I find it kind of horrible that...

[dwilliard]

...this site has a lock down on posting how-tos for the fecal transplant procedure. It is the ONE method available for people with a 100 percent...yes, 100 percent cure rate. And this site is keeping that information from all of these suffering people. It makes it difficult to read all these heart wrenching suffering postings from very ill people that, like me, do not have access to any MD's willing to do the transplant procedure. People! Do a google scholar search on Dr. Silverman and Fecal Transplants. That information IS OUT THERE FOR FREE FOR ANYBODY TO USE TO HEAL THEMSELVES without further risk to their health. Be sure to choose a healthy infectious disease free adult family member (infants can carry c.diff).

[Bobbie]

This is not a medical site - but a support one. We cannot offer you medical advice - but can tell you what worked for us. Several have used the method you describe and will undoubtedly be in touch with you.

Nothing has a 100% cure rate. And there are protocols you have to follow in the method you are talking about. Membership in this site is free, and the site is staffed with volunteers (unpaid) who are giving up their own time (and some still have C. diff) to help others. "Don't kill the messenger."

[getwellsoon]

You are judging the whole site because the owner would prefer not to be held liable for anything that could go wrong. I find that kind of horrible. I am one who has suffered for 18 months with recurrent CDiff and if not for the wonderful people on here I would have lost my mind. AS you state, and also is stated on here, the info for the home infusion FT is out there. It is readily available on the net. We talk of it on here all the time so I don't know where your complaint is coming from. We also have a member who willingly emails the procedure to people who IM her so don't know why you have registered your disapproval with this site by calling us horrible. I'm a mod on here now and all we do is try to pass on info that has helped us. People must follow up with their Drs. and look for info on their own. Why don't you start up a site that gives out the exact protocol for the procedure if you feel so strongly that we are horrible on here to not post it. Anyway, I'm glad you are well now but unfortunately there are many on here who have done the FT and are still suffering or relapse. Hope you stay well. Carol

[Fire2]

Dwilliard:

The site has basic operational ground rules that allow it to successfully operate and has helped countless folks as well as educate a large number of Doctors.I understand your concern and frustrations, but the rules are rules. If the policies of the site offend or don't follow your expectations, then the exit key is always available........

Fire

[dwilliard]

Hey, this is a venting thread. I was VENTING. I didn't say the SITE was horrible nor did I say the people on it were, either. I said I thought it was horrible that the site cannot provide direct links to the procedural information that is out there. It is good that FT is talked about here, and it's good that the site encourages people to talk about it to each other, but when information isn't shared because of liability issues, it's more a statement on how litigious society is, no? It's saddening that people have to put their liability concerns before complete, open access to information. THAT is what is horrible. I didn't say it wasn't necessary, I simply think it's telling about priorities of humanity nowadays.

I also have issue that it's more common for people to actively avoid helping someone who is getting beaten up or abused all because they don't want to be involved or become liable. Should I vent about that here as well? ;-)

I've been a mod on a forum before; I know how it works. And regardless of the selflessness of the time and energy the mods put in for the cause, it doesn't take away from the fact that it's still a rather sad statement that liability comes first-no matter what the venue. Personally, I found it very difficult to find an MD that would accept someone in their study for a FT, and it took me a VERY long time to find the exact procedure. I had to dig through countless scientific journal articles. And I work in medical research; I know how to find information like this and have access to journals that most people have to pay to read. I can't imagine someone who is very very ill and suffering being able to execute all of that without the resources I had at my fingertips. It's very very frustrating to have c.diff, and it's worse when so many doctors and hospitals don't know how to handle it or treat it properly. I had to tell my MD what a pulse-taper regimen was and how to write the prescription. And I had to tell my GI specialist what a FT was! So all in all, I would like to see access to the FT procedure given to as many people who have or have relatives that have c.diff.

Frankly, c.diff is only going to get worse. Most MD's are seeing an upswing in cases along with an upswing in the more virulent strains. Maybe it's that antibiotics were over prescribed, or maybe c.diff is mutating to be hardier. Or maybe both. I do think c.diff will approach epidemic proportions and become pandemic, so maybe things will start changing in the overall view of FT in the medical field.

And as for me, being "well now" is partially true. While I haven't relapsed in a year and, therefore, am in the more enviable position than most of the individuals on this site, I still have rather severe post-infectious IBS. Not quite well, but "better", I'd say. It's a long road to travel, to be sure.

[Bobbie]

Realize you are "venting" and have evey right to do so. However, do you want the owner of the site who provides our webmaster and pays our domain fee and the moderators (many who are ill themselves) in the middle of a legal "brohaha" because we we trying to help others? We aren't in the medical field and could be "in big trouble" if we provided medical advice.

You are very informed and involved in your treatment which is admirable. And, yes, many docs. know "squat" about C. diff.

Many people with C. diff. develop IBS afterwards. I've had it after every episode and have it now. Sometimes it evidently goes away on its own.

Since you have mod. experience, perhaps someday you'd like to be one on this site and spend many hours trying to help others with little reward besides an occasional "thank you" and the constant fear of giving medical advice inadvertently. I agree, "This is a litigious society." Thus, we have to live within its boundaries.

[getwellsoon]

Reread your original statement. You said" And this site is keeping that information from all of these suffering people." I think that is a little more than venting, you hurled a direct insult at the site and all of us Mods on here. You accused us of keeping info from suffering people. That is really insulting and horrible. When I think of the good that we do and the help and info and time and blood and guts we pass on only because we care and are sufferers ourselves it makes me want to vent. I will just chalk it up to being naive about the world and maybe you had a bad day, whatever. And please do check your info, the FT is not 100% cure. So far nothing is. There are folks on here who have done the FT and it has failed so please don't give people false hope that they definitely will be cured because they may not be. Bobbie said it well, maybe since you have mod experience you can relate to how bad your vent has made us feel. Glad your FT worked for you but we have one on here posting right now that has relapsed after a FT. Anyway, hope you continue to do well and that your IBS goes away also. Carol

[Kathy George]

You appear to be argumentative and have entitlement issues. I certainly do hear your frustrations, but we all need to realize right from wrong. Giving out medical information without having a PhD behind you name is both absurd and impracticable.

[Fire2]

I have re-read the post and had a couple of my ER Doctors read it and all agree it was a direct shot at the Moderators...so be it.....I would ask you to share your experiences and knowledge with the others using this site. I also have worked in the Medical field and have full access to all of the Medical Journals and agree that it can be very helpful. I would also ask that you check the accuracy of the information that you share, as false information can lead to serious consequences for the folks using the sites. FT is not 100% successful that is a very well documented and proven fact. There is nothing that is 100% successful in treating C-Diff as the disease affects each of us differently. There are a large number of us that have battled C-Diff and it's resulting side effects for years. We have a vast amount of knowledge that we share with the others on the site. As I said earlier I would like to see you contribute to the experience and knowledge pool. Remember if it doesn't meet your expectations...the exit key is always available.

Fire

[Bobbie]

Thanks, Fire. I always love it when people complain about a site that gives free support. Well said!

[mayotte]

My goodness....I only have admiration and appreciation for this site and the moderators. I visited often when I was so horribly sick and did learn more from this site than from my doctors . That said, I fully understand why medical advice really can't be given here. It could cause legal problems for this site and then where would we be?