Reuteri/hope I'm not relapsing

[trob25]

Hi all, I've been having a hell of a week. Started having some D on Monday, it resolved on Wednesday and Thursday only to return Friday. Today has been iffy, meaning loose, at best, so I'm officially freaking out again. This time it has come with some mild pain every now and then in my intestines, the first time this has happened in quite a while. (btw today is 60 days since my last Flagyl and I tested negative 2 and a half weeks ago)

I remember all I have read here and everything that everyone has told me. For example, the 3-day rule and the fact that a relapse would mean things getting worse every single day, not better, then worse, then slightly better again.

Anyway, in an effort to do something, I snagged some primadophilus reuteri today to add to my culturelle and Florastor regimen that I've been on for two months. Of course the only kind I could find at the nearest health store (45 minutes from my house) only has 1 billion CFU per capsule. Is that enough? My Culturelle is 10 billion and my Florastor is 5 billion, 1 billion seems like nothing honestly.

Should I be seeking out the 5 billion dose online? Or even the optima line with 35 billion CFU?

[trob25]

Thanks feeling hopeful. I made your chicken dish two weeks ago when I wasn't feeling well and it worked. I'm just out of the ingrediants today. As for new foods, I can't really think of anything? I ate at wendys on friday, but I've eaten there twice since I've had this and been fine, got the same thing. I did have a cranberry juice and an Acai berry juice, wonder if they did it?

Thanks again for all your help!

[trob25]

Sorry, I ate at Wendy's last Friday not this Friday, that was 8 days ago now, not sure if that would still be effecting me considering I've not had a problem twice before, but if it is IBS, then perhaps?

[klt03301]

Hi Trob. Sorry I can't give you much info about the probiotics; I only take one with 20 billion cells and 9 strains in it. I was taking three different ones until about a month ago. Can't afford to get the other two.

I can say that I did great for quite some time, then all of a sudden things started going downhill. Like what you are describing, except I have terrible nausea with it. I was doing alright until I had some raw tomatoes (that's been over 3 weeks) and I haven't been right ever since. Things I used to eat, I now can't for some reason. Was eating grapes just fine; now I can't.

It's very frustrating and depressing, I know. I'm just taking things one day at a time, tyring to keep my diet simple. I have been working out pretty vigorously, so I don't know if that's the problem.

You aren't alone; there are so many of us going through the same thing. I've thought about having my stool tested again, but I'm holding off because I think it's just IBS. I'm confused as to why all of a sudden things went haywire, myself.

Thinking of you and hoping you'll feel better soon!

Karen

[trob25]

Hi klt03301, yeah, this whole thing is crazy, the fact we were both doing fine for a while, then get really sick again?

I wonder if I should get tested again as well, but I figure I had a test 2 weeks ago during a bad spell, it came back negative and then things returned to perfectly normal for a while, only to get worse again!

Well, I hope you start to get better soon anyway, thanks for commenting :)

[trob25]

I don't want to speak to soon here and jinx myself, but things seem to be slowly getting better again. More solid, but I'm having some bowl noise (this never signified a relapse for me, I've had it every morning since I first got c-diff, I just get it at other times in the day as well now). The pain is decreasing in both intensity and frequency, and I'm back to going 1-3x daily. Hoping and praying this continues.

Again, I'm encouraged by the fact that if this were C-Diff again, it wouldn't improve at all, even a little, like this.

[trob25]

Oh, and I meant to add this to the end of my post. Do these sound like the symptoms of IBS to those of you who now deal with this? You know, having random D with pain, then back to moderately normal, D, then completely normal etc.

I've got to make a follow up with a new GI (last won't I went to was awful) and I really don't even want to, but my General Practitioner wants me to just to be safe. I feel like he won't even be aware that you can get temporary IBS after C-Diff as the last GI seemed to know almost nothing about it, assuming only old people and "idiots" who reinfect themselves by not washing their hands have problems with it. Maybe I'll be surprised though.

[klt03301]

Yes, Trob, it does sound similar to IBS, BUT FOLLOW UP with a GI. That is absolutely important. Only a doctor can tell you whether you have it again or not, but try to relax a little and not worry too much. I know it's hard to do, TRUST ME. You do need that follow up, though, and if it's IBS, maybe there is medication that will help you get through these episodes. I take Levsin which really helps, though some others here say it didn't. It's worth a try! Also...what's helped me the most...Nortriptyline. It's an old tricylcic antidepressant which settles the gut. It's been a wonder drug for me!

Let us know how that follow up goes and I hope this time around you get a better doc!

Karen

[trob25]

Yes, Trob, it does sound similar to IBS, BUT FOLLOW UP with a GI. That is absolutely important. Only a doctor can tell you whether you have it again or not, but try to relax a little and not worry too much. I know it's hard to do, TRUST ME. You do need that follow up, though, and if it's IBS, maybe there is medication that will help you get through these episodes. I take Levsin which really helps, though some others here say it didn't. It's worth a try! Also...what's helped me the most...Nortriptyline. It's an old tricylcic antidepressant which settles the gut. It's been a wonder drug for me!

Let us know how that follow up goes and I hope this time around you get a better doc!

Karen

Don't worry, I'm making the appointment tomorrow. Thankfully, living in the smallest state means that if this doc doesn't work out I can check out the two neighboring states (2 hours or less away) and see if there is someone better there.

I am still worried about meeting a new doc, but I've had great ones and terrible ones in the past besides this one GI, and you don't know until you meet them.

Is it possible to diagnose IBS without a colonoscopy btw? Or is it required to rule out other things? I've checked out the symptoms of Crohn's and UC and I don't seem to have those kind of symptoms at all, but I'm not sure if the doctor will ask me what my symptoms are or just demand an immediate colonoscopy like doctor crazy did because, first, he didn't listen to a thing I said and two, said it was "practically impossible that I had a C-diff relapse at my age." :rolleyes:

[klt03301]

Hey Trob. You know, at this point I would probably welcome a colonoscopy just to ease my mind. I had a sigmoidoscopy while on Vanco, and everything looked great. Biopsies and everything were OK. However, I was on ABs and that could have made things appear to be OK. That was back in April. As you know, things were going great for me for months, then all of a sudden, I don't know what's happened. Had an endoscopy a couple of weeks ago...said everything looked perfect...but...sumpin' ain't right :-( Some things have changed that I've not experienced before.

It sounds as if you don't want one and I can understand that. Lots of people here have had them, though. You keep questioning what's going on and I don't know that you'll find an answer without further testing of some kind, even if it's another stool sample ( I think 3 is what the docs usually want). To my knowledge, docs can't tell if you have IBS w/colonoscopy, but they can tell you if you have other problems, such as the ones you mentioned above. I think when eveything else is ruled out, they say it's IBS. That's just my "personal" knowledge...I'm no doc! I know you want to figure this out. Hopefully you'll find a doc you're really comfortable with who knows what he's doing.

If things continue this way w/me, I'm getting a colonoscopy. After that's done and everything is good, that's it for me. I'll just have post infectious IBS (b/c it's certainly not like the IBS I had prior to C Diff) and deal. It's no fun, is it?

Karen

[trob25]

Well I did have myself retested for C diff the first time I though I was relapsing about three weeks ago. Tests came back negative and everything returned to normal for me, so I figured I was all set. But then two weeks later it started acting up again.

I don't actually fear the colonoscopy, I fear that drinking a gallon of miralax is going to cause me to have a relapse after the procedure. I mean, I have bad weeks that worry me, but the fact that things return to normal at some point must mean I have some good bacteria coming back. I'd hate to lose that.

[bpagan]

trob25. You won't lose what you have gained. The prep is the worst part of a colonoscopy and you should try not to worry.

[trob25]

trob25. You won't lose what you have gained. The prep is the worst part of a colonoscopy and you should try not to worry.

Thanks I'll try not to, although I have been a worrier since birth lol.

I made my GI appointment today, then I had a really loose BM again after a good day yesterday. I then called my general practitioner to set up another freaking C-Diff test "just in case." So I'll go pick up the supplies tomorrow. :S

I honestly feel like kicking a hole through my wall or driving off a bridge right now. I have always had this thing where I despise being sick, just absolutely hate it and get angry at the disease, and I am never happy until I'm better. I thought I had this beat after 5 straight weeks of everything being perfect, even went on a vacation in Oct. and was fine, but then I get this, whatever it is.

[klt03301]

Hang in there, Trob. What you wrote about despising being sick and your anger and unhappiness...I feel exactly the same way. I don't handle gastrointestinal illness well; everything else I handle fine. You WILL get through this, you WILL find out what this is and you WILL get better, but it will take time. When I fist joined this board, I believe Vike described it as a roller coaster ride and I just had to go with that. It's so true! It sucks and I've had to learn to feel blessed on the good days and when the bad ones hit, remember that I will one day feel good again.

I'm so sorry you're going through this right now!!! Please let us know how things go.

Thinking of you...Karen

[trob25]

Hang in there, Trob. What you wrote about despising being sick and your anger and unhappiness...I feel exactly the same way. I don't handle gastrointestinal illness well; everything else I handle fine. You WILL get through this, you WILL find out what this is and you WILL get better, but it will take time. When I fist joined this board, I believe Vike described it as a roller coaster ride and I just had to go with that. It's so true! It sucks and I've had to learn to feel blessed on the good days and when the bad ones hit, remember that I will one day feel good again.

I'm so sorry you're going through this right now!!! Please let us know how things go.

Thinking of you...Karen

Thank you very much for the advice and support Karen. I really do appreciate it a great deal, and I mean that to everyone else who has replied to me as well. Nobody in my actual life understands what this is like and they either don't care much anymore or think I'm crazy, so I'm glad to have you guys :)