Fecal / Stool Transplant, Human Probiotic Infusion, Enema of Crapola...possible cure for UC!

I have done a ton of reading on this forum after my wife was diagnosed with Ulcerative Colitis and it has been very helpful. I figured I would give back to the forum by answering the question I have seen many people ask... Is there a doctor in the US who will facilitate the stool transplant for Ulcerative Colitis? The answer is YES. He won't do the treatment like they do at Dr. Borody's clinic in Australia but he will prescribe the donor stool screening and the antibiotics necessary to do it right. He suggested it to us "off the medical record" because my wife would have to have surgery otherwise. As far as I can tell, he has facilitated 7 patients with UC on the verge of surgery and all of them have been "cured" of all symptoms. He told me he can hardly believe it himself except for the fact that he had seen them before (very bad) and after (very normal) doing the stool transplant. He is applying for a grant to do a statistically significant scientific study on this procedure because he suspects it may be the cutting edge treatment for this and possibly many other "diseases."

See the following NY Times article... http://www.nytimes.com/2010/07/13/science/13micro.html?scp=1&sq=fecal%20transplant&st=cse

The doctor in question is (deleted) at UT Southwestern Medical Center in Dallas, TX. (Deleted due to the fact that he stopped facilitating the transplant while he is applying for funding for a full fledged study on the fecal transplant procedure)

I heard a presentation by one of the patients who did this procedure (he had been told to call the surgeon and schedule surgery asap) and he said he felt better the very first day he did the transplant. His donor was his mom. He did the transplant 5 days in a row. He has been UC symptom free for two months.

Unfortunately my wife had a stroke (she is 28 yrs old) so our transplant is on hold for a while but we fully intend to carry this procedure out as soon as possible. I would highly suggest getting a test to see if you are prone to blood clots (hypercoagulative) by getting a Factor V (five) Leiden test. When you are bleeding a bunch, not eating much to avoid painful BMs, and laying around a lot because you are exhausted, you have increased odds of having a blood clot...possibly in your brain. If you are hypercoagulative you need to know it and probably be on blood thinners. Know the signs of stroke and take your loved ones to the ER as soon as possible if you notice anything wrong.

I'm going to put my email address in my profile if you would like to contact me.

Good luck to you and yours!

Post Edited (wifelookslikesheisdying) : 10/19/2010 6:57:09 PM (GMT-6)

Yeah, I read that on Healingwell's Facebook page that people with IBD have a higher risk for blood clots. Im so sorry about your wife! A stroke so young is horrible and terrifying! I hope she feels better soon. Keep us posted on the fecal transplant. Thats fantastic that you found a Dr in the US who's open minded enough to try it!!!

Thank you so much for your post. It's very imformative and encouraging. It's nice to hear that there are Drs who are willing to help their patients instead of experiment on them with increasingly toxic medications. We are seriously looking into FT for our daughter.
I'm so sorry for your wife. My brother, with UC, was diagnosed at age 23, had a horrific stroke at 24 (amv in the brain) and had a few years of horrific recovery. He still has some issues from the stroke but leads a really good life. I wish you and your wife the best during this time.

This is sure tempting to try, although messing around with someone else's s**t would obviously be disgusting, but then again, this disease is disgusting.

My colitis started when I was on antibiotics, which I think killed off too many of the healthy bacteria. Taking probiotics just can't seem to replenish all the healthy flora that got wiped out by the antibiotics. The fact that GI research isn't doing more on the flora/antibiotic angle is a travesty IMO.

Dr Swaroop won't win any popularity contests with big pharma if he pursues this line of research and treatment. The profit from asacol alone has been in the tens of billions, and the biologics must surely be a cash cow too. Hopefully he has the Cojones to press on and do what is right for his patients.

Zippy123 said...
Boy did you speak the truth C_G_K. Big pharma hates doctors that actually try to cure someone.

I can't think of a single reason why fecal transplantation should not be an active area of research based on the results so far, even if they are somewhat anecdotal. Obviously, a lot of it boils down to money, who will pay for research if there is only a small potential for return on investment?

Even if it only cures a small percentage of people with U.C., it seems like it would be quick, cheap with zero side effects, as long as infectious diseases are screened out.

And if bona fide research finds it doesn't live up to what was hoped, so be it, at least it was investigated.

The system works well for things that have to be cured outright, like cancer, but with chronic diseases that aren't life threatening, it seems to break down. Then the system is biased to putting out drugs that treat the symptoms and must be take indefinitely.

Zippy123 said...
I hear ya C_G_K, even with cancer they make a ton of money off it, why would they kill the goose that lays the golden egg?

I am close to wanting to try this fecal transplant procedure myself, if it could actually cure you of this disease from hell, half the difficulty is finding a donor. Then playing with someones poop is pretty disgusting for sure.

I would be happy to pay a ton of money for a cure. I am not happy to pay a ton of money to band-aid the symptoms and put myself at risk with frightening side effects.

I would use my oldest son as a donor. He is 12 years old and has never taken antibiotics. Very healthy and never had bowel issues.

Come to think of it, I never had any issues until I took antibiotics at the age 40.

Before this last flare of mine, I had to take antibiotics because of a stupid ingrown toenail.

Antibiotics are poison for me, now I am stuck with a flare, albeit minor, that I can't totally shake.

Mywifelookslikesheisdying!!

You are a true example of being with your wife "in sickness and in health". You sound like a commendable person. I am so glad to see you mention someone in the U.S. who is doing fecal transplants. I read about an MD in El Paso who performed one on a pt with C Diff.

I take it you and your wife have seen Dr Swaroop. Do yall live in that area? I am from MS and am actually going to Dallas for my anniversary! Hmm...coincidence!!??!??

Anyway...I am deeply touched by your story about your wife. I hope she makes a speedy recovery. I didnt realize that people had strokes with IBD...but it completely makes sense!

Please keep us posted on her recovery!!!!

Yes. I've done fecal transplantation twice.

I had a serious flare and was pred dependent. The next step was to either go on harder meds or get surgery. So I did fecal transplantation. I went into remission immediately. I had normal BMs for the first time in many years.

Then I had to be on antibiotics three times over a year due to bladder infections, which were probably due to having been on pred.

I got another flare. It wasn't as bad. So I changed my diet and took probiotics. The flare went away. But started to come back again.

So I tried fecal transplantation again. This time I could do only two treatments. It helped. But my BMs still aren't as good as after the first time I did fecal transplantation.

My conclusion: fecal transplantation might help to restore the balance of fecal flora in the colon. However, it is not a cure. For some, it doesn't take. For others, something else is wrong other than the balance of fecal flora. And for even others, the fecal flora can become unbalanced again. However, I definitely think it is worth a try though and much better than taking probiotics. I just don't want you to get disappointed if it doesn't cure your wife or doesn't even help her.

In the meantime, I suggest taking probiotics, turmeric, magnesium, and calcium supplements.

As for antibiotics, no, I didn't take them before doing fecal transplantation. I know that some antibiotics target the bad bacteria in the colon. But, given that antibiotics is the reason I have IBD, I just cannot bring myself to take them.

Yes. This topic has been talked about a great deal on this forum. I suggest doing a search and reading all the old posts.

Hi subdued. How long were you in remission before you had to take antibiotics for your bladder infections? The second time you did fecal transplantation, who was the donor?

Sorry it took me so long to get back on here but...guess what...my wife doesn't look like she is dying anymore!!!!!!!!!!!!!!!!!!!!!!!!!! Wanna know why? We finally got our sh!t together (pun intended) and conducted the fecal transplant procedure beginning Labor Day weekend.

We basically followed the Borody procedure. She took the antibiotics beforehand, we did the transplant once a day for 10 days, i used the little Fleet enema bottles (poured out the saline, washed them out, then put my blended concotion in them), and then slowly injected (not sure that is the right word) them into her, and then she held them in for as long as she could (anywhere from 30 min to 1 day).

She saw relief after a couple of days(i think the prednisone was taking the edge off but after we did a few transplants things calmed down to normal). She had been taking 25mg of Prednisone. We started tapering off Prednisone 5mg per week. She still has no symptoms of colitis as of today. In fact, she had a sigmoidoscopy done last Friday and he said everything looked normal except for two things...1 - lots of scarring from healed ulcers, 2 - tiny area of bleeding in rectum. He said the bleeding in the rectum was fairly normal for people on blood thinners (specifically coumadin). He suggested canasa suppository once a week for that. Other than that, she will stop taking Imuran, see how that goes for a while, and then stop getting Remicade infusions.

So, we are not completely out of the woods because she is still on meds for Colitis but she has never been able to stop taking Prednisone without ending up in the emergency room. Fecal transplant allowed her to get off Prednisone.

I will scan in the before and after sigmoidoscopy pics and post them to this thread at some point (hopefully this week). They are very impressive.

Thank you guys for all of your support! I really feel for anyone who finds themselves in this forum looking for answers. I know how you feel and it sucks. I highly suggest doing the fecal transplant (what we liked to call our little science experiment) if at all possible. It is disgusting but it is sooooooo worth it. Beat the hell outta Ulcerative Colitis!

Adam

wifelookslikesheisdying said...
She saw relief after a couple of days(i think the prednisone was taking the edge off but after we did a few transplants things calmed down to normal). She had been taking 25mg of Prednisone. We started tapering off Prednisone 5mg per week. She still has no symptoms of colitis as of today. In fact, she had a sigmoidoscopy done last Friday and he said everything looked normal except for two things...1 - lots of scarring from healed ulcers, 2 - tiny area of bleeding in rectum. He said the bleeding in the rectum was fairly normal for people on blood thinners (specifically coumadin).
Adam

That's great to hear and is very similar to my experience. Remember that your wife needs to be very careful about taking antibiotics, because they can upset the balance again.