Fecal Transplant - I took the plunge! PART V

OK everyone- pop quiz- who's the better donor-

my 6-year-old daughter, breast-fed for 1 year then slow transition to cow's milk
my 2 1/2 year-old son, breast-fed for 2 months then transition to formula, then cow's milk at I think 6 months or so

Both have been on antibiotics for about 2-3x a year, mostly ear infections, and mostly lesser-strength abx. Daughter got abx for the first time around the time she turned 3; my son started around the time he was 18 months. So- possibly stronger gut immune system in my daughter, but less overall abx exposure in my son.

Also, what's an optimum time time to wait after they'e finished their most recent round of abx?

Thinking about taking the plunge :)

Thanks all!

Thanks for the feedback! Yes, I feel safe using either, I know their histories, and, if there is a gross-out factor, it will be minimized since I'm intimately familiar with their poop having changed their diapers since they were born :)

What specific test would I have done... are you talking about diseases, or something specific to their stool content?

Hello,

I'm writing on behalf of my 6yr old son Jack. He was diagnosed with severe UC about 15 months ago. He also picked up cdiff along the way and hasn't been able to kick it (9 relapses). Currently on Remicade for UC and a host of anti-biotics in preparation for a FT next week. He has missed 150 days of school during this time and has developed anxiety, attention deficit, and depression symptoms as well. Normally, he is extremely outgoing and happy.

He is having the spray colonoscopy FT, followed by the home protocol of enemas for a week. We hope and pray this will finally put his UC into remission and kick the cdiff infection.

So far, our observations and beliefs are that there is a definite gut/brain connection. We also believe gut flora is the key focal point with his disease. We're also pretty certain all this started when he ingested some contaminated lake water (later posted)...within a week, symptoms started.

I do feel an environmental trigger kicks off this auto-immune disease. Then, the cycle of meds begins trying to suppress the symptoms or remove them via surgery. FT sounds like the only option out there that COULD cure this disease???

Anyway, just wanted to let you all know that we are 4 days away from starting the FT, we'll keep you posted.

Thanks for all the information, Troy (father of Jack)

Jack has been in the Children's Hospital of Wisconsin (US) network, but they wouldn't do the FT because of the "red tape" from Infectious Disease. That said, Jack's Children's GI referred us to a Doctor in the state (WI) who just started doing FT's this past year. So far he is 100%, but hasn't done any kids yet.

We first reached out to a Doc in Duluth MN, but they turned us down because of a poor track record with kids??? He was 90% with adults and only 33% with kids (1 0f 3). Because of this, he was not willing to do another child. One important note: He used NG tube protocol only, so maybe this had something to do with it?

Thanks for the response, Troy

Troy I'm very curious to hear which WI GI is doing FT! I live in Wisconsin and I'm definitely interested in trying FT myself especially since my latest medication doesn't seem to be doing its job!

Thanks,
Melissa

Hey guys,

I've updated my profile to include my email. I don't think the forum rules allow posting doctor names? I'd be more than happy to share the doctor's names that I know if you email me. The one we are using is in Milwaukee WI, but I've spoken to one in MN and NY as well.

Otherwise, I recommend searching the web using terms: fecal transplant trials, or fecal transplant doctors, etc. I also found several FT trials in the recruitment phase...this would be a great opportunity for some of you. Their criteria is specific, so read the rules.

I do want to note that there is one doctor in particular from NY that took the time to email me on a couple of occasions with his belief in FT for cdiff and uc. At this point he recommends the home process of FT enemas for uc as a viable maintenance option. He is also leading the charge with an upcoming uc FT trial and starting to recruit. Add NY to your search terms and you should find him. These studies/trials are what is obviously needed to get things mainstream.

Troy

Two days away for Jack...my wifes starts "collection" today. Jack's colon prep is tomorrow and FT on Wednesday!

By the way:  Does anyone know if having Remicade or other biologics in your system affects the FT?  

Thanks, Troy 

Post Edited (trojen) : 10/24/2011 5:18:24 AM (GMT-6)

So far so good. I almost hesitate to say anything in fear of jinxing us. Jack had a semi-formed, no blood, no pain. stool today. He was very hungry and feeling pretty good the first night. Next day, he felt great, ate like a horse, and had the bm described above. We will follow up with daily FT enemas for a week. It is important to note that colonization is the key for long term relief. I believe in some cases, colonization does NOT take place and FT only works as maintenance. Only time will tell for sure...

Another note: For those of you considering FT, I have an opinion that may help you decide if your a good candidate: Not everyone with GI issues has a gut flora inbalance. However, if you do, probiotics will provide some relief at some point. If this is the case, then FT would be a viable option being the best probiotic available.

I'll try to post updates on Jack as we move forward. Troy

What I don't understand if so many people with UC want this and many are doing it blindly on our own, then why are there not more doctors or studies doing it for thier patients? There must be a way to rally support from us UC people to get the doctors to help us with this. I for one got a evil stare from my GI yesterday when I asked him about anyone here in NY doing it and was told my son would not even be a candiate cause his UC is too mild. What difference does that make? That is as far as I got. But it was ok to mention Remicade as an option. So is it money? Today I am really pissed.........

I hope Jack makes a full recovery as with everyone else on this site.

CGK- So glad you still come around the forum.  Glad to see you are off all steroids!

Very interesting thread about ft.

B

Hi cureuctogether...I am also in NZ (Welly) .....I am currently having Remicade infusions but it is lookng like surgery is next on the list ...meeting with specialist in Dec to discuss. Who is your specialist ....I didn't know there was someone so close doing this procedure .....

Jack is still doing well.  He has had a huge appetite and is having formed stools.  The FT has obviously helped him with immediate results.  We are so grateful, but will be on pins and needles for months I'm sure.  We have 4 more home enemas to complete.  Stopping those will be the real test to determine if his new gut flora takes hold and colonizes on its own without ongoing enemas.  We are hopeful. 

I want to reiterate that Jack has had a severe cdiff infection.  He is currently diagnosed with UC, but that has changed several times as his 3 scopes haven't looked the same.  We've gone from indeterminite, to likely crohns, to uc, to ?  Bottom line is his colon has been severly damaged over the past year.  He has been hospitalized for weeks from dibilitating symptoms.  He has been on every med combo you could imagine (currently remicade).  We've been with Children's Hospital this whole time thinking that was the best place for him.  They have exhausted their efforts and said it is time to talk surgery.  This is why WE decided to try the FT first.       

Point being, doctors are one major resource for us, but not the only one.  They are highly educated (and paid) experts with traditional medicine and surgery.  However, most know very little or give much merit, to non-traditional,  alternative, natural practices.  I've learned that you will need to combine both ways of thinking for optimal results.             

Thanks to all of you for your kind words and prayers.     

Post Edited (trojen) : 10/30/2011 5:50:33 AM (GMT-6)

GidHike said...
For those that did it at home: any tips on how to mix the poop well enough to not clog the enema bottle? Last time I tried it kept clogging up... it was nasty.

Are you taking the stopper thing out of the enema bottle cap? It's that cardboard type thing inside the cap that doesn't allow air back in when squeezed. I had to remove that, otherwise the mixture wouldn't go through.

If you're already removing it then you likely aren't getting it mixed well enough. Or maybe it's not liquid enough? If it's too thick you'll have trouble getting it through too.

I used a portable blender. It was a pain to clean but it worked really well.