Fecal Transplant - I took the plunge! PART V

I thought I would repost to start it off.
Thanks 7007. I will look into them. How are you feeling? I am close in process for the Ft's as you. I am doing my 8th one today. Yesterday was my best one, I got 25 mil in for almost 2 hours. Its hard for me to keep it in for long periods of time and the amount I am supposed to. I feel like I sometimes have more solid stools, but I definitely have more mucus than usual. Its hard to say if Im doing better b/c Im off all of my herbs, lialda and curcumin (18 pills a day), so the question is would I be doing worse off all these if I wasnt doing the FT's? who knows.... Im trying to be patient. I am currently on cimzia, 40 mg oh hydrocortisone (10 mg of prednisone), probiotic, colestrum, and glutathione.
Has anyone on here done infusions and started seeing results weeks after being done with the infusions since it can take a while to "stick"? Thanks!

I have Crohn's colitis and decided to try this route after Remicade and Humira have failed. I was actually able to get a doctor to perform the first transplant via colonoscope. I did go through the antibiotic treatment and and also the lavage. My donor doesn't live near me, so I was only able to do 4 at home infusions before she left town.

I can say I did notice a difference right away. No more nocturnal bowel movements. Actually the first day, I had no bowel movements at all, normally I have 5-6. Yesterday I had three. Now today I've already had three and it's only mid-morning. Today was the first day I wasn't able to do an at home infusion, so I wonder if that may have anything to do with it. I also ate a lot of lettuce yesterday, in trying to get more fiber. Perhaps that could be the cause?

For anyone who has tried this, do you think I just need to do a few more infusions? When I read in Borody's treatment of UC, it said that some noticed a difference after a few months. I also read that it takes time for the bacteria to establish itself, so it wouldn't make an immediate difference. However, since I did notice an immediate difference right away, I wonder if the bacteria needs to be re-established via booster infusion.

I had such high hopes for this treatment, still do, even though I have Crohn's and I know it's not even well documented for use in Crohn's. Any suggestions/tips for those of you who have done this?

Any updates from anyone who has tried faecal transplantation?

Octobergirl - may I ask where the doctor who did you initial infusion via colonoscopy is please?

^^ wow that is an interesting story. Provides good evidence for a lot of the theories running around here: SCD is not a "cure", but a way to abate symptoms, and FT remains one of the top treatments options out there.

Lady-V said...
If those who do a FT can stay in remission for, say, 2 years without taking any meds, and be able to eat anything without experiencing any UC symptoms, then we can probably call it a cure. I sure hope so.

Although I did the FT at home by myself, I'm still a bit skittish because my donor was a young child who may not yet have a full complement of organisms in his gut.

I would agree. The six people from Borody's published results in 2003 sure seem cured to me. 10-15 years remission, no maintenance meds, and eating whatever the hell they want! If that's not cured, I don't know what is.

Keep us posted!

Momfer said...

If you don't see immediate results do the antibiotice route before the HPI treatment flushing out the bad stuff.

A while back I came across a study with rats that showed that the rats receiving the antibiotics before their FT didn't respond as well as the ones that didn't have antibiotics prior to their FT.

There's definitely a need for more studies, especially with human subjects, to nail down the most effective protocol.
In the meantime, a DIY at home FT cost practically nothing, and the worst that can happen is that it doesn't work 100%.

Elephant Pipe: HIV, Hep A and Heb B and parasites.

Good Luck!

Nope, he hasn't. He's rarely sick. Thanks!

CureUC where do you live such that your doctor is willing to help you?

CureUCtogether said...
Hi people!! Just like to say im starting the FT on the 18th!! Im 17 and have been in a constant flare for 2 years now. I got really sick after taking anitbiotic + bad diet + a whole lot of stress! I have tried so many different drugs which didnt do anything except make me so much worse! and i have done a few natural things that have helped a little but not enough!

I started my 10 days of antibiotics yesterday. For my first infusion my doctor is going to do a spray colonoscopy and following that i am going to carry on at home. I will keep everyone updated and if anyone has any tips to help me i would appreciate it! thanks!

I wish you luck!!

This is really interesting and sounds extremely promising, but I've got to ask:

How is this not lethal? Isn't eating poo lethal, because it's just microbes, germs, and other nasties? So how is directly putting it into the colon any different than eating it straight up and getting real sick?

So for those that it worked for, how often if at all did you have to re-administer due to returning UC symptoms? Do you do this for a period of several days and then from what we can tell *SO FAR* it's good for life? Or do you have returning symptoms every few months?

What about the long term implications? Could at one point in your life your system might reject whatever flora and whatnot is not in your colon that wasn't originally yours and cause severe problems?

What's up gutsters?

I am coming to the end of 10 days of fecal transplant therapy that I carried out at home with my doctor's blessing and prescriptions.

I am posting here because I want to answer any questions people have about the procedure, especially if they are considering doing it themselves. So far it has improved my symptoms quite a bit, but has not been a total cure. I think it is going to turn out to have been a very valuable tool in the treatment, and eventual cure of my condition.

Below is a short version of the whole story of my illness. Check it out before asking questions... the answer may be in there.

My name is Ben. I'm 25 and I've been dealing with Post-Infectious IBS-C since January 2010. It started on a trip to India with some diarrhea and then I became constipated for the next two months of the trip. I tried the usual fiber + probiotics and I think they just made things worse. Since nothing was moving, I think they just gathered in my small intestine and gave me a case of SIBO because I ended up with terrible bloating on top of the C.

I had stool and blood tests done, as well as a colonoscopy, while traveling and they all found nothing. The Indian doc diagnosed the P-I IBS-C and gave me Lactulose, a daily laxative. I took that for a while and it helped the constipation, but made the bloating much worse. I eventually got another case of diarrhea, took some antibiotics for the diarrhea, and all the symptoms went away. about a week after the antibiotics, some symptoms returned in a very mild form, but didn't bother me much.

Then in January of this year (strangely enough around the same date that the first flare began in India), after 8 or so months of relative health, the constipation came back. Again I tried more fiber in my diet and probiotics and again this produced the backed-up, SIBO-esque bloating. I had stool and blood tests and an ultrasound that found nothing. I then tried 3 rounds of various antibiotics, because they seemed to help back when I was traveling. None worked this time, so I started working with alternative treatments: Oregano oil, raw garlic, cloves, Wormwood, Black Walnut hulls, Aloe Vera, acupuncture, Chinese herbs, etc. I've also been on the Specific Carbohydrate diet since early April. Some of the alternative treatments helped, and the SC Diet keeps the bloating from being too crazy, but nothing was really moving me in the direction of a cure. I also saw a holistic doctor who had me do a stool test with Diagnos-techs. It found a very light amount of Candida, moderate pathogenic Strep, occult blood, and low SIgA.

I got a recommendation for a tropical medicine doctor in New York (Dr. Kevin Cahill). I saw him and he inspected a scraping of my colonic mucous that revealed an infection with Entamoeba Histolytica. I was relieved to finally have a more clear diagnosis. He gave me Paromomycin, an anti-amoeba drug, and Doxycycline, an antibiotic. I took them, was retested by him, and came up negative for the amoebas. He told me it may take a couple months to heal and feel well again, but after about a month and a half I only felt worse.

At that point I began to assume that the amoebas and all the antibiotics I had taken had caused some other damage to my whole flora that needed to be addressed. My holistic doctor had mentioned fecal transplant as a possibility and so I began to look for donors. Without intending to actually ask her to donate, I mentioned the procedure to a good friend's girlfriend and her eyes immediately lit up. "Do you want me to crap for you, Ben?!," she excitedly asked.

She told me she was very comfortable gut-wise and went 2-3 times a day consistently, which sounded great to me considering I was dealing with constipation. I started the low-fiber diet part of Borody's protocol right away and got her a stool test kit. Her test came back clear, and after 3 weeks of the low-fiber, I started taking Vancomycin, as recommended by Borody, as well as Nitazoxanide, an anti-protozoal just in case any of the amoebas were left.

The antibiotics made me feel horrendous. They added to the general feeling of unwellness that I had been experiencing for months, made me more constipated, and worsened the depression that this whole experience had created.

On the first day of infusions, I noticed an almost immediate loss of that depression and malaise. It could have been simply the hope involved in trying a new treatment, but it felt like there was a more physical, medical connection. It made me even more sure of the brain-gut connection and the ability of our flora to effect our emotions. I remained constipated for a couple days, but on the morning of the third day, I woke up to an immediate, easy, giant, solid BM. Those easy morning BMs have continued, except for one more bad day on day 5. Tomorrow will be the last infusion and then time will tell how well the new bacteria will colonize my gut.

The bloating after meals remains so I think it is a related but separate issue. Like I said before, it didn't start until a week or so into the constipation flares, after I had eaten lots of fibrous foods and taken probiotics in trying to move things along. If it does not fade with time, I'm definitely going to get tested for SIBO, and then treat that somehow, possibly following up with more transplants to keep things moving well.

That's it for now. I'll keep posting occasionally with updates.