HealingWell
Search Close Search
☰

the low down on FT at Jackson Siegelbaum Gastro.

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/3/2012 10:39 PM (GMT 0)
Hi bananagirl,

I just wanted to say if your FT works out like my first one you are going to be so so happy!!!

No D for me!

For the first time ever I have had a formed bowel motion that looked completely normal like a sausage!

and floated on the surface, I obviously have new bacteria!

OMG it was amazing and came out all in one go (never done that before LOL) and effortlessly and I only have been once.

I was so impressed I wanted to take a photo to hang on the wall LOL

Can't wait to hear when you start your FT
Posted 4/3/2012 11:13 PM (GMT 0)
johnscott.

I am so happy for you.

For the first time ever I have had a formed bowel motion that looked completely normal like a sausage! OMG it was amazing and came out all in one go (never done that before LOL) and effortlessly and I only have been once.

Ah the little things non-UC people take for granted, haha....

Posted 4/4/2012 12:58 AM (GMT 0)
HAHAHA

Thanks Insofar

I know I am so Happy about it.

I have become used to experiencing the Placebo effect, so I take it all with a grain of salt
but no Placebo has ever given me a formed BM.

However I still have to hold on most of the day as the FT gives a sense of urgency to me every now and again, it passes quite quickly though if I lay down for a while, nothing like the stabbing pain and cramping that I normally experience if I try to hold on.

I hope my first experience gives bananagirl some hope!
Posted 4/4/2012 1:10 AM (GMT 0)
johnscott, that's so great! i'm hoping it works out like that for me.

it's been a weird change of plans at the moment. i got a call from my current GI office tonight. i had told them that i was planning on going to harrisburg for FT since they wouldn't do it at my hospital. well, the one doctor has petitioned the hospital to allow him to do FT on me. i am so shocked and it would be way easier than going to harrisburg. he also said he would use my mom as a donor and do all the tests for her. he said they would give him an answer in a week. in the mean time, harrisburg got my records and they are reviewing them to see if im a good candidate.
Posted 4/4/2012 1:52 AM (GMT 0)
Oh that is great news!!! Sounds like a very promising change of plans!

It might happen quicker than you expect now!
It is not much different for the GI doing a colonosopy and he would have his nurse doing the "dirty work" so i don't see why it wouldn't happen soon!

It would be far less stress for you too, which I am sure will help the implantation as you would be more relaxed at home instead of in a strange place and having your GI do the procedure.
Things are looking up!

about actually doing the FT's at home, what are your views and maybe others about blending the stool?

I was reading that 60% - 70% of stool is bacteria, so the other 30-40% solids, Surely that part of the stool is not good and with having food allergies could it actually be detrimental to blend the stool?

Plus the bacteria are also anaerobic and I was watching a show on submarines and when blades go through water they create bubbles of oxygen and hydrogen. So I am thinking it could kill some of the bacteria.

I'm sieving and filtering because I worry about food allergies as my donor eats fruit and vegies which I can not eat.

All the best I am glad that your getting the help you asked for!
Posted 4/4/2012 2:18 AM (GMT 0)
Joanna, Good luck to you..Please keep us posted on your progress..I mean success:).

Johnscott, My husband puts his stool in a ziploc with saline and just smashes and smashes...he then funnels it into an enema bottle for me. He eats lots of fruit and fiber as well. I don't tolerate the citrus in fruit very well but I am not allergic. It hasn't however bothered me.

He has not had to use a blender as the smashing has worked well.
He's got it down to a science and doesn't make a mess at all.

Donna

Posted 4/4/2012 2:24 AM (GMT 0)
johnscott, i'm really hoping i can do it at the hospital in my town. it would be so much easier and we wouldnt have to stay in a hotel for a week.

i plan on doing blended stool implants at home and my mom and i have totally different diets. i have been a vegetarian for about 6 years and she eats a lot of junk food and animal products. she said she'd eat more fiber for me though. my nutrionist said i should try to find another vegetarian for the procedure due to the fact that animal products cause a lot of bad gut bacteria (her words, not mine). honestly though, i'm the one that's sick so animal products can't have a lot to do with my case. i'm just happy to have ANY donor. about the sieving though, i am just gonna follow the borody protocol and he doesn't mention that it's necessary.
Posted 4/4/2012 6:48 AM (GMT 0)
@bananagirl; I wouldn't take that nutritionist advice too serious (as it dosen't sound like you are). This notion of bad gut bacteria is widely misused and I have never read any serious evidence about "bad" bacteria coming from eating animal products.
Posted 4/4/2012 11:49 AM (GMT 0)
We use the ziploc method of "mixing" as well....no blender.

As far as food allergies go, I'm not sure if that would transfer via FT? Our pediatrician didn't think so, but I haven't got feedback from a GI yet. Any thoughts?

Great news Bananagirl.
Posted 4/4/2012 3:13 PM (GMT 0)
I have done 13 FT's and have been feeling good for almost a month. I saw mucos today and tummy feels a little strange. I haven't done an FT since Sunday. I am very nervous...
Posted 4/4/2012 5:13 PM (GMT 0)
That’s great that you’ve been feeling good. The healing process takes a very long time. You will likely still see symptoms for months after starting FTs.
The other thing is in my opinion you have to do FTs daily for at least a month. If it is a bacteria causing your UC you need to do FT daily for a long time to make sure you get rid of it otherwise it may come back and cause the same problems.
I would suggest going back to daily FTs for a while longer.
Posted 4/4/2012 5:16 PM (GMT 0)
Bananagirl,

I'm actually scheduled to get an FT done at JacksonGI on April 27th. My donor is my moms friends son whose around the same age I am. I was under the impression I was only getting one colonoscopy. Is the 4 scopes something you requested? They told me I don't have to go on antibiotics. And after the procedure they're going to have me take immodium so I can hold the new bacteria in for at least 6 hours.
Posted 4/4/2012 5:19 PM (GMT 0)
Bananagirl,

If it makes you feel any better about the commute. I'm flying up from NC. Although my parents live in Lancaster - which is about 30 min away.
Posted 4/4/2012 5:28 PM (GMT 0)

this does not seem quite right

Edbar said...
That’s great that you’ve been feeling good. The healing process takes a very long time. You will likely still see symptoms for months after starting FTs.
The other thing is in my opinion you have to do FTs daily for at least a month. If it is a bacteria causing your UC you need to do FT daily for a long time to make sure you get rid of it otherwise it may come back and cause the same problems.
I would suggest going back to daily FTs for a while longer.

The single bad bacteria that needs to be eradicated is the model for how FT cures c-diff. With UC it is thought to be an imbalance of the bad/good bacteria, or a deficient level of good bacteria, or both. It is not a matter of daily FT to make sure the bad bacteria is killed, but rather of having the proper balance/constitution of gut flora for a sufficient period of time that the immune system quits freaking out.

We should be careful about how we describe how this stuff is supposed to work, for whom, and why it might take multiple applications.

Posted 4/4/2012 5:29 PM (GMT 0)

tcf5010 said...
Bananagirl,

I'm actually scheduled to get an FT done at JacksonGI on April 27th. My donor is my moms friends son whose around the same age I am. I was under the impression I was only getting one colonoscopy. Is the 4 scopes something you requested? They told me I don't have to go on antibiotics. And after the procedure they're going to have me take immodium so I can hold the new bacteria in for at least 6 hours.

I thnk the confusion is that the 3 flex-sigs are being counted as scopings. When they are done for diagnostic/visualizing purposes they generally have a prep similar to colonscopy. It is an interesting question if when done only to deposit FT, the prep can be skipped.

Posted 4/4/2012 5:30 PM (GMT 0)

killcolitis said...
Also, how many UCers have they treated and what's their success rate?

I'm not sure if anyone answered this. But they told me that they have treated (1)C-diff patient and (1)UC patient so far. They said I would be the 3rd. They also said it was too early to tell if the FT had been beneficial to those patients.
Posted 4/4/2012 6:11 PM (GMT 0)
tcf5010, the nurse told me the protocol was 1 colonoscopy on monday and 3 flex sigs on wed, thurs, and fri. i don't know the exact prep procedure for the 3 flex sigs yet. i've heard you should do a high fiber diet when you start the protocol but i don't know what this certain office does. i wonder why you only have to get 1 colonoscopy done. i'd prefer to do that because the cost of having 4 scopes in a week would be hell for me. i plan on doing more transplants at home until i am better.

the gastro from my office who called me last night said i would be the first person to do FT at the hospital if they allow him to do it. it would be cool to be on the news or something haha no hospital in my town does it so i'd love to be the test person!
Posted 4/4/2012 6:21 PM (GMT 0)
Joanna,

Yeah that would be dope. I was told that the first patient (C-diff) that had it done at JacksonGI - came to her doctor and requested that they do it for her. So yeah, she was in the same boat you are.
Posted 4/4/2012 6:59 PM (GMT 0)
And also - which doctor are you seeing for it?
Posted 4/4/2012 7:39 PM (GMT 0)
todd, my nurse is nancy and the doctor is dr. mod. i am still waiting to hear back from them. they have my records but nancy said she only deals with FT stuff on fridays.

if my doctor at my gi office gets the okay, i will definitely do it there though. i'm sure wherever i go will be great! also, i have finished up on my course of antibiotics so im not sure if i'll have to do another one or not before i get the FT done. i only started them because i heard doing antibiotics beforehand helps kill off the bad bacteria.

i really hope it works for you, todd. you will have to let us all know! are you planning on doing more at home?
Posted 4/4/2012 7:47 PM (GMT 0)
DBwith UC - I agree it is likely an imbalance of the bad/good bacteria, or a deficient level of good bacteria or both. All I am saying is, in my opinion, the cause of this imbalance in some cases may well be an unknown bad bacteria causing infection which cannot be eradicated with conventional medication. This bad bacteria has to be killed before you can re-establish the level of good bacteria. If this bad bacteria isn’t killed off completely the infection will likely come back.
I also agree that daily FTs are required to provide the proper balance and constitution of gut flora for a sufficient time. Hence my suggestion to do it daily for at least a month which hopefully is enough time to also get rid of the bad bacteria and spores that may or may not be present.

pupluv - I think the fact that FT has shown improvements in the last month is a great sign and you should continue and hopefully things will continue to improve.
Posted 4/4/2012 8:30 PM (GMT 0)
The problem here, is there is no set FT protocol yet. So, we are all doing our own research and trying to make the most sense of this. If you subscribe to the unknown underlying infection theory (UC), then....you may need a long FT protocol to also eradicate any spores as they cycle back to life. Using the MAP bacteria as an example, its spore cycle is months.

As far as balancing the flora, I think this happens quickly as long as the donor match colonizes. Our gut flora, if colonized, regenerates and populates constantly to keep a balance and replace what leaves with a BM. During disruption via infection or abx, the "gaps" get filled with the bad guys who are more resistant and cause the problem. The majority of our gut flora is unknown, so we are guessing with what we know.

Bananagirl, a scope, followed by a couple ng tubes is extremely thorough for FT. You will be covering every inch of your intestines and should get great results if things "stick".
Posted 4/4/2012 9:33 PM (GMT 0)
Edbar, I agree but it is difficult getting my husband to do a deposit everyday as he does not go everyday. We are going to go away for the weekend so I am hoping everything stays ok until Monday. I am going to continue with the FT's for another couple of weeks. I did not do the antibioitics, so I am thinking I should do the FT's longer than recommended..Just really hoping this works as I was really excited.

I really appreciate your input

Thanks

Donna

Posted 4/10/2012 3:07 PM (GMT 0)
Allegheny General Hospital in Pittsburgh, PA is doing my FT through colonoscopy. The doctor said he would also do additional flex sigs or nasal gastric tubes if needed. I am picking up my donor testing prescription today and he also would prefer someone not in my household. I am using another relative but am worried that she does not go to the bathroom every day. She said it's usually every 2 days so I hope when I do them at home that this frequency is good enough. She is the healthiest woman I know so I know she is a very good candidate- exercises regularly, eats high fiber, very hygienic, and she's also a nurse so she understands the the aspects of this procedure.

Should I continue my probiotics or stop them once I start FT? I want my donor's samples to have the best chance possible of colonizing.
Posted 4/11/2012 1:49 AM (GMT 0)
Hi bananagirl,
Havn't been online all week and was stoked to see that you have your appt booked!

It's been hard for me this week with the FT's, i definitely need imodium and or codeine to help retain the implant and have had to lay down a lot in fear of loosing it. I've found a bit of extra sea salt in the saline solution helps and a warmer temp so it's not cold by the time the enema empties and slower the better.

However I do believe it is calming the inflamation as my BM's are much larger in diameter, firm and without obvious marks from imflamed bowels ( I usually have D or pensil thin, jagged cookie cutter shaped BM from inflamation).

Each day is getting easier but it is a big comittment as it is like haveing a D flare really, trying to hold on all day.

I find I am also producing a lot of gas from the implant, I can litteraly feel it bubbling away in there, so I relieve some of the FT about 2.3 to 4 hours later to stop getting pain from the gas, I've never had so much gas!

I'm going to give it a break this weekend so the test will be if my poop still floats on Monday.

Oh and for some reason I just can't bring myself to blend it, my donar is a vegetarian and the poop contains some undigested plant matter nuts etc saltana's from the hot cross buns this easter LOL

I have stopped using any probiotics as FT is the best probiotic s it doesn't make sense buying the stuff that didn't really work anyway. My donar eats a lot of fermented foods though?

I look forward to reading your posts when the treatment starts for you!
Good luck!
✚ New Topic ✚ Reply
123