Concerns about False Positive for Recurrence

[Bobbie]

Hang in there, Brandy. You are in one of the worst phases of c diff - the watch, wait, and worry stage.

As everyone said, you are your best advocate.

[brandine]

Thank-you, Bobbie! I appreciate all of your work/resources in this board!

[brandine]

I just wanted to follow up and say that it has now been almost 4 weeks since I chose not to treat (w/doctor support) after I had a positive test for C.diff after 2 mornings of WD. I worried it was a recurrence after being treated for my initial bout in mid-May, but after my symptoms subsided after this mid-July episode and visiting with my wonderful ID doctor, I didn't treat--he recommended not. My ID doctor even said that the yellow M WD that I was having was signature c.diff, but he said that the body can fight it off w/o treatment, IF the symptoms subsided as mine did by day 3. And I'm doing great. This is just to say that my experience turned out to be a normal part of recovery, and the 3 day/3 WD rule of thumb really helped me out. Now I'm just hoping that the recovery continues in this positive direction. I'm eating pretty bland but only having 1-2 bm per day, formed. I'll follow up if any thing changes. Thank-you!

[roy]

Perfect!
The nature of c.diff means that meds beat back the active overgrowth then the body has to deal with the "hatching" remaining spores to finish your recovery.
It makes perfect sense that some mild symptoms may return while the body fights of the stragglers and finishes the cure.
And of course it's highly likely a test will be positive while that's going on!

[brandine]

Thanks, Roy.
Your explanation, and the way that you described it, really makes sense. It's better to think of it that way than to think of it as the disease coming back or trying to recur. I like the idea that the body is fighting off some leftover spores toward full recovery. This just make sense, like my round of vanco took care of the big stuff but left some little stuff behind to work its way out... something like that. Here's hoping to no recurrence down the line!

[lunasdad]

I am interested in this post, but confused as to WHEN it is the right time when testing positive to go back on the meds. So in my example I finished my first course of Vanco and felt great for 2 weeks. I started getting body aches and feeling fluish and 2 days later the odd BM's started with mucous. I was not going 20 times a day, but had multiple WBM for 2 days and felt awful. I started the meds and tested positive for CDIFF again on the advice of my ID and GI. I guess my question is if I find myself again after finishing my current course is it the WBM or the fact of how sick I felt leading up to the stomach issues that I should focus on?

[roy]

A relapse is indicated by typical watery D 3x a day or more for 3 consecutive days (or sooner if D is relentless).
Anything else, including a positive test can be part of the normal healing process.
Meds do not switch off c.diff, your body has to recover from the illness AND the additional damage from treatment.
Rough days are to be expected for a while and IBS can almost mimic c.diff if its severe.

[brandine]

First, lunasdad, I would say that you listened to your doctor and went with your hunch, and there's nothing wrong with that. I was very close to doing the same. I understand the confusion. It's hard to know what's right.

All you can do now is follow your course and not beat yourself up about it. But maybe there are lessons to take to your post-vanco treatment round 2.

Recovery after the vanco wasn't easy for me. While I was on it, things seemed kind of stable (emphasis on "kind of"), but as I finished and tried to get back to normal, I struggled a lot with symptoms. The first couple of months after finishing my first (and only) round of vanco were very up and down for me, constantly thinking I was relapsing but wasn't... just in recovery.

I had many days of multiple soft stools (5 to even 8 or 9) and occasional D, and occasional M. It seemed like I was talking about my BMs constantly with family, always worrying about each one. I sometimes felt a low grade fever or just a bit out of sorts or worn down. I was in my bed a lot, or just sitting around. But I was overall stable and the D or soft stools never became relentless.

Maybe after your vanco finishes, just expect that it will be tough going for awhile, even 2-3 months or more before feeling a bit more normal. I have radically changed my diet (to help along the recovery) and hope that it's just temporary, but for now very bland (lots of rice, chicken, potatoes, lean pork, salmon, tuna, gluten free pasta, almond milk, etc.).

I have done a lot of scholarly research on c.diff, and now that I know a lot, it seems like there is a lack of education with doctors. You could try finding a different ID for follow-up. But in the mean time, just know that you are healing, and although maybe your body didn't need this round of vanco, you're still on the path to getting better, though it may be slow.

I'm accepting my own new normal and now trying to immerse myself in the things I love--hanging out with family, the arts, music, teaching, reading, etc. I stopped monitoring my symptoms like a hawk and tried to relax. I'm even on a low grade anxiety med and have found yoga and you tube videos for meditation/anxiety helpful. Also, it's easy to feel like like you're at death's door because of certain c.diff horror stories, but my ID doctor assured me that a full recovery is expected, and that I don't need to worry. He said that as long I'm stable and hydrated, even a little D. won't hurt me. Which is why, if I get D. again, I'll wait it out for 3 days the best I can, unless as Roy said, the D. becomes relentless and all signs of health are going down hill.

Maybe this vacation is just what you need! I wish you all the best. It will get better; try not to get discouraged along the way and just take care of yourself and cut yourself some slack. Take care!
Brandy

[lunasdad]

Thanks Brandy. I appreciate the kind words. I am actually on vacation at the moment so have not posted in a few days. Today is my last day on Vanco and for the most part it has been ok. I am eating very blandly and trying my best to put my stomach out of my mind so I can be present with my family. My hope is that once I stop the Vanco my stomach can get back to a baseline and I can move on from this. I am taking probiotics and trying my best to eat well. Appreciate all the help and support from this site.

[brandine]

I'm glad you've been able to be on vacation with your family! I hope that recovery goes very well for you after the vanco. If it is rough for awhile, just remember that a lot of us struggle after treatment, but it does get better (though, as I've been reminded, it can take two years for the gut to heal completely--or almost completely). And consider, too, what roy said earlier in this post about how there can be left over spores that your body still has to deal with--don't be scared if you get occasional D. It can be a normal part of recovery. Take care, and thanks for the update. This stuff is no fun, right? We'll get through it!

[lunasdad]

Thanks for the thoughts. What is really so frustrating is that I have felt pretty good the past 3-4 days, this morning I have been sick to my stomach and have gone to bathroom multiple times. I’m anxious because I am leaving tomorrow for a cross country trip and hopefully it is just nerves. It is so difficult to do anything g with this on my mind as my fear is that this will hit me hard while I’m away. Going to take a lot of Imodium and pray it all works out.

[Bobbie]

Lunasdad,

This is characteristic of c diff. -- and IBS. One day good, two days bad. See the 3 day rule. Remember it is merely a yardstick.

Ask your doc about the use of Imodium. It used to be a no no. I would not overdo it. Some use Pepto instead.

You can do this!

[lunasdad]

Made it thru my trip with no problems. Felt sick last Friday at home but I think it was more jet lag than anything. Was feeling really positive that I was putting this in my rear view mirror, but around 2am this morning I woke up with pains in my stomach and had a very loose BM. Around 6am it happened again. I am very worried that this is coming back. I’m going to wait another few days but I am so over this. I know if I call my doctor he is going to tell me to take the Vanco long term taper and do a stool test. I really do not want to take meds again. Feel like I just can’t turn the corner on this.

[Bobbie]

As mentioned, your symptoms are characteristic of both c diff and IBS. Afraid all u can do now is WWW -watch, wait, and worry.

Thinking of you. Glad your trip went well. Cheers for you.

[Bobbie]

As mentioned, your symptoms are characteristic of both c diff and IBS. Afraid all u can do now is WWW -watch, wait, and worry.

Thinking of you. Glad your trip went well. Cheers for you.