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Fecal Transplant Log Part II

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Ulcerative Colitis
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Posted 6/5/2012 6:19 AM (GMT 0)
Just wanted to update my thread with my status so people who have not followed me from the beginning can get an idea of what I have done etc;


INITIAL DIAGNOSIS: Diagnosed with ulcerative colitis (pancolitis) beginning of Feb 2012
EATING: Like SCD, eating cheese and sometimes cream (for cooking). Lots of fruit
DRINKING: 1-2 coffee/day, green tea, fresh juice
SYMPTOMS: no symptoms of ulcerative colitis (in remission). 1 BM/24h in the morning.
MEDICATION: Asacol orally and suppositories
WEIGHT: stable around 73 kg (I'm male, 1.74m tall)
FECAL TRANSPLANT: Performed Fecal Bacteriotherapy at home using my wife as donor starting the 29th of February for 27 days. Please see tinyurl.com/bw5fn8g for the procedure I used

Post Edited (curl3d) : 6/5/2012 12:28:23 AM (GMT-6)

Posted 6/5/2012 2:43 PM (GMT 0)
Thanks for the update. So happy when I got to the "in remission" part! :)
Posted 6/6/2012 7:14 PM (GMT 0)
Yes, thanks for the update!
Posted 6/23/2012 6:45 AM (GMT 0)
Bumping my old thread :] Im still here! ~ 3 months in remission now. Bowel motions have been very regular usually a bit gassy in the afternoon but that might be from the Asacol I am still eating, who knows.

Best wishes for a great summer to anyone living on the northern hemisphere!
Posted 6/23/2012 4:33 PM (GMT 0)
Hi Curl! So happy this is working for you...I was wondering if you still do a deposit here and there or are you completely done?

You may have already posted this, but are you on any meds at all?

I really want to get off my Aza but am nervous..

Thanks for update!

 

Posted 6/23/2012 6:01 PM (GMT 0)
Hi Pupluv no not doing any FT's at all, I am eating Asacol and have been using suppositories but will probably stop using the supps. I do believe in FT's as a therapeutic method but I don't think its a final cure for FT and will therefore continue to medicate for a good while.

My personal belief: I think the bacteria we inject with FT help restoring the flora and part of the flora can help you lessen the inflammation as some bacteria seem to interact with our immune system, but we will always risk relapsing with this condition. I think eating the "right" food is a good way of lessening symptoms but also not a cure.
Posted 6/23/2012 9:25 PM (GMT 0)
Thank you Curl..

I was really, really wanting it to be a "cure". But so far, I have to completely agree with you. I also did about 30 FT's in a row and have been doing 1 FT a week for the last couple of months. Never flared up again eventhough there were a few scares. I don't seem to however be able to go more than a week and a half w/o doing another FT as symptoms will start to return.

I am not giving up hope. My hope is your symptoms do not return and mine completely go away:)! Keep updates coming..

Thanks!

Donna

Posted 6/24/2012 7:39 AM (GMT 0)
Hi Donna,
Are you eating any medicines at the same time?
Posted 6/24/2012 2:26 PM (GMT 0)
that is so great curl! so happy you are still in remission. i am still looking for my way to achieve this but know it will happen eventually.
Posted 6/24/2012 4:27 PM (GMT 0)
Hi Curl, Actually..I have been really lazy about my meds since doing FT's and I was never lazy about meds. I am supposed to be taking 12 Asacol a day and have so for 15 years..I stopped taking those about 2 mos after starting FT's. I think it quit working a long time ago anyway. I am also taking Azathioprine(Imuran) which I have been taking about 4 years. It helped at first and so think it helps keep my flare ups from getting completely out of control..i think. I have been really bad about that but I still take it..I also took steroid enemas almost as maintenance for the last couple of years. I know I am not supposed to use this as maintenance but I was flaring up a lot and that helped. I have not had to take enemas since starting FT's. So actually doing a ton better. My doc does not know I have dropped all those meds and I have an appt next month:) I just want to drop all meds, but I know I should probably not drop Aza at this time..I would rather do FT's as maintenance than those horrible meds..I am gonna keep watching your success..
Posted 6/25/2012 5:48 AM (GMT 0)
Hi Donna,
That's great that you have been able to stay off those meds. I definitely still believe in FT as a therapeutic method. The question for us with colitis is if we can restore our colon's mucosal lining and intestinal wall, which seem to have been damaged for various reasons.
Posted 7/28/2012 8:13 PM (GMT 0)
Just bumping my thread. Still in remission with no changes. Trying to avoid stressing at the bathroom just letting it take the time it needs. Not eating gluten, starch or refined sugars and avoiding processed food. Not sure if I'll ever start eating these things again as this diet is making me feel good. My wonderful wife just found a recepy for using coconut flour in making a sort of bread and I actually enjoy it quite a lot.

It's quite weird I used to have this hemmy for like 3+ years and it's been gone for 2 months.
Posted 8/14/2012 12:21 AM (GMT 0)
Bumping my thread again. Feeling good and having no issues with my tummy. I still look down into the toilet after every time and it still feels so weird not seeing any blood, I had gotten so used to it and now its just gone
Posted 8/14/2012 1:06 AM (GMT 0)
Curl3d, good to hear! I am interested in your progress, as a few doctors have mentioned Fecal Transplant working for their patients up north. Are you still doing FT at all or laying low and seeing how the remission goes?
Posted 8/14/2012 7:52 PM (GMT 0)
Not doing any FT at all, I performed my 27 day treatment and I've been in remission since around when I finished it. Still eating 400 mg Asacol in the morning and staying away from gluten, refined sugars and milk, eating some hard cheese though
Posted 9/13/2012 9:03 PM (GMT 0)
bumping my thread, about 6 months in remission now.
Posted 9/14/2012 1:00 AM (GMT 0)
I forget, how bad we're you when you started your fecal transplants?
Posted 9/14/2012 1:01 AM (GMT 0)
Oh, and has anyone heard from Trojen and his son?
Posted 9/14/2012 1:13 AM (GMT 0)
@allswell I had been diagnosed with pancolitis the month before and I was on prednisone (around 30mg) when I started. I was flaring very bad before I was put on prednisone
Posted 9/15/2012 5:35 AM (GMT 0)
Sorry, diagnosed for the first time?
Posted 9/16/2012 9:31 PM (GMT 0)
@allswell I think I was diagnosed at the end of February 2012
Posted 11/14/2012 5:33 AM (GMT 0)
Bumping my good old thread to make people aware of FT. Around 8 months in remission now
Posted 11/14/2012 6:20 AM (GMT 0)
Glad to hear you are doing well curled. Is there a reason why you use saline water instead of purified water?
Posted 11/14/2012 8:34 AM (GMT 0)
Well I read through a bunch of different FT protocols at the time and most of them used saline. Bought it in my local pharmacy shop without any problems
Posted 11/17/2012 9:45 AM (GMT 0)
Hi Cur3d-

Ive been lurking for a while, and after reading Borody's 6-patient study and noting the current recruiting for the UC study in Chicago, I think I am going to try FT at home. If you have any studies/protocols/etc. you think would be helpful, it would be great if you could them to me.

I dont suffer from the worst case of colitis ever, but im prone to yearly flares and the remicade infusions Ive been getting for the last few years seem to be losing their effectiveness, hence my increasing hope for an alternative treatment. The tough part seems to be finding a proper donor who isnt related to me who would be willing to go through all this trouble on a daily basis for a few weeks! I'm also still somewhat confused as to what equipment will get this done best and where to get it. Thanks for any advice!
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