People who get better rarely come back but I did, so here is the hope.

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
RomGrl
Regular User
Posts: 56
Joined: Mon Jan 23, 2017 5:55 pm

People who get better rarely come back but I did, so here is the hope.

Postby RomGrl » Sun Mar 29, 2020 4:39 pm

Hey stranger friends,

Many of the mods will likely remember me from when I was diagnosed with c.diff 4-years ago. I know that seems like a long time but there is a reason I didn't post a success story sooner. First, laugh with me here, but I didn't want to jinx myself. Hah. C.diff was and is more terrifying than having Crohn's disease (which I didn't know I had when I first showed up here).

Basically, let's cut this part short, kidney infection + antibiotics, 8-months undiagnosed c.diff with added antibiotics, led me to a GI who eventually checked my stool, found it, treated, relapsed 3x and one of which we thought would be #4.

With that in mind, c.diff triggered my pre-existing Crohn's disease. I went through all my medical files and it looks like I've complained about my stomach for a very long time.

Now, take this with a grain of salt. I have gained quite a few friends in Crohn's support world. And their GI's SUCK. I have a friend two houses down who already has a bag because of the disease, she's had it 1-year longer than I did, I say this because in my medical record it says my IBD was induced by c.diff, so please take probiotics, I know that Kiefer may not taste that great but I'm pretty sure that's what prevented a relapse even with active Crohn's disease.

It's incredibly difficult to get out of it with a flare.

I wanted to come here as someone with Crohn's, someone who felt like the diagnosis was as though we are hearing a cancer diagnosis. I was fighting invisible spores, I was bleaching even our colored clothing. I did everything that the wonderful mods suggested and they were forgiving when I had a "freak out," and posted like crazy, every day... Sorry about that, lol.

But, it's going to get better, no this does not mean you are going to die. In fact, the chance of dying is slim, especially if you're getting treatment. I wanted to hear those things while I had c.diff. I also wanted to hear other things that did come true, so many people write about the people they lost to c.diff but nobody talks about the people who survive.

With this COVID-19 pandemic, it triggered me to come here and share my success of beating c.diff and you're going to beat it too.

Yes, it's painful and freaks with your brain.
Yes, you start to look at everything as a threat.
Yes, seeing the toilet gives you anxiety.
Yes, it's traumatizing.
Yes, it can create a little of a hypochondria effect before and after. This is very true to me.

No, you were not given a death sentence, I want to make that very clear, as we are ALL different. Right now is a scary time, so do keep in contact with your doctor, make sure you call before you go in and let them know, they might be able to have an MA bring out whatever it is you need or use the online appointments, I went to the Instacare 21 times in 2013.

If that 21 time was right now, I'm pretty sure I would have COVID-19, (knocks on wood).

Do not forget you are in charge, this is YOUR health, YOUR money, YOUR MENTAL HEALTH, and mine was an absolute wreck while I had c.diff. It was so bad I almost checked myself in the looney part of the hospital to force them to IV treat me. Then I took my anxiety medication and calmed down and started over after bawling for what felt like hours in my mom's arms, telling her "I just want to be normal."

It's horrible but people who don't make it tend to be those who have secondary issues, like myself. You will be okay and if you do have secondary issues, guess what, it's still going to be okay.

Use Kefir, I cannot stress this enough, my doc told me 2 hours before, 2 hours after, and of course, bowl rest is good, so pamper yourself. Kefir helps my Crohn's abdominal bloating, for some it makes them bloat but there is a sweet spot when it comes to dosage, you can figure that out with a provider or by doing some proper research online (reputable sources).

I really just want you to know that if you need someone to rant to let me know, without my support groups I don't know where I would be. And I didn't want to be "the person who got better and didn't share."

We need to learn from one another, we need comfort, stranger or not. We all bleed the same blood. Mods, thank you for dealing with me and answering all of my odd questions.

New stranger friends, just diagnosed or relapsed, keep fighting, you can do it. You will be okay!

Best,

RomGRL

Ali-Mar
Regular Contributor
Posts: 253
Joined: Sat Mar 21, 2020 4:17 pm

Re: People who get better rarely come back but I did, so here is the hope.

Postby Ali-Mar » Sun Mar 29, 2020 9:19 pm

RomGRL, Thank you for coming back and posting! It is great to hear positive stories.. It is my first time contracting C-Diff. I 1st noticed the symptoms two months ago on Feb 5 and, I was diagnosed with C Diff on March 2.. I was on Flagyl for 8 days, and switched to Vancomycine... Finished 10 days of Vanco 9 days ago on Friday March 20, and counting the days... hope I can be normal again one day. I am a fired of eating anything with hands, I use spoon and forks even for sank and potato chips etc
Male 54, 1st time contracted C-Diff Infection on Feb 5, 2020, diagnosed on March 2nd using Toxin B Gene PCR test
Took Flagyl for 8 days, Vanco for 10 days, relapsed 4.5 weeks post-Vanco. finished Dificid Taper on June 20

ste
Brand New Poster
Posts: 2
Joined: Wed Feb 12, 2020 10:01 pm

Re: People who get better rarely come back but I did, so here is the hope.

Postby ste » Thu Jun 18, 2020 6:35 pm

Hi RomGrl, do you have any links for the Crohn's support groups?
thank you


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