on humira which really kicked the C Diff infection into high gear. They finally found the C diff. Alot of dark red bloody D, fevers spiking to over 103 and dehydration, they put in the hospital taking Vancomycin, Cipro, Flagyl, and something else, a Pickline for TPN.  After two weeks in I went home weaker than I've ever been.  The only thing I know is to be very careful about taking antibiotics, I only get them now if it's absolutely needed.  I hope that stuff never comes back, that was the sickest i've ever been.  There is no doult that C Diff will kill you if it gets a good hold on you and the Vancomycin or flagyl doesn't work. Good luck to you.
 
Steve

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 3/30/2009 9:28 AM (GMT -7)   
Like Keeper, I'm a firm believer in probiotics. In the States, physicians routinely prescribe multiple rounds of antibiotics that wipe out the bad bacteria but ALSO the good bacteria -- what really gets me is not that antibiotics are prescribed, but that these physicians don't even mention taking yogurt or supplements like acidophilus while you are on an antibiotic. 
 
When both good and bad bacteria are wiped out, then it is likely that bad bacteria will take hold. C Diff can run amok, if there's not enough good bacteria left to replenish your gut. So the best way to prevent C Diff is to take yogurt (with live cultures) and supplements like acidophilus while you are on an antibiotic. The best way to cure C Diff is to take yogurt and/or probiotic supplements while on Flagyl or another med. 
 
My daughter has homemade yogurt every day - we consider it medicine.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 3/30/2009 9:59 AM (GMT -7)   
I totally agree with njmom and Keeper!  Get as many probiotics into you as you can! Take acidophilus and eat yogurt and other fermented foods!!!  You can't get too much!  (Fermented foods have a much higher number of beneficial bacteria if you make them yourself.  A great book on this is Nourishing Traditions, by Sally Fallon.)
 
I remember having this discussion here before and learning that some doctors actually prescribe the probiotic Florastor (Saccharomyces boulardii) for Cdiff infections.  S. boulardii has been proven to fight Cdiff in clinical studies.  Personally, it wouldn't be the only probiotic I would take if I were fighting Cdiff, but I would definitely take it!  Good luck!
 
Here's the FAQ page from Florastor: 
 
 
Also, check this out.  Scroll down to "Recurrent Cdiff infection":
 

Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/30/2009 4:10 PM (GMT -7)   
My husband had a pretty bad experience with c-diff and a crohn's flare happening simultaneously. When you have both going on, it's really hard to treat, because they have divergent treatments. To fight the c-diff to help the antibiotics, you need a good immune system, while the meds for crohn's suppress your immune system. For my husband it was a long, hard road back to recovery and good health.

My husband was hospitalized for nearly 6 weeks because of this - we didn't even know he had crohn's at the point that he was admitted, so his diagnosis and treatment took longer. For his crohn's he was treated with high doses of solumedrol and Remicade, while for the c-diff he was treated with both flagyl and vancomycin. In addition to flagyl and vancomycin, he also took copious amounts of florastor (yeast) and VSl#3 (probiotics) - once he started to be able to eat something, and not have it cause a lot of pain.

While he was on prednisone and remicade (even 10 mgs of prednisone), anytime we tried to stop the vancomycin, the c-diff recurred. He was only able to stop the vancomycin after the prednisone was completely stopped. He's now been c-diff free for 3 months without vancomycin (knock on wood, cross fingers, toes. . .).

For my husband the tactic that the doctors took was this:
1.) Control the crohn's flare with high doses of iv solumedrol, and remicade (induction), take both flagyl and vancomycin to keep the c-diff in check
2.) Once the crohn's flare is under control, taper the prednisone, discontinue flagyl, but continue with vancomycin & probiotics
3.) After complete withdrawal of steroids, stop the vancomycin. If c-diff recurred, start the vancomycin again, and use a tapered approach to stop the vancomycin next time.

I hope our experience helps you some. Please be very very watchful, and if in doubt get a stool sample test right away, even if that means going to the emergency room to get one. C-diff can do a number on your gut, and can also make your crohn's worse (IMO), because your immune system is active and trying to fight it off. Also, drink plenty of fluids, and keep your sugar intake down as much as possible so you can starve out to beasties.

(((Hugs))). I know how hard this can be - hang in there, if my husband's experience is anything to go by, it does get better.

PV
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


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 3/30/2009 7:26 PM (GMT -7)   
thanks for all your help everyone. i will start eating more yogurt and discuss probiotics with my gi doc. thank you again.

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 3/31/2009 3:59 AM (GMT -7)   
another way to get some good bacteria in your system is to eat some soggy organic rice....wild, brown and or white.  Standard white rice mix is 1 3/4 cups wate r to 1 cup rice....instead use 2 1/2 cups of water but cook it the same amout of time....be sure to consume the water.  I am no doctor...and don't pretend to know the exact reason it works so well but I do know that  nurse back at my college suggested it one time when I had a long bout with the flu and major D.   She said it would be easy to digest and would help good bacteria flourish....this was back in 1976 and it still works today.

dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
 Crohns is currently active and has been since April of 2005
52 yrs old


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 3/31/2009 7:34 AM (GMT -7)   
i've never heard of that hspencer. i'll try anything. but honestly i don't have diareah that bad and i'm not cramping so i don't know if i have just a very mild case of c diff. i really don't know. i go back to the gi doc on monday. thanks for all your help. by the way isin't the tysabri drug the one that can give you a brain infection. my doctor mentioned it to me once and he told that was a possible side effect and i said no way. did it work for you and how come you stopped it?

hspenser
Veteran Member


Date Joined Dec 2005
Total Posts : 544
   Posted 3/31/2009 7:57 AM (GMT -7)   
yes..Tysabri...in certain cases...mostly the MS patients...caused an infection of the brain...something to do with the JC virus that resides in something like 90% of the people alive (or so i have been told..) I was in the trials had been for a while then they opened it up for MS folks and fast tracked the drug for them because it worked so well. I was doing great also...I hesitate to call it a remission because atthe end of the 4 week cycle as it wore off I would get sick again...but it was a life saver for me. I was losing weight so fast prior to the drug that they almost hospitalized me...lost an average of 5 lbs a week...one week over 15 lbs and went from 270 to 170 in about 5 months....the tysabri (didn't have a name when I took it) saved me.

Once a few folks got sick and died they canceled the test and I was on my own....I had gone back up close to 270 in the 2 years I was on it and in 6 months I was back to 175. they scanned me and my brain every way possible...I drew the line at a spinal tap since no symptoms of the infection were present in the other tests....Bio-gen, the drug company called me and asked me a gazillion questions but the one that was most telling was when they asked me how bad did I want the drug....if the death rate was 1 in 500 would I still take it? at that point I said yes....now more deaths and no doctor I know will prescribe it so I am a bit leery...

as for the rice...all i can say is it worked for me...and I also ate yogurt at the same time. The rice is also a great food item when the stomach is upset...my favorite dish is Congee (rice porridge) It tastes great, goes down easy and comes out just as smoothly...
dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
Naltrexone Jan. 19, 2007 Stopped July 28th...started Humira Aug 31st, 2007.... Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
Off Humira March 2009...starting Cimzia  April 2009
 Crohns is currently active and has been since April of 2005
52 yrs old


lenagirl
Regular Member


Date Joined Aug 2007
Total Posts : 44
   Posted 3/31/2009 12:04 PM (GMT -7)   
I had/am having a similar experience to PV's husband. I got C diff while I was flaring and the combo of the two can be BRUTAL. I ended up in the hospital back in November, on IV flagyl plus oral Vancomycin, which got the C diff under control. Then I started on pred for the flare in Dec., and the c diff came back full force. I went back on vancomycin and have been on it since, because I'm still trying to taper off of the steroids (now down to 12.5 mg) and my GI doesn't want to risk taking me of the antibiotics until I'm off the pred (because of any immunosuppression). It's a real pain in the butt, because my doc thinks I might be steroid- dependent and wants me to start Imuran if I can't taper without flaring, and I don't know how I'll ever get off the vanco without a reccurrance if I'm on it. On the bright side, vancomycin has much fewer side effects than flagyl. It isn't absorbed systemically and it doesn't upset my stomach at all (unlike flagyl which makes me really ill).

One thing to be wary of, that I'm not sure if anyone else mentioned (I didn't read all the responses) is that the stool test for c diff can be unreliable. It tests for the toxin produced by the bacteria, and sometimes comes up negative even if the bacteria is present or even if there are still spores in your colon. The hospital wouldn't let me go home until I had 4 samples come back negative, because it's so unreliable. When I had a recurrence my stool test came back negative, but there's no doubt it was c diff because I went from 4-5 BMs a day to 25-30 within several days, and then recovered quickly after starting vancomycin.
The moral of the story is (my GI has confirmed this), trust your symptoms more than you trust the test.

My GI has also recommended S. boulardii (I use florastor brand, since that's what was used in studies and proved beneficial) and said to stay on it for AT least a few months after everything has cleared up, as well as taking some bacterial probiotics.

Sorry if this is a little long-winded, but hopefully it's at least a little helpful. Some people take one course of flagyl and it clears everything up no problem, but it can turn into something of a mess, particularly for those who already have immune system and intestinal issues. I hope you have a better time of it than I do.
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