Feeling lost - c diff and FT questions....

Hi everyone,

I'm completely new to this and am very grateful for this forum. A couple of thoughts / questions.

My son was diagnosed with UC last year. After a few months of remission he ended up in a flare - started right after he had a cold - coincidence? - i have no idea. Then after some testing, it turned out he had a c-diff infection. Went thru flagly (which was hell) and then Vancomycn (which worked). Once the c-diff symptoms were gone (cramping, tenesmus), we then added Rowasa nightly to get the bleeding under control. Things were really looking normal (or at least our new definition of normal - hardly any blood and maybe 3 BMs in a day).

Then we went on vacation - I didn't bring the Rowasa (stupid stupid stupid) and he started flaring again (urgency, frequency, cramping). And it turns out the c-diff is back - is this related to not doing the Rowasa for six days??? - is it just a coincidence??? is it the change of environment??? Any one know? His dr was not able to give a clear answer.

He is back on the Vanco again - its day 7 (of 14 day course) and hardly any improvement - seems to have worked better last time. Anyone have experience with this - that the second round of Vanco takes longer??

My bigger concern / question is this.... What happens next? If you are more and more likely to get c-diff once you've had it - what's next? At what point do doctors say - enough of the antibiotics and its time for Fecal Transplant???? How many rounds of c-diff before you try the FT? Or does the decision have nothing to do with number of incidents?? Or is FT not the next option?

Sorry for the 20 questions - i'm really just feeling lost and helpless. He has an appt with the GI tomorrow - I would like to go in more prepared with info.

Thanks for your input....

Hi ,

Sorry to hear about your Son..

We had a similar experience with our UC daughter2-3 yrs bck...From experience,I strongly support FT after the vanco course....

As we were so upset and scared about her UC diagnosis and few months later C.diff infection, we decided to go with Fecal Transplant.Her GI was so understanding and passively suppotred our decision.So after the first course of Vanco,even though her symptoms were all gone, We did 5 home fecal transplant using her 12yr old brother as donor.

I would say c.diff was a blessing in disguise.... those FT's brought her stools back to pre-UC days.

So far no symptoms and well fromed stools.

She was out from all UC meds for 4 months after FT.(Was strictly following SCD diet too)

 Right now as a precaution, she is taking 4 lialda... 

Best wishes...

FMT is basically the panacea for many gastrointestinal illnesses. I don't know of anyone that didn't respond to it for c. diff. Studies show almost 100% efficacy for it. The consequences of antibiotics cannot be predicted down the road and it never "fixes" c. diff, because it ends up reoccuring 1/3 times if we're going by the studies.

FMT is also a promising UC "cure" now, but let's wait for better trials on it first. I think it has a strong chance of curing your sons UC, if the donor is correct.

Hi rb, loved one has 4 years of this but now 80 percent reduction..concluded its in the food we eat..all foods today riddled with chemicals to long life it very poor quality and acidic...human gut system likes alkaline easy going soft gentle can process out vast quantities of bugs germs parasites etc but balance in system destroyed by chemicals irradiated food gm modification and a thousand other processes. omega 3s 6s and 12s ratio destroyed gut system in crisis immune system overactive acid foods ..no balance at all bad bugs get in and push out all good bugs in system with disasterous results...so try this only eat good quality food no take away or rubbish foods all well prepared food only get ifo by looking at hundreds of uc experience on net to see what they eat food fruit and meds..we did..get plenty of sun for yitamin d eat fruit that suits you and heaps of exercise...you must do what the bug does not like you to do the bug likes chaos and disharmony so eat simply correctly and happily only good foods, the bug likes immobility down and out flatlined person mopeing abut ...so go out into the sun and exercise gently and slowly more and more always enjoy life stlye and results will come...we did and it works..get on web type in cures for uc but watch for the scams every uc person different so some works for one and not the other..never go back to crap food..good food clean living and healthy exercise the bug hates it you must reverse the process that may cause uc..took 4 years to learn this for us and now happy as....

I had c.diff for weeks. It was TERRIBLE.
14 days of Vanco didn't help, but the second 14 days of double dose Vanco fixed me up!

And I was taking Culturelle (like 4 a day) and S. Boulardi. (1-2... 2 sorta upset my guts.)

And eating/drinking probiotics. lots of water.

C DIFF IS HELL... good luck.

Thanks so much everyone for your feedback. Its great to have access to so much insight. Thanks for guidance on FTs. I think its time to push the subject more with our doctor - and if not - figure out how we can do this at home. I guess I'm just scared about doing more harm than good - if that makes any sense.

Pluot: I'm definitely going to ask the doctor about fidaxomicin today. Thank you. Good to know there are more options available. I'd hate to put him on yet another antibiotic but his symptoms are still there. Another day of vancomycn done and really not much improvement still. Oh - and he's been on Florastor since the fist battle with c-diff. He takes it twice a day. I haven't added any other probiotics yet but think we really should. I'm going to ask the dr about Culturelle and VSL. Any thoughts anyone?

Bloom93: Thank you for your reply. Such amazing results for your daughter! I have a couple of questions: I'm assuming you did the FT at home w/o a doctor? did you have you son tested (blood work/stool tests) at a lab to make sure he was ok to be the donor? You did a total of 5 FTs over 5 straight days? How long has she been symptom free? I'm sorry so many questions - I feel like our doctor always blows us off when we bring up FTs as an option - very frustrating. Her response has been "he's not anywhere near ready for us to resort to FTs"!! And all i can think is - why do i need for him to suffer more before we try something that seems fairly harmless!

Sharron19: Thank you for starting your FT thread - makes a lot of sense to have the info in one place - I've been keeping up with it. I wish you all the luck in the world - and couldn't agree more - would rather do FTs than have to take more and more medicine.

Embersglow1: I'm happy to hear the second round of vanco worked - how did you figure out how many Culturelle to take? Four sounds like a lot!! wow He's young - only 80lbs- so was thinking of starting with one pill?

Linc497: You're right - the diet changes are very hard but important. My son is young and likes to eat all the junk other kids like and its hard to make the point as to why he can't / shouldn't eat that way. Or why he should eat fish and pickles and kefir. All of this hard for adults - its worse for kids - makes me so sad.

rb...sorry look what I really think happens with uc is that when a brilliant gut system like humans have is corrupted the bugs get in... prior to uc the gut is wonderful at processing out millions of bacteria germs parasites and the nasties that come down the throat but a costant barrage of all that is wrong in our food chain slowly corrupts this wonderfully alkaline system...and I think that is always the point ...humans are alkaline but the systems get severely pumbled with acidic chemical foods...the system fails...the immune system flails about desperately crying out for help...the body says ..what thec hell are you doing out there... I m really hurting so give me the food that helps me and please no no acid foods anymore...we looked at uc this way and 80 percent reduction later we are gingerl but determinedly going after the bug...

FecalTransplantForUC said...
Definitely go with the fecal transplants instead of wasting time with other treatments where even if they work temporarily they don't offer a permanent cure. Unfortunately the elderly father of a good friend of mine died during the 5th round of Vancomycin after his doctor refused to do it, and he refused my friend's attempt to take him to another doctor who would.

All of the studies for fecal transplants to treat c. diff show that it works almost every time and works permanently. With a healthy donor this is a very safe and effective treatment with lasting results.

Welcome back, Michael! Thought you left us for good. I think Sharron had some questions for you in her FMT thread here. She has watched your videos and is attempting to try it, but needs help trouble shooting.

5 rounds of vanco is beyond insane and the doctor probably did him in. You would think that the first would be good enough, but there's a 1 in 3 chance of recurrence in patients using it, going by the studies alone.

Hey man.

Yes, I think you are correct according to what the data says on it. I believe we all have concentrations of c. diff, as they are kept check by the beneficial flora, assuming the individual is healthy in the first place. These flora of course turn pathogenic when someone is immune compromised (or when one is taking biologics or immunosuppressants), increasing the risk of developing it. My doc actually wanted to check for it after some misguided antibiotic courses. I learned that is when people are most likely to develop the complications, as the bacterial balance gets out of wack right then.

As for babies, one study showed about 44% of babies teeming with high c. diff populations, but they are able to control it effectively enough to not cause issues. Guess that's the colostrum hyper-immunity for ya if you can get your hands on it. It only becomes problematic when they are given antibiotics (or when the mother is given antibiotics), and then it extends into the breast milk. The concentration of it goes down as the baby is flooded with more bacteria via breast-milk, kefir, ferments, etc.