Hi all. I Did fecal transplant and in remission!

Sorry for not responding here in a while and thank you all for you're kind words.

@allswell - I was on steroids about 3 months prior to the procedure. I caught UC around the age of 21. At the age of 22 was my first bad flare. I had a blood transfusion and prednisone worked miracles. This year at 23, I flared yet again and prednisone didn't do anything at all, except control the urge a little. My flare was horrible this time around. Bathroom 10 times a day, very bloody stools, just miserable! I couldn't retain the enemas in for the first two days but once I could, this is when the magic happened. I remember Brandt telling me also that holding them in for at least 4 hours is essential.

@ Sita - Thats incredible that you're doctor suggested fecal transplant. Out of the 5 punk doctors I have seen, they were all quick to say negative things about it. Not for nothing but if this is your profession and the chief of Gastroenterlogy in the United States is doing this to approx.10 people a day, did you not get the memo? Please do try this first, its totally worth a shot at the least. Although I really want to believe medicine is for a good cause, my righteous side just knows I am putting more money in somebody's pocket. I haven't stopped taking 5asa simply because of fear. We can all say when in remission, even the slightest thought of flaring again wreaks havoc on the mind.
As far as the donor goes it seems like you are trying to find someone with a healthy digestive system. Well, let me tell you a little about my mother's diet, who was my donor. Soda, coffee(she lives on it), constantly having sweets. I love her dearly but remember telling her that this is going to hurt me rather then help me. Sure, we laugh about it now but looking back on it, I felt like I was digging my own grave! By all means, if you think your donor is healthy enough, go for it. Whether it makes a difference or not shall remain a mystery in my book.

@ curl & puplov - Amazing for the both of you! Curl, I tried the SCD diet as well and read breaking the vicious cycle my first major flare. This diet seems skeptical to me also, I was on it for quite some time after my hospital stay. Once I flared again, being on it didn't help one bit. I think knowing what foods agree and disagree with ones self is more important than any diet. Moderation is also key when stepping out into the wild with a slice of cheesecake(lets say for example). I didn't agree with totally staying away from bread on this diet. I mean, my grandma grew up dirt poor. All she had to eat was bread and water at times and now at 78, she's healthier than I am! Living in New York City, I have the luxury of buying fresh bread at any given time. You might want to think twice on buying any bread or food rather, that has ingredients we cant pronounce. Just my two cents.

Hi,
I am a new member Caucasian 46 years old, UC since I was 14. UC moderate and has been flaring up every couple of years regularly. If I get a bout I usually get 6-7 stools a day, but can “ignore” it by taking Chinese “Po Chai” tablets for diarrhea, I live in Hong Kong, so I can buy them here. The Po Chai tablets are for stomach ailments and diarrhea, they have very little side effects compared to Imodium so I can take them long term. As long as I can keep my bowel movements to two or less in a day I can live with it.

I have tried everything from Salazapyrin, Asacol, Prednisolone over the years and frankly I was not impressed with the standard western medicinal approach. For my case everything seems to work the first time quite well, the 2nd time less well and even less after. I have never been in favour of taking long term strong medicines if I can avoid it, so I have never dabbled in any kind of immuno suppressants.

From my years of experience it is hard to gage what triggers it. I was in Africa once and good a stomach bug that set it off. I seemed to have had another stomach bug last time, otherwise it seems to creep up slowly over a few month with stress, usually I get night sweats for some time a few weeks earlier, I don’t know if anyone has noticed this?

Last year I had a flare and I tried the FT with my wife. I did it twice and the 2nd time it worked like a charm. I went into complete remission for a year. I did not know the recommendation to keep doing it for several weeks and to keep doing maintenance afterwards.

This year I got a flare up and so far have done the FT twice within 3 weeks, but without much success. The first FT we did my UC was still very much in full swing (it usually “calms down” a little after some time), so I put it down to this. Further this year I did not take pro-biotic for support as I did the first time.

Essentially the FT is human pro-biotic so what I am trying now is to use pro-biotic only – but rectally as well as orally. I have been doing this for the last 4 weeks and my UC has improved from 4 bowel movements to about 2 (without taking any Po Chai tablets). I have started taking them orally as well and I will keep this up for a few more weeks.
I think I made it work when I started to use the tablets with a hemorrhoid suppository, which seems to help distribute things. I am taking 3 different pro-biotic tables as I think a greater variety of bacteria should help more.

Let me know if anyone has tried this?

Ciao

clank, did you strain your solution before you put it in the enema bottle? that will help it flow through the nossle easier. also, i ALWAYS made 2 enema bottles worth of solution before i sat down. that way, if one got stuck, i'd have another. what i did for making the solution was blend the poop with salt water and then strain it.

i only had totally clean bowels the first time i did it. the next 7, i just did every morning without a saline enema beforehand.

pazelle, welcome to the forums -- did you mean to say you are currently taking your probiotics orally and rectally?

I have celiac disease and am currently undergoing Dr. Pompa's Cellular Healing Diet. I have Celiac Disease as well as Ulcerative Colitis. I was wondering what you eat after going into remission. After reading tons of articles, I have read that people do just fine eating whatever they want. However, having Celiac Disease, I am not sure this would be my case. What foods are you currently eating? Being 19 years old, I would love to go back to weighing 175 (currently 145 after 4 years of chronic UC), and not worrying about what I have to eat. Thanks for all the info!

Congrats, rami. I suspect the donor is key... I tried it with my girlfriend's (now wife's) stool and it made me worse, just like bananagirl's experience. The borody protocol instructions are kind of vague as to what to do with the test data from one's donor... Perhaps it is hit and miss. Anyway, congrats and I hope your remission lasts and lasts and worst case if you flare again, that another round of FT's will knock itout again as swiftly,

Trojen, I would be very interested to read the research you mention--about UC having several subsets of disease. Any links?

Just a quick update on my efforts.
I started taking Salazopyrin 2 weeks ago, I am quite desperate to improve my condition.
I stopped taking all pro-biotics, as I might have had some allergic reaction, the skin in my bum crack became rough and irritated it almost started bleeding (not pleasant!). I am not sure if this was related to the UC? I used a baby cream with zinc oxyde which got rid of it.
I did another FT last week and this time I had a bad reaction to it, it aggravated my bowel, I had 6 stools in one day, despite taking 4 Imodium tablets. But after 4 days it is much improving.
So after doing 5 FTs (all from the same donor) I had one bad experience. Given my previous success I will try it again as soon as my bowel calmed down a bit more.

anyone know where I can find a plastic syringe with disposable tips for the FT enemas? I have looked locally but they dont have exactly what I am looking for.

DanthaMan said...
anyone know where I can find a plastic syringe with disposable tips for the FT enemas? I have looked locally but they dont have exactly what I am looking for.

I had so much trouble finding the right tools too! What I ended up buying is a baby ear bulb (google image it to see what I mean). They can be found at any pharmacy/Walmart with the baby medical stuff, and are cheap enough to dispose of (I don't know how you'd clean it after). They have a small hole though so make sure to strain the solution first!

Hi Rami,

I've just read your thread and I've found it very inspiring. Thanks for sharing your story. I've had uc for the past 13 years I am planning to start FT as soon as possible. Just wondered if you are still in remission. Hope you are.

@FecalTransplantFortUC:
I realize there is another thread ('counting success stories...") you post in because I hit on your username but there are so many I just wanted to grab this as it includes others from years ago.
How are you doing now?
Also you said, "For healing the ulceration and stopping blood the whey protein shakes that contained L-Glutamine were highly effective for me. I have also heard good things from others who have used just L-Glutamine..." - still believe this as I saw posts later than this where it put others in a flare? thanks!

@trogen: How is your son doing? Any diet special he eats as I'm curious since he's older now and you might have less control over that (more so 12 on up). It's been a while since you posted so hoping all is well and you don't have time for this anymore

Others please about their FMT since this thread (I'll read through more current posts but I like to use older often for continuity and am trying to follow forum rules)

Thanks

fightUC- I'm reading a lot of success on FMT and will read through more current posts. You ever consider getting FMT done using a GI? I know not all benefited (not 100% success rate) but are you not close to considering surgery? Before that I would at least consider going with a dr, having it done with colonoscopy and all the bells and whistles (maybe not approved - I have a lot of reading to do).

really am curious about trogen's son and FecalTransplantFortUC as mentioned about and thanks for your report (It all helps).