CDiff or PI-IBS

[CDiffMommy]

Hi everyone,

I've been on a vanco taper for almost two months (started at 500mg 3x/day, then 250 4x p/day, 250 3x/pday and now I'm on my second week of 250 2x/day - I also take 1000mg of Florastor daily and 2 yogurts). I have been doing really well over the last month. I eat pretty bland foods, but have been introducing things here and there. I'm supposed to stop vanco in a few days, and pulse for a few days afterwards, then completely stop by the end of the week. Here and there, I've had not so great days (which for me is increased BM's and just feeling "not right"), but they are few and far between lately. Today, I had a bad day - I had about 6 BM's so far today....it's not D at all (the last one was not 100% solid, but not D). I ate a bunch of oatmeal cookies (homemade so I know there was a lot of butter, sugar, etc in them) and a few other things last night and this AM. I'm assuming it's from that, but my question is, can you have THAT many BM's in a day just from PI-IBS and eating something that didn't agree, or is this most likely CDIFF still in my body?
I plan on calling my DR. tomorrow to make sure he's ok with my stopping vanco this week, but I know so many of you are experienced with this and want to see what your thoughts are on CDiff vs. PI-IBS.

I am comfortable now, but petrified that once I come off the vanco this week, I will have these symptoms and not know whether it's cdiff or IBS. I know about the three day rule, but unfortunately the last time I had a relapse (it was the first and only relapse), I ended up in the hospital so I don't really feel comfortable waiting it out.

Thanks in advance for reading this and your opinions.. again, I plan to call my doctor tomorrow, but appreciate any thoughts in the meantime.

Thanks

[anlockwood]

I totally understand your concern. Many many days I would feel the urge to go more often and would but it would be formed and not D. I would begin to worry and run through my mind that if I am going more it must be because c diff is returning. I couldn't have been more wrong. It was just PI-IBS. I am sure the oatmeal cookies could have contributed. I believe oatmeal has a lot of fiber in it so that will keep you bm formed but can increase how much you go. My rule is to absolutely not begin to worry unless it is full on watery D. I know this is hard to do but it will help you to get through. I will keep you in my prayers.
Amanda

[klt03301]

I had the same symptoms for many months after coming off my vanco. I never had "D", but more than normal/or the other way around and intestinal sorness, along w/nausea. I've had too many tests to count now since coming off vanco...they've all been negative. I have only started to feel like my old self prior to C-Diff the day after Christmas. It had been 9 months since stopping vanco.

I'm glad you're feeling comfortable...this is a big step in the right direction. I've had my share of on and off days and probably still will.

Will be thinking of you and hoping your IBS resolves as soon as possible!

Karen

[carrie]

I also say don't worry, I've been off meds for almost 14 months and still have days where I go as many as 4-5 times in a day - especailly after eating something new or high in fibre or exercising at a higher intensity. It doesn't scare me like it use to but it still bothers me. Do try to stay away from things high in sugar as you go off your meds, sugar can feed the bad bacteria - but do treat yourself once and a while just don't over do it.

[CDiffMommy]

Thank you all so much for your replies! It is so comforting to hear this from people who have been through it. I just hate the feeling (as I'm sure you are all too familiar with it as well) of feeling so great and then how quickly you can feel not-so-great, and start worrying. I can deal with days like that as long as I know it's not heading to a relapse.
My biggest worry is that I'm coming off vanco this week. I'm going to discuss it with my doctor and see if he wants me to pulse for an additional week (since I was only on a taper, not pulse). I just want to be 100% certain I did everything I could to get rid of this once and for all.

I will keep everything you said in mind. Roy - that makes a lot of sense about the gut recovering, and solid vs. watery.

Thanks again everyone!

[CDiffMommy]

Well, I spoke with my doctor today and he thinks I should still come off the medicine this week as planned. If I were to finish out the taper, I would be finished up (at 2 per day) on friday evening. If I do a pulse (albeit a short one), I'll take my last pill tomorrow night, skip thursday, take two on friday, skip saturday and take my last two on Sunday.
I asked him which one he thought was better and he said he really didn't see it making much of a difference because it wouldn't be a long pulse period.
Does anyone have any opinion on which route I should take? I feel like I should do the pulse even though it's just for a few days because it will also allow me to see how my body is off of the vanco for a full day.
I just want to do the best thing possible and not second guess which route I took. I'm leaning towards pulsing right now.
I will continue to take 1000mg of Florastor daily as I have been (2 in the am, 2 in the pm) and will do that for at least another month.

Thanks in advance!!

[CDiffMommy]

haha I definitely think he knows what he's talking about, however he said it won't make much of a difference if I finish out the taper as opposed to pulsing the last few days....so he pretty much left the choice up to me. I was just wondering if anyone here thought I should do one vs. the other since I can do either according to my doc.

Thanks!

[raj138]

It really would not make a difference because you are only doing this for a few days. But if you feel better going off with a pulse, then go ahead a do it that way. Either way you will have to wait and see if it comes back, so starting or continuing probiotics is probably more important than how you finish off the medication.

[CDiffMommy]

Thank you - Yes, I plan to continue taking the 1000mg of Florastor for at least a month after I stop the meds, and then I'll just decrease to 500mg after that.

[Bobbie]

CDiffMommy,
My personal (non-medical opinion) is to get off Vanco. gradually to help your body adjust.

After my lst 4-yr. episode of C. diff. & another one two years later, I've been free of active C. diff. since l999 but now have IBS. It's often difficult to tell the difference between the two -- especially since it's best to be off meds. for 10 to 14 days prior to testing.

See FAQ-Three Day Rule & FAQ-IBS.

Expect some "off" days, but call your doc. if you become worse suddenly & the symptoms persist.

Good luck. I'm sure you will do fine.

[trob25]

Late reply here, but I've been officially diagnosed with PI-IBS and what you described does sound like that.

I've been off Flagyl for almost 4 months now, first month off I was going 1 -5x per day, all solid, but I would feel terrible some days with discomfort and intestinal noise etc. It would last for a few days or a week then go away. Things went like that for a month, then I had all out D for two days! I was terrified it was a relapse, but tests were negative and I went back to normal, like perfectly normal, in a few days.

Things went on and off like this and continue to. Don't be alarmed even if you have D one day, as long as it doesn't smell or look like C-Diff (you'll know) it's probably not. I had D on and off for a week and a half at one point even, felt horrible, worried that the C-Diff was back, but it never looked or felt like active C-Diff, tests were neg and things went back to normal again!

So don't worry about frequency, I've gone 5x per day sometimes since this, and don't even worry about D some days (unless it's like C-Diff). My GI actually has me on Fiber tablets as they help with D believe it or not, but don't just go out and take them without proper medical advice. Stay on the probiotics and be aware that certain food may cause intestinal problems. I can't eat certain red meats, candy or a few other things. The only way you'll know is to try out different foods and see what happens.

[CDiffMommy]

Thanks Bobbie and Trob25 - I really appreciate the feedback.
Bobbie - quick question...when you say you think it's best for me to come off gradually...do you mean you think I should pulse these last few days since that will be a bit more gradual?

Thanks again - I am praying that this is the end of cdiff for me!! My dr. told me I will test for it about 7-10 days after I finish off the vanco (I'm going to go 10 days after since it's a bit longer), but I know that it's about 70 days or so (from what I've read) before you can tell you're really c-diff free!!

On a side note - for those of you who are bothered by IBS....are you able to drink coffee? I haven't had a cup in sooo long and am dying for one. I won't be testing it out anytime soon since I don't want to confuse a reaction from coffee with cdiff symptoms, especially since I'm coming off the meds soon. Thanks!

[carrie]

Coffee is one of the things I miss most. I almost hate getting out of bed on the weekends because I loved just kicking back and enjoying a big cup of java. I've tried decaf twice with no luck. I was fine the day I drank it but the next day was bad. I've read on an IBS site that it is not only the caffine but an enzyme in the coffee bean that is a GI trigger, that is why decaf can even cause issues. I'll try again in a month or two because I miss it sooo much. Hopefully your system will accept it better thatn mine as many on the site can tolerate it.

[CDiffMommy]

Well, today is my second full day off the vanco. I pulsed the last few days and stopped on Sunday. I am a nervous wreck and can't help it. I am having a not so great night tonight (no D, just not feeling too good). I just need to vent to people who understand this - even if I don't get replies back. I'm just hoping and praying to God that this is just my body adjusting and that this is normal after stopping the medicine. I know about three day rule, and the 3 W's...and I'm trying to keep telling myself that. I guess I just want to hear from people who got rid of it, that they had a few not so great days following the end of their medicine.
I'm still on my florastor (1000mg per day) and eating two yogurts a day. I had sauerkrat yesterday and today because I heard that was a good thing to eat.
Anyway, thanks for letting me vent... I really hope this is the end of this disease for me.

[Bobbie]

CDiffMommy,
Expect good & bad days while your body adjusts. For some, it takes a short time -- longer for others especially if you have IBS.

This is one reason C. diff. is such a nerve-wracking disease. The uncertainty can be a killer. Try to keep occupied. Exercise if you are "up" to it. Read, go to movies. Try to forget about C. diff. -- easy to say, hard to do.

Good luck. You will make it.