Microbiome questions

Hey guys, I've been dealing with what I thought was a weird flare for the past several months. I switched GI docs and now see an awesome doc that is academic/research based. When I first met with him, he said my symptoms sounded like proctitis so he added canasa and zofran. I was not improving so last Friday he did a colonoscopy. My colon was abnormal with lots of mucous, edema and the tissue was friable. He said the UC looked pretty good with no ulcerations so his plan is to treat my microbiome with 14 days of vancomycin followed by a month of probiotics. Have any of you had this type of treatment and how long did it take to feel better? I've lost 25 lbs in the last 2 months and today was a very bad day with at least 15 bms. I called the office and he added immodium. Thanks in advance for any feedback.

Sounds interesting.They really don't know much about how to influence the Microbiome.It is too early to isolate the billions of microbes and manipulate them. As close as they have gotten are pre and probiotics and FMT. Even telling someone to take probiotics is like saying, "take some medicine", what helps one might not be what another body needs. That said, I've done stranger trials and if you feel well enough to get through it, great.
Sounds like your rectum is quite active with the urgency you have, can you stay on rectal meds while doing this trial? The Zofran is for nausea, but how does it help your UC?

Did they do a stool sample for C-Diff? I like the research angle. Obviously the regular angle isn't so great so it's nice to see someone with outside the box ideas, although antibiotics would scare me. It's like going to Vegas and rolling the dice. Sometimes you win. Sometimes you lose.

Ask him if you can just go without antibiotics.

It has been shown repeatedly that antibiotics make things worse.

this is exactly what probiotics and FMT does, only more strategic. You are already on all of the standard meds - so it is not like he wants to treat only with probiotics. there is also a history of triple-antibiotic therapy having some success for some people.

this sounds reasonable.

Last year I had suspected C diff that never showed on samples but a course of flagyl, followed by VSL#3 did get me into remission for a while but then flared after a few months.

Do be very careful with immodium, if your colon is damaged to the extent that you have friable tissue, immodium is risky.

While his theories are perfect on paper, it doesn't turn out the way we expect in reality. There are trillions of bugs in your gut and all your can supplement is few billions. Vancomycin will kit almost all of the bugs, and those who survive will be resistant bugs. So there is actually more chance that it will cause more harm than good. If he really wants to repopulate your gut with good bugs, then there is no better option that FMT.

you can probably achieve what he wants to achieve by use of herbal antibiotics as well. From Gary's idea, I started using Grapeseed powder. I added Neem powder to the mix. You can add Berberine as well. This mixture will certainly modulate your flora. How, that you won't know unless you sequence your flora or do a test like CDSA. I have been using the above mixture for 2 years and I will be sending my sample in a week to see how it has changed my flora.

Consider including Sauerkraut (Bubbies brand if you don't make it at home) or kefir in your daily diet. They are a good source of probiotics.

Answer to the Immodium question is that it can cause Toxic Megacolon if there is existing infection. It is benign for most in small doses.
I would use the most varied/ expensive probiotics I could get my hands on, and lots of them. This is uncharted territory. The only data we have from the FMT studies shows how much we still don't know. Some microbe colonies are smaller in IBD patients, some strains are missing, most haven't been identified. Worth a shot, keep us informed.

Tunnel, I don't mind. I'm pretty new to the forum. Am I allowed to post his name or do I need to email you?

Others have posted doc names, many times.

Thanks guys for clarifying the rules. My GI doc is Miguel Regueiro from the University of Pittsburgh Medical Center.

Ari, I certainly will. As for now, I am in the hospital for fluids. I've had progressing diarrhea since Monday along with nausea so was having a real problem keeping myself hydrated. Christmas Eve into Christmas Day was rough with severe cramping and diarrhea in the middle of the night so I went to the ER for fluids, zofran and dilaudid then back home and paged the GI fellow. He offered me prednisone taper with the understanding that it might not work. My other issue is IV access. My IV is in my shoulder and I'm going to discuss getting a port since I'm on remicade. That's where I'm at right now and I'll let you all know how the vanco/probiotic plan works. I really appreciate this community of IBDers. I've learned so much in the short time I've been here.