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Can we do our own study here??

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Ulcerative Colitis
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Posted 2/18/2010 1:07 AM (GMT 0)
Hi, everyone...
this forum is great. You all have so much information to share. I have been reading the fecal transplant thread with great interest. There is a lot of frustration about lack of studies. As a physician, I share that frustration. I know it wouldn't be scientific, but perhaps we can harness our own data, as a group.

To the moderator: Can we create simple survey questions?

I would like to know the answers to the following questions:

1) Did your UC start during or shortly after a course of antibiotics?
2) Did fecal transplantation yield permanent remission?
3) Did fecal transplantation yield temporary remission (more than 1 week)?
4) Did fecal transplantation have no effect?
5) Did fecal transplantation make you worse?

Thanks,
DocGP
Posted 2/18/2010 2:13 AM (GMT 0)
As a fellow scientist, you should know that this site would not yield a large enough sample size for a viable study.
Posted 2/18/2010 2:16 AM (GMT 0)
I know it wouldn't be scientific, nor viable in that sense, but I think it would be interesting in a case series sort of way. Reading a survey would be a lot easier than looking through so many threads and posts.
Posted 2/18/2010 2:52 AM (GMT 0)
Yes a simple unofficial survey is perfectly fine here as long as it is not used for research papers or official research studies; if that was the case then it would have to be approved by the administrator. Just keep in mind that there are a small handful of people actually doing this procedure.
Posted 2/18/2010 4:29 AM (GMT 0)
I think we *maybe* have five people that have done it.
Posted 2/18/2010 3:01 PM (GMT 0)
I would first say that I really like the idea of this kind of 'natural history experiment'. I'm sure there is a lot of good data to be mined from this group, although I don't know if the vein on fecal transplantation is that rich.

I always thought that taking probiotics involved much the same strategy as fecal transplantation but without the feces. If that is the case, perhaps a follow-up on probiotics would be useful (if possible). Lord knows there is a confusing hodge-podge of choices out there. It would be nice to achieve some clarity (however limited) on which strains/brands are helpful and under what circumstances (major flare, mild flare, remission).

I haven't tried fecal transplantation but I can answer your first question - yes.
Posted 2/18/2010 9:28 PM (GMT 0)
I don't think I would ever try this.
Posted 2/18/2010 9:43 PM (GMT 0)
Sounds good but what I would really like to see is how so many people on this forum seem to survive and thrive without meds. For example in jars05 signature he indicates having UC for over a decade but is not taking meds. Congratulations! I know there are dozens of others just like him.
Posted 2/18/2010 11:26 PM (GMT 0)

DocGP said...
Hi, everyone...
this forum is great. You all have so much information to share. I have been reading the fecal transplant thread with great interest. There is a lot of frustration about lack of studies. As a physician, I share that frustration. I know it wouldn't be scientific, but perhaps we can harness our own data, as a group.

To the moderator: Can we create simple survey questions?

I would like to know the answers to the following questions:

1) Did your UC start during or shortly after a course of antibiotics?
2) Did fecal transplantation yield permanent remission?
3) Did fecal transplantation yield temporary remission (more than 1 week)?
4) Did fecal transplantation have no effect?
5) Did fecal transplantation make you worse?

Thanks,
DocGP

This is actually a very good idea and I like the idea that you are trying to figure this thing out..."What is ulcerative colitis?" Well, IMHO it's not a condition of the bowels (see my sig), there is no inflammation on my colon, yet I have the disease.

I have gotten nowhere trying to figure this thing out over the past two years; but as of last Saturday I think I maybe onto something, which explains almost everything about UC symptoms, including why smoking helps some of us, why avoiding process sugars helps some of us, why taking anti-fungals helps some of us, etc. I just need more time to look into it, but early results are very promising.
Posted 2/19/2010 1:11 AM (GMT 0)
I think the study would be useful. This is the one Internet site that I found the most people who had actually tried FT. One question I'd like to see is whether you tried FT while flaring (and what exactly a flare was in your situation). In my case, I was bleeding with no other symptoms and it didn't work for me - in fact it seemed to make the bleeding worse. I'm thinking about trying it again once I've been done bleeding for awhile and tapered my rectal meds.

Kathy
Posted 2/19/2010 2:04 AM (GMT 0)
1) Did your UC start during or shortly after a course of antibiotics?

Yes. My digestive issues started after being on antibiotics. I had a horrible skin inflammation from my early to mid 30s and I was taking antibiotics for it. Many of the antibiotics I took are known to destroy fecal flora. Before that, I had been on antibiotics off add on for many things, including acne and a severe sinus infection that lasted six months.

2) Did fecal transplantation yield permanent remission?

No. I had to take antibiotics three times after doing fecal transplantation. Each time, I took a stronger antibiotic. I started flaring within two months after the third time I was on antibiotics. I read somewhere that one can get antibiotic-associated colitis anywhere for up to two months after being on antibiotics.

3) Did fecal transplantation yield temporary remission (more than 1 week)?

Yes. I was in remission for two years after doing fecal transplantation.

4) Did fecal transplantation have no effect?

No. I noticed the effect immediately. I didn't have to go as frequently. The bleeding lessened until it finally disappeared on the third day.

5) Did fecal transplantation make you worse?

No.
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