HealingWell
Search Close Search
☰

Fecal Transplant update

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/14/2012 2:59 AM (GMT 0)
Hi All - I wanted to let you know that I have had some symptoms sneak back into my life over the past few weeks.  My life has been riddled with a huge amount of stress, which is a trigger for me.  Its not to bad, slight inflammation and some urgency.  I had a scope on Friday.  I am adding Rowasa (to 4 Lialda a day) and trying to arrange for another FT via colonoscopy this summer.  WHile it confirms that this time it was not a cure for me it did give me the best remission i have ever experienced. 

I would also like to try LDN but my doctor said no. 

I still am a firm believer that this is an alternative treatment that can work for some. 

THANK YOU to all that cheered me on.

 

Posted 2/14/2012 3:07 AM (GMT 0)
I'm so sorry to hear that. I was so hoping it would work for you. Have you ever considered doing a "top-up" FT at home?
Posted 2/14/2012 3:09 AM (GMT 0)
Stacy, I agree with Edbar, I know how disappointed you must feel (I am disappointed for you reading this) but the fact that it worked so well means that you're on the right track. Can you do it at home with enemas following Dr Borody's protocol? We are thinking of you...
s
Posted 2/14/2012 3:29 AM (GMT 0)
Hi. Mr dr would like to use a different donor for next one. He believes that husband and wife share flora. So if he agrees to do another ft this summer I will do an at home in addition.
Posted 2/14/2012 6:41 AM (GMT 0)
Sorry to hear this Stacy. I was hoping you'd get years of remission. Sounds like things aren't out of control though. Too bad you can't do another ft right now to head things off before they get worse. Good luck and keep us posted.
Posted 2/14/2012 9:57 AM (GMT 0)
Stacy, I have a consultation for a fecal. I acttually put off surgery to hopefully try it. Could you fill me in on your history and how it worked for you. I was thinking of my daughter as a donor. Thanks
Posted 2/14/2012 1:12 PM (GMT 0)
Stacy, so sorry it didn't last longer. I was so rooting for you and that it would last forever. You must be feeling pretty disappointed.

I don't understand why your Doc would be against LDN if he was open to FT?

Have you started adding back probiotics again?

Posted 2/14/2012 2:59 PM (GMT 0)
Luv2Jump: i just moved and the donor and dr are in FL otherwise I would try to get the FT done sooner.

InSOFl - I know! it is so irritating to me that he will not give me LDN, I live in Jupiter, FL now - do you know of any GI here that I should try? One that might be open to LDN? and Yes I have started VSL and florastor.

Allswell: there is a thread called Fecal Transplant via Colonoscopy that has all the details about me and my FT. Let me know if that helps you or if you have different questions.

Thank you for the responses.
Posted 2/14/2012 5:02 PM (GMT 0)
I am sorry you're having some symptoms. Hopefully your GI is right and a different donor may wipe this out for even longer. You had a great stretch of being med free from your last FT so I think you will have luck again.
Posted 2/14/2012 5:20 PM (GMT 0)
I think the result is promising. From my reading, you should expect multiple and reoccuring FT to obtain and mantain remission. In a 2011 review, Dr. Brody, a leading FT advocate said:

"From our initial
publication in 2003 reporting on the treatment of six UC patients
with five FMT infusions [10], our subsequent unpublished experience
is that multiple and recurrent infusions are required to achieve
prolonged remission or ‘cure’."

(http://www.expert-reviews.com/doi/full/10.1586/egh.11.71)

Posted 2/14/2012 7:02 PM (GMT 0)
i meant to say that my dr and donor are in NY and I am in FL
Posted 2/14/2012 7:32 PM (GMT 0)
Sorry to hear that the symptoms are returning, but it sounds as if you got some good time out of the procedure. Where is the dr. in NY? I am contemplating this procedure, but not sure if I want to try it home on my own. I was going to contact a dr in RI, but I think she only does it for c diff.
Posted 2/15/2012 1:29 AM (GMT 0)
sas,

So you're in south florida now! Welcome.

As far as a prescribing LDN physician, your best bet is to call Skip's Pharmacy in Boca Raton, FL.

You can google it for the phone number, no?

Let me know what you find out. Good luck.

Posted 2/15/2012 10:00 AM (GMT 0)
I read that thread, wow. You said your symptoms weren't,t bad at the time, was there blood, how many bm,s. also do you have any clues as yo what may have triggered your uc? I was on antibiotics for an extended time for rosacea while, but I had also used ibuprofen for back pain for about ten years
Posted 2/17/2012 12:24 PM (GMT 0)
Hi sas, long time no talk. I agree with the edbar and dbwithuc, from your prior success, I would think a subsequent ongoing ft protocol would do it for you. Good luck and DON"T stress.....T
✚ New Topic ✚ Reply