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Fecal Transplant - think I'm going to try it

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Ulcerative Colitis
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Posted 4/6/2011 1:14 AM (GMT 0)
Hey Mompanda..been checking on you everyday and my fingers are crossed that it works! My hubby is getting tested Friday to see if he can be my donor. I know you mentioned you are having trouble with the whole process. I'm nervous about that as well..I am not looking forward to playing in poop:(. I have 4 dogs and a cat..i clean up their poop everyday, but messing with an adult man's poop..yuk!!!!

Donna

Posted 4/6/2011 1:21 AM (GMT 0)
Good luck Donna! It is an experience, that's for sure. Think part of the difficulty for me was that it always happened in the late afternoon/early evening - a very challenging time with 2 kids. I never really felt "relaxed" during the whole process, and it was always a chore. I was always anxious to get up to either make the kids dinner or check on them. Hubby wasn't home, so it was just me. I also had to make sure that everything was cleaned up before I could start the enema so that the kids or the cats didn't get into the mess.

I hope it works too. When you start it, keep your eye on the prize. It is only a short amount of time for what could be an amazing "cure".
Posted 4/8/2011 7:11 PM (GMT 0)
Just to end off this thread from my point, the fecal transplant does not seemed to have helped at all. Had a flex scope today, and the inflammation was pretty severe.

I am back on for a short course of pred, and then an increased dose of Remicade.

So, I guess I am one of the 50% that it doesn't work for.

Good luck to others who try it. You still have a 50% chance that it will work.
Posted 4/8/2011 7:22 PM (GMT 0)
Sorry to hear that m2p. How many infusions did you end up giving yourself before you had to call it quits? Do you think that FT made your symptoms worse?
Posted 4/8/2011 8:07 PM (GMT 0)
runcycle - I only did the 4 infusions. I had intended to do 5, but my daughter didn't go one night, and the next evening, I had a meeting. I had been planning on taking a few more infusions this upcoming week, but I don't really see the point.

I think the fact that my symptoms got worse was a coincidence. That has been my pattern with Remicade so far.
Posted 4/9/2011 3:40 PM (GMT 0)
I am so, so sorry to hear it didn't work..

Donna

 

Posted 4/10/2011 7:21 AM (GMT 0)
I wish it had worked for you. sad
Posted 4/13/2011 2:59 AM (GMT 0)
Pupluv, have you begun the infusions yet? If so, how is it going for your?
Posted 4/13/2011 4:30 AM (GMT 0)
Hi Aussie, Unfortunately..we had an emergency to take care of and he couldn't do get tests done Friday..all is good..And we are going to have tests run tomorrow..I am ready to start!
Posted 4/20/2011 3:53 AM (GMT 0)
I'm trying this for Crohn's colitis. I've done 4 so far using my 10 year old's daughter's stool. (I breastfed her for 2.5 years, delivered her vaginally, and she's never had antibiotics, so I was lucky to have a good donor! ) And it's spring break, so we're home all day.

First one my husband spilled most of it by accident, so I only got about an ounce up me. Second time, we mixed 1/2 stool with salt water, used an emptied enema bottle, but I only held it in for about 15 minutes. Third time was the charm; we made it much less liquidy, didn't use salt (boiled distilled water first), and I put in about a cup total. I was able to lie down for 2 hours (I actually fell asleep), then amazingly I held it in all night from that afternoon! But she had pooped around 11:30 and I didn't get a chance to do it until 2, so don't know how "alive" the bacteria were.

The fourth one worked well, except I had a dentist appointment soon afterwards so couldn't relax. I had a few moments that I thought I was going to expel it, but I breathed and got through it, then managed to hold it all the way until the morning.

The only change so far is some painful external hemmerhoids went away after the first infusion (could have been a coincidence) and I've had some gas without a mess in my underwear. Maybe less pain, but it's hard to say. I've also started a few other things this last week (bupropion and curcumin.)

I'm hoping my daughter poops tonight. It would be much nicer to just do this before bed! Thank God my husband does the blending and puts it in the bag for me, and cleans up afterwards. He is a saint!
Posted 4/20/2011 4:06 AM (GMT 0)

Thanks  7007,so much for update..Actually sounds like you are on an upswing. We got my hubby's blood work back and need to confirm something. It said he was reactive to Hep A viral. I think I was reactive as well. I even remember how sick I got. So i dont' think its anything.

Seems like we will never get his stool tested as he had some things going on outta town. So he's back and he promises we will so it Thurs..We will see. Cause even when it comes back good, i will have to take antibiotics for 10 days if i decide I want to go that route. Will keep you informed as well.

Posted 4/20/2011 5:12 AM (GMT 0)
I am new to this. I started my first F.T today. Iwent to Sydney a month ago and went to see Dr. Borodys colleague and he gave me the home protocol. The first infusion went aweful, mainly b/c I put too much saline and it was too liquidy and I could only hold it in for 20 min. I took 2 immodium as instructed this morning and havent used the restroom since the 20 minute issue, but could be because the imodium, not the F.t. I did the antibiotics and colon prep the day before. Tomorrow is day two, going to do it more thick and hopefully it will stay in longer. Any advice on keeping it in longer I would appreicate. Im using enema bags. Thanks
Posted 4/20/2011 5:21 AM (GMT 0)
By the way, I have had u.c for 11 years, Im 29 years old, female and no abuse of antibiotics, but definitely ibprofen when I was younger for fracturing my spine. I have a cousin on both sides who has u.c as well. One had his colon removed and is doing great, Im trying to avoid that. Im currently on cimzia, a probiotic, colestrum, and gltathione. I just stopped lailda and curcumin.
Posted 4/20/2011 1:49 PM (GMT 0)
7007, just a suggestion, I had to go off curcumin since im doing the fecal transplant. I was suggested by the doctors in Sydney to go off it because it could interfere. Good luck to you, Im going through this grossness with you :)
Posted 4/20/2011 1:50 PM (GMT 0)
This study was interesting: http://www.genomeweb.com/sequencing/fecal-transplantation-alters-rat-gut-microbiomes

It showed the rats who DIDN'T receive antibiotics had better success implanting the donor's bacteria then the antibiotic ones. I just happened to be on antibiotics for the last few months to clear a rectal abscess. But I plan on repeating this further out (if it works) to make sure the bacteria colonize.
Posted 4/20/2011 1:52 PM (GMT 0)
Stewiegrif33, make the mixture as thick as you can without it getting plugged in the tube. I also eliminated the salt and boiled distilled water instead (it was kind of old). I've been able to hold this in without issue.
Posted 4/20/2011 1:59 PM (GMT 0)
Does anyone know how healthy the donor has to be? Because my boyfriend has offered to donate his stool (such a sweetheart :) and he has IBS. Not serious, just D and stomach cramps occasionally.
Posted 4/20/2011 2:57 PM (GMT 0)
Runaway, I would not recommend it if he has ibs. They say for the person to have a completely healthy digestive track. Ibs can have a lack of good bacteria for the intestinal flora as well, even if he does not have tons of symptoms. There are a list of things that the donor should get tested for including parasites which is something that someone can never know they have.

Thanks 7007 I will try warming the water this morning and let you know how it goes... Did you take imodium every day before? I know that I was told to take this the first day but I took it today too b/c im afraid it will come out right away again. I also know imodium is bad for colitis long term :(
Posted 4/20/2011 3:22 PM (GMT 0)
I did take Immodium a few hours before the enema, but not yesterday, and I had no problem containing it.

But I'm going into this with solid stools (albeit skinny) and a little bit of mucus, so I'm not in a really bad state. If I were flaring, I could see not being able to hold it in very long.

BTW, I have Crohn's disease, but right now it's most active in the sigmoid and anus. I don't see how the bacteria migrate to the cecum and ilium, but hoping they can eventually, since that's the other place my Crohn's resides.

I hope this works!!! I did it last night, and it didn't hurt to insert the tip, like the first few times. After the first, my external hemmerhoids went away, but the internal ones remained. I couldn't believe how much less it hurt to put the rectal tip in last night. I hope it means good things to come.
Posted 4/20/2011 4:00 PM (GMT 0)
7007

My daughter was able to hold the first "donation" for 15 hours. She intitially laid on the bathroom floor on her knees (butt in the air). Then she moved to the bed. I know you probably don't have the luxury of laying down because you have a family to take care of but I really think the longer you hold it the better it is for you. Since your external hemmies are getting better maybe that means that it's working its way up. I'm thinking good thoughts for you!

mom2panda,

I wouldn't give up on this. Maybe you need more infusions than others. I would say to keep up with it . Did you do antibiotics before hand ? We didn't. Not sure if that makes a big difference but we were too afraid to give our daughter the antibiotics. How long were you able to keep in the infusions ?
Posted 4/20/2011 5:46 PM (GMT 0)
Thanks 7007, the warm water might have helped a little. The stool was too thick today so tomorrow we are going to use something different than the bags Ive been using. I only got a little today but was able to hold it longer. Hopefully my little guys are multiplying. :)
I know Mine is colitis and your is crohnes but the tough part is getting past the anus b/c its so sentive bc the inflammation. Since you said yours is bad there too, doesnt it bother you and feel like you have to run to the restroom?
I took imodium today again so its hard to tell if its helping much until I stop taking it and see how many times a day im going.
Posted 4/21/2011 5:14 PM (GMT 0)
Day 3,much better, got about 80 mil in me for an hour. I used an enema bottle instead of the bag. Much easier and stayed in me easier. I think the hot water helped too.
My stools this morning were a tiny bit normal than usual, so im hoping for the best. Im sorry this didnt work for you, mom2panda. Do you think trying the 10 full infusions might make a difference?
Posted 4/21/2011 6:31 PM (GMT 0)
What's the reason for no curcumin? I didn't know it was antibiotic. Also, the 5 ASAs including sulfasalazine are not included, but would you resume them right afterwards? I don't feel comfortable removing my only anti-inflammatories, especially if this doesn't work.

I'm also planning to do 10 infusions, then do them a few times a week, then weekly, etc.

I'm more gurgly, and feel a little nauseous yesterday and today. Still solid stools though. I came off the antibiotics a week ago, and last time I started to regress (nausea, looser stools, getting up at nigt.) I hope the nausea doesn't mean that's happening again. ;(

I expect there is some shift in bacterial composition. How long do you think it takes for the colonic flora to take up the donor's bacteria? How do the bacteria make it all the way to the cecum?
Posted 4/21/2011 6:56 PM (GMT 0)
Keep it up, just be positive. Im not sure the reason about curcumin and it sucks b/c I went off it too and I know it helps, but I was told from the doc in Sydney to go off it. Im assuming if the fecal tran does not work, you can go back on anything you were on prior, no loss... but if you benefit from the f.t, then stay off them.
Im going out of state tomorrow, so not sure if I will do one inthe morning or not. I will def do the rest when I get back next week.
Posted 4/21/2011 7:05 PM (GMT 0)
I think that I was too inflamed to do this effectively. I could seem to keep anything in, including my enemas. They said it is best to do it when you are relatively well. I haven't given up on it, but I am waiting to see if I can get the things a bit more under control before I try again.

I did not take the antibiotics beforehand. I had recently been on Flagyl, so I wasn't too worried. Only thing I missed was the immodium on the day off, and the clean out. If I do it again, I will follow this part.

I am keeping an eye on this thread to see how you all are doing with it. Good luck!
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