FMT, rebiotix punch cd2, or 6 week vanco taper

[JeannieR]

So these are my choices since I officially have been diagnosed with a relapse yet again! This is the third one. Ugh I am so over this cdiff! So it's the weekend, I handed in my sample last night. And today I found out it's positive. I was leaning twards doing the punch cd2. Well since it's Saturday and the on call doc said he would call in vanco for me. He said that he is not sure but he said that he believes that if I start the vanco that I would not be able to do the punch cd2 since it is a trial. So yesterday I had D 6 times that is when I handed in my test. I have had D only twice today and that was this morning. So my question is (and I know you can't give medical advice) if it were you would you wait until Monday to do the punch cd2 if you were just having me symptoms? I have no other symptoms: no pain, no blood, maybe slight gas. I'm tired. That's it. Not even a fever. I'm trying to decide if it's too risky for me to wait until Monday for the punch cd2 with these vey mild symptoms? I just don't want the bacteria to grow and multiply and make my situation worse. I just wanna avoid any antibiotics if possible.

[Lisa33]

Jeannie - I'm so sorry that you relapsed yet again. This just stinks. The on call doctor should be giving you direction on what you should do. I'm sorry, but I really don't know how to answer or advise on this. I am not familiar with the punch cd2 trial.

Sorry you got another positive test.
Lisa

[JeannieR]

Lisa- he told me I should be fine to wait since my symptoms are not bad. He said unless my fever spikes and I have blood then I should be ok to wait. I just wanted to see what you all thought was reasonable... Do the bacteria and spores multiply that fast? This all stinks.

[Misscshell24]

Is the study the one with the triple blind enemas? If so, I had a very similar decision to make as you on my final relapse. I agree that this is something you should discuss with your doctor as only you and your doctor know your full medical history and situation and what is best for you.

My personal experience was I did a taper, and if that failed, I would've done the FMT. I had the option to do the enema study, but that involved 4 Drs visits at a 2 hour drive each way, with a 1 in 3 chance that I'd be given the "good" stuff. If it failed and I was given the placebo, I'd automatically get the good stuff, but would include an additional 4 visits, for a total of 8 over a four month period. At that point I'd already been sick for over a year and c diff for 6 months, so I decided against the study, if it came to that. Luckily, the taper worked for me. I'm all for helping in the study, but I was so ill, I couldn't gamble with my health.

If I were in that situation again (*knock on wood, I won't be*), I'd go for the FMT as soon as I am able to or do the SER109 study that they're currently enrolling for.

Sorry you're in this situation again. Hope you find what works best for you and it does the trick. Good luck and let us know what you decide. Also, I believe all of your options would require you be on vanco (or possibly dificid) for at least a couple weeks, so I'm assuming your doc wants you to start treatment regardless of what option you decide.

[sevla]

Hi Jeannie, I am so sorry it's back. This really stinks..
As for thr treatment decision, only you and your doctor can decide, but understand that it is not easy to make a decision.
In my last relapse I also had mild symptoms. I didn't have watery D, but many bowel movements a day (softer), gurgeling and my typical cdiff smell and stool colour. I started relapsing on a Thursday and waiting until Monday to get the sample results and start Dificid. The infection did not get worse over the weekend fortuntely. I think you should be fine to wait until tomorrow and hope that today you ae feeling better.

When I relapsed the last time I wanted to do Dificid taper, but my GI said let's do fmt and get rid of it once and for all. Because of several circumstances along the way (donors not being given the green light for example) my fmt kept being pospotned and now I am on day 48 of Dificid. So ending up doing a long not planned course, but will still do fmt next week. I hope that these two things will get rid of the beast. It's exhausting to go months with this infection.

I hope that whatever decision you make, that it is the best for you and that you get rid of it! Good luck and hope you are feeling better!

[JeannieR]

Michelle, I'm in the same boat as far as the distance to my GI doc. Two hours there, two hours back. That part is very unaapealing for sure. I am all for fmt's and I struggle with choosing the FMT over the trial, part of me says just get it over with with the FMT, but fear sets in and I decide to do the trial, bc that is one extra option for me. If I would do the FMT first and it wouldn't work I would not be able to do the punch cd2. But if I do the punch cd2 first and it fails I can do the FMT. So just an extra option.

Sevia, I wish you luck on your FMT next week! Isn't it exciting to know this more than likely will be it?!
Are they doing it endoscopy or colonscopy?

Oh and this morning I had a solid stool!!! Does that ever happen when you're relapsing? Maybe the d was just ibs?!?! Could they be?

[NikaNik]

Hi, Jeannie! Such a tricky decision especially with the solid stool today. While we can't give medical advice I can say I might go for the punch cd2 or the FMT anyway in the hopes of really giving that good flora a boost. I hope no matter what decision you make that it's the end of the road for c diff and you get to feeling better and better! Blessings to you! Nikki

[sevla]

Yay for the solid stool today!! Most likely it was PI-IBS! Fingers crossed that you feel better each day.
In my case they will do the fmt through colonoscopy. The thing that is really making me nervous is the prep! I wish I could skip that step all together!

[beth22]

You can test positive for a while. After my FMT, I would test positive sometimes and only took Pepto and then it would go to negative, etc. I am not familiar with the punch cd3 either. I know a lot of doctors are involved with the rebiotix trial. As far as I know it is free and you can't qualify for it if you have had FMT, which I have. I looked into it before. You might consider that first since if you have an FMT you will not qualify. Talk to your doctor and see what he/she thinks.

[JeannieR]

Sevia~ I am so happy for you that you get to have your FMT soon! This will all soon be over!!! Keep us updated please!

Beth~ Yes, that is why I am going to go for the punch CD2 so its an extra option for me!

I just pooped for the first time today.It is solid, but smells bad of cdiff and there was a tinge of blood.

I spoke to the doctor today that would be doing my enema, she said that I need to come in on Wednesday to go over all of the paperwork, and get a cbc done. She then said it would take a few days after that so probably Friday I would get the enema. She said the morning of I have to give a stool sample. What if I cant poop? lol for real! She said She has to get a ton of labwork done on me that morning too! SO this I am freaking out about. I have had some off labs and the hematologist has been rechecking them, he says that it looks like I have some auto immune issue going on, although I have no symptoms at all. This has been going on for a few years. positive Epstein barr, Positive RA factor, IGM antibodies are barley elevated, and my WBC is always low, like just below the normal low, but it pops up there above the low normal sometimes. Its been like hat for years. And when I got my labs done this last time, I had cdiff but not diagnosed yet...and my iron level was low and my RAfactor went up (due to inflammation) and my crp was elevated, never before was it ever elevated or have I had low iron, so I can almost bet it was cdiff related. I have no other symptoms...so after explaining all of this, I am a little concerned they wont do the trial on me if I have some "off" labs. Other than that I am a super healthy woman. I am not taking any medications at all. Just a vitamin. I have a diagnoses of Gilberts syndrome where it is a begnin syndrome that your bilirubin goes up and down for no reason, its nothing to be concerned about. SO with all of that said, does anyone know if that would disqualify me? Also, had to start the vanco, even though I had solid stools, the doc said I Have to take it. I held off, but after the little bit of blood I took my first vacno ;(

[beth22]

I would look up the information about the trials online and see what the criteria is. I did so for the Rebiotix and it listed a lot of stuff. I also have low white blood count and I have an auto-immune disorder (Hashimoto's thyroiditis). It got worse with the c diff. Because the c diff causes malabsorption, a lot of people get low on either vitamins or minerals. Low iron is pretty common. I was low on vitamins D, A and B12. Others have had similar things. Maybe they just want to get a baseline and then test you after to compare.

[JeannieR]

I spoke to the doc and she said that they do a CBC Wednesday when I go in to do the paper work. I told her about my low WBC and she said that as long as my neutrophils aren't low the. I should be fine. In which I believe l of the neutrophils, easonophils and all those are all normal it's just the over all WBC count that is low for me. Atleast that is what I remember and I think if I have low neutrophils I would have been on treatment! But of course good old anxiety sets in and I am panicking that what if I can't do the trial bc of low WBC? What if l of a sudden my neutrophils drop?! I feel like I am doomed!
Cdiff sucks and anxiety sucks and it's magnified by a million with cdiff.

[JeannieR]

So I have not heard back from my GI specialist and she said that if I don't hear from her by Friday last week to assume everything is a "go" for the punch cd2. This is a series of 2 poop enemas, one given this Wednesday 9/2 and then on Friday 9/11. The trial is still in phase 2 which means that I do have a chance that I may get a placebo, which makes me a bit nervous. But, in the case that I do get a placebo and/or I relapse I do get to have the real thing after I submit a stool sample and it comes back positive. There are 3 groups for the trial
Group A-- 2 real poop enemas
Group B-- 1 real poop & 1 Placebo
Group C-- 2 placebos
Nobody knows what group I am in not even the doctors, just the people at Rebiotix know. I can pull out of the study at any point I wish. I am excited and hopeful that this will all go smoothly and I will be done with cdiff for good, as it does have a 90% cure rate so far with minimal side effects of bloating and gas. I am also happy and thankful that I have an oppourtunity to be a part of a study that could potentially save lives. However, I am very afraid at the same time. I chose this route because it gives me an extra option for treatment. If I would have gone straight for the FMT, and if it would fail, I would not be eligible for this study. I am also not wanting to put anymore antibiotics in this body of mine. Ive had 8 since March (cdiff and non cdiff related). I have gotten cold feet and almost decided to pull out of the study....my hubby said he thinks I should give it a go bc he has a good feeling about it. I hope he is right. He is ususally right about things, so I am hopeful that he is right. I have been praying to God that this is it for me.

[NanciT]

Wishing you the BEST with this study Please let us know how it goes!
Hope you are feeling better soon!

[Lisa33]

Jeannie - Wishing you the best of luck with the study. I know it's scary, but this could really be the final cure for you! It's worth it, especially since it's not more meds! Let us know how you do.

Lisa