Vanco taper, update

[Ali-Mar]

so sorry to hear that, hopefully is not a relapse, it sounds like a fissure or hemorrhoid. Hopefully the test will be negative. Make sure to get the Toxin test too

[Ali-Mar]

I am surprised your GI didn't prescribed Dificid when you relapsed after 2 weeks of Vanco? I am not an expert, still learning about C-Diff, and I hope it is not another relapse but if it is, maybe you can talk to your GI about Difcid since Vanco failed.

[poppy86]

I'll have to bring in my sample tomorrow because the lab is closed for the day. If the test comes back positive, I'll ask about dificid. The nurse I spoke to on the phone today mentioned FMT as a possible treatment option if the more conservative approaches don't work.

[jG43]

Hang in there. I too was kicking myself for taking the clindamycin that caused my cdiff. When I relapsed after taper, I was having similar fears that you are having. I was having some of the same issues you are going through. it can be pretty upsetting to have the symptoms you are experiencing. Cdiff is a major infection that causes toxins that can really create inflammation in your gut that just takes time to heal. It is so frustrating because it can be hard to tell if the bleeding and mucus is due to inflammation, internal hemorrhoids, fisures, or relapse, etc. The fear and stress on top of it just adds to it. But trying not worry is easier said than done. You are likely in the battle stage where your gut bacteria is trying to fight off the cdiff. You will get better. You have options. Many have had luck with Dificid tapers. I had to go the fmt route on my 3rd relapse and have been cdiff free for 1.5 years. I was scared of having to do an fmt but I had one via colonoscopy and it was pretty smooth. The prep was the worst part. I am 45 so my GI said a least you now I don’t have to have another colonoscopy for 8 to 10 years for colon cancer screening My colonoscopy showed I had inflammation and internal hemorrhoids which accounted for my bleeding. With the physical symptoms I was having like you I just knew that my colon was going to be in bad shape but my GI said it looked good with mild inflammation. I really think the 3x day rule can be very helpful. If you are not constantly running to the restroom your gut may be beating it on its own. My relapses were a pattern of just progressively getting worse and more frequent d that never relented. Even now and then I will have a fair amount of blood from the occasional internal hemorrhoids. The good news is you are doing everything you can by working with your doctor to heal. You will get rid of the cdiff. You and your doctor will find a treatment option that will work. I tested positive for cdiff in Nov 2 years ago and ended up doing a fmt in March of that year. After 4 months of failed treatment I thought I would never get better. But I did and you will too. Sending prayers your way

[poppy86]

Thank you for your post jG43, that was very helpful. I'm glad to hear you're doing better and the FMT was successful for you. This morning I brought in my sample, but it was mostly formed. So now I'm worried they won't be able to run the test :(. Of course, after that it was loose, watery D. So now I just have to wait and hope they can do the test. There's still a lot of blood and mucus. I feel nauseous and really run down.

[poppy86]

My sample was rejected, so the doctor ordered a new test, and I brought in another sample an hour ago. But I fear it's still too "formed". I don't understand, the sample looks the same as when I was first diagnosed at the end of March, and they tested the sample then. There is visible blood and mucus on the sample. I already went 7 times today, some totally loose, some more formed, some nothing but mucus.

If they keep rejecting my samples, I won't get treated, I'll just be sick and nothing will be taken care of. What am I supposed to do? Something is very wrong.

[poppy86]

I'm at such a loss right now :(. I feel like it was a miracle they tested my sample back in March, they could just as easily have rejected it then, and I wouldn't have gotten diagnosed in the first place. When I go to the bathroom I can never tell what's going to happen, whether it will be liquid, solid, or just mucus, which isn't enough for a sample anyway. And it's the weekend now, I need a lab order from the doctor again if my most recent one is rejected. I had watery D but never managed to collect it :(.

[roy]

If your Dr marks the order "please test formed stool" the lab will test it.
Any stool, including formed can be tested.
The guidline about not testing formed stool is there because regardless of the result a patient should not be treated if the stool is formed.
Drs MUST treat the symptoms not the test result!

[poppy86]

Thank you for your reply Roy. So I must bring in a watery sample in order to be treated? Even if I'm going 10+ times a day, that doesn't matter unless the sample itself is loose? I'll try to collect a watery one.

[poppy86]

I'll also mention, it smells exactly the same as when I was first diagnosed. I don't know if that's relevant or not though.

[beth22]

Can you bring it to another lab? Some labs don't care about the consistency.

[poppy86]

I'm really struggling. My husband has to go to the hospital for an MRI this morning, and I can't bring a sample before the lab closes at noon (we only have one car). I got more of a sample now, it's half semi-formed stool and half blood/mucus. I don't know if they'll accept it. I'm waiting for a call back from the gastroenterologist on call for the weekend. I'm thinking I will go to the ER later today. All morning I've been passing clumps of dark red bloody mucus, clots, tissue, I don't even know. I'm scared.

[poppy86]

The on-call gastroenterologist said the hospital is overrun with covid patients, and there's nothing they can do for me.

[poppy86]

He said to wait until Monday when I can talk to my regular gastroenterologist and then see what he recommends. In the meantime, I feel very very awful.

[poppy86]

The doctor I spoke to today said it's not c.diff if it's not watery D. But even when I tested positive back in March, I was alternating watery D with some more solid BMs. The main symptoms I had then were going 15-20 times a day, and passing a lot of blood and mucus.