Can cutting back Florastor cause a relapse?

[NikaNik]

Hiya, friends!

I'm just over two months off the Dificid taper (this Sunday will be 10 weeks) and have been doing well - working, eating more etc. However I have had some days where I would go 3-4 times (usually in the morning) so I cut back on Florastor to see if that was making me go more often (I still drink Kefir and take Enteragam (a bovine immunoglobulin that's supposed to help with IBS and disable c diff toxins or some such). The week after stopping I only went 1-2 times. But over the last few days I've gone 5 times, then just once, and 4 times today and yesterday (no D - mix of formed and little pieces in piles/some with ragged edges). This almost always happens in the mornings.

This is my first week back to my editing job full-time (two-hour commute by bus which don't always have bathrooms and it's "that time of the month" so to say I'm stressed is an understatement!). Today I missed my usual bus because I had to stop and use the restroom at a deli. So nerve-wracking. No D but little pieces in piles. Through this entire recovery period I feel like I can smell it and still have mucus when wiping. I'm looking for a job closer to home.

Could the Florastor have been holding back a relapse (I bought more to start taking today). Or does this sound like IBS/nerves? I have not been tested yet as the doc doesn't recommend it unless one is having watery D three or more times in a day.

Any advice is appreciated. Thanks, as always!
Nikki

[getwellsoon]

Florastor could have been helping so if you are worried why not go back on it. If things improve you know that it does indeed help you. If not you know you just have different BMs different days and who knows why. I'm sure you are fine, you are healing and its going to be up and down for awhile so hang on for the ride. Seriously though, try a Florastor every other day or every day and if it helps then you know its for you. Hope today is a good day.

[Lisa33]

Hi Nikki - I agree with Carol on trying the Florastor every other day vs. every day, and see if there is a difference. Going back to work full-time and having to commute by bus 2 hrs each way is enough to cause anybody anxiety. Since you are not having D, it does sound like IBS to me. Just thinking about "will I have to go to the bathroom while on the bus" will cause you to have to go to the bathroom. It's that darn "brain-gut connection." I swear on the mornings that I have to go several times like you, I constantly say in my head, "do I feel that urge to go again." After going several times, I sometimes just ignore the feeling of having to go and get my mind occupied on something else, and most of the times the feeling goes away. I really do believe that our mind can make us have to go to the bathroom. I'm not saying that it's healthy to hold in your BM by any means, but on these days that I am questioning, do I have to go again or not, I do believe it's mind over matter. Most recovering c-differs are fixated on every feeling in their gut, which can create unnecessary anxiety, which leads to IBS.

-Lisa

[NikaNik]

Thanks, ladies!

I took the Florastor twice yesterday (probably should've just taken it once). Got ready for work today and had small pieces followed by a mudpie type deal. I feel fine otherwise other than often feeling like I have to go even if I don't, which I've had through recovery (thinking things are still sensitive in that area?). But I'm lucky in that I didn't have fever or pain when I first came down with c diff. Called out of work because I was afraid to take the bus for two hours. Afraid of losing my job over this even though my boss has been incredible (I carry our health insurance which is what worries me the most).

Sorry for venting when so many have it worse. Will be calling my doc to see what they say or if they will do a test yet (I'm at 66 days) or maybe they can wave a magic wand over me and give me my old guts back! : )

Thanks again for listening. xo

[Dobies#1]

Nikki, I only take one Florastor a day for several months because when I took two I had several BM's a day. That lead to some pain and burning from wiping so much which also led to tenesmus which is the feeling of needing to poop all the time. If I get constipated and have to wipe a lot then I still get the tenesmus.

[Jackie25]

Hey girl :) I also noticed that when I didn't have "active" c diff or was off c diff meds, I would take 1 florastor in the AM and 1 in the PM. This seemed to be okay for me, but if I took any less I would notice a difference in my BMs. So I would quickly start back on my usual regimen. Now, while im taking c diff meds I take an extra one a day just to have that extra defense! Does it work? Heck if I know lol it just makes me FEEL better which in turn keeps my anxiety at bay. Resulting in less frequent RR visits and "mushy" stool. As Lisa mentioned, I think your situation is more of the head to gut correlation, sounds that way to me anyways :) im not sure if florastor can hold back a relapse, I suppose it's possible but I personally don't think so. But I'm not a doctor lol

The occasional pile, pieces, mush, mucus, even D are all normal during recovery. Heck they're normal for even those who have never had c diff. I don't know anyone who has consistent BMs that are the same every single day for that matter. It sounds like yor just nervous to me, I know how that goes! Try to relax and focus on how you feel. No D, and you feel fine other than a change in BMs so I personally wouldn't think too much of it. I think your way far enough out to test, but if your feeling okay why bother? :) im sure you'll be back to your "new normal" sooner than you think!

[NikaNik]

Thanks again! I SO appreciate you all. I just got off the phone with the PA at my doc's office and she said what I'm experiencing sounds like typical recovery/post-infectious IBS. She said she does consider the pile of pieces D which surprised me since I have it so often so I asked her again and she said, "Well that's more really loose" then said since it comes and goes for me and that I'm overall feeling better, it doesn't sound indicative of c diff and no test needed.

But she said something about how if I'm still having altered bowel habits by the end of the summer (which would be about five months of recovery for me) that they would recommend a colonoscopy (and when I asked her if the prep could cause a relapse she said it's possible but less likely the farther out you are). As much as I wouldn't mind having one to make sure nothing else is going on, it seems too soon for me since most people have the IBS for quite a while.

She also mentioned it's common for c diff patients to need cognitive behavioral therapy for the anxiety. GEE, YOU THINK? ; )

I would like OFF this merry-go-round, please. Who is joining me? We can go eat funnel cake and ice cream and pretend this s*it never happened! Ha.

[seekingcure]

Unless there's really some good reason for it, like bleeding, family history, etc., I would put off a colonoscopy as long as possible, especially at your young age. But you can make that decision in the fall and, hopefully, by then, things will be more back to normal and you won't feel like you need it.

You mentioned you take Florastor, but I don't recall if you take any other probiotics or not? Kefir (preferably homemade from kefir grains) has been really beneficial for me and I had IBS for years prior to c-diff. You might also consider adding other fermented foods. I like the Bubbie's brand dill pickles and I eat the sauerkraut too, even though I don't particularly enjoy it. I can get it down with crackers and lately I've been spreading a little roasted red pepper hummus on them first for fiber, then topping that with sauerkraut. Fermented foods provide more benefits than commercial probiotics because they also have enzymes that help you to digest your food and also help with vitamin absorption. They are also much less expensive. Where you are located, you might also be able to find the Bubbie's pickled green tomatoes, which have even more probiotics than the pickles and sauerkraut. Don't get the Bubbie's bread and butter pickles for the probiotics, as they are not fermented and don't have any.

What you are having definitely sounds like IBS and stress does play a role in it. I know I am worse when I am under stress. Just the stress of having to ride a bus two hours each way every day would be enough to bring on an attack for me and it's probably not helping you either. I hope you can find a job closer to home soon so you won't have that added worry.

[Bobbie]

NikaNik .
Add a a lass of wine and I'm in.

I have not had c diff in three years but I still have periods of constipation and then diarrhea. I no longer watch what I eat - after 22 years of this, I am tired. O I could be hit by a buss tomorrow and miss the chocolate cake from last night!

My son had C diff in 1975 at the age of four and again 6 years later. No one mentioned food but I watched his diet. My first bout of c diff was from 1993 to 1997, my second in 1999, and my third was in 2011 after more than 10 years of being c diff free. After every treatment - including an FMT - I had months of IBS but tested negative.

During one blind study I was on - for Florastor - I had to keep a diary of everything I ate for a year and noticed food didn't really seem two make a difference - with the exception of dairy products. Florastor did not help or hurt me.

As long as I don't have c diff, I am cool with it. All my bouts were linked to antibiotics and even the word makes me .shudder. I've had pneumonia seven times, and multiple UTIIs and IC, Also osteomyelitismand osteoporosis plus acid reflux and a hiatal hernia.

Everyone is different, and some will have to be careful of certain foods. When I have the Big C, I take Benefiber and increase other fiber like fresh veggies and beans. i do the opposite with the BIG D and cut back on dairy products. I always drink lots of water. You can also try the BRAT diet for a couple of days or just "" eat bland"" and eliminate all spicy foods.

You might just be having a bad day or keep a record and maybe it is the Florastor. Stress can also play a big part as Bea said.

[NikaNik]

Thanks, Bea and Bobbie! Bobbie - you are so right about not missing the chocolate cake in life. : ) Bea - I love Kefir! I drink the Lifeway brand (usually the plain). I bet the homemade is awesome. I may have to try that! I've added the Floastor back once a day and so far, so good.

Tomorrow will be 10 weeks off the Dificid taper for me! I can't thank you all enough for your support. The one thing I still can't seem to get past (that I have read online) is that even if we test negative we will have c diff in our systems forever. Also that it can flare up not just with antibiotics but anytime we are run down/sick (I think it was Beth who mentioned her doc saying that). How do you forget this could be in your system and pop up? Does that go away over time?

(Please don't bash my anxiety - just wondering if anyone has tips/things they tell themselves to ease that thought.)

Overall, I'm doing well and am very thankful and know how blessed I am.

Blessings to all for a healthy, happy weekend (and cheers, Bobbie, with a glass of wine!). : )

[sevla]

Congratulations on the 10 weeks, Nikki! That it awesome - you are doing great!!

That's an interesting question you have.. I just tried to find some information without succees (all I found were sad stories about c diff). I wanted to check if FMT would be the only way to get rid of spores? Or does Dificid or vanco do the trick? The thought of having it in our bodies for ever is sure overwhelming..mainly to live in a constant fear of taking antibiotics..or getting sick or something.

I also would welcome any advices on how to live a normal life without being a prisoner of the worries and anxiety!

[NikaNik]

Thanks so much, Sevla! Mornings are still tough for me (that seems to be when I use the bathroom the most) but I am so happy to have made it this far. Hope you are doing well, too! I think today is six days off for you which is great! Keep hanging in there. : )

According to what I saw when I Googled - Vanco kills the bacteria but not the spore and Dificid kills the spores since it's sporocidal (which my doc confirmed) and destroys less good flora hence the best success rate of all the antibiotics. But there's no way to tell if it has killed all the spores (which is why some relapse and some don't). I think FMT probably has the best chance of crowding out all the c diff and its spores but some do relapse after taking antibiotics (maybe it has to do with how soon one needs antibiotics after treatment? Not sure). But some people never get it again so I am trying to cling to that!

They really need to get moving on that vaccine and the prevention that protects the gut from antibiotics (I posted about it in Media Reports last week, I believe).

[NanciT]

10 weeks is great Nikki!! You are getting there!! I understand the Fear and anxiety which can often make the IBS worse!!! It does for me!
I also find mornings difficult, just not know if I will go 1,2,3 times...just don't know even eating the same boring food! But as time passes, I slowly see things getting back to some kind of normal.

The antibiotic fear I believe we all share. It's been a month since I was on Keflex and took the Vanco along with it for 10 days........so far so good!!

I say go for the chocolate cake too!!

[roy]

Niki
Dificid is not known to be sporicidal so please dont post that it kills spores.
If you have found a medical opinion that it is sporicidal then please post a link to it
If a Dr has told you that dificid kills spores he is wrong.
If Dificid were sporicidal it would open up a massive market as a safe cleaning agent, much more lucrative than a med!
Dificid is superior if its used as the first treatment because it does not decimate the good flora but kills the vegative c.diff.
Its the good flora that beats back the spores and finaly effects a cure after the dificid is finished.

[NikaNik]

Hi, Roy! My bad - I just looked up the info from my doc's PA (they are a highly regarded office in NYC specializing in c diff) she said Dificid is bacterocidal but said it "kills the spores" which doesn't seem to make sense and I will double check with the doc himself. This research article states it's sporocidal though: http://www.ncbi.nlm.nih.gov/m/pubmed/25728208/ Bummer that it's not true but with c diff nothing surprises me anymore. Thank you for your input and correction. Sorry about that!