Well, I'm back with updates for you all.

[RomGrl]

Hey everyone,

I'm back, many of our daily users will remember me but some will not. Before I continue, I just want to note that I was about to post my success story on my five-month anniversary of being C-Diff free. But something told me to wait (I had been feeling weird) but I have Crohn's disease which was diagnosed shortly after my fight with my first c-diff infection that went undiagnosed for 8-months.

Long story short (for those that don't know it) I had a UTI, got put on broad spectrums, started having issues, doctors couldn't diagnose me, they gave me more antibiotics which caused c-diff, which then in turn caused what my doctor is calling post-infectious IBD. Yes, it's been shedding to light that IBD can come on after a bout of c-diff. There is also post-infectious IBS but for those of us who might be susceptible have a risk of going into a "Crohn's flare," or "UC flare," but here's the thing, I have never had a history of Crohn's disease in our family.

So, my doctor (and many people fly out to see him, he's fantastic) has opened up about how bad it's getting. Anyways, I'm rambling. I was going to come post my success story but unfortunately, that's not happening because I have c.diff again, after a five month break, trying to put my Crohn's disease into remission, ending up back in the ER after chemo didn't work (this is to treat Crohn's disease) and today I have an appointment at 1:30pm with my GI.

Pretty sure I'll be back on Vanco and I'm certain FMT will be talked about, tapering prednisone (also used for Crohn's treatment) and it's been literal hell. I have had to pair a Norco 7.5 with an additional 1 Tylenol to control the pain. Today, I'm certain he will give me something more to help but as of right now I'm horrified. I'm pretty sure it's a brand-new infection, as I was in the ER.

I haven't stopped probiotics either, not since my first infection. These little bugs are mighty when they choose to attack. I'm basically here to say, sorry I couldn't provide a positive success story yet, I'm working on it. I know there are new diagnosis every day, to you, I say be brave. This isn't easy and I've come here pleading for help to not end my life.

The five month break I had, it was wroth it. If you're just starting to go through this be brave. If c-diff wanted to kill you, we would all be dead by now, it's not likely to kill you (I'm immunocompromised) and look I'm still here, so have faith. And to everyone else who remembers me, I would love to say "it's good to be back," but it's not in this circumstance. But I look forward to talking with you again, helping others and hopefully getting to a point where I can write a success story.

Either way, any positive vibes, advice, thoughts, two cents or anything you wanna say, please do. I need to hear whatever you might have on your mind, good, bad and ugly.

Thanks again for all the support. And a huge thanks to mods here, you guys are hero's in more way than one.

Best,

Laura Monique

[NanciT]

Hi Laura

I do wish you have been able to make that other post!! So sorry to hear it's back. It's difficult to know why especially with your history and the recent medications including Prednisone that you have been on.
Hoping they get you on Vanco or Dificid quickly and you can put this all in the past!!

Feel better soon!

NanciT

[beth22]

Sorry to hear that you have IBD. You are not the only one. A few got UC after c diff and others Crohn's. We did have one poster who got Crohn's and then c diff again and finally had FMT and was cured of both her c diff and her Crohn's, or at least the Crohn's went into remission. Hoping the same for you! Hang in there.

[RomGrl]

Well, this is crazy, I wasn't expecting it but the test came back negative for c-diff. I'm telling you guys, there is no way, I had this for 8-months undiagnosed. I swear I know this feeling but we have had over 4 consecutive tests and this one came back negative as well. It's insane, even my doctor was shocked.

Since I do have IBD the GI wants to have a barium and IV contrast to see if maybe a fistula is forming? I'm not sure but I swear it feels and SMELLS like c-diff. If there's still issues I'm going to try another clinic tomorrow for one more test. I would rather be safe than sorry but I do trust my GI he's absolutely amazing.

This is just crazy. I really want the FMT in the setting of Crohn's as well. And I wonder if it's true then, that you can get IBD from c-diff infections. This has been an absolute nightmare.

How has everyone else been?

[Musings]

There is no definite cause for Crohn's, or IBD in general, at this time. Some people say it's genetics, environmental (IBD is usually only found in developed countries), while other's blame food poisoning and/or infections like c.diff. What is known though is that those with IBD are often more prone to getting c.diff so in your case it is probably difficult to know what came first - maybe you had Crohn's but it was mild/undiagnosed and c.diff led to the diagnosis or vice versa.

Hope they can determine what is causing your current symptoms and get you back on track soon!

[roy]

If you get another test and it comes back positive you then have to judge if it's correct!
What one is correct?
The 4 negatives or the one positive!
The more tests you have increases the likelihood of one being a false result.
C.diff Definatly shows up pre existing GI weaknesses.
If you had 20 tests and only one was positive the chances of it being correct are only 5%

[MKW]

Hi Laura, this is good news your C Diff test came back negative! Although sometimes, not knowing a definitive cause of what is causing symptoms can be very scary. I remember when you posted you had been diagnosed with Crohn's after having C Diff and know you have been through a lot and have suffered. There is much research now into dysbiosis being a contributory cause of IBD. And there are microbiota restoration drugs in development with companies like Seres Therapeutics and Rebiotix that are being studied for positive benefit with IBD. You are very lucky to have a decent doctor that you trust. Hang in there, and keep us all posted as to how you are doing.

[RomGrl]

Yeah. I don't know. I wrote my GI back today and told him again I am 100% sure this is C-Diff. I mean, yes there's a chance this is just a new level of Crohn's disease I'm not used too, I really feel like after 8 months of undiagnosed c-diff. I can tell the difference pretty well. It's classic. I just hope they will give me at the very least some Flagyl so he can then see improvement and then move me up to Vanco.

I'm so tired. Sometimes, I wonder why I get up ever day? Sigh. Sorry, don't mean to be a downer, just a rough year.

[roy]

Be careful about pushing for treatment, some Drs will give you meds to get you off their backs.
If your testing negative it's probably correct, if you test negative 4 times it's definatley correct!
Taking flagyl now might even CAUSE c.diff!

[MKW]

Hi, hope you are feeling better or have had some type of progress towards figuring out what is wrong and treatment by now. I am curious about your statement that your doctor has opened up about how bad it's getting. What did you mean by that?

[OCmama]

I too am curious about your dr saying how bad it is getting. My ID has echoed the same sentiment...

[Lisa33]

My GI has commented that there is definitely an increase in cases of c-diff. I'm sure that overuse and misuse of antibiotics has a lot to do with it.

Laura - I'm so sorry that you are not feeling well again and getting some sort of flare up. I would trust in the negative result as well. So many other things, IBD's being one of them, can present very similar symptoms. My mother in law recently had salmonella and her symptoms were identical to c-diff. It sounds like you have a good doctor, so hopefully you get to the bottom of things soon. I hope you feel better.

Lisa