Those of you with open minds re: alternative medicine: WWYD?

SBMBride406 · February 2010

DISCLAIMER: If you are squeamish re: bodily fluids, please stop reading this now.

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don't say I didn't warn you

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I've discussed this on here before, but I have this recurring bacterial infection of the colon called c.difficile. I was exposed to it in the hospital after I had Marino and was already very sick. You wouldn't get the infection unless you were on antibiotics and already sick (I've managed not to give it to DH or DS after numerous recurrences and sharing a bathroom). Anyway, I almost died from it in the hospital, since my body didn't respond to the antibiotics (you have to treat it with a certain antibiotic, Vancomycin and probiotics). I spent an additional 10 days in the hospital and it took me 5.5 months (!!!!) to get rid of it the first time I had. If I was weaned off the Vanco, I was sick again within a week. For me, the symptoms are: fever, constant diarrhea (at it's worst, I was probably going 75 times a day), bloody and mucusy stool, nausea, loss of appetite, extreme fatigue and dehydration. Since I had Marino 19 months ago, I've had it 5 times (the first 3 in the 5.5 month period, once in Sept and I have it now).

My GI doctor thinks the c.diff bacteria just hang out in my colon and anytime I have a bacterial infection or virus, they see an opportunity and take over. Luckily, I am healthy enough to fight it. Older people often die from this infection. Currently, I am young and healthy, although its certainly taken a toll on me and my already weak colon (I have colitis, too).

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Here's the gross part:

There is this controversial therapy for the infection: fecal transfer. There's a doc in Minnesota that takes feces from a healthy family member, takes out the unnecessary particles, and uses a NG tube (in the nose) to transfer the healthy flora into the colons of people in my situation. This ideally completely changes the balence of flora in the intestine, making it healthy again.

Would you consider this? Its past the clinical study stage (in which 46 our of 48 people went years without a recurrence) and is now an accepted medical procedure. Most people are horrified by the idea, so its not that common yet. I would need to fly to and stay in Minnesota with DH and DS, so it would be costly. But I'm thinking I don't think I want to deal with this infection several times a year for the rest of my life.

What are your thoughts? Too gross to think about?

adpilove · February 2010

I would definitely give that some good thought. Yes, the thought of it is gross but if this procedure will save you from getting sick multiple times a year and create such havoc when you are ill.....oh you bet I'd get on that. You don't have to tell anyone you did it (besides us), so that would alleviate people forming opinions, telling you you are gross, or whatever ridiculous comment could come your way, etc.......

I am in the process of considering this very in depth procedure for my migraine headaches. It consists of inserting this metal like thing at the base of my neck. BUT.......obviously its not like yours where the gross factor weighs in.

I hope you start to feel better soon!

MauiBride2008 · February 2010

IMO, I would do whatever it takes to not feel this way all the time. I have not heard of this procedure as I'm not really familiar with it, but I would do it! And it's not like your aware or awake during this procedure (are you?), so it doesn't really matter what happens as long as it helps you so you can always be 110% for Marino and finally feel like yourself again. HTH

beachbubbles · February 2010

for sure i would try this-if there has been a great deal of success with the therapy than yes-go for it-even if it does have a gross factor. i am sure you know this already but taking pro-biotics on a regular basis is also super important-and it may help to switch to an alkaline diet and eliminate gluten and dairy from your diet-also have you tried doing a colon cleanse with betonite clay-that is also apparently really helpful too-good luck!

vanilla15 · February 2010

I agree with pp...do whatever it takes to be healthy. There are all kinds of medical things that are kind of gross when you think about it (using pigs arteries in human hearts & isn't pennicilin just mold?) but who cares...whatever heals us! And of course you are healthy now, but what if you get the infection again when you are in a weakened immune state? To me, it is a no brainer!

MrsNJSwimmer · February 2010

I agree with pp... I would do it if it means you have that much of a chance of getting better. What happened to those other 2 people (of the 48)? Do you know if their symptoms got somewhat better? Worse? It's definitely worth considering, and you don't need to share with people exactly what this "medical procedure" is - that's all you have to tell them.

Surfinbride · February 2010

I have GI problems from reactions to sulfite and sulfur (in just about everything, including organic fruits/veggies that get sprayed with natural sulfur and have it in the soil). Because of that, I know what you mean when you say diarrhea. It isn't what most people experience... it's so horrible, you can't leave the house... and you don't have energy b/c you are depleted in nutrients.

Because I have some idea of how miserable you must feel, I would say try anything that has a proven history to remedy your condition.

However, the treatment you mention seems odd. We do so much to stay away from feces. We wear gloves when we garden to stay away from fecal bacteria in the soil. We are super clean (nearly germophobic) in a public bathroom. We have solid surfaces in our bathrooms, which we disinfect. We Purell our hands. We thoroughly wash all veggies that come from the soil.

Based on that, my brain says POO = BAD.

What are they trying to get out of it to benefit you?

What else could be in there? Could that harm you?

What are your other options?

lola808 · February 2010

If the odds are in your favor and you've got a few doctors agreeing that this is a good option, I would definitely pursue it. A quality life is worth the price. And I wouldn't even be concerned about it sounding gross. So many medical procedures are hard to think about -- just because this one deals with poop doesn't make it any worse! Somehow, I have actually heard of that procedure before and it seemed to make sense. GL!

SBMBride406 · February 2010

Thanks for your encouraging thoughts. Here's a little article about it

http://pokedandprodded.health.com/2008/07/10/fecal-transplants/

Basically, the article says that prolonged antibiotic use (par for the course with c.diff) kills the thousands of good bacterias and probiotics (which I've taken daily this whole time) can only restore a small fraction. Healthy feces can put the thousands of good bacterias back in my colon to fight off c.diff so it doesn't come back.

Interestingly, the article says the reason its not popular is that drug companies don't benefit, so there's no money put into marketing of the treatment.

cecig · February 2010

Wow Sara, sorry you're having to deal with this again. If I were in your shoes, I would totally consider it. You deserve a better quality of life and to finally be healthy. You are far too young to have to deal with something like this.

SBMBride406:

Interestingly, the article says the reason its not popular is that drug companies don't benefit, so there's no money put into marketing of the treatment.

And this part is just sad!

mrspresley · February 2010

I agree... I would probably try it... if it's just a matter of being grossed out, then that's not really reason not to do it IMO. (plus being in my field of work i don't really think that is gross anyway!) if there are risks associated w/it where you could get sick, then i'd maybe think about it a bit more. sure you are healthy now but what about when you get older? you don't want to have it the rest of your life and have it potentially kill you when you become older or immunocompromised.

DH doesn't deal w/adults but he is on GI medicine right now and working with a lot of pediatric GI specialists so i will ask him about this and see what he says....

SBMBride406 · February 2010

mrspresley:

I agree... I would probably try it... if it's just a matter of being grossed out, then that's not really reason not to do it IMO. (plus being in my field of work i don't really think that is gross anyway!) if there are risks associated w/it where you could get sick, then i'd maybe think about it a bit more. sure you are healthy now but what about when you get older? you don't want to have it the rest of your life and have it potentially kill you when you become older or immunocompromised.

DH doesn't deal w/adults but he is on GI medicine right now and working with a lot of pediatric GI specialists so i will ask him about this and see what he says....

Thanks! From what my doctor said, there aren't risks (they test the feces for all infectious diseases and then put it through a blender and microscopically seperate what they need from what they don't). The only risk would be wasting time/money to get there and do the procedure.

Definately ask your DH what he thinks. I was just reading something where a doctor said he saved a 4 yo in the PICU using this therapy.

kaesha · February 2010

I'd do it.

lelekay · February 2010

I would definitely strongly consider it. It is a little gross? Sure, I suppose. But so are a lot of things. Hell, some of the thing some people eat just for the fun of it are seriously gross to me. And if it really has such a strong chance of making you better, even for a while? I'd probably go for it. After much research, and second opinions of course, which I'm sure you've already done.

natalie115 · February 2010

I agree w/ all the pp....I say go for it. Do what you need to do to feel better. It has a great chance of improving your quality of life. Is it icky to think about...yes, but like someone else said, so are most medical procedures and treatments. GL and I hope you start feeling better soon

kaesha · February 2010

I just wanted to tack on an additional thought re: dirt/poo = bad. I don't believe this is strictly true. Our exposure to dirt is what gives us the opportunity to build antibodies against the bacteria around us. The overuse of santizers has led to superbugs, which are making people FAR more ill than the original bugs ever did. I'm staunchly against using purel and other antibacterial stuff myself. If you're interested in reading more, I highly recommend Jared Diamond's Guns, Germs and Steel. It's won tons of awards; he's a great author.

kingandprincess · February 2010

I work in the "IBD business" for a non-profit and heard a researcher talk about this about a year and a half ago (one of thoes topics that seems to stick in your head!). I emailed my coworker to see if she can track down the info and the study that was done here in Canada.

MauidAims · February 2010

First, I am SO sorry you are dealing with this. I cant imagine esp. having a little one in tow. I didn't get grossed out by your post at all. I think once you become a mom, nothing grosses you out. lol If the studies and odds are in your favor then do it. But before that, have you looked into other options in other countries? They seem to be more advanced and willing. Western medicine sometimes just aggravates me. If it would improve your health, way or life and make you be around longer then go for it. What if you get PG again and you have a flair up? I would take all of that into consideration. Anything that keeps you around longer and healthier for that little one.

lelekay · February 2010

kaesha:
I just wanted to tack on an additional thought re: dirt/poo = bad. I don't believe this is strictly true. Our exposure to dirt is what gives us the opportunity to build antibodies against the bacteria around us. The overuse of santizers has led to superbugs, which are making people FAR more ill than the original bugs ever did. I'm staunchly against using purel and other antibacterial stuff myself.

I couldn't agree more! I say this to people at work all the time. I'm all for hand washing, but not hand sanitizers.

Amy4773 · February 2010

I say go for it. Seriously, do you really want to deal with this for the unforeseen future? How awful! I can't even imagine the discomfort, the inconvenience, and the toll it takes on you mentally and physically...which of course, in turn, affects your relationships with your husband and Marino. I'd totally try it. If it fixes the problem, it's worth it!

redshoegirl · February 2010

Since it sounds like the only risk is really just a mental "ewww! Poo! Icky!" factor, then I'd do it. Hands down.

Also, am I losing my mind or was this once on an episode of House or something? I've definitely heard of it before!

SBMBride406 · February 2010

redshoegirl:

Also, am I losing my mind or was this once on an episode of House or something? I've definitely heard of it before!

It totally sounds like a House type of thing to do. My DH always says I'm a walking House episode!

Married2MrWright · February 2010

Wow. I am SO sorry you've been dealing with all of this...you are an amazing woman!

I am not grossed out at all and would definitely consider it. To me it's no different than a bone marrow transplant or the like. If it can "cure" you then by all means, yes! Do it. Who cares if people think it's gross. It can change your life if it works. I'd say run, don't walk!

Married2MrWright · February 2010

cecig:

SBMBride406:

Interestingly, the article says the reason its not popular is that drug companies don't benefit, so there's no money put into marketing of the treatment.

And this part is just sad!

Sad and disgusting. It pisses me off that it all comes down to money. What about people's well being?

mrs.winter · February 2010

girl, if it's going to make you better...DO IT!! It is a bit weird to think about, but you need to be healthy for Marino once you get older!

inamra · February 2010

Well, first off, this is definitely not too gross to think about. I never heard of this concept/procedure before, but given how successful you mentioned that the procedure has been, I'd definitely consider it if I were you, especially if the infection is so reoccurring and if it can become fatal when you become older. I assume you already did all the research you could on this procedure and it looks good? What are the side effects? If there are literally none (or few minor) side effects and the results are that good, then it's worth considering. GL!!

ETA: Just read the rest of the posts and you mentioned that there are no health risks (just money and time). In that case, I'd go for it!

jaysgirljulie · February 2010

redshoegirl:

Also, am I losing my mind or was this once on an episode of House or something? I've definitely heard of it before!

There was an episode of this on Greys Anatomy... the girl who bought antibiotics online and killed all her good bacteria. They put a bit of her hubby poo down her nose, just like what you are talking about here.

What you are going through sounds terrible :-( I hope you decide to do it. If it were me I would, without a doubt!

KShiz · February 2010

I'd do it too. Sorry you're having problems w/ it, you've certainly been through enough.

Those of you with open minds re: alternative medicine: WWYD?

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