Quintessential question after long time

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Ismaila
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Quintessential question after long time

Postby Ismaila » Thu Jun 28, 2018 12:14 pm

Hello,
As a reminder for all those new ones,after horrible clindamycin ( given for basically nothing ) I was treated with Flagyl, and then with Vanco, including short taper. It was 2 years and 2 months ago. Ever since, I have been on various probiotics, (best quality, I believe), but I also changed them from time to time, because, all of it worked, and then it did not. I am still on one Florastor daily. Never, ever took a sip of alcohol since, and I almost never eat out
(if I do I am extremely careful). I also never went back to certain foods since. But - I also never got back to my old self. Anxiety over contaminating myself again is always present, which causes all kinds of problems for my stomach. I would have very good periods, and then, for no apparent reason ( I am saying this because I simply do not do anything risky), there comes a bad period. It causes additional anxiety and fear, and rumination, and vicious cycle continues. My question is: do we actually ever get better? I mean, really better. Does fear disappear eventually and what can we do to make it disappear? Based on my own experience, and reading a lot about this infection, it does depend on personality of a sufferer or former sufferer,a lot!I know I am sensitive, and I have had anxiety, especially health anxiety before C Diff, so, I suppose, I am harder to heal. But, I also recently read that many clinical studies showed that once ravaged , gut microbiota may take up to 7 ( !) years to recover ( these studies are about destroyed gut flora in general , not only from C DIff). Currently I take 2 different probiotics ( one pill each), and one pill of Florastor. I take vitamin D and Fish Oil. I love good kefir as it is, so I am drinking that too. But - seriously? Will this actually ever stop? How does one deal with long term consequences, what else can one do to help himself? Any experience, or piece of good, friendly advice is more than welcome. All the best to all of you, Ismaila

Cm1619
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Re: Quintessential question after long time

Postby Cm1619 » Thu Jun 28, 2018 3:43 pm

Hello!

I had cdiff around the same time as you. I found out I had it in April of 2016. I was cured with a round of Flagyl. I often wonder if I will ever be normal again. I deal with diarrhea and "flares" of stomach issues once, sometimes twice, a month. Then, sometimes I can go two months with no issues. One month I had issues almost weekly! I hate it. I have terrible anxiety and started taking an antidepressant that really helped but I still have awful health anxiety now. I'm not sure when things will get back to normal, if at all. I wish we could just not worry about it! I'm actually dealing with the decision to finally get a colonoscopy to rule out any other issues. My biggest problem is feeling unwell with these IBS flares, or whatever they are! Another thing that bothers me is I still seem to struggle with my weight and keeping any on. I'll gain a few pounds then lose it all with just one day of upset stomach. Grrrrr. Frustrating!

I hope you heal soon and get the answers you're looking for! I just wanted to jump in and say you aren't alone!

NanciT
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Re: Quintessential question after long time

Postby NanciT » Thu Jun 28, 2018 10:46 pm

Hello Ismaila

Good to hear from you, sorry issues have continued. This is really very individual, as you know we hear from some posters once or twice, they are treated and move on. I often see this when they are treated with one round and do well.
In my case if you don't recall, I was on treatment for a year with 5 relapses( 2014/2015, had various issues from all the medication and its taken a very long time to recover. I still have issues but have learned to deal with them, move forward and not let this stop me. It can have such a impact on one's life....sometimes I must push forward. I no longer fear it nearly as much as I have in the past and working in the hospital I continue to take all precautions.
It can really take time and be frustrating. We often recommend counseling if posters find they get stuck in all of this which I think can help. It sounds like you are doing all the right things!!!
Wishing you the best!
NanciT

beth22
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Re: Quintessential question after long time

Postby beth22 » Fri Jun 29, 2018 1:21 am

I am a c diff carrier apparently, as I test positive on PCR, but don't have an active infection as EIA is negative. Knowing that I have these spores inside of me is very disconcerting, but I just take it one day at a time. I've had good periods like you describe - C in fact, but then something will trigger some bad days or even weeks. We have a problem with our water supply every June it seems. There is a terrible odor due to algae overgrowth and the city doesn't do anything. Despite using bottled water for cooking, etc. I still get GI upset. Also, it seems, when I do not get enough sleep or am under a lotof stress I get flares. With me, I know that it is low grade c diff flaring up and I think that others have this too. Until someone comes out with something to kill those spores, I suppose I will always have issues and always have to be careful with antibiotic usage, diet, etc. Hopefully, something will come out soon.

It took me a few years to gain weight as well. I finally did, but yes, when I get flares, I will drop a pound or two and when I get better, I gain them back.

Ismaila
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Re: Quintessential question after long time

Postby Ismaila » Sat Jun 30, 2018 5:27 pm

Cm1619, Nanci, Beth,

Thank you so much for your insights. It truly helps, just to know that other keep on fighting various issues this horrible illness leaves with us. I also, at this point believe, it leaves serious mental mark on some of us - or maybe, on those of us who are prone to anxiety as it is. I definitely qualify for that one.

Beth, I know you wrote about this many times, but it is also good to hear encouragement once again - Pepto Bismol cannot mask real C Diff, right? I also believe, based on my readings and hearing many of the stories on the Forum, that it cannot harm you, if it is moderate use.

Anyways, I am supposed to travel tomorrow with my son, so wish me luck. I hope and pray that what has been bothering me for a couple of days is just IBS flare up.

All the best to you, and thank you again

Ismaila

beth22
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Re: Quintessential question after long time

Postby beth22 » Sun Jul 01, 2018 2:24 am

I did take Pepto Bismol and still do occasionally. I would take it along with you on your trip. I don't think it masks c difficile because I have tested positive while on it. But, it does help IBS symptoms for many,including me.

MKW
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Re: Quintessential question after long time

Postby MKW » Mon Jul 02, 2018 8:44 pm

Hi, I had a successful FMT in March 2017, and since have developed problems with SIBO and Candida. I am seeing an Integrative Doctor right now to try to get my gut microbiome improved.
In the process, I started participating in other chat groups on other social media sites.
I realized... we c Diff sufferers are not the only ones sufferering with GI problems from wrecked gut microbiomes. Lots of people with SIBO and or Candida and leaky gut problems attribute their issues to antibiotics.
Also, going on an ibs support group site is a real eye opener.
There are SO many people suffering with unresolved GI dysfunction that is caused by dysbiosis.
There are literally millions of people out there with IBS.
When I read post after post after post of people saying they have taken 8 immodium before work for a decade to be able to function... it is absolutely astonishing.
We have anxiety for good reason.
Many of us don’t get to go back to normal. I have accepted I will likely never be the same again.
I have developed multiple food allergies I did not have before including eggs and corn which are in everything.
I try to remain hopeful new microbiota restoration drugs that are in development may become what we all wish probiotics could be.

Davidtm
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Re: Quintessential question after long time

Postby Davidtm » Sat Jul 07, 2018 6:02 pm

My last fmt was February of 2017 after battling c diff since May of 2016. I’ve had multiple scares since then. Sometimes I wonder if it’s low grade c diff trying to take over and losing. Leaving me wondering if one of these times it will win and become full blown. I’ve got to imagine that is not logical thinking though. That this far out there is still a battle going on. I’ll go weeks or even over a month and then I’ll have an off day and it brings me back mentally. If things resume normal I go on with my life and even have days where I don’t think about it. The fear of relapse is something I think stays with people who kept relapsing. It gets better. Even though slowly for me. I just want to go back to where I wouldn’t consider or worry about things as simple as going to the restroom. And not care if things weren’t ideal.


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