Decided with my wife, FMT before 6MP.

After contemplating and waiting for my doc to get back with me on starting 6mp I decided to give FMT a try. I just spoke with my wife about it and she is 100% with me on this and will of course be my donor. I want to do this before I go on the more potentially toxic meds.

When my doctor does call me which I am assuming will be tomorrow I will then tell him that I will be doing this before I go on the new drug. I am not sure how he will respond but I guess I will find out. My doctor is pretty much up on all the latest news and treatments so I am sure he is aware of this procedure.

I feel I have to give this a try as a last ditch effort to cure myself of this disease before accepting the much stronger drugs. Some may say they would try this as a last attempt before surgery but I feel for me it is something I need to do before continuing down current path my doc has in mind for me.

I have several questions but know there is an abundance of resources out there for FMT for which I will utilize. I just am not sure how staying on my current course of treatment will effect me and the FMT. I am currently doing Rowasa enemas nightly and really do not know if it will effect my outcome with one way or another.

My wife will get her physical and at that time will request a screening of her stool for this procedure through her doctor. She will specifically tell him she will be a donor for her husband for the FMT procedure and needs the proper testing of her stool done.I also am not sure how and if she will get the doctors approval for the stool testing based on this criteria. This will all be new to us and will find out as we go but that certainly is the first step in all this since she will be the donor. I guess we could always do this privately and pay for the testing ourselves if we get pushed back on.

If anyone has experience with this and the donor testing please let me know along with anything else I may need to know.

Gary, I found this to be interesting on your comment.

"Although a close relative is often the easiest donor to obtain and have tested, there is no reason to expect this to affect the success of the procedure as genetic similarities or differences do not appear to play a role"

Thanks you to all

Post Edited (twiggs) : 12/5/2014 7:21:21 AM (GMT-7)

WOW! My doctor just called me and said that he is all for me trying this procedure! He said that since my disease activity is located where I can reach it with enema that it may be beneficial to me and only way is to try basically. He even has done a colonoscopy on my wife before and offered to put in for the lab tests to have my wife tested as donor. All she has to do is call them and request and done!

My doctor said they do this procedure for cdiff patients but unfortunately not yet for colitis patients. He said that "I have room for experimentation with this". He wished me luck and said to keep him informed.

I cannot tell you how relieved I feel to have his blessing and to have them doing the donor testing also for my wife through Quest.

I will keep you all posted.

Michella thanks for the reply, I will check out that facebook forum.

BTW, has anyone seen this website before?

http://www.fecaltransplanttreatment.com/

Post Edited (twiggs) : 12/4/2014 12:11:54 PM (GMT-7)

That's great your doctor is being so helpful!

Sounds like you have it all set up already. I will say that in my opinion your chances of success are much higher with a blood relative donor.

Good luck!

Live free or die trying. Wishing you the best.

Hey gang, I wanted to tell you that yes my doctor is a very good GI doctor and is obviously open to all this. I was really nervous actually when I was about to tell him yesterday. I think he was expecting me to say ok I am ready for 6mp. But when I said I wanted to try the FMT procedure on myself before stepping into these more potentially dangerous drugs he said "what do you want to try" I repeated and said "The FMT procedure". He said" tell me what that is" I said "Fecal Microbiata Transplantation" He immediately said "and how are you going to do this" I said "enema". He then said "ok" and before he said anything else I began to talk more about how I been looking into this for a long time and reading up on it but the only thing in my way was to have my wife who was my donor be screened. I also said that since my disease is located right where a enema can reach easily he stopped and said yes you certainly have room for experimentation. My point is that you can tell he was biting his tongue because he can only talk so much on the subject but really wanted to help me. Anyways here is my update as of today.

My wife called the GI office immediately after and setup the screening to be done at Quest. My doctor instructed his nurses to fax everything over to Quest to get this all in process. Since my sife is a patient of my doctor already this was very easy. He basically put on the form for the reason for stool test was for CDIFF.

My wife left work early to head to Quest to get the kit which was ready for her when she got there basically. The person at Quest explained to her what she had to do. Last night My wife got home from work and had a perfect bowel movement and did I think 4 out of the 6 viles that needed to be taken. This am she dropped them off at Quest. One of the viles had to be frozen which we had in freezer over night. The other viles that need to be done will wait until Monday. This worked out because they wanted stools from at least 2 different days.

I cant believe how fast all this is coming together. Meanwhile I am getting my info in line and reading up on the procedure. I have some things that are in question about it and how I may do it but I don't think that I will be making too many changes to the procedure. Although I do wonder how diet on both our sides would matter while the procedure is being done and if it will matter. I was thinking like if she took a probiotic and took some psyllium. And if I should also be upping my fiber with smoothies and some Psyllium seed powder. This of course would be to have more butyrate and fiber in my and her system while the process is done. The other questions are as I was reading and the amount of actual material I would be putting in me. I read also. I am referring more to the amount I put in me not so much the saline vs water. I plan on using saline of course. Also the question of blending it and killing the anaerobes has me thinking but how else can you break it down? I am wondering how the prep it in the hospitals for cdiff patients?

"There is evidence that the relapse rate is 2 fold greater when water is used as opposed to saline as the dilution agent. There is also some evidence that using infusions of greater than 500 ml produces a higher success rate compared to infusions using less than 200 ml of prepared solution. Research is needed to determine whether certain mixing methods such as using an electric blender reduce the efficacy of treatment via oxygenating the solution and killing obligate anaerobes"

Anyways that where I am at as of this am.

I will keep updating.

Good luck man, awesome that you have your doc's support.

I did FMT. I was only able to do it once (my donor got married and moved away), but it made a big difference. I went from having terrible L-sided flares to annoying proctitis. Seems that I didn't transplant enough distally. I think if I had done it multiple times, I would be in a much better place.

Thing is, the process is not as gross as it sounds. When it came time to plug the enema bag in, I was thinking "It's not like it's going anywhere clean to begin with." I just grabbed a magazine, lied down in the shower, and turned from time to time.

I didn't use my spouse. I got a donation from a co-intern (medicine) of mine from back in the day.

These were my criteria for those interested:

1) Willing
2) Same gender (I didn't want to worry about fluctuations in hormones)
3) Not menstruating or pregnant (for same reason above)
4) Not diseased (no HIV, Hepatitis, etc.)
5) History of iron gut (can eat anything, or bounce back from food poisoning)
6) Thin (you can "transmit" obesity)
7) Cheerful (you can also transmit depression)

I found this procedure but of course it is for CDIFF. I believe I will have to use more of the solution and of course do more transplants for my condition. I plan on doing at least 7 of them and whether I can get my sample daily is another question. I will make sure we both get plenty of fiber during with smoothies etc to promote a good quality stool from my donor.

Here is the video of Dr. David A Johnson and him talking about it.

"Fecal Transplantation for C difficile: A How-To Guide"

http://www.medscape.com/viewarticle/779307

Post Edited (twiggs) : 12/5/2014 8:34:45 AM (GMT-7)

Good luck, I hope you have great success with it!

Good Luck !!! You are lucky to have a supportive GI!!!

One tip from DD's experience..Try to do it during night so that you can keep it the whole night while sleeping.
We went little extreme by keeping DS-Donor (He has good control)to hold it till 7:00 pm.

Kamakya....We did for 5 consecutive days.No gap in between.

Update

Sorry for not updating but here goes and due to time will make it short and sweet.

My wife was cleared to be a donor by my gastro whom she is also a patient. The tests all were negative so we proceeded.

I had to order some things on the internet because I could not find them in stores which delayed me a couple days. I would suggest also if your going to do this to just use the internet. I ran around all over and wasted gas and my time.

I performed my first transplant 4 days ago. I was not able to hold this one as I did too much at once. I was excited and did a whole 500ml. It lasted about 10mins.

next day no donor poo.

3rd day another donor poo and was able to hold this one for 30 minutes. It seems if you don't clear your colon it acts as a colon clearer.

Today this am I did my 3rd which I was able to hold for 45 mins and I had gone to the bathroom prior and thought I cleared my colon but did not. My system is moving slowly lately so there was more in there that came out. I was smart this time and sealed the 500ml container so that if I was not able to hold the first one I could do another for which I did. The first one stayed in for 45 mins then I had to let it go along with stool. I then did another one immediately which I have held no problem and its been hours now.

So far so good. I do feel fine and I am doing a half bottle rowasa with a canasa nightly. I guess time will tell. I do feel like some that you have to do them for a long time and cannot expect things to turn around in a week or 2 or 3. Like the guy who I am using as a guide it took 6 weeks. I plan on doing them as long as they do not make me worst. I have enough supplies for months.

I will keep posting.

I am using a 8oz bulb enema syringe and the rest of supplies that Hurst used.

Merry Christmas to All !

Post Edited (twiggs) : 12/19/2014 9:24:08 AM (GMT-7)