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Posted 4/25/2012 3:22 AM (GMT 0)
I hope this is ok to post, hopefully a moderator will let me know if it's not.

I've had ulcerative colitis for almost 20 years - well, I was diagnosed in 1994, anyway. The first 10 years were kind of a nightmare, like it is for many of us, but lucky for you recently diagnosed folks you have the Internet. :) When I was diagnosed, I just had to trust my doctor. Which didn't work out that well for me, because he said that all I needed to do was take sulfasalazine and I could eat or drink whatever I wanted.

Long story short, in 2004 I started the Specific Carbohydrate Diet, and that helped me more than any medication ever had. (Well, except for prednisone :) So, I've been managing my symptoms that way, but I still have flares a few times a year, and sometimes really bad ones, and I start looking for a way out. I've looked at surgery, but a few years ago, I started reading about "human probiotic infusion" and "fecal bacteriotherapy." Most intriguing was the research by Dr. Borody in Australia - but who has the time or money to go to Australia?

Flash forward to the end of last year, I was in another horrible flare, as bad as I ever had. I got on prednisone, got healthy, and started looking around for other therapies. End of my rope type of stuff. I saw an ad for a naturopath in Oregon who was starting retreats for HPI, or FMT as it's now known - Fecal Microbiota Transplantation. I couldn't believe it. I consulted with the doctor, and based on the science I've read about and consulting with my GI and GP docs, decided to give it a go.

So, I asked my parents if they could lend me the money for the treatment - and I asked my mom to be my donor. She agreed, & we go to Portland at the end of May.

I'd like to write about my before, during, and after here, if that's ok. Hence my handle (which is a nod to my dad) - FMTTestPilot. :)
Posted 4/25/2012 4:31 AM (GMT 0)
Is it with Mark Davis ND? I read about him and what he does. That is exciting. Keep us posted on how it goes.
Posted 4/25/2012 11:13 AM (GMT 0)
How long did you stay on the scd or are you still on it?

Good luck and keep us posted!

Posted 4/25/2012 1:03 PM (GMT 0)
Good luck! There are quite a few people on this board doing FT/FMT at home or by colonoscopy so you might want to read up on what they've done if you haven't already. There seem to be quite a few protocols for this since it's in the process of being researched and developed right now. Does Mark Davis do a series of enemas and then have you follow up at home? Will you be doing antibiotics before starting?
Posted 4/25/2012 1:09 PM (GMT 0)
Good luck! Please keep us updated!
Posted 4/25/2012 7:26 PM (GMT 0)
@seasons21 - It is with Mark Davis. I asked him if I could name him & the clinic and he said that I could, but I held off because I didn't want it to seem like I'm shilling for him or the clinic. It's just where I'm going to have this done. He asked why I don't do it at home and I'd just prefer to be in that controlled type environment at first, and will likely continue at home if needed. My posts leading up to the retreat will probably be pretty few, just how my gut is doing sort of things. I'd like to try to post every day while there, and then I'll follow up regularly afterward.

@zdenka - I'm still on SCD, 8 years this month, almost to the day as I write this! I still have SCD yogurt every day and eat pretty strictly on it, actually. I used to belong to a SCD mailing list but left because it was personally hard for me to keep reading about people "cheating" when they knew it would make them feel miserable or flare - I couldn't understand why they'd cheat. It's been easy for me because it's just been a switch that I turned "off". I'll smell foods I don't eat anymore like pizza, or sugar cereal, or noodles, and at this point that's good enough for me. I've done lots of traveling on SCD - Hawai'i, Disney World, driving to South Dakota and across to Wisconsin & back home. I've just been able to make it work. But I'm thankful for Larabars. :)
Posted 4/25/2012 7:37 PM (GMT 0)
@killcolitis - I have been lurking here for the last couple of months reading up on curl3d and pupluv & a few others. It's been encouraging, and informative considering that I feel like I'll probably continue with some home infusions after the retreat. I will not be doing antibiotics before starting. At this point I'm *really* wary of antibiotics, as I feel like it was taking the zpack in early December that spun me out into my really bad flare at the end of 2011/beginning of 2012. As I understand the retreat, it will be daily infusions via enema. I should get 7 infusions while I'm there, and the abdominal massage & acupuncture as well.

Thanks for the well-wishes everyone, and thanks for the tacit approval to post my story/stories here, Michelejc. :) I'm cautiously optimistic, considering that I feel like I can trace my colitis to a couple/few life events a couple of years before my diagnosis. My colitis has always been pretty mild compared to what I've heard and read about. I mostly have just left-sided colitis. My recent colonoscopy (March 23) my GI doc said there was more inflammation near the ileum. I had just come out of a shallow flare (my annual pre-spring flare - I tend to have one then, one in May - allergy season? - and one in October) and that's what I attribute the inflammation he saw to.
Posted 4/25/2012 7:54 PM (GMT 0)
I am so happy for you!! Dr. Davis is a truely amazing person and I know you are gonna get better. I spoke with him on the phone a few times and through lots of emails because I can't afford to get the treatment there. He told me how to do it at home and was just a very understanding guy. My only problem is getting a donor!
Posted 4/25/2012 8:13 PM (GMT 0)
Hi Joanna! You were one of the others I was following here - which has made me very thankful also that I have a supportive family that understands the science & is willing to help as donors and financially. I wish you all the best as well.

Mark has indeed been very generous with his time and advice. I'm glad he's following the Borody protocols so closely. I'm really hoping that this does give me a significant part of my life back. For me, I feel like the next step would be surgery, because I don't want to be on drugs constantly. Especially the biologics. But that's just my own bias. :)

But...let's not think about that. :)
Posted 4/25/2012 9:33 PM (GMT 0)
Welcome FMTTestPilot,

This is awesome. I've spoken to Mark Davis before he started his FT retreat. He started his "retreat" in January and he said he would post results after scope reports of his patients. Haven't heard anything yet. Do you have any info on his success rate yet?

Good luck to you. Thanks for posting your journey here. Your info is crucial to others considering this form of treatment.

FYI: FT gave my son his life back.
Posted 4/25/2012 9:47 PM (GMT 0)
FMTTestPilot, I am sooo wanting this to work out for you!You mentioned you will not do antibiotics.. I did not do antibiotics as they usually cause a flare but in my case, it has not been a problem..Good Luck!!!

Donna

Posted 4/26/2012 2:26 AM (GMT 0)
@trojen - I've asked him how the retreats have gone - I think he's done one early but also one in March & one in April that's going on right now. He said that the people that have been through have had good results, but that's one reason why I want to write about my experiences here, to give people an idea of what he's doing, how the retreats are run, how I'm feeling & doing in the run-up to the retreat and how the retreat ends up affecting me. I've enjoyed the benefit of the experience of others, and I want to give my experience to others. Which is another reason for my name - I feel that those of us trying this therapy are on the cutting edge of science. It's one reason why I talked to my GI doc & got my scope done before I went in - If this does drastically change my symptoms, I want him to know why and see the change it's had for me. He's actually doing some research on it as well. Congrats to your son. As much as I've not liked having UC, I cant imagine having it at that young of an age. I had already lived quite a full life by the time I was diagnosed. I feel like a lot of kids would grow up in despair.

@pupluv - Thanks for your posting here as well. I had decided to do this long before I found this board & you folks, but your success stories certainly help me to know I've made the right decision. :)
Posted 4/26/2012 2:29 AM (GMT 0)
Oh, and another thing - I've written a lot about my journey on SCD on another site. If you would like to read those posts, let me know here and I'll get that info to you. I'm trying to keep these accounts separate, though, for personal reasons. Nothing nefarious, just...separate. :) Oh, and my posts on that other place are sometimes graphic (nothing new for this bunch, I'm sure :) and can get profane. It was a pretty loose crowd. :) So if that's not your personality, you might want to steer clear.
Posted 4/26/2012 3:12 AM (GMT 0)
!!! yay! !!! share share share all you can with us, we dont mind!! good luck! i 'm near portlland  i'm gonna look into it some MORE

Posted 4/26/2012 1:53 PM (GMT 0)
FMTTestPilot,

Welcome.

That's great news, so excited for you.

I hope it puts you in full remission.

Good luck and let us know of your progress.

Posted 4/26/2012 6:55 PM (GMT 0)
Thanks Sheila & InSoFla. I'm hoping for full remission, too. My gut has actually been really good as of late, after I came out of my yearly early March flare. Maybe it's one of those "car mechanic" things where it knows it's being watched. :D
Posted 4/26/2012 10:22 PM (GMT 0)
lol!!!! car mechanic thing i do believe EXISTS!! ha!! good one!

Posted 5/1/2012 4:24 PM (GMT 0)
So, in the run-up to my retreat, I'm going to post what I'm eating, what the "prep" calls for, how many BMs I'm having per day, and what those are like. (I put "prep" in quotes because when I think of prep now I think of colonoscopy prep and this isn't that. :)

Every weekday I have pretty much the same thing for breakfast: Blueberries, SCD yogurt, dry curd cottage cheese & honey; banana almond flour muffin (4 raisins per muffin); Dole pineapple juice. So I won't list that anymore. :) It may change during the prep, as it calls for a very low fiber diet, and I'm not sure that the muffin will qualify, or the blueberries.

My mom & I go to Portland the night of May 24th & start my retreat on the 25th. She'll be staying with me, but I'm not sure what else there will be to do. Maybe we'll be able to see some of the city or surrounding area. I'll be there from the night of the 24th through the night of June 1st, taking 7 infusions. I'll miss my youngest's "graduation" from 6th grade which will apparently be a big deal. I wanted to get this done before too much time went by. I'll be sad to miss that, but, if this really works, it will be worth it, to me and my kids.

I've already talked about it ("the procedure" is what we call it) with my kids. Whereas I grew up NEVER talking about anything having to do with poop, between my colitis and their clogging the toilets on a regular basis, it's a regular topic of conversation in our house. My mom and I joke about 'talking s**t' all the time. :D
Posted 5/1/2012 4:41 PM (GMT 0)
FMT, are you staying at the clinic or are and your mom staying at a hotel?

Were you able to pick how many infusions to get? Dr. Davis told me it was 10 infusions for UC.

I really hope it goes well! This is where I'd go if I won the lottery!
Posted 5/1/2012 4:56 PM (GMT 0)
Hi Joanna - We're staying at the retreat house (don't know where that is yet) but not a hotel. I'm doing the full retreat, many thanks to my parents. Mark and I had a conversation back when the retreats were only 5 days. He said he modified the length due to his newer understanding of the Borody protocol for FMT, that 2 weeks is preferred. I explained to him that I wouldn't be able to take that long off of work and he was graciously flexible enough to work with me. I'm also in luck that this retreat falls over Memorial Day here in the US, so I would have had Monday off of work anyway, so I decided to use that 5th day I would have taken off the week before and arrive for the retreat on Friday.

That sounds confusing, but in essence, I'm able to check in a day earlier than I would have and still only take 5 days off work. :) Also, as mild as my colitis symptoms tend to be, we decided that 7 days would be a good start, and then I can try for weekly FMTs with my mom at home ongoing.

Also forgot to mention that with my breakfast every morning I take an acidophilus capsule after the yogurt and then fish oil & vitamin B complex after the muffin & pineapple juice. I used to take vitamin E but stopped after I read something about some sort of prostate or colon cancer and vitamin E.

As far as my current BMs, I've been doing really well. Things are pretty solid, coming out in what look to be thumb-sized nuggets but there's "extra" stuff, and some redness. This has come about after my colonoscopy on March 23rd, but I think the reason is that I've been eating a banana every night - banana, creamy peanut butter & honey - and I think that regular fiber has helped to keep me...regular. :)
Posted 5/1/2012 5:08 PM (GMT 0)

FMTTestPilot said...


@zdenka - I'm still on SCD, 8 years this month, almost to the day as I write this! I still have SCD yogurt every day and eat pretty strictly on it, actually. I used to belong to a SCD mailing list but left because it was personally hard for me to keep reading about people "cheating" when they knew it would make them feel miserable or flare - I couldn't understand why they'd cheat. It's been easy for me because it's just been a switch that I turned "off". I'll smell foods I don't eat anymore like pizza, or sugar cereal, or noodles, and at this point that's good enough for me. I've done lots of traveling on SCD - Hawai'i, Disney World, driving to South Dakota and across to Wisconsin & back home. I've just been able to make it work. But I'm thankful for Larabars. :)

I commend you with your journey on the SCD! It got me into remission as well... I'm thankful for larabars too, lol that was about the only processed product it seemed like an SCD'er could have.
Posted 5/1/2012 5:43 PM (GMT 0)
@stereofi - Thanks! It's been tough at times, but I think my health, especially long-term, is easily better for it. To the point where if I were cured by the FMT (I don't have any such illusions or expectations, just sayin'), I would probably still largely eat this way. Let's hope that's a decision I have to make someday. :)

Glad it's working for you as well! I have some Larabars I'm going to snack on here in a few. :)
Posted 5/1/2012 6:22 PM (GMT 0)
CANT WAIT TO GET YOUR UPDATES! ENJOY PORTLAND :) ITS A BEAUTIFUL CITY
Posted 5/1/2012 6:40 PM (GMT 0)
I've been to Portland briefly once before, Sheila, and I agree - it's a beautiful city! I hope my mom & I will have a chance to explore it a bit while we're there. :)
Posted 5/3/2012 1:12 PM (GMT 0)
So, I counted 6 BMs on Tuesday and 8 yesterday. I did go to see my GI doc yesterday as well. He said he's cautiously optimistic about "The Procedure". :)  He doesn't see any reason for concern about the procedure from a danger level, or as he put it, it's not a "toxic" procedure. He said he hopes it works for me. :)

He did mention another probiotic that I've heard of (VSL3), but we agreed that now is not the time to try it. I said maybe if the procedure doesn't work, I could try that in a few months. He did say he'd like to check back in with me and have me come in in a few months.

So, all pretty good stuff for the moment. :) (except for the number of BMs. I'd prefer to see that around once, maybe twice per day)
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