6.5 years later... still C Diff free. It was a learning experience

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.
Chrisums
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Posts: 133
Joined: Sat Sep 15, 2012 8:25 pm

6.5 years later... still C Diff free. It was a learning experience

Postby Chrisums » Sat Mar 02, 2019 8:21 pm

Hey all!

So, in September of 2012 I first made an account here to discuss an unfortunate event in my life: A CDiff diagnosis! I was 27 years old, and had just graduated from Grad school a mere month before. Right after finishing school, I decided that the last item on my to-do list before moving off for a career job was to get a large infected cyst on the back of my neck handled. The doctors cut it out, and because of the infection I ended up needing to take several weeks of Bactrim. A few days after stopping it, the fun began.

Y'all know the drill with C Diff, so I'll spare the gory details. If you want to know more, I had posted a success story with more detail 6 months after the event. You can see all the fun here: viewtopic.php?f=17&t=11079&p=67426#p67426

So, after 6.5 years, how are things looking?

First: Physically, I am fine. My stomach gets a little upset at me more easily than most people, but honestly I am back to being a relatively regular guy. I do have some leftover physical issues from that time (aka: hemorrhoids, fissures, etc) that flair up from time to time and serve as a nice reminder of the hell that I went through, but otherwise I am no longer dancing around my stomach and whatever miseries it will bring me from food.

Second: I come out of it completely Lactose Intolerant, and that hasn't changed. A glass of milk will make me king of the porcelain throne for hours.

Third: I still take probiotics; however, I have stopped most other stuff I was doing, like fiber supplements.

So, what all did I learn from this misery?

A) Probiotics are fantastic, and my GI recommended I take them for the rest of my life. With that said, he specified something that I felt like a lot of new people here could definitely benefit from keeping in mind: probiotics make you poop! Feces is made up less of what you had for supper last night, and more of old bacteria that has run its course. Diarrhea is the body expelling not only foreign substances, but also old bacteria that shouldn't be there. This is why probiotics (except Florastor, which is a yeast) are generally recommended to alleviate constipation.

I used to see a lot of folks on here get C Diff and then go take a handful of "10 Trillion Live Cell Probiotic Pills of Doom", and the next day come back scared to death that they were relapsing cause they had the runs. No, you aren't relapsing; it's the probiotics doing exactly what they were meant to do. Once he explained this to me, I reduced myself down 2 probiotic pills daily; Florastor + one other, at night before bed. That helped a LOT. Nearly 7 years later, I still take that same combination.

B) "I know my body". You know nothing, Jon Snow. Whatever your body was like pre-C Diff, it could very well not be that way any longer. Whatever "normal" was before C Diff, it probably isn't your normal anymore.

The definition of "normal" for bowel movements is heavily dependent on your personal gut flora, and you just went through a gastropocalypse. Realistically, and there's some science behind this, you will probably never get to the point where your gut flora is exactly the way it was before. Some bacteria colonies may simply be dead, and never coming back, and other new ones may have appeared thanks to the food you're eating and the probiotics you're taking.

So what does this mean? Well, for starters: food allergies! I lost the ability to process dairy; all those nice Lacto-whatchamacallit bacteria that handled the milk are now long dead, so my body just treats milk like I ate some bad meat. No bueno. Fun side note, though may be unrelated: Before I committed bacterial genocide on my colon, eating eggs would give me the runs. After? I can eat them every meal of the day, in any form or variety. Whether it has anything to do with the C Diff I'll never know, but I now love eggs of all kinds.

C) PSA: Kefir and yogurt have milk. Read B. It may be different now, but back when I came here folks were always talking about the joyous miracle that was kefir. If you decide to get in on that, please make sure that your "normal" still includes dairy! Because if not, and you do like I did (ie. drinking Kefir and eating Yogurt after C Diff because it sounded like a C Diff fighting miracle combination), you're gonna be in for a bad time. I spent weeks thinking I was constantly on the edge of relapsing, when in fact my body was just freaking out because I kept eating those dairy products.

D) If your diet has changed, I bet your calcium intake has too. Folks really undervalue what calcium does to the gut. Calcium hardens things up down there pretty good, and a lack of calcium can mean some pretty unpleasant bowel movements. Also, unless you like getting big painful lumps in places where big painful lumps shouldn't be, I'd also recommend watching your Calcium. Let me be your cautionary tale: a lack of calcium can make bad and painful things happen 'round the bum area.

E) Be kind to your stomach for a while. Baked/grilled food, light on the spices and sauces, can go a long way towards making you feel a lot better. Once I calmed my diet down and started eating really simple, albeit slightly boring, my whole world changed. I became... me, again. Over time I was able to add things back, to the point where I can now happily go out and get a giant plate of fried fish curry from a Japanese ramen shop and feel just fine after, but for the first year after C Diff I made sure to take it slow. That REALLY helped in the long run.

F) Be kind to your bottom, especially if you are still dealing with the C Diff itself, or the IBS. Once you do damage downstairs, it's with you for a long time. If you can afford a bidet, get one. If you can do wipes, do them. Showers? Go for it. Anything other than tearing apart your anus with dry toilet paper 3+ times a day.

G) In my post 6 months after the incident, I talked about eating lots of fiber. It helped a lot at the time, but I've since stopped with all that. No Metamucil, no fiber supplements at all... I replaced them all with a diet full of veggies, and random snacks of mixed nuts. That has helped a lot. The fiber was useful at the time, but there hit a point where I no longer felt I needed it... and hitting the john 3 times a day was getting kind of old.

H) Finally, last but certainly not least: stay busy. The hardest days for me, at first, were my days off. Anxiety was a huge part of my life after C Diff, and I really didn't realize at the time how much of a mental toll it had taken on me. I was constantly self monitoring every little thing about my body, looking for any sign of a relapse. Some days I would make myself sick expecting to get sick. I became, for lack of a better word, a hypochondriac.... at least when it came to my stomach. And trust me: anxiety is the absolute worst for IBS sufferers, so I was doing my body no favors here.

Things changed once I had a job again, as there was simply no time in my day to worry about that stuff. I realized that on days where I was working, I felt better and more energetic than days where I wasn't. I got to the point where I was afraid to take PTO; I hated weekends. Of course, over the past 6 years I've gotten better about that, and in fact when I started writing this post I was sitting in my pajamas at 1pm on a Saturday, having just eaten a brownie and chugged some coffee, without worrying about whether I'm suddenly going to have explosive diarrhea at any moment. Tonight I'm going to eat a pork roast I threw in the crock pot, slather said pulled pork in Hickory BBQ sauce and not think a second thing about it. All these are things I never would have considered possible my first few months after C Diff.

Side note, in case you were curious about the above paragraph: Most Duncan Hines brownies have no dairy in them. You're welcome.


I will say one thing that has changed for me permanently: I am still terrified of antibiotics, and haven't taken any since. Every time I see a doctor for something, I open with "I had recurring C Diff years ago and am scared to take antibiotics again. I'll take em if I have to, but I would appreciate any other options first". I could very well relapse again if I have antibiotics in the future, but so far that hasn't been an issue. I've had an infected tooth that got a root canal, several odd injuries, etc... and somehow managed to avoid antibiotics with that one simple request, so I'll keep doing that for as long as I can =D

Anyhow, I wanted post a true "success story". I can't say that I won't get it again the next time I have to take antibiotics, though if I do get it I think I'll be a bit better equipped, knowledge wise, about what I did right vs what I did wrong the first time around. Hopefully that will help, at least a little. But for right now, 6+ years down the road, I'm feeling great.

Hang in there folks. There's light at the end of the tunnel. I wanted to come back and post this for those of you who, like me at the time, wondered if it would ever get better. I can't say for certain what your particular situation will be like, but there are folks out there who suffered through multiple relapses and still were able to move on with their lives. C Diff could one day be just a distant memory for you.

Good luck!

beth22
Long Time Contributor
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Joined: Tue Apr 07, 2009 2:23 pm

Re: 6.5 years later... still C Diff free. It was a learning experience

Postby beth22 » Sun Mar 03, 2019 4:15 pm

Thanks so much for posting this and giving other people hope. Wishing you continued good health!

AnxiousJ
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Posts: 191
Joined: Fri Feb 24, 2017 2:24 pm

Re: 6.5 years later... still C Diff free. It was a learning experience

Postby AnxiousJ » Sun Mar 03, 2019 6:53 pm

Wonderful post!! Thank you for sharing!

Obreezy
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Posts: 15
Joined: Mon Feb 11, 2019 9:17 pm

Re: 6.5 years later... still C Diff free. It was a learning experience

Postby Obreezy » Mon Mar 04, 2019 10:24 pm

Thanks for the great post with a lot of good advice! I hope someday I’ll be 6.5 years out :)

D1dad
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Posts: 29
Joined: Tue Mar 12, 2019 8:34 pm

Re: 6.5 years later... still C Diff free. It was a learning experience

Postby D1dad » Mon Apr 01, 2019 2:10 pm

Wow awesome. Every time I hear a story like this it’s both inspiring and reassuring that this can happen to anyone. @45 and never a health issue, this has been humbling at best. I hope I’m on my way after a 2nd round of metro and can come back someday just like you did.

DaddyO
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Posts: 2
Joined: Fri May 17, 2019 10:27 am

Re: 6.5 years later... still C Diff free. It was a learning experience

Postby DaddyO » Sat May 18, 2019 1:49 pm

WOW! Thank you SO MUCH for posting. I am 65 year old female. 5 years ago I had colon resection surgery for stage 3 cancer. 3 days post op I got sepsis, had 2nd emergency surgery and ended up with a "poop bag" (ileostomy) that I lived with for 5 years. All my doctors and husband kept telling me I needed to get it reversed, so I bit the bullet and conceded. My surgery was 5 weeks ago, April 15th. They gave me IV antibiotics day of and day after surgery. On day three I just didn't feel right. My bowels woke up that day with a vengeance, but I was told that was normal following that surgery. But it turns out, it WASN'T! I went home feeling horrible. The next day I stayed in the bathroom the entire day and had pain like I had never had in my entire lifetime. I was totally exhausted from pooping every 15 minutes. I told my hubby I couldn't take it anymore. We called doctor and he said to come back to the hospital. I had a CT scan and colon showed major inflammation. Tested for C Diff and positive. Immediately moved to isolation and started on 5 different IV bags. I know one was Flagyl and one Vancomycin... not sure about other 3. All of this on top of my intestinal surgery. For 2 days I literally wanted to die. Again, I have never been in that much pain... not even having 3 babies!
I, like you, am trying to change my situation with diet. Trial and error in some cases. It sounds like I am doing a LOT of what you did and it is making a difference. Thank you for the suggestion of calcium supplements. I am going to get some today. I am also eating bone broth and homemade Miso soup... very healthy. I am taking Probiotics twice a day too and Boswellia and Peppermint Oil. I am going to do EVERYTHING HUMANLY POSSIBLE to NEVER have C Diff again. And like you, if I do, I will be better prepared. Thanks so much!

beth22
Long Time Contributor
Posts: 9704
Joined: Tue Apr 07, 2009 2:23 pm

Re: 6.5 years later... still C Diff free. It was a learning experience

Postby beth22 » Mon May 20, 2019 1:11 am

Hi DaddyO and welcome to the site. Please read the first forum for more information for new posters. I am so sorry for what you went through. It truly sounds like a nightmare. I hope the reversal surgery was successful at least. It sounds as if you are doing all that you can to prevent a relapse. There is also a medication called Dificid that is given instead of vanco or Flagyl. Hopefully, you won't need it, but I am just posting FYI. Take care and let us know how you progress.

DaddyO
Brand New Poster
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Joined: Fri May 17, 2019 10:27 am

Re: 6.5 years later... still C Diff free. It was a learning experience

Postby DaddyO » Tue May 21, 2019 10:20 am

Thank you so much. I will go back and read... hope I didn't overstep boundaries. Oh my!

beth22
Long Time Contributor
Posts: 9704
Joined: Tue Apr 07, 2009 2:23 pm

Re: 6.5 years later... still C Diff free. It was a learning experience

Postby beth22 » Wed May 22, 2019 1:08 am

No, you didn't overstep anything. That is just what we write for new posters so that they know where to look for information.


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