FECAL TRANSPLANT Studies & Suggestions

I read with interest your post about diet/testing and certainly think it's worth investigating. I am also interested in the fecal transplant. Prior to having my colectomy I was looking into fecal transplant for UC but felt the research was still being conducted and I couldn't wait for the outcomes. Intuitively it makes sense that something useful for colitis would be useful for pouch inflammation. I've attached a few links that my provide a bit of information. I will be looking forward to hearing about your experience. Good luck to you.
http://www.ccfc.ca/site/c.ajIRK4NLLhJ0E/b.8343767/
http://www.ihe.ca/documents/Fe...on%20FinalReport.pdf
http://www.ctvnews.ca/health/e...owel-diseases-1.1445

JHendrix,

Wow, that is a lot of information but thank you sending this along.

I had Ulcerative Colitis since 1985, Colon removed in 1993, Take Down Pouch created in Jan, 1994, a host of other surgeries associated with all this and now I consistently get Pouchitis, like 3 or 4 times a year.

Medical Doctors only treat how they are taught and the Drug Companies push certain drugs, all have terrible side affects and I have had it. So this is why I am trying to find an alternative, but a healthy way of doing things.

I will keep everyone informed how I am doing along the way every so often. But I have to give this new therepy a chance to work. Rome wasn't built in a day and I spent a lot of years putting bad toxins in my body.

Rocket

I am a little unclear about your statement regarding endrin and sodium benzoate. Neither of these are bacteria (harmful or otherwise). Endrin is an insecticide that was in use at one time, but has not been in use for 30+ years. It is banned in many countries. I would suspect most of us are sensitive to it. Sodium benzoate is a preservative, so if you avoid soft drinks and packaged foods (eat fresh), you can avoid all preservatives.

I do agree with the notion of not feeding bad bacteria in the gut. That is the whole premise of low carb, and especially sugar and refined starches. Probiotics promote growth of useful bacteria, as do prebiotics. Not sure you need organic to accomplish this, but organic can be a good way to go, in general, if you want to simplify your food choices. Just be careful, since lots of food suppliers use terms like natural and organic, but do not follow any set rules.

As for the fecal transplant, good luck with that. Insurance will only cover it for C. diff treatment as far as I know. Plus, doctors are not offering this as a treatment without an appropriate diagnosis. It might become more mainstream at some point, but not yet. Why isn't the facility that is recommending it doing the procedure or referring you to someone who can and will do it? Seems rather cruel to tell you what you need, but leave it to you to find a provider of it. This is why some people have resorted to do-it-yourself methods. I just think the jury is out regarding pouchitis and fecal transplant. I suppose the fact that pouchitis has many causes is a factor.

That said, I know you have been struggling with chronic pouchitis for a very long time. I hope you find a solution and don't go broke getting there. There are many here in the same boat as you, so you are in good company.

Good luck!

Jan

There is some research on the horizon. Maybe your best bet would be to enroll in a clinical study?

This one is at Emory University in Atlanta, GA. They are not recruiting yet:
http://clinicaltrials.gov/show/NCT02049502

This small study showed mixed results for pouchitis, depending on which bacteria were problematic:
http://gut.bmj.com/content/62/Suppl_1/A162.1.abstract

But honestly, it is not like there are lots of studies out there. Still, I like the idea that they are looking at different approaches. I wouldn't be too hard on the GIs who don't give you novel ideas. They do not want to offer unproven methods because that is how complaints and lawsuits happen.

A family practitioner is not an expert in gastroenterology, so he can make recommendations based on general health and well being without risking his license or reputation. This particular doctor specifically advocates a complementary approach to medicine, so he is completely within a patient's expectations. This may or may not be a good way to get medicine, but at least you are getting what you are seeking, which is a new approach.

Jan

Be careful with supplements; they are also drugs that are not regulated and have not been put through rigorous testing for quality or efficacy. You have to do your homework in this arena. And I would be double leery of any doctor that's peddling supplements from his/her office.

Sue

I have not read all of these sites but did research Fecal Transplants when I had c-diff that was recurring. There are ways of doing it yourself that some people do. The donor feces isn't studied to make sure it's what is needed and it isn't introduced necessarily as it is in expensive medically supervised ways. This is my response to Jan's good point in that your insurance is probably not going to cover this. BTW I decided not to try this approach.

While I was diagnosed with IPS and slight pouchitis I was finally caught with pouchitis in my annual pouchoscope last week. I faithfully take my VSL#3DS daily for pouchitis prevention plus s.boulardardi for c-diff prevention daily plus eat several Greek or other yogurts daily. Do you actively use probiotics? Someone posted here last week that Dr. Shen said to use them when taking antibiotics but to take them hours in-between each other. I know I take them and still have pouchitis but think it would be worse if I didn't. I had 2 other tests, one being a CTscan and they both said that I had an inflamed pouch. So my entire pouch is inflamed as it was detected in these 2 other tests. Therefore it was not just verified by visual inspection and the biopsies.

I like your out of the box approach searching for a solution to this as I hate taking antibiotics. I'm back on one again as the tests last week caused my inflamed j-pouch to flare up more.

Jan... thanks for the current info re fecal transplant and pouchitis. A clinical trial is a great idea if one is able and gets accepted. I look forward to the results.

Hi All,

I put a call to my GI yesterday and he was not in but I presented my case as I have explained here on this site to the Nurse. The doctor was not in but he is supposed to call me back today.

I am just not fully convinced that only drugs is the way to go. The doctors had told me and I have been to different GI doctors that told me that my diet has nothing to do with getting Pouchitis. I didn't agree with the doctors then and after getting my test results, I really don't agree with that statement.

The majority of my problems is feeding my gut with bad bacteria so that is why this doctor has told me to only eat Organic Products which is what I have started to do. Plus he has giving me Supplements which has to be better than all these drugs I am taking.

If you checked out the link I first sent, it provided lots of info on this doctor located here in Stockton, NJ. I feel its a drastic move and changes to be made for my diet but sticking to the drugs since 1985 when I was first diagnosed with UC has not changed anything. I wish back when I had the surgery in 1993 that my doctor mentioned fecal transplant than.

Anyway, nothing will convince me that to continue this course of action with more drugs will make any difference or improve my well-being for the rest of my life.

I realize that in lots of many cases, surgeries are the only option. I just wish the medical profession would look at other alternative medicince and healthy ways to improve one's body. Bt the drug companies push drugs and this is what the teaching seems to be with the medical profession.

Rocket

Ok so I did fecal transplant for pouchitis. Did not take. Our new man made system is different than a normal persons system and we are missing some kind of valve between our pouch and small intestines. Maybe this is why. IDK. I follow the Fecal Transplant Book.
I also take many anti inflammatory vitamins and tried Paleo diet, no carbs, no sugar to starve off the bad bacteria. I tried resistant starches to help grow the fecal transplant new bateria, I work with a functional med doctor, I tried it all. I gave up and went back on Xifaxan and will never look back again.
I hope you can find good results with whatever you try.
PS I've been eating organic for 14 years now, make my own kefir and 24 hour yogurt, only grass fed meats. My food bills r sky high. Oh, I'm at the gym 3 to 4 times a week. I wish you well.

PS
The Emory Trial is only open to Emory Hospital patients although my GI told me to give her the info and she would try and get me in. I haven't done it yet cause I'm happy being back on drugs and the Fecal Transplants that I did didn't hold.

I just sent u a private message

Allycat,
Are you still taking Canasa? I'm asking as although the pathologist called my cuff results pouchitis my GI considers it still cuffitis and says to continue with my daily use of Canasa and taking Augmentin and Flagyl when I have to for the pouchitis in the rest of my pouch. (I can't take Cipro - got c-diff from it before.) I'm glad you posted about your diet. I've changed mine so much, which I consider for the better, since getting my pouch that I just don't agree with everyone in the FB groups that are stressing diets. I want to tell them about all the diets I went on with UC that failed but am keeping my opinions to myself. It's a journey you have to do for yourself.

I'm upset the fecal transplant didn't work and why can't they put in that valve? Just open us back up and do it! (not serious)

Since I started to eat Organic for the most part, and taking these supplements, I am feeling better and am confident.