Now what?

[newmommy]

I'm having a relapse. I thought I was in the clear--I sailed right through the holidays tapering down on my Flagyl all the way to one pill a week and was doing great.
Then a couple nights ago-whammo-horrible cramping, D, chills and I knew right away.
I honestly don't understand why--I was doing SO good! What happened??!

Anyways, so I call my GI doctor and he immediatly declares 'colonoscopy'. He's been very gung-ho on doing one since my first appointment with him, which has sort of rubbed me the wrong way.

When I last saw him end of Nov., he said that if the D were to come back, the first step would be a stool test and then if it came back positive, we would move on to Vanco. The first timea around, my stool test DID come back positive for one of the toxins.

So, I submitted my samples today and am waiting to see what the results are. In the meantime he has me back on the Flagyl, which I'm sick and tired of taking. It has horrible side effects, I don't tolerate it very well, and to top it off, I'm trying to breastfeed my 6 month old still and it is not the ideal medicine for breastfeeding (Vanco is safer).

The thing that is so frustrating me is his reluctance to try the Vanco now. I feel like if I don't submit myself to this colonoscopy, then his not going to give me Vanco. Maybe I should just ask him that?

I assume he'd be more willing to do the Vanco if the test comes back positive again.

In any event, I've had enough of the Flagyl. Should I just find a different doctor?
Thanks for listening. I'm really upset with everything right now, and on top of it, have to take care of my baby.

[Nancy1]

I did not want to have a colonoscopy during my cdiff, and my doc did not insist. I just felt that I was having enough pain and trouble without having to go through that too. If I were you and my doc wouldn't give me vanco, I would find another doc. I was miserable on Flagyl. Maybe your pediatrician could help to get you onto vanco?

I wish someone could tell us why we relapse! Then we could do something about it!

[Bobbie]

newmommy,
If you are on meds. (either Vanco. or Flagyl) the tests (including the scope) might come back negative. There are many false negatives with C. diff. You should be off meds. for 10-14 days before tests. See FAQ-Tests-C. diff., Colonscopies, Diagnosis & Symptoms; Also Recurrent vs Relapsing

A scope can tell the doc. a lot but has risks -- as does any "procedure."

If you don't want a scope, I'd ask the doc. about Vanco. If he doesn't agree, find a new doc. Do check your insurance -- it's an expensive med.

Good luck.

[jenkelly15]

Hey newmommy so sorry to hear about your troubles. The flagyl never did work on my c-diff and I only tried it twice. I was unwilling to try it again because I had a very strong sense it would not work. Plus, my GI doctor said if the flagyl didn't work we would go right to the vanco. Glad enough to say it's been 10 months off the vanco on the 16th and no c-diff so far don't want to jinx it. Anyway, good for you still breastfeeding I coudln't handle it when I found out I had c-diff after having my son. I only got to breastfeed him for 4 weeks. Plus, my doctor wouldn't let me breastfeed while on the flagyl, so I couldn't have even if I wanted too. Anyway, in my opinion from my experience not a doctor, but I would definitely try the vanco it had no side effects for me. I was so much happier and felt almost back to normal on it. I had AWFUL side effects with the flagyl. Oh yeah and the whole colonoscopy thing I had one 6 months after I had been off the vanco just to make sure everything was okay I was still having minor issues, but with my personality I had to know it was nothing and it gave me a lot of peace of mind that I didn't have any other GI issues. Let me know how everything goes. I know how difficult it is dealing with this awful illness and taking care of a baby. Just enjoy that baby and you'll beat this eventually hopefully very soon!!!!

[trob25]

Are you certain that your most recent bout was actually C-Diff and not something like post infectious IBS? I'm now four months away from my last Flagyl and go through weeks of normal, then a week of D, sometimes horrible, sometimes not. When it's bad I have cramping, chills etc., but I know that the D is not C-Diff, first because I've been retested three times while having it, all neg, second because it doesn't look or smell the same, third, because it goes away usually within seven days and things return to perfectly normal for innumerable weeks afterward.

Of course you could be having a relapse, but I'd be leary of a colonoscopy right away. As others have said, if you are on meds and have it done, it can negate the results. Two, if you are just having PI-IBS, then you could get C-Diff again by drinking the gallon of laxative required before the colonoscopy and flushing out all your good bacteria.

If you don't like your doc, I'd get a second opinion. I skipped out on my first GI because he was mean to me, stated false information about lyme disease, which I've had, and C-Diff and then tried to force a colonoscopy on me while I was on Flagyl and getting better.

[newmommy]

Thanks so much everyone for your responses.

The stool test came back negative, no surprise, seeing that I just got off the flagyl.

Right now I'm scheduled for the colonoscopy next Thurs. I'd rather have another c-section. Yes, I know, I'm crazy.

Basically I'm throwing in the towel because given the other options (getting a second opinion, etc.) I'm guessing I'll have to end up getting one anyways.

My biggest 'fear' of it is that I get hypoglycemic when I don't eat, and really don't know how I'm not going to eat for an entire day.

My doctor agreed to prescribe vanco assuming that I get the colonoscopy next week. However, right now the D has let up so I'm going to try and not take it if possible. I'd hate to go through all of that only to skew the results.

I'm 28 years old and have a baby. Wow. What a nightmiare.

Thanks again for all your support-will keep you posted!

[anlockwood]

Hi Newmommy!
I think we may have quite a bit in common. I am also 28 years old and have a now 10 month old baby but when all of this drama started for me with c diff he was around 5 months old. It is very very hard trying to be a mom to a new baby especially when you don't feel up to par. Unfortunately my baby also got c diff and that added to my struggles. I also had a colonoscopy done. I was a little worried about the not eating because I get the shakiness and spaciness feeling when I go to long without food but did fine with it. The drink has an electrolyte balance in it to try and keep your body from going to out of whack. My dr did it to rule out anything else going on. Like Chrons(sp?) or other junk. It came back fine and I am sure yours will too. Hopefully by the time you have it done you will have been off meds long enough to verify if you have active c diff. I don't understand why some docs are so anti vanco. Why keep doing something that is failing. Just listen to your intution and go with it. If you feel like your dr is not handling your care properly then pursue a new one. Best of luck to you!!
Amanda

[newmommy]

OMG get this! I got a call from the lady at the surgery center and went through the standard questionaire with her-one of the questions was, have you ever tested positive for MRSA or C-Diff? Well, of course I said, yes, c-diff back in October. I thought the conversation akwardly ended from there--I then get a call from the GI office saying they are refusing to do the colonoscopy there because I had tested positive for c-diff.

I refer to the original title of my post- NOW WHAT?!?

I guess I should have lied??? Can somthing please just go right for me.
THe GI doc is trying to straighten things out.

ARRRRGH!

[jenkelly15]

Are you serious that is absolutely ridiculous. They knew I had c-diff prior to my colonoscopy that was no problem at all. I don't understand that at all since most people on here have had them with no problem. My situation is so similiar to yours as well. I too was 28 actually 27 turning 28 the next month when I found out I had c-diff and like you I had a c-section too. Mine came from clindamycin they gave me right before delivery for a fever I had wonder what AB yours came from. Oh yeah and trust me 100% the colonoscopy was a piece of cake compared to the c-section. It was one of the easiest procedures I think except for the prep work, which the only part that bothered me was drinking the stuff. Oh yeah and I think it must be illegal to refuse to give you a colonoscopy based on your history of c-diff. They can not deny you a procedure if it is necessary I just don't understand that.

[fire7163]

Newmommie:

I had numerous scopes while I had active C-Diff. It sounds like a issue of miscommunication between two offices. If your GI is worth his weight, he'll have someone's head before it's done. Most doctors won't put up with an agency refusing to do a test that has been requested due to a known disease. Work with your GI and he'll if he really wants the scope done, will find someone that will do the proceedure. As for the scope, it's no big deal. I was back on duty the next morning.

Always remember that the clinic's and Doctors work for us and you can fire them at anytime if you're not happy with their conduct or performance.

Fire

[newmommy]

It was a miscommuncation between the doctor's office and the facility--and here I thought I was off the hook, lol!!

The D has let up but I've decided to go ahead with it anyways since it seems like a mostly routine procedure. I did get a second opinion and he also wanted to do one, so I figure might as well get it out of the way, and with the original doctor who has been treating me all along. He does have the right intentions (we had a loooooong talk last week) and I trust his judgement. Vanco is a powerful drug and if I don't need it, I won't take it. And if I do need it, then he'll know the smallest dosage that will be an effective treatment for me.

That is, assuming I can make it through the prep part. Yuck.

Anyways, wish me luck (I'm a wuss with all medical type procedures, if you havent' picked up on that yet!) I figured I made it through a c-section, I think I'll make it though this too.

[jenkelly15]

Newmommy I'm sure you are not a bigger wuss then me and I did it. Just ask anyone on here how paranoid I am LOL!!! The colonoscopy was a piece of cake. The prep work is not as bad as you think especially for people who have had c-diff since we are use to making many bathroom trips. Yeah I was worried about it for the whole couple months before my appointment, but it was nothing. You'll do great and then you will have peace of mind that everything is fine. Keep me updated and good luck with everything.

[newmommy]

Hey guys, I survived it, lol!! The prep was the worst along with the nurse who needed about 5 tries to get the I.V. in the right way.

Anways, the doctor right now is calling it post infectious IBS, which is music to my ears!

Of course it takes a week for all of the formal labs to process but he liked what he saw apparently.

I should put this in the funny section, but apparently the first thing I asked him when I woke up was, "You didn't find any worms in there, right?"

HAHA!

[jenkelly15]

I am so happy for you Newmommy didn't I tell you it was a piece of cake. Oh my god, I said the most embarrasing things when I woke from it I kept repeating myself my husband said and then the doctor ignored me. I said this is the doctor who made me cry and then I said to her how's your kid that annoys you. No idea were that came from I think it was something she told me like 3 years ago. The things you say when you are drugged up HA HA HA!!!!!