So here I am...

In Portland, OR for my FMT retreat with Mark Davis. Checked into the house - Mark's assistant came to pick my mom & I up from the hotel this morning. Both her and Mark are *extremely* nice and very helpful. I have one housemate right now who is being treated for something other than UC, and there's someone else coming tonight, I don't know what they're being treated for. The housemate who is here (HM1) is really nice and young and smart.

I didn't know beforehand but would have guessed, but we are doing a "lavage" - bowel cleanse - in addition to the liquid diet for a day or so. We're cleansing with magnesium citrate, not that GoLytely stuff or whatever. MagCit actually tastes *good*, especially compared to that stuff. HM1 & I "cheers"ed as we drank the stuff down. :)

Tomorrow we get started with the FMT. Mark's lab tech will be demonstrating to me & HM1 how to prepare the infusion so I can administer when I get back home if needed.

The cold/fever that I had has abated fairly quickly - I finally feel myself again today for the most part, the first time since Monday of this week. Glad that didn't stick around.

I'll post daily updates here, as I mentioned in my other thread.

I'm looking forward to this. :)

Thanks, sas!

Yesterday started off kind of dodgy - I ate breakfast (eggs, spinach, broccoli) as per the protocol, but my mom was ready to "donate" and we didn't have any collection materials! I called Mark and they brought some over, but when my mom tried to collect a sample using the "nun's cap" in the toilet, it fell in & so we lost that specimen. I was kind of bummed out, but there's nothing to do about it. I asked Mark if he wanted to use a donor stool for that first day and he said no, that we could probably wait because it would set my gut off one direction and then we'd be switching. He considered it for a while though. I just didn't want my mom to be under any pressure. So I kept on with a liquid diet. My mom didn't know if she'd be able to produce another specimen, so we just kind of hung out, reading, chatting, etc.

My mom did finally have a little specimen in the late afternoon & I called Mark & his lab tech to come and help prepare. The race was on! :)

Had the abdominal massage about 4pm - WOW. That was so amazing. The woman administering was so caring. I felt so completely grounded and connected afterward. I think it was a great thing to have done just before my first infusion.

I took some video of the preparation for my own information (and to his credit, Mark said I could describe the prep and infusion process/procedure here - he wants the information out there!). I took a couple of Immodium to slow down my digestive tract & then had the infusion. It was small - only about 80ml or something, I forget the measurement. But! I was something. I held it through most of the night actually, only early this morning did I get up and have a movement that was fairly liquid, but not even much at that.

I had the infusion around 6pm, then dinner around 8pm because I didn't want to set my gut in motion, but had forgotten I had taken the Immodium. But I sat around chatting with my mom & HM1 for the night. HM2 went into his room to rest - he seemed to be really hungry from the fast.

Had breakfast again this morning (poached eggs on dinosaur kale & diced onions with some type of vinegar) and am posting this and awaiting the arrival of Mark & his tech so we can prep another infusion. I think I'm supposed to have a BM first. I don't really feel I need to go, but I do feel things 'backing up' in there. Probably due to the Immodium, I think.

The fiber in the meals is there because the idea is to meet the incoming flora with fiber for it to eat & colonize (HA! didn't even mean to make that joke. :) the colon with. I never have much fiber with breakfast, so I'm really feeling it.

Everyone is so nice & I'm having a lovely time. The weather has been really varied - grey in the mornings, then a little sun, then rain in the afternoons with a bit of thunder. I love it. :) We've had lots of suggestions from friends about where to go and what to do, but I'm not sure how I'm going to feel about going out or anything. 18 years of colitis has me trained to be wary about going out when I don't know where there's going to be a bathroom. :(

But - hopefully I'll get to see some of the friends I have in town, and maybe get a Stumptown Kilt while I'm here as a souvenir. :)

This is great reading, thanks so much for posting your experiences!

You're welcome, Serenity Now & sas. :)

Today was challenging. I wasn't able to hold the cleansing enema for very long - it was my first time doing something like that. I didn't make a horrible mess, but it would fill and I'd feel the urgency & get up.

My mom sat in on the prep today. We got a bit of a late start and between my happy post up there and when we started the infusion, I was getting irritated. I'm not sure *at* anything, but just that feeling.

Before the infusion I felt something in my ascending colon and went to the bathroom but not much came out and then lay down for the infusion. I had Mark stop after a bit (we're just using enema bottles) because I could feel the urgency coming on. No nausea or anything but I do feel really full, maybe from all the fiber? So I did the counterclockwise rubbing on my belly to try and help the infusion move back along the colon. We start on our left side for the infusion and do the rubbing for 5 min on left, 5-10 min. on my back, 5-10 min. on my right side and then 5-10 min with my rear in the air. When I first tried with my rear in the air it felt like I had to go, so I lay back down on my right side for a bit and then tried again in a few minutes. That worked ok. I still felt full & like I had to go. Having this disease, my first inclination when I feel like I have to go is: GO! So this was odd, having to hold it in, specifically for long periods of time.

I heard a knock on the door and realized I had been asleep. Mark's assistant was at the door with the lady to do the acupuncture and I needed a couple of minutes to clear the cobwebs - I had been asleep for an hour! So I had retained the infusion for 1.5 hours by that time, and they recommend 4 hours. By the time I filled out the paperwork it had been 2 hours, and the acupuncture took 45 minutes or so, so by the time I went downstairs to eat it had been about 3 hours! Only one more hour to go. :)

I had some food - hadn't eaten since breakfast - and that was great. The woman who is doing the cooking is *amazing*. The lunch was tuna with ginger and red pepper with something like bok choy, my mom said. Those bits were sauteed to make them a bit softer but the whole thing was delicious. I ended up holding the infusion until 6:30 - just 4 hours, but then I had to go. If I had been laying down or something I might have been able to stop it, but I was ready. I've had to go a few times since and it's been loose, but that's ok.

We had dinner just after 7 and it's now 9:30 and I'm already in bed because I'm just tired. Hopefully tomorrow morning we can get up and get the jump on the day so I'm not infusing in the afternoon.

So, my mom learned how to process the sample today. It is laborious, to be sure.

I held my infusion for about 2 hours. Mark says there's really no research that points to exactly how long to retain, but the thought being that longer is better.

I may switch to later infusions. Mornings have always been bad for me, colitis-wise, so instead of trying to fit a square peg into a round hole (so to speak ;) and not eating in the morning, etc, what I'd like to do is get up, do my normal morning routine (meditation, back exercises), eat, go throughout my day, and infuse maybe late afternoon again, perhaps before dinner.

My mom's been a great sport. I love her a lot. That's why I wanted to bring her here. :)

So, I tried another infusion around 3-3:30 I think. The acupuncture lady showed up just as I was dozing off a bit and I felt like I had to pee so I got up and ended up losing that infusion as well. So, overall, about 1-1.25 hours. Not great, but not horrible.

I did the acupuncture and that was pretty cool. Last time I saw a rabbit skull in the ceiling, this time a moose. Not a skull, just a regular moose.

There was a little left over from the 3:30 infusion, so I tried that and it stayed for a few hours, until about 8pm.

I'm still contemplating trying to infuse with the very last from this morning - it was on dry ice all day, but I think has thawed.

Just got an e-mail from one of my kids: "I can't wait for you to come home and for you to finally be better! I love you!!"

darn right I cried. I told her I might not be better, but I am coming home.

I'm still hopeful that this works, now or later. I can't say I've seen much change beyond things slowing down & backing up. It's only day 4, though. Marathon, not a sprint.

Best of luck with your therapy!

How much volume (ml's) are you infusing?

Oh, and to get back to DB's question, this afternoon's was probably 40ml or so? Maybe? The one I just tried, maybe 30. I don't have a measurement in front of me to guess. I don't know offhand how much I'm supposed to be using or trying. Mark says that Dr. Borody calls for a 1-to-1 mixture of donor feces & ml of normal saline. I think we've been about that as well.

Hi Pluot - thanks for the suggestion! I don't have access to those, but I can see how they might help! Interestingly, I've been very anti-any-drugs for help with my UC, but when Mark described how Imodium works - that it's basically an opoid that doesn't affect the central nervous system. Duh, people on heroin have bad constipation problems! So I'm not so against it anymore. I thought it was some weird synthetic whatever, and it might still be, but I understand what it's doing much better. :)

I'm defrosting another small infusion to try in a little while and see if I can sleep on it like I did last night.

Good luck, test pilot! for what it's worth, when I tried FT a few years ago (home brewed, using girlfriend's, but following enema portion of barody instructions) I was never able to hold it for more than 20 minutes or so either, even after a water purge... But sounds like you are trying all the right tricks.

Good Luck FMT we are all rooting for ya. Will keep watching and reading your updates.

Steve

Yesterday went much the same as the day before - Wake, breakfast, prep my mom's donation, meditate, back exercises (which help move the stuff in my gut out), infuse ~1/4 bottle, hold ~40 minutes, go to the bathroom, infuse again about ~1/2 bottle, hold for 2-2.5 hours, massage/acupuncture, eat lunch & dinner (my lunch was left from the afternoon's meal, I would just eat both!), nighttime reading & talking, then infuse rest of the bottle late at night & hold through the night until 5 or so am.

Today went the same, but I didn't take an Imodium and still held ok. I've worked much better with the smaller amounts. We're hoping/thinking that I'm still getting benefit, even though it's not a full dose. Mark said he's seen improvement with every UC case he's treated so far. I've seen some improvement I suppose - I'm not seeing blood and my stools are soft but formed. I don't know if the Imodium helped with that or what.

So, I didn't come here and heal immediately. I don't think I thought I would. I also didn't do a round of cleaner antibiotics which might have helped, but might not.

I'm still hopeful. I've got a week's worth of my mom's flora in me and, like I keep saying, I didn't get sick overnight, I don't expect to get well overnight. It took a year at least from when I first saw symptoms back in 92 or 93 until I was diagnosed in 94, and then a couple of years until the first time I crapped myself, which is what I see as the line between "being sick" and "oh crap, this is serious". Starting the SCD in '04 helped with my symptoms more than any medication has, and I'm off medication since 2008 or 2009, IIRC. Except for fish oil, vitamin c, acidophilus, etc.

I'm going to go home and do weekly infusions from my mom (when she's around and it works for both of us for me to do so) and will continue to report back. I'll start a new thread for that. I'll try to do one more post here with the prep setup & walkthrough. That will probably be a long post. :) But Mark is happy for me to share that information. He just wants to help people. My housemates seem to be doing better in their estimation, which is good to hear, but they don't have UC.

Thanks for your support, everyone, and many thanks to Mark Davis for pioneering FMT for UC in North America.

If anyone has any questions, please feel free to ask!

You're welcome Serenity. Just a quick update: I do seem to be doing better, although I haven't eaten much the past couple of days. But my gut feels "slower" - you all know what I'm talking about, I'm sure. :) Definitely not as much urgency as I usually can have. I'm still hoping to do another infusion this weekend, but I'd like to go see a couple of baseball games, too. :)

I'll also get back here and post the prep for the FMT that we were using. Lots of catching up to do here at home since my return.