success (knock on wood) with transplant during a colonoscopy

[bpagan]

You're an inspiration to so many, feelinghopeful. Congratulations!

[feelinghopeful]

Thanks bpagan!

So, it's my 12 week anniversay today. This good news overshadows the haze I'm in from having a ridiculously bad cold for over a week and no sleep as a consequence for equally as long. I was intending to celebrate with my first bottle of red wine in... gee, I can't even recall. Must be about six months. It's the thing that frightens me the most and I wonder if wine is a bit too ambitious given I'm already in a pretty fragile state from the cold. We'll see how I feel tonight. Was going to go out to dinner and everything but I wonder how much I'd even taste. I have a bit of a quirk with precision and I'd hate not to have that celebratory first glass of wine on exactly the 12 weeks mark but it probably would do me some good to try to soften up on this stupid trait, anyway.

This AM I had full strength coffee with no ill effects whatsoever so that is really good news, too. I needed it because the cold has me so dehydrated I'm experiencing a bit of the opposite of the runs, if you know what I mean. I've lost 3lbs of water with this thing even though I'm drinking decaf tea like crazy. Can't keep up with the fluid loss.

Well, I just had to document this momentus date with a post. I'm not sure what the next big hurdle date is, if there is one. Well, thank you all for being here and I guess a year would be the next biggy? Let's hope I make it.

I wish everyone great success with your respective treatments and that we see the serious recognition this disease deserves soon. My GI told me that fecal transplants are known to treat PI-IBS as well as C-Diff so maybe, soon, those of us with life altering IBS will also see an end to their struggles. It will happen. We just have to keep getting the word out, not get discouraged, and be here for one another. Help is on the horizon!

P.S. I must say again how utterly shocked I am by the recovery of my knee and hip pain. With that, too, I keep waiting for it to return like it was just a coincidence that it went away with the C-Diff and IBS. Every single time I run up my front steps I'm in disbelief! You know how people walk when they have stiff knees? You tend to go a bit from side to side instead of walking in a straight line. I'd noticed myself doing that for a bit and it is simply gone. Poof! I crouch and stand without hesitation. Dramatic difference from just months ago. If somebody else had written this I wonder if I'd totally believe it without more proof. The role of intestinal health cannot be overstated.

[feelinghopeful]

Yesterday marked month five C-Diff free. About a month and a half ago I had an incident with garlic that took about a month to completely recover from. My guts were just not the same after that, however, a week or so ago things returned to perfectly normal. What a relief! I immediately did some reasearch and found a number of links that may be of interest to any of you who eat garlic (though I'm sure few if any recent C-Diff sufferers would be so crazy as to eat the approximately 6 cloves that were hidden in my mother's food). I never feared I was getting C-Diff back (no smell) but my mornings just didn't start right for quite some time - if you know what I mean. Disruption of intestinal flora doesn't automatically mean C-Diff but it does change how things work for a while. Anyway, wasn't going to post these for a number of reasons but I think it's good to get as much information out there as possible. Good luck to all and thank goodness, I'm 100% again. Wondered if I'd blown it for a while there, then suddenly, voila. Whew.

Read paragraph under "Sulfur content" http://news.bbc.co.uk/1/hi/health/1939485.stm

Read paragraph under "What about enteric coatings" http://www.allicin.com/

[feelinghopeful]

Snooping around the internet I came upon this very simple and interesting research somebody did. If you take garlic pills with your probiotics, maybe not such a good idea according to this:

http://www.curezone.com/forums/fm.asp?i=757185

[klt03301]

Wow! What interesting articles, feelinghopeful! Thanks so much for posting. I've been eating a lot of garlic lately because I thought it would be good for me. Maybe I've had just a tad too much lately :-)

Thanks again,

Karen

[feelinghopeful]

Who knows, maybe it's the garlic. I have many more papers and studies where they came from. One stated that garlic introduced intragastrically killed 50-60% of the intestinal bacteria of rats and 80% of the bacteria in their appendix :( Taking enteric pills would be a scary good delivery system. All I know is, even if the jury is out and even if garlic is great for some people for certain conditions, I have enough evidence to convince me that taking garlic with or after c-diff (at least for a while) isn't something I would ever do willingly. I'm sure it's not that simple, like how much of it reaches the colon depending on how it's cooked or not, how well it'd digested or not, if it's in a pill, etc., but it's a natural antibiotic and it kills the stuff we need (I have links and links that attest to this) so I'm staying away.

You'll be feeling better again soon! My best to you, klt.

[feelinghopeful]

If this was ever posted, sorry. I found it really interesting. I could not understand why PPIs were an issue since C-Diff is spread by the ingestion of spores that aren't killed by stomach acid anyway. In seeking an answer I came upon this study. If this kind of stuff bores you just scroll down to the "Discussion" part for the meat of it. Also interesting is the part about spore germination in second to last paragraph:

http://www.pubmedcentral.nih.gov/articl ... 932506#r11

[feelinghopeful]

My six month anniversary. Wanted to post that before midnight.

[Suezer]

Happy Anniversary!!
That is great news.

[feelinghopeful]

Thanks Suezer!!!!!!!!!!! I posted somewhere that I believe with diet you can rid yourself of the bacteria and spores. A few people questioned me, how and why do I believe that. As serendipity would have it, I stumbled onto new info (bacteriocines) that reinforces what I believe, that if you happen to have the bactieria necessary to fight this fight, you need to foster their health. If you don't have them that's another post but certainly not certain defeat. Between bacteriophages and bacteriocines (will post one brief paper on them to spare you too much reading) this fight might be winable. Some might need adjunctive help but now this already gets too unwieldy so I'll stick to the main point:

http://bases.bireme.br/cgi-bin/wxislind ... xSearch=ID

It took me many hits to finally get C-Diff after exposure. I think I had some indigenous bacteria that was antagonistic to C-Diff and really gave it a run for its money. Then I wiped most if not all of them out with back to back to back antibiotics. So, I'm reading all I can on what to eat to foster my healthy bacteria (without going out of my way to starve the C-Diff, don't want any starving C-Diff) so that whatever I have proliferates. I'm sure other strains of Closstridia produce agents against coexistence with C-Diff. I have no way of knowing which bacteria and consequently bacteriocines and bacteriophages I have but I'm going on faith here that if I keep making my intestinal flora stronger, the chances of C-Diff survival decreases for many reasons. Higher acidity, hopefully the agents mentioned above and also simple crowding out. Possibly C-Diff bacteria doesn't even spore when killed by natural antibiotics produced by competing strains or by phage viruses and if it does try, I read bacteriocines kill fast so it might not have the time to spore. The only glitch in my model is whether the highly acidic environment would be enough of a threat to cause C-Diff to spore but then again, I don't think spores linger forever in the absence of vegetative bacteria. They do shed. Another glitch I have is that the drugs we take to kill C-Diff most likely targets other Clostridia... which would be a drag since it's most likely other clostridia that would produce agents targeted at C-Diff.

They're going to (if they haven't already) produce clostridia probiotics or treatments that naturally produce agents against to C-Diff. They already probably do but I'm unware of the science behind it - like a clostridia strain I read about that seems to helf fight C-DIff. Once they truly isolate C-Diff's biggest antagonists they'll come up with an approach. And even if one has to take the probiotic for a certain amount of time because it's not a colonizing strain for you, so what. You keep taking it until the C-Diff is gone.

Armchair researchers oversimplify things, which is precisely what I'm doing. I understand the complexities, I just feel there is truly hope in this approach/approaches.

Which leads to fecal transplants and why I've believed they haven't worked for some people. For another day.....

Good health to all here.

[feelinghopeful]

The sampling given of this book is fantastic. The search I did on bacteriocines brought me to page 15, which is mint but the whole thing is great. It's older so infinitely more readable than some current stuff - it's more English than biospeak. Some of the info might be skewed due to limitations imposed by antiquated equipment and testing methods but it's still pretty great. Thinking of getting the book.

http://books.google.com/books?id=QbKPu- ... lt#PPP1,M1

[feelinghopeful]

Well, it's now my 26 week anniversary (exactly half a year). You get two 6 month anniversaries: 4 weeks times 6 and the true half a year so here I am absolutely furious with the video I just watched from media reports by three GI specialists. Was just going to post a quick hurrah earlier but after watching that... I'm livid. How on earth can those people, three 'specialists' (I think most people here know as much if not more than two of them) and a moderator, talk for 1.5 hrs, I believe, and not one mention of fecal transplants? What a crock. They even briefly mention how probiotics don't work because they don't hang around but don't take it one step further to discuss why, which should then lead to why transplanted bowel flora does stick around.

I had a simple question for a lawyer yesterday. I got half an hour of meandering that left me right where I started. That's how I feel after watching that video. People think in terms of justification of their existence. The last guy did have some interesting things to report but how on earth, when discussing alternative methods of treating recurrent C-Diff can you NOT mention fecal transplants. They even danced around the very real fact that many people relapse because they cannot regain sufficient flora but mainly in the context of pulsing. The role of diminished (and often unrecoverable) flora was given such minimal importance in the grand scheme of the show it was beyond comprehension. They more readily discuss and actually do pull out somebody's colon before considering a fecal transplant. It's criminal.

I'm all for looking into other mechanisms at play, to looking into vaccines and immunoglobulins, etc, etc, but the stupidity of ignoring a potentially life saving, simple solution is mind boggling. Especially with the high incidence of PI-IBS after other forms of treatment. Very discouraging.

[LindaSp]

feelinghopeful,
Good morning. I did not watch the video yet. In nursing, evidence based practice is huge now. Have there been many research studies done whose results show the cure rate of fecal transplants? I remember one that I read on this web site. If not, maybe that is part of the hesitancy. More studies should be done and published.
Linda

[feelinghopeful]

Linda,

In case you don't see that I responded to you elsewhere, thank you for the insight.