crohns and c-diff:(

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ems90
New Member


Date Joined Mar 2012
Total Posts : 7
   Posted 3/16/2012 11:38 AM (GMT -7)   
I became sick 6 days ago with horrible tummy pain and non stop diarrhea 10-15 times a day. Originally the er doc said it was crohns n sent me home the same night I returned and demanded to be tested for an infection and sure enough c-diff. Apparently I picked it up on one of my calls (I work in ems). I'm on day 4 now on antibiotic (flagyl) 3 times a day for 20 days and I still have the pain along with the diarrhea:( granted I don't go as often I'm still going 5 to 6 times a day....I also just started pro biotics. How long does it take to get relief and also what are the warning signs that I could relapse? Anything else seem to help symptoms? Im beyond tired and sore all the time I need relief...I'm currently looking for a new career which sucks because I have a lot invested in my career but with my immune system on humira I'm too afraid getting this awful bug again or something worse. I need help and encouragement to get me through this because everything iv read has shown me this isn't just going to go away:(

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 3100
   Posted 3/16/2012 1:37 PM (GMT -7)   
Hi ems,
Don't despair, you can beat this! I was in the middle of a Crohn's flare, and I was feeling extraordinarily sick...cramping and pain, no appetite, nausea, etc. My doc put me in the hospital, and he finally did a stool sample and discovered the c.diff. He originally put me on 10 days of Flagyl 2X a day. My symptoms went away after around 3-4 days, but about a week after stopping the Flagyl, the symptoms all came back. So then he prescribed 500mg of Flagyl 3X a day for 14 days. I have been off the second round for around 10 days now, and I feel very well, so hopefully I beat it this time. My doc says I have to be off antibiotics for at least a month, before he can get an accurate result with retesting the stool. I always have some IBS even when Crohn's is in remission, so I will ask to re-test the stool even if I continue to feel well. I hated the Flagyl. It gave me a gross taste in my mouth that made food taste bad. I was nauseated, but I felt that way from the c.diff, so it was hard to tell if that was from the medicine.

Clean you bathrooms and kitchen with bleach. Wash your hands a lot, and change your clothes as soon as you get home from work. Vancomycin is the next level of antibiotics if the Flagyl doesn't work for you. I started Florastor probiotics, which is yeast based, but supposed to help prevent c.diff relapse. I was taking a different brand, but I really like the Florastor. It seemed to help me with gas and bloating. I plan to continue taking it along with my maintanence meds. It is a miserable infection...I never felt so weak and tired. But now I'm back at work, walking a mile a day and feeling good! I hope you feel better soon!
53 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Also have IBS. Disease spread 12/11 to distal ileum. Dx. with c.difficile and gastroparesis 1/12.
MEDS: Pentasa- 6 500mg pills per day, Omeprazole, Metamucil, colace, miralax as needed, Florastor probiotics

ems90
New Member


Date Joined Mar 2012
Total Posts : 7
   Posted 3/17/2012 12:03 AM (GMT -7)   
Ya I'm pretty much in pain pretty constantly....my family is being pretty supportive but idk how I'm gana being able to go back to work... But hearing from both you guys it sounds like I'm going to have a long road ahead of me....have you guys ever had cases where your stool goes from form right back to diarrhea? It seems il have a normal movement and then right back to diarrhea. And also how do you know that your doing better? And my heating pad is my savior! It is very true most people cnt handle what us crohnies deal with on a daily basis.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 3100
   Posted 3/17/2012 8:18 AM (GMT -7)   
Dawg...you are great. You were my biggest supporter when I was in the hospital with the c.diff and the gastroparesis. I would open my computer and look to see if you posted. You got me through one of the roughest flares of my life. If I could do anything in the world to help you get well, I would! That being said, ems, remember that Dawg unfortunately has an unusually severe case, and hearing his stories can be scary if you don't keep it in perspective. Many people have c.diff and get cured with the antibiotics. Keep in close touch with your doctor and report all of your symptoms. In 2007, I had Salmonella with my Crohn's and it was a similar battle to get better. I had "post infectious IBS" and it took months to stabilize. But I DID recover from both the Salmonella and C.diff......I believe you will too! Hang in there.
53 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Also have IBS. Disease spread 12/11 to distal ileum. Dx. with c.difficile and gastroparesis 1/12.
MEDS: Pentasa- 6 500mg pills per day, Omeprazole, Metamucil, colace, miralax as needed, Florastor probiotics

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 3100
   Posted 3/17/2012 9:48 AM (GMT -7)   
EMS...one more thing. I have a tendency toward constipation, and one of the reasons that it took so long for my doc to think to order a stool test was because I wasn't having the massive bloody D, which is more typical of c.diff. And yes, when I was sick, I was moving back and forth between formed stool and D. Instead my symptoms were terrible abdominal cramping, nausea and zero appetite. I lost about 20 pounds in two months. I also had gastroparesis as already mentioned, but I really think that was all a part of the c.diff infection. So you can't just go by D...it can present different ways. Stay on the Flagyl, keep in touch with your doc, push fluids like Dawg suggested, and hopefully things will get better. Your doc will switch you to Vancomycin if the Flagyl doesn't work. I agree with Dawg...if you don't feel like you are slowly getting better, ( and it does feel SLOW!) then call your doc. I adore my GI, but he also assumes I am doing fine unless I tell him what's going on. Take good care.
53 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Also have IBS. Disease spread 12/11 to distal ileum. Dx. with c.difficile and gastroparesis 1/12.
MEDS: Pentasa- 6 500mg pills per day, Omeprazole, Metamucil, colace, miralax as needed, Florastor probiotics

ems90
New Member


Date Joined Mar 2012
Total Posts : 7
   Posted 3/17/2012 10:43 AM (GMT -7)   
Thank u all! I'll keep all this in mind and this is scary and being off my meds for crohns is not fun:( I go to my doc on Monday to get revaluated so I will keep you all updated on my symptoms cause I'm definetly having horrrrible cramping still:(

ems90
New Member


Date Joined Mar 2012
Total Posts : 7
   Posted 3/17/2012 10:43 AM (GMT -7)   
Thank u all! I'll keep all this in mind and this is scary and being off my meds for crohns is not fun:( I go to my doc on Monday to get revaluated so I will keep you all updated on my symptoms cause I'm definetly having horrrrible cramping still:(

Kales
New Member


Date Joined Mar 2012
Total Posts : 3
   Posted 3/17/2012 11:08 AM (GMT -7)   
Ems,

Wow, I am literally going through the exact same thing right now. I am in hospital with what started as a severe crohn's flareup, and have been here since Sunday. They did a stool test 2 days ago and found C-Diff! I am now in isolation, still at the hospital, and on antibiotics. I wish I could give you some words of encouragement, but right now I am right in the middle of it all as well. All I can say is hang in there and be strong! If i've learnt anything about coping with this disease for the past 10 years, its patience. Happy healing to you!

Current meds:
Humira 40mg weekly
Imuran 100mg daily
Pantoloc daily
Lomitil as needed
B12 injections
Iron injections
T3 as needed

ems90
New Member


Date Joined Mar 2012
Total Posts : 7
   Posted 3/20/2012 12:59 PM (GMT -7)   
Were u on antibiotics or did u just catch it? N yeah I'm pretty much on the same meds as you are:( n the flagyl doesn't seem to b working anymore I'm on day 8 of the treatment and the cramps n diarrhea has returned with intermittent blood in my stool:( just really hard to stay positive had to take a leave of absence at work and my employer hasn't approved it yet either so I might b out of a job over this thing cause fmla only kicks in after 12 months and I wasn't able to tie this infection to a particular call I ran so its not work related either. Just a hard week!

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 3100
   Posted 3/20/2012 2:29 PM (GMT -7)   
Sorry you are having such a tough time. Can you call your doc to switch the antibiotic from Flagyl To Vancomycin? I think it should be working by now. I was not on any antibiotics, but I was in the middle of a major Crohn's flare. I think the Prednisone and 6MP lowered my immune system and so I was then more prone to getting the c.diff, but that is just a theory. I don't really know how I got it. I don't work in a health care system, and wasn't around anyone that I know had it. I hope you feel better soon!
53 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Also have IBS. Disease spread 12/11 to distal ileum. Dx. with c.difficile and gastroparesis 1/12.
MEDS: Pentasa- 6 500mg pills per day, Omeprazole, Metamucil, colace, miralax as needed, Florastor probiotics

ems90
New Member


Date Joined Mar 2012
Total Posts : 7
   Posted 3/20/2012 2:36 PM (GMT -7)   
Ya i just emailed my doc the request but im not sure if he will switch me or not. Ya I was on humira and a high dose of prednisone n that's what did it in for me. Are you still hospitalized? And what are they treating you with?

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 3100
   Posted 3/20/2012 2:46 PM (GMT -7)   
Ems, I am recovered and feeling well. It took two rounds of Flagyl for me. We are going to re-test my stool in a couple of weeks to be absolutely sure we beat it, but I feel good. I hope you get better soon too!
53 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Also have IBS. Disease spread 12/11 to distal ileum. Dx. with c.difficile and gastroparesis 1/12.
MEDS: Pentasa- 6 500mg pills per day, Omeprazole, Metamucil, colace, miralax as needed, Florastor probiotics

Crohny93
Regular Member


Date Joined Mar 2008
Total Posts : 111
   Posted 3/23/2012 12:20 PM (GMT -7)   
Hey guys,I posted about a week ago or so, .
well, just wanted to update on my cdiff situation. after taking the flagyl which didnt do a thing for me, the doc put me on vancomycin, today will be my last day. Im still having lots of cramping and diarrhea. The thing is Im due for my remicade infusion next week, so the doc ordered a stool culture to see if i still have the cdiff. ugghhhh, this is soo sooo miserable, its indescribable. I have been looking into fecal transplant procedure, and have actually located a doctor named Lawrence Brandt, who is located in NY and is actually affiliated with Dr. Borody! Has anyone heard of Dr. Brandt? Any success at all??  I just dont think these antibiotics are helping me at all, and for some reason making things worse it seems...

Kales
New Member


Date Joined Mar 2012
Total Posts : 3
   Posted 3/23/2012 1:11 PM (GMT -7)   
Ems,

I am on Vancomycin for my C-Diff at the moment, and am still in hospital with it. I feel your pain, as I have been in hospital for 2 weeks now trying to get rid of this on top of control my flare. We are not sure how I got the C-diff, but it was not from antibiotics. They think its just from being so ill with this flare, but who knows. Glad to hear you are on the road to recovery! I hope I will be soon too.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 3100
   Posted 3/23/2012 2:34 PM (GMT -7)   
Angie,
I live in a small town in northern Michigan, and my local GI is doing fecal transplants for c.diff. (I haven't needed it) Can you ask your current doc about it? I don't think it's a difficult procedure that you need to switch docs for, but maybe I'm wrong. I feel so bad for you! I hope find something to help you beat this!
53 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Also have IBS. Disease spread 12/11 to distal ileum. Dx. with c.difficile and gastroparesis 1/12.
MEDS: Pentasa- 6 500mg pills per day, Omeprazole, Metamucil, colace, miralax as needed, Florastor probiotics

Crohny93
Regular Member


Date Joined Mar 2008
Total Posts : 111
   Posted 3/24/2012 2:38 PM (GMT -7)   
I brought this procedure up with my GI doc, and he didnt even want to hear of it. Does not want to be involved. He is very rigid and refused to even hear of it. Wanted to put me on more antibiotics. Meanwhile, Im feeling exactly the same.
 

trojen
Regular Member


Date Joined Oct 2011
Total Posts : 288
   Posted 3/25/2012 5:15 AM (GMT -7)   
Fecal Transplant. ANYONE who relapses with Cdiff after flagyl and vanco needs to look at FT....OR, it will continue to wreak havoc on your body. Rifaxamin is one more abx to try after vanco....but your gut flora is now messed up from the meds and the cdiff (dysbiosis). Don't waste your time with any more meds if you've relapsed more than a few times. You have a 90%+ cure rate with FT.

Angie93, Dr. Brandt is the man...you can youtube or google him for more info. If you have an opportunity to work with him...pick up the phone and make it happen.
5yr old (Jack) Diagnosed UC in Aug/Sept, 2010.
Diagnosed 8/10: Inpatient for one month.
Cdiff infection from inpatient stay.
Remicade since 10/10
Severe relapsing cdiff and uc flares until: 10/11
Bacteria (fecal) transplant 10/11: Remission?
Current maintenance: 7 wk, remicade

Sassml
New Member


Date Joined Aug 2013
Total Posts : 8
   Posted 8/4/2013 3:18 PM (GMT -7)   
@Kales
I was in the hospital one week ago, diagnosed with C.Diff & I have Crohns as well, I had a colon resection on May 7th. I am on Flaygl now for the C.Diff 3 times a day. From last week to this week HUGE improvement, I was on IV & not eating. I have been home since Thursday & have gained my appetite, still my stools are not normal, lose but less frequent. I am on probiotics & eating fairly well. Last week I was doing 15-20 bowel movements, & from Thurs on, 5-6 I find if I go a day without eating a banana I am in trouble & go frequent & very very lose. Have faith, it will get better! I am currently on Humira as well for my Crohns, & they also have me on high prednisone, but I am to tapper down quick.... Being on the prednisone should make me go less to the bathroom, BUT looks like the C.Diff is still lurking in me... Guess it takes time!
 
Kales said...
Ems,

I am on Vancomycin for my C-Diff at the moment, and am still in hospital with it. I feel your pain, as I have been in hospital for 2 weeks now trying to get rid of this on top of control my flare. We are not sure how I got the C-diff, but it was not from antibiotics. They think its just from being so ill with this flare, but who knows. Glad to hear you are on the road to recovery! I hope I will be soon too.
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