My Fecal Transplant Log - female w male donor

I have noticed that there appears to be less interest in FMT on this board at the moment. Not sure why...would be interested to know. There were several threads quite popular just a few months ago.

I did just want to give an update that I have just completed my 2nd transplant. It has gone remarkably well. Much less gruesome than I thought. DH has been great support as a donor and helper to the process. We are planning to do 10 consecutive days of FMT once per day.

I am open to sharing more details of our process to those interested. Only at day 2, and we have followed Dr Borodys protocols quite extensively including 10 days of 2 antibiotics.

We are still learning how to perfect the mixture and the actual treatment. But it's gone really well.

Administered 1st FMT yesterday at 1pm and I had no BM until this morning at 9 am. It was solid and small in quantity. It's been over a year since I have seen such a nice solid poo! And that was the first day I took 40 mg Pred...and even longer before that.

Still taking 4 Lialda and 150mg Aza. I will see my doctor a month after FMT to talk about reducing Meds if all is successful.

So hopeful.

I was given a set of instructions from my doctor's office in the US. I happen to find the same document(s) online. I'm not sure of forum rules and if I'm allowed to post the link. You can find it by searching for "Home Infusion Protocol RECIPIENT Instructions" and "Home Infusion Protocol DONOR Instructions". They say Probiotic Therapy Research on the top and give an Australian address. One is 5 pages and the other 6 pages.

Just to clarify also, my donor was screened by my doctor's via an in-person consultation, blood, and stool tests. We followed the diet recommendations according to these instructions, and I took 10 days of antibiotics. Then, I did a colon cleanse with GoLytely before starting.

This has been a several month process as my care providers wanted me to be doing better before starting the FMT. Thus, I went on Aza. (Imuran) in April, since I was still going to the toilet 6+ per day prior to that. The goal was to get me down to 2-3x per day before trying the FMT.

My doctor is supportive of the FMT, and has had over 80+ patients perform it at home. They have told me they have seen great success. I'm still not sure how success is defined. I would love to rid myself of ever thinking of this disease again, but not sure if that's reality.

Just retained FMT #2 for 3 hours before loosing quite a bit of it. Stomach was really gassy and rumbly. I figure that Day #1 was more successful since I drank the GoLytely cleanse the day before.

I will talk to my care provider tomorrow and inquire about taking Imodium or something to retain it longer.

You should be ok to add link. I do it everytime. I googled for the information and found it on a site which want you to pay for a subscription.

Is there another site you can get it for free?

www.docstoc.com/docs/84107622/Home-Infusion-Protocol-RECIPIENT-INSTRUCTIONS#

Is this the same one?

/docs.google.com/document/d/182trbGk5UoLMapCoeIw8pjFmv00tIgjfySoP-gOGrrs/edit?hl=en_US&pli=1

Wish I could find a provider who does this in the DC area. My GI knows of this but says he's not trained to do it and with a small office it's not worth it..based on the "yuck" factor.

LoLil, that's so awesome that your doctor (and your spouse) are supporting you so well with the fecal transplant.  I'm just curious where you are that you found a doc so willing to support this? 

It seems there is so much evidence that IBD is influenced (dare I say "caused") by gut bacteria, and if we can find a safe and effective means of reestablishing that healthy gut flora/fauna, that would be so cool!

I tried the FT on myself, using my 2 yr old as a donor, he seemed to have the healtihiest bowel of anyone I knew well enough to ask, and it wasn't as unpleasant a task as I dreaded it to be, but it also didn't really do much for me one way or another.  So I am very interested to read about others experience with FT and if you notice some improvement, how much, how long did it take to seee a difference, how long does the effect last (may it last forever for you!!!), etc.

Thanks for sharing.  :)

Your story is so encouraging! I hope you continue with the updates and I very much hope this works for you. I liked you 'thick 'n thin' story...hope you get them just right from here on in. Your husband is a great guy to go through this with you. I'm sure humor is a necessary medicine. Now if you guys argue, you can tell him he's already given you all the crap you need

I think I read that male donors are preferred because of hormone issues.

Good luck!

Good luck with your FMT treatment! We have been doing them for the last 8 months with my son. He is doing well now but it has been a long road.

I had a consultation with Dr Borody a few weeks ago and he recommended to us that we may want to go on 6mp or Imuran in order to reduce any inflammation that may be present deep in the colon wall. He said that the FMT bacteria is very good at killing the bad bacteria at a superficial level on the surface of the colon wall but the bad bacteria that lives in the inflammation deep in the tissue is very hard to get at. By reducing the inflammation will allow the FMT bacteria to hopefully reach the bad bacteria deep down. It looks like you are taking aza so this is probably a good thing based on what Borody told me.

Borody recommends the donor should be 18 year or older. He also recommended to us switching donors if the first one doesn't work. He also said it is better to alternate between two donors if you can. This way you will get a better mix of bacteria if one donor happens to be lacking some species. 

I think 500ml is way too much to try and retain. It is better to reduce the amount to say 150-200ml and retain it for longer. Try to make the enema thicker by using more stool and less saline. This way you will get way more good bacteria going in with each FT. Be careful though not to block up whatever you are using to administer the enema. The other thing is, depending on where your UC is in your colon, you may have to lie down on an angle so that your butt is higher than your head. This will allow the enema to get to all the infected areas. With my son we have him lie on a mattress that we raise at one end so it is inclined. He lies on his left side with his butt at the high end when we administer the enema. He stays like this for 10 minutes then he turns on his back for 10 minutes, then his front for 10 minutes, then his right side for 10 minutes. Then, staying on his right, side he flips so that his butt is now on the low end of the mattress and he stays like this for 10 minutes. Then he is done. Good luck!

I use a strainer also similar to you. I only blend for 5-10 second though. It sounds like you have the right thickness for using an enema bag. 300ml is better than 500ml so if that works for you then I would continue. But if you are having trouble retaining it for more than 3 or 4 hours then I would reduce the quantity until you get more used to holding it.
The angle we use is 30-45 degrees. It’s not necessary to use all of the donor sample for the enema but if it is easier then mix it all up and use just the 300ml and then dump the remaining. Why did you decide on doing just 10 days of FMT daily? Would you consider doing them for longer if things continue to improve?

pupluv, I was wondering how you were doing. Good to see you are still feeling better. When you say “do the protocol the right way” do you mean using abx first? My son did vancomycin before we started FT which I think probably helped.

Thanks, pupluv and Edbar for your replies. In reading about FMT on this board prior to starting, I *think* pupluv and me could have the same GI doc. I don't remember what made me think that, but it's in my head somehow. But maybe not!

Edbar - I would consider doing more FMT, but I'm doing 10 treatments daily as that is what my GI clinic has recommended. I am supposed to follow-up one month after, so it will be September. My clinic has 80+ patients (if my memory is correct) that they have followed during the process. They gave me such encouragement -- from the nurses, PA, and the GI doctor himself. I guess I'm hopeful that 10 treatments will be enough to set me on my way for a loooong time. The process is going well, but it is quite taxing on our family. I would hate to think I have to do it for longer than 10 days before taking a break. I could see 1-2x per month not being the end of the world. Husband has had to take off work early a few times already when he has the urge to go. We have an active toddler who also wants in on the fun, so we have to keep her sequestered during the mixing and administration ...then DH takes care of her for a solid 2 hours. All this has to happen somewhat unscheduled, as DH can't poop exactly on command. :)

I took Vancomycin and Rifampin both. My clinic told me that one of them (can't remember which one) might be super expensive and I could omit it if necessary. But my insurance covered both with a normal co-pay, so I took both. I wouldn't say they caused me to flare exactly, but it did change my BMs within the first day! They were even less solid, and the color of my pee was really odd. Since Imuran had taken hold, I had finally gone down to 2-3 BMs a day with one being somewhat formed, but pencil thin -- no blood. While on the 10 days of antibiotics, I had probably varying numbers of BMs -- some days 2-3, and other days 4-5. But no blood and mucus. I pressed on, since this was the treatment recommended and I finally feel like I have care providers that are thinking about everything. I did continue my VSL#3 DS during the antiobitics, because I wasn't told to stop anything. Not sure it did any good, but I felt like I have already asked a ton of questions to my clinic!

I did the GoLytely prep. The day before my first transplant, I ate oatmeal for breakfast with peanut butter and drank Kefir and took my VSL#3. For lunch, I had half of a chicken salad sandwich. I ceased all solid foods by 12pm, and I started drinking the GoLytely at 6:30. I only drank half the potion before I was already going clear. So, I decided to stop. My care provider was ok with me eating that morning, which seemed a tad different than what my written instructions said (per the links mentioned above). The morning of the transplant, I ate a boiled egg and small slice of Lemon Cranberry bread. We attempted the first transplant at 9am, but had the thickness problem and lost the entire mixture. So, the actual first transplant happened at 1PM. I was disappointed that we lost that first one, since my colon was basically empty that morning. But since I held it until the next day, I guess that one went ok!

My care provider told me that many of their patients can come off all meds after a successful FMT. With the one exception being mesalamines. I was told that mesalamines have some sort of protective property and that patients who use mesalamaines show lower rates of colon cancer. Since they don't know the long-term effects of the FMT and don't know if it's really a "cure", and since our chances are HIGHER for colon cancer with a UC diagnosis, they will likely advise that I stay on a minimal dose of mesalamine. That's at least what I was told before starting this process! I had a glimmer of hope of getting off all meds except mesalamine. And since I take the maximum Lialda now, I was hoping to go to one pill per day. Sound realistic?

As for my donor, he hasn't eaten any lunch meat, hot dogs, pork, or shellfish in over 2 weeks. This is per the instructions we were given. He says it hasn't been that bad avoiding those things. I thought it might be hard for him at lunch during the work week, since it's always easy to grab a sandwich. He just orders a veggie sandwich or chicken salad sandwich at a more reputable place.

Thanks for the replies! Best wishes to everyone! Always good to hear others' experiences!

I'm not sure specific numbers and levels of success as to the statistics. But they highly encouraged me to do it. They told me that they saw even better results with females using male donors. So in that regard, they felt like I would be an excellent candidate.

I will ask at my next appointment about the success rates again. It was 4-5 months ago when I first started asking questions and I have forgotten. But I believe it was at least 50% of their patients called it successful. I still don't know how success was defined. I suppose the severity of the disease would matter too, so I'm not sure how to frame the questions.

I also remember at my last most recent appointment, when we started talking about the specifics of the process. I was told that they did a follow-up survey with their patients who completed the FMT about the Yuck-Factor. They told me that on a scale of 1-10 with 10 being the most yucky, disgusting...the majority of their patients only rated it between a 4 and 6. So, that gave me encouragement to proceed as well. And an overwhelming majority said that they would try it again and found it worthwhile.

I would say it hasn't been as yucky either. But my DH deserves an award. He is the donor and the master-mixer too! And he cleans up while I'm receiving! I really don't have to come in too close contact with the goods.

Thanks for the info. I had no problem with the Yuck factor doing it for my 8 yo son given the other choices he had. After doing 130 enemas or so in the last 8 months it has become part of our daily routine. I look at the mixture in the blender as my son’s best friend. When I spoke with Dr Borody he said he had a patient who had done 280 enemas.

Could be!!

Yes, husbands are great. They aren't all this good. I'm sure thankful for mine. I think he finds it rewarding, after he saw me suffer.

Edbar -- wow, you are really a pro. That's amazing! Great that it works, but on the other hand kinda bummed to hear that there's still a need to keep at them. I was hoping this would be the end. Maybe too wishful of thinking.