Relapse -- how quickly?

[Judy M.]

No, it's not "frank diarrhea," just not normal . . . not quite normal even with my IBS. I have no cramping either. I'm taking 250 mg. 4 times per day plus one Flora-Q between doses of Flagyl. It's interesting that the stool won't be normal on Flagyl. I didn't realize that.

It has been suggested that I call an infectious-disease specialist. What do you think about that?

Thanks for your input!

[Bobbie]

JudyM,
Some have good luck with ID's -- other with GI's. Both are more familiar with recurrent/relapsing C. diff. than docs. in most other specialities.

[Judy M.]

Bobbie:

I put in a call to the GI doc yesterday with "instructions" that I would be home yesterday a.m. and today a.m. Hopefully, I will hear from him today. I don't know what days he does procedures -- could have been Tuesdays. :-) If I'm not satisfied with his response, I think I'll call an infectious-disease doc.

Thanks!

[Sheila1]

Judy, I called Infec. Dis. offices around town and asked to speak with nurses then gave the nurse a very brief history (very brief - as in "I have cdiff I've relapsed umpteen times I'm looking for a doc with experience" that brief).... asked them if the doc had alot of knowledge in treating recurrent, relapsing cdiff. If they hesitated, I told them it would be a total waste of my time and the doctor's if he/she didn't have alot of up-to-date knowledge on the disease. Found one, asked my GP for a referral (they only took referrals) and I got a real winner - wouldn't trade my ID doc for any other doc I've had.

(Note that I did not ask the receptionists about the docs knowledge - they don't know enough - the nurses know what the doctor knows and work side-by-side with them every day.)

Hope that helps!

[Judy M.]

Sheila:

I did speak with the GI doc's nurse today. She said two things that I liked: One was that they would be in touch with me regarding my taking an antibiotic when I have dental work . . . because the docctor wants to read the new information on that topic before he passed judgment. I was pleased to be able to tell her that I was aware of this information because of the wonderful C-diff support forum that I found. :-)

The second piece of information was a better explanation of what I should be "seeing" as I improve. Apparently, the "consistency" I'm seeing is appropriate at this stage of my recovery. She said it will remain this way until the "good" bacteria builds up more and to continue to take the Flora-Q (as I had planned to do anyhow, as I'm interesting in seeing if it makes a difference with the IBS I had previously). So . . . I hope she's right!

We're going to drive to CT to see our kids on Saturday. I already told them that we won't leave here till probably 10 or 10:30, because that's when I usually stop "going." Mornings are the worst for me -- and I'm actually fine the rest of the day. I was concerned because I'm going off the Flagyl tomorrow (after two weeks on 4 x 250 mg. per day). So . . . wish me luck!

[Judy M.]

Well, I finished my Flagyl last Thursday, and we made it to CT and back successfully on Saturday.

Sunday and Monday I was "going" very normally -- and then yesterday (Tuesday) I started to relapse. This was definitely different than my IBS, and I will be calling the GI doc first thing this morning.

I'm bummed . . .

[Judy M.]

(Wish we were able to edit our messages here -- I would have added this to my last one.)

I just read the Three-Day Rule. Hmmmm . . .

The question I have is this though: When I stopped the Flagyl, I was still seeing what the nurse described as the "sluffing off" of the bad "stuff." She said that that would continue for some time after I stopped the Flagyl -- it did continue for a couple of days before I saw normality -- and now yesterday's flare-up. It seems as though if the Flagyl worked, the "sluffing off" would have been complete. Am I wrong about that?

[Bobbie]

Judy M,
People people don "return to normal" for some time. Some (about l out of 5) develop IBS -- symptoms similar to C. diff. See FAQ-IBS.
If you become worse, contact your doctor.

[Judy M.]

I already had IBS before all this started. Yesterday morning, I thought I was simply experiencing IBS symptoms . . . until I "went" eight more times. That's now how my IBS works.

I have an appointment with my GI doc at 4:30 this afternoon, so I'll have to see what he has to say. Under normal circumstances, I would say it's just a matter of time. But as I've mentioned, the most upsetting part of this is that we're flying to FL at the beginning of June for our closing and then driving down when we move toward the end of June. While I realize others have found ways to handle traveling, this is still too new for me to know what to expect and then how to handle it. I just hope the doctor can make some suggestions!