the low down on FT at Jackson Siegelbaum Gastro.

Okay. So at this point, I am set on going to Harrisburg for my fecal transplant procedure. I talked to the FT nurse today and she gave me the low down on how it goes. I figured I'd post the whole protocol in case anyone else was thinking about it or is close to Harrisburg. All of the procedures are done in the hospital but you are not inpatient. You go to the hospital almost every day and stay in a hotel.

1.) send medical records over to the office and the docs will decide if you are a good candidate. they need all colonscopy results, current meds, lab work, radiology reports, immunizations, etc.

2.) go in for consultation and bring your FT donor to get tested. this person CANNOT live in your household due to the possibility of having the same gut flora. it can be a relative or friend. (i don't really agree with this but that's their protocol)

3.) if donor is good, the procedure shall begin.

4.) arrive on Sunday night and do colonscopy prep

5.) do FT via colonoscopy on Monday

6.) rest on Tuesday

7.) Wednesday, Thursday, and Friday are FT through flex sig.

8.) Saturday- go home!

So I plan on doing more FT at home with a simple enema after this week of procedures just to make sure I really bite my flare in the butt. My only concern now is that my mom can't do it at the hospital. I am going to ask my aunt if she can help me out or even my grandma. I am really hopeful and excited it will work out though. Obviously, I'd love to just do it at home and get it over with, but my mom is too nervous about starting off at home... hence, Harrisburg! It's about 4.5 hrs from my house but the antibiotics- Flagyl- have been helping so I think I will be okay.

 

Great news! I'm so happy your mom's on board and that you've managed to arrange this. You might need to follow up with enemas at home but now that it's been sanctioned by a real live doc maybe your mom will be okay with that? Do you have a date scheduled?

Number 2) really annoys me when I think about it. Maybe they are just after eliminating the risk of using relatives with the same UC problems as you have but they could have stated that if that was the case.

I mean seriously, why would my wife have the same gut flora as me just because we both eat tomatoes bought at the same supermarket? That logic is just nonsense. Me and my wife eat different food all the time, we eat the same dinner but we seldom eat the same lunch or breakfast.

anyway its great to hear that you seem to have found a way to get the FT's! Keep us posted

@killcolitis I think the main argument around using a family member is that their gut flora might actually have a higher probability to resemble the flora you had PRIOR to getting colitis, which is what you would want to get back to.

Personally I think its very unlikely that people who are not blood relatives have the same gut flora even if they live and have lived in your household for a long time. I don't think any of this really matters in the end, what matters is that you have a different gut flora after getting colitis and by injecting healthy gut flora some of the bacteria might recolonize or at least help fight inflammation and help you get into remission. That, from what I have read, is all they really know about gut floras and treating colitis with it at this stage.

@killcolitis; Yes because your flora might have a higher probability to resemble more of what she had before she got colitis. This logic at least makes some sense although I am still skeptical as to if it really matters much in the end.

I think more of a way for them to stay safer in selecting donors as they know that since you already share so much time together the likelihood that they might introduce some new problem to your daughter is very small.

chrissy, fecal transplants have helped a lot of UC patients, too. it addresses the bacterial imbalance in the colon just like it would in a C. Diff patient. only thing is that UC patients usually need more than 1 treatment. it's harder to find a hospital that does FT for UC so that's why i posted this. i don't have C. Diff, just UC.

ssarow, i am doing 4 at the hospital and then repeating at home until i have no symptoms. i don't have an appointment yet but i'm praying i can do it. my biggest worry right now is the cost. since it's 4 scopes in one week, i do not even want to think about it. i will send them my insurance and see what it covers. i just feel bad for my mom because she's the one who pays for everything.

Four scopes? I've never heard of them doing that before. i guess you don't do a clear out before each scope? What abx protocol will you be put on?

Sounds great and I hope it works! It sounds like they've developed their own protocol since I've not heard of anyone doing four scopes in a row. Also, flagyl is usually used with two other abx according to Dr Barody's protocol when abx are used I believe. At Boston they want us to follow his and do all three at the same time. Flagyl is not a broad spectrum antibiotic. Anyway, as our GI says, most FT protocols do include abx but no one knows which ones to use. It's a shot in the dark and if flagyl is already working for you then I think it has a good chance of success. Good luck and keep us posted.

Good luck bananagirl. I know you have wished for this treatment for a while. Remember to stick with the FT when you get home. It's a long road but hopefully worth it.

johnscott, that's what i've been following. i am on day 8 right now. i actually have all the equipment at my house. i was prepared to do it at home but my mom is just not supportive of that. i have the psyllium to add to my own transplants when i do them at home after the initial scopes. if i wasn't being forced to do it through colonscopy, trust me, i wouldn't! haha i think the at home protocol is really convenient and way easier than going to a hospital. especially since we'll be paying 6 days to stay in a hotel on top of all the medical costs.

Great news....the more hospitals offering FT for UC is a good sign. There are also controlled FT for UC studies being set up and ready for recruitment. The published results are what is needed for this to become mainstream. I hope they follow a solid protocol.

IMO: The success rate for FT with UC is going to depend on many factors: Donor match (colonization), infectious cause or flora inbalance, protocol, flaring, severity of disease, etc.

Yeah, the family member donor is a double edged sword. I agree that there is a genetic predispostion for UC that plays into this, but don't know if a stranger is your best bet either? For at home protocol....a family member is by far the most practical.

Good luck Bananagirl, Killcolitis, and all FTers.... you deserve success! Please post your journey, we will all be there for you.