C diff and Crohn's

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changeiscertain

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I've never been so sick in all my life. :( I've had Crohn's for 14 years. I haven't had insurance for most of that time so I've received patchwork healthcare for the past several years. Meaning, I haven't been able to afford to have a GI and so when a flare gets too bad I go to the ER and they give me steroids and tell me to follow up with a GI I can't afford. :yfrown: I have recently found a GI that will take me on as a patient, even though I don't have an insurance or a job and therefore no real ability to pay him. :applause: Unfortunately, while awaiting my appointment with him, I got so sick and things became so painful, I ended up at the ER he is associated with. They are a teaching, university, non profit hospital so they took me in and not only gave me the steroids but actually kept me for a week and ran tests (I didn't know hospitals even did that!) Turns out I have C diff and the colonoscopy showed nothing but diseased colon. I'm now home and on Flagyl and have a follow up appointment with a GI. They say I have to wait for the C diff to clear before I can start long term treatment for Crohn's. This is all fine with me because I'm just happy to be on a doctor's radar and be claimed as a patient, rather than shooed out the door the second I mention that I don't have insurance or a job. But as of this very moment, I'm in every bit as much pain as I was the moment I walked into the ER. My guts feel like a rabid porcupine has taken up residence. When does this C diff business get any better? Is there any relief to be had? I've never been so miserable. I'm taking the meds as directed and I'm waiting for Amazon to deliver some Florastor. I'm living off water and broth (when I can stomach even that) and pain medication. When does it get better?? Anybody have any personal experience with this bug? Advice? Stories? I'm feeling so defeated and helpless. I thought Crohn's pain was as bad as belly pain could get. I hate that I was wrong.
 
Oh no! I am so sorry you are fighting the dreaded c diff. I fought that last year and after months of fighting it with antibiotics, florastor I was able to test c diff free and could start the crohns meds. You can beat the c diff! Just know it can be done :) eat lots of yogurt if you can tolerate it. Everyone is different on what they can tolerate so be careful, push fluids (Gatorade) & I used a heated rice bag on my stomache and back to get through the pain. I hope you beat the stubborn c diff infections and my post helps you. Take care & get well soon, Heidi
 
I had c-diff pretty bad a few weeks ago. It put in the hospital for a week. The IV fluids, flagyl, and pain meds tamed the worst of it within a few days. Its interesting that crohn's treatment is being delayed b/c of the c-diff. My treatment began before c-diff and continued right through.

Hang in there. c-diff sucks.
 
Another good probiotic for c diff is found in over the counter sustenex. My daughter had c diff and was in a lot of pain with it. How long have you been on the Flagl? You should start to feel somewhat better soon.
 
Thanks for the info, LittleChloe. I will definitely check out the sustenex. I'm sorry to hear about your daughter and I can attest to the fact that there is a lot of pain associated with this stupid bug. I was admitted to the hospital on Monday and they started Flagyl and Cipro right away. By Tuesday they had word that C diff was positive and discontinued the Cipro while continuing the Flagyl. They gave me Flagyl Tuesday and Wednesday and then switched over to Vancocin on Thursday, Friday and Saturday. They released me Saturday with a script for Flagyl and I took it yesterday and today so far. I still can't eat and struggle to get broth and water in me. It comes directly out the other end in no time but not before making me feel like I'm going to vomit it back up first. The Flagyl is a 10 day course and I find out tomorrow when my follow up appointment with my GI is. I've never been this sick for this long, with barely any good moments, much less good days and I'm wondering if my expectations are just unrealistic to imagine that I should be feeling some relief after 7 days of anti biotics. They also gave me antibodies intravenously in the hospital and said it should help with both the C diff and the Crohn's. Everybody at the hospital kept saying that I was getting better and that I looked better but I can't help but attribute that to the massive amounts of pain killers. Out of the hospital, I don't actually feel any better. I lost 11 more pounds (35 total in the last 2 months) while in the hospital and wasn't able to eat while I was there. I needed constant pain management or I was reduced to tears. I'm not sure what information they were going by that gave them the impression I was getting better but I do so want to believe they are right and I'm going to wake up one morning soon and not feel as badly as the night before.
 
Adam1971 said:
The IV fluids, flagyl, and pain meds tamed the worst of it within a few days.
Click to expand...

This is exactly what scares me. It seems like fluids and flagyl for 7 days should have tamed it a little by now. Thanks for the info, Adam and the encouragement. As for the Crohn's treatment, they are wanting me to start Remicade and they're saying that the Remicade would hinder the ability to get rid of the C diff so they won't start it until the C diff is completely eradicated.
 
I just found this posting and im wondering how long it took you to feel better? I am in tne same situation. I just spent 4 days in the hospital and they told me my bloodwork showed improvement but I still feel like garbage. Im on vancomycin and prednisone. I am more miserable than ever and I just want some relief.
 
Awalter5110,

I'm so sorry that you're going through this. It is the absolute worst and I know it feels like things will never get better and you'll feel like this forever but it does get better. Unfortunately, it's a very slow process. It took at least 3-4 weeks out of the hospital before I started feeling like myself again. I had to do 2 rounds of Flagyl to get rid of it so I ended that by the end of June and felt like things were going well. Since then, things don't seem to be so hot. I don't know if I'm just starting to flare through the 30 mg of steroids per day (not starting Remicade until the 27th) or if somehow C Diff is coming back (I've read horror stories of recurrence, which really scares me). Either way, to answer your question, I got some relief probably within a month of being out of the hospital and now within a month of that I'm starting to feel icky again. Not good. I hope you find relief soon.
 
Hi,

Around 2 years ago now I thought I was having a bad flare up and went to casualty. They absolutely pumped me full of iv steroids and admitted me, two days later I was getting progressively worse and on one occasion I couldn't get out of bed to make it to the bathroom so the nurse helped me on a commode. When she came back she immediately said I am sending this sample off (cause of the really bad smell) and it took 3 days to come back positive for c diff, during that time I was still being pumped of iv steroids (which were feeding the c diff) as soon as it was discovered I was put in isolation and immediately stopped steroids and give iv antibiotics. It took at least a month before I was on top of it.

Hope you feel better soon. :heart:
 
Sorry to hear this. CDIFF is one of those things that complicated things even more for me. I had CDIFF for four months until I finally tested negative. My condition got severe from CDIFF and it was a close call for me. My issue was finding a medication to get rid of the CDIFF. My GI team tried at least different medications, but none of them worked. It got to a point where they needed to do something quick. Doctor Crawford, from Cornell New York-Prebyterian performed a fecal transplant on me which is something new and rare. If you google the procedure you'll learn all about it. To make a long story short, the very next day after the transplant I tested negative! If you can't take it anymore, trying talking to your GI doctor about this procedure. It saved my life.
 
Have any of you experienced high liver (AST and ALT) blood test results with C diff? Trying to figure out if C diff causing high results or if it's the Crohn's or possibly an autoimmune disease of the liver. All info. greatly appreciated.
 
Ughh, I gotta say, C-diff scares the crap out of me. That is one nasty Bug to get. I am always living in fear of getting it. I have to take antibitocs daily ( low dose) to prevent UTI's. SO this puts me at great risk for getting it. Anyone who is taking any antibiotic is at risk of getting C-diff. I take very high doses of probitoics, and a few different ones. This is important to do. I take one called 50 billion by critical care( I take 3 a day so that is 150 billion good bugs), I also take one called culturelle( 1 a day) and 2 floragen capsules. I also take florastor daily ( 2 times a day). I am hoping by taking these it will prevent me from getting C-diff. I also eat a yogurt once a day. A lot of people will only take like one probiotic that contains like only 10 to 20 billion bacteria strains. This is NOT enough at all, especially when you are taking antibiotics. Also try as much as you can to avoid the hospital as this is where these things live and thrive. NEVER touch any surfaces at the hospital should you have to go. Never let ANY doctor or nurse near you unless they wash their hands and never accept anything from them unless you have seen them wash their hands! One other important thing is that you should always bring a bottle of spray bleach with you and bleach everything in your room should you have to be in the hospital. Especially TV remotes and bed rails and all surfaces you will be using and touching. I know it sounds like a lot, but it is necessary. C-diff from everything I have read on it is a nasty bug and once you get it, you basically have to avoid antibiotics from then out or it will come back. It is scary. Like I said, I am praying I stay C-diff free, I am doing all I can to prevent it.
 
I'm on the C Diff train again :stinks: I was finally cleared of it after 2 rounds of Flagyl last year. I have not been on any antibiotics and have been taking Florastor daily since then and yet here I am :ymad: I'm at a loss. :confused2:
 
Please. please request a fecal transfer if this continues. Also ask about the new cdiff abx called deficit. I had a terrible time w cdiff (but my situation was extreme) and I really think a fecal transfer is the way to go. Sending you string, healthy vibes.
 
Do you take any other probiotics besides the florastor? I would get on a Very high dose good probiotic ( I mean like 150 to 200 billion bacteria counts along with the florastor). Also culturelle is suppose to help prevent C-diff as well( at least that is what they say).

I have heard that the fecal transplant is suppose to be 98% effective in curing C-diff. Not sure how many doctors are offering this though as it is still in it's beginning stages. But it is worth looking into if nothing else is working. Have you taken Vancomycin yet? I think this is suppose to be one the better drugs to take for this. Flagyl is not the best drug for this from what all I have read.

I hope you will kick nasty bug this soon...





changeiscertain said:
I'm on the C Diff train again :stinks: I was finally cleared of it after 2 rounds of Flagyl last year. I have not been on any antibiotics and have been taking Florastor daily since then and yet here I am :ymad: I'm at a loss. :confused2:
Click to expand...
 
Florastor is the only probiotic I'm taking right now but I am researching others to add. Thanks for the info on culturelle. I will definitely look into that. As for Vanco, I was given a script for that last time but it's $1200 because I don't have insurance :-(
 
Just had my second Fecal Transplant after another occurrence of CDIFF. Once again, it was successful. Thank God for New York Presbyterian
 

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