C Diff-related Dilemma (not for the faint of heart, may be TMI for some) - Thoughts?

[Spryte]

First - not kidding, this might be way too much info for some, so please don't read further if you have a weak stomach.  

 

Second - I may delete this, as it's pretty personal, so please don't quote me directly.  Thanks.  :)

 

 

 

 

I have had a problem with recurring C Diff, among other nasty GI bugs.  It has been several years now, and I've been on a ton of treatments, seen by multiple docs (yes, many different GI docs have had a hand in the treatment), and even GI docs across the country have been consulted.  At times, I have genuinely feared for my life.  It's been bad.  :(

 

So ... here we are again.  After a long stint with no issues, thanks (I think) in part to a strict regimen of supplements to keep everything in balance, I've had a rough summer/fall of problems.  The issues are increasing, and we suspect C Diff again (testing in progress, but there's a particular, ummmm, symptom that makes us fairly sure).  I am up and walking around, but sick.

 

I'm going back on a hefty GI antibiotic, but am worried - as the last time I was on this one I started to develop a sensitivity.  They are loading me up with antihistamines so I can take it, and at the first sign of sensitivity, I'll stop.  (We do have epipens on hand.)  This is not a good antibiotic to not tolerate, especially for me, with this history.  I don't have many options here.

 

This can't continue.  I am at the end of my rope.

 

Now for the major TMI and ick factor:

 

We have read and reread about the option of a transplant.  The initial ick factor has now disappeared (when one goes through enough, desperation kicks in).  Yes, I am talking about a fecal transplant.  I know, I know... 

 

DH has volunteered for years.  He is awesome.  :)  It's taken me this long to get to the point of entertaining the idea.

 

So, I saw the doc last week, and discussed it.  She is all for the transplant, and has suggested it before.  But she does not think DH is a good candidate.  :(  She wants me to find a candidate who is more athletic, and who doesn't have the same health issues as DH.  

 

I don't know how to tell DH.  I don't want to.  

 

Beyond that, I don't exactly feel comfortable asking just anyone to do this for me.  Ummm... Hi, so and so, can I have a sample of your poop?  Ick!  I can't do it.  It's too intimate.  And I don't want to make DH feel ... I don't know ... not good enough?

 

I just feel stuck.  How do I talk to DH about this?  Do I push to use a transplant from him?  Ugh.  

 

Help?  Thoughts? 

 

 

 

(Can't believe I'm posting this, definitely going to delete some later!)

 

 

 

 

 

 

 

[KungFuPanda]

I seriously doubt that your DH's pride is attached to his 'product' or that a friend wouldn't donate to improve your quality of life. Ask a friend with a dog. They will have experience hauling in a 'sample.' Better yet, ask a male friend. Men seem much leased grossed out by . . . well . . . anything really.

 

I can't imagine ANYONE on the giving end of this agreement being even half as weirded out by this as you are.

[Tess in the Burbs]

um gross.  but wow.  Be honest with your Dh.  You don't want to have other issues b/c it wasn't the best option.  Seek out the description she gave you and be honest with the person you need the um, sample from.  Wow.  I have tummy issues, but this is ....just wow.  I really hope this solution works for you!

[Reflections]

Okay, yeah, ick - BUT so are leeches and maggots and modern medicine is using them too for tough cases.  If you think it will work - just compartmentalize it.  Try not to think about it more than you have to.  

 

:grouphug:  :grouphug:  Sorry you're so sick.

[RoughCollie]

I wonder if anyone in the US is doing this type of research.  According to this article, clinical trials will start soon, but it is in the UK.

 

http://www.medicalnewstoday.com/articles/267573.php

 

Maybe you or your doc could call or email the doc mentioned in the article:  Dr. Martha Clokie, from the University of Leicester's Department of Infection, Immunity and Infection.  She probably knows if anyone in the US is engaged in similar research, and maybe she can help you.

 

Meanwhile, do what you have to do. Just tell your  DH that the doc says he is not the ideal donor, and how much you appreciate his support and his willingness.  I wouldn't use him as a donor because you do want the ideal candidate so your chances of the transplant being effective are maximized.

[Spryte]

I just read an article about this in Good Housekeeping magazine. Supposed to be highly(94%) effective. I hope it works for you.

 

I read that, too!  Or some recent article (it was online), and that's what pushed me over the edge to thinking I'd do it... So I brought it up with the doc last week.  She's mentioned it before, but I've brushed it off each time.

 

The first time I heard about it, from another C Diff patient who'd had it done, a few years ago... all I could think was, "Ick.  Ummmm, no."  But now with recent articles and the current trouble... It's looking more appealing, you know?

[Spryte]

I seriously doubt that your DH's pride is attached to his 'product' or that a friend wouldn't donate to improve your quality of life. Ask a friend with a dog. They will have experience hauling in a 'sample.' Better yet, ask a male friend. Men seem much leased grossed out by . . . well . . . anything really.

 

I can't imagine ANYONE on the giving end of this agreement being even half as weirded out by this as you are.

 

:lol: His 'product' 

 

This made me feel much better about talking to DH, thank you.

[Spryte]

I wonder if anyone in the US is doing this type of research.  According to this article, clinical trials will start soon, but it is in the UK.

 

http://www.medicalnewstoday.com/articles/267573.php

 

Maybe your doc could call or email the doc mentioned in the article:  Dr. Martha Clokie, from the University of Leicester's Department of Infection, Immunity and Infection.  She probably knows if anyone in the US is engaged in similar research, and maybe she can help you.

 

I think it's on the very new end.  My doc has done a few of these (I found out last week), but she tends to be on the newish edge of medical treatments.  It was too "new" for me a few years ago, but now that there seems to be some indication it might be more mainstream, I'm feeling more open. Or maybe it's just that I feel crummy enough now.

 

 

 

 

Sorry, can't get the multiquote function to work!

[Jan in SC]

OMG- just yesterday, a friend was telling me about this treatment because she heard it on npr. (Full disclosure- we were discussing ways to embarrass our kids and she left it on in the car with all of their friends to listen.)

 

Anyway, she said there is now a pill that can treat it. It was created by the same doctor. (I don't know any more than that- sorry!)

[PrincessMommy]

can the doctor find a donor for you?  Maybe that would help with the embarrassment of asking a friend. I hope you find a solution.

[Spryte]

OMG- just yesterday, a friend was telling me about this treatment because she heard it on npr. (Full disclosure- we were discussing ways to embarrass our kids and she left it on in the car with all of their friends to listen.)

 

Anyway, she said there is now a pill that can treat it. It was created by the same doctor. (I don't know any more than that- sorry!)

 

That is hysterical!!!  There's a good plan - I can discuss it in front of DS to embarrass him.   :)

[kbutton]

Are there "standards" for things that need to be in the donor's sample? Certain levels of certain kinds of beneficial bacteria, etc.? If so, the requirements could be your scapegoat. I am a bit bewildered by the "more athletic" comment from your doc. I would want to have some protocol or list of requirements to follow that sounded more scientific, maybe something like, "Candidate's stools are characterized by x,y,z. Candidate suffers from constipation, gas, or loose stools nor more than once per whatever. Candidate has never had a parasitic infection." I can't fathom choosing someone based on their athleticism. What does that have to do with gut health? My hubby is athletic and eats relatively carefully, but I wouldn't consider his gut health to be ideal, quite frankly.

 

Best wishes! I have had some less serious gut issues that are helped by natural methods (probiotics, change of diet), so I hope you can get this to all settle down.

[Jean in Newcastle]

Just tell your dh that they recommend not having a family member do the transplant for cross contamination reasons.  (This is true, btw, even if your doctor didn't specifically mention it.)  

 

Ask your doctor about finding a donor.  

[Spryte]

Are there "standards" for things that need to be in the donor's sample? Certain levels of certain kinds of beneficial bacteria, etc.? If so, the requirements could be your scapegoat. I am a bit bewildered by the "more athletic" comment from your doc. I would want to have some protocol or list of requirements to follow that sounded more scientific, maybe something like, "Candidate's stools are characterized by x,y,z. Candidate suffers from constipation, gas, or loose stools nor more than once per whatever. Candidate has never had a parasitic infection." I can't fathom choosing someone based on their athleticism. What does that have to do with gut health? My hubby is athletic and eats relatively carefully, but I wouldn't consider his gut health to be ideal, quite frankly.

 

 

 

That's a good idea, and I'll ask about that when I see her next - which is soon.  I'm sure there are specific requirements, I think that her comment was along the lines of "let's start by looking at someone thin and athletic" and go from there.  She may have said the word "healthy" in place of athletic.  I'm actually not sure, I was on the table for that part, not taking notes, and it's all a little fuzzy - I'm paraphrasing her.  She did state her reasoning, which was along the lines of what you said.  

 

Oy.

 

Maybe asking her to look for a donor is good?  I honestly don't feel like I know anyone (other than DH) with whom I'm ready to take this plunge!

[sbgrace]

My son has major issues in this area too. Though he's doing well now, I've always felt good knowing there are alternatives like this.

 

Did your doctor actually test your husband? Athletic wouldn't have anything to do with the suitability of his stool. Recent antibiotic use by him, poor beneficial bacterial counts, maybe immune stuff (?) might. But I'd question a bit to make sure she's truly ruled him out as a candidate. If he's had antibiotics or similar, that's an easy convo. If they test his stool and the counts aren't right, that's another easy convo. You're not athletic enough isn't easy and I don't get think it's medically correct either.

 

FWIW, I wouldn't blink an eye if a close friend or relative asked me for a sample. This is an accepted, and sometimes life saving really, medical treatment. Do you have a relative who might be a candidate? Maybe that would be easier.

[Snow]

For what it's worth, I would probably do whatever it took to resolve this medical issue. It's an illness, you didn't ask for it, it affects your quality of life.... I agree, asking your doctor to help find someone would be good. Just because someone is athletic looking, that doesn't mean they don't have issues. Best of luck!

[Spryte]

 

Did your doctor actually test your husband? 

 

No, but I think you just nailed it.  He is also her patient, so she has a fair idea of his health history even without looking at his chart.  She knows him well.  It's possible that she doesn't need to test him to know that his, ahem, product isn't going to be the right fit.

 

Jean, the cross contamination in families issue makes sense, too.

 

Thanks, all of you.  I feel like I can have this conversation with DH now, without him feeling rejected.  Whew.

 

Now I have to figure out if I'm going to ask a relative, who it will be, and how to ask.  

[Jean in Newcastle]

That's a good idea, and I'll ask about that when I see her next - which is soon.  I'm sure there are specific requirements, I think that her comment was along the lines of "let's start by looking at someone thin and athletic" and go from there.  She may have said the word "healthy" in place of athletic.  I'm actually not sure, I was on the table for that part, not taking notes, and it's all a little fuzzy - I'm paraphrasing her.  She did state her reasoning, which was along the lines of what you said.  

 

Oy.

 

Maybe asking her to look for a donor is good?  I honestly don't feel like I know anyone (other than DH) with whom I'm ready to take this plunge!

The gut flora of overweight people has been scientifically found to be less healthy than that of thin people.  Not only does it contribute to obesity itself, it contributes to nutritional deficiencies and other problems.  That is part of the cycle of obesity.  So the doctor is not being shallow in taking that into account.  

[plansrme]

For what it is worth, I heard a radio story several years ago about a guy in Australia whose MS was cured this way. Sure it has an ick factor, but it shouldn't be any ickier than a kidney transplant, and it is a whole lot less invasive. I lf someone asked me, even someone I did not know terribly well, I would agree. Like you, though, I would find it difficult to ask, but asking would be much harder than being asked.

[Snow]

The gut flora of overweight people has been scientifically found to be less healthy than that of thin people. Not only does it contribute to obesity itself, it contributes to nutritional deficiencies and other problems. That is part of the cycle of obesity. So the doctor is not being shallow in taking that into account.

Thanks for sharing, I didn't know that.

[JumpyTheFrog]

There have been mouse studies where they transplanted the fecal bacteria from obese mice to thin mice and vise versa. After the transplant the fat mice lost weight and the thin mice gained weight, despite no changes in diet.

 

My dad is diabetic and was on an injectible drug that he kept trying to get off because it can cause pancreatic cancer. The trouble was, everytime he stopped taking it, he'd immediately start gaining weight. His doctor had him take some super heavy-duty probiotics and then my dad was able to stop the drug without gaining any weight. If it didn't work, the doctor said they could try a fecal transplant to help him lose weight.

[Twigs]

Would probiotics be suitable for the source of your "product"?

[Jen in NY]

Just heard a story about this on NPR.... found the link:

http://www.npr.org/blogs/health/2013/09/10/216553408/microbe-transplants-treat-some-diseases-that-drugs-cant-fix

 

Quote from the article:

"The procedure turned out to be really easy. And it worked — virtually overnight. "It stopped," Iverson says. "Right away. I'm feeling good now. I'm feeling great."

[Susan C.]

I just read an article about it recently. The best donors are breast fed babies. I will come back later and read replies can't right now.

[Spryte]

Would probiotics be suitable for the source of your "product"?

 

It's a good idea, but ... No, unfortunately - it hasn't been completely effective.  Our family spends a small monthly fortune on probiotics and other supplements.  All the very best quality we can find per our doc's very knowledgeable advice.  (I am quite the expensive one.)  

 

Even on everything, which did seem to help for quite some time, I find myself back in this boat.  :(

[MBM]

I would definitely do it if I had a c diff infection, Crohn's, ulcerative colitis, and I'd even try it for weight loss if I were obese. It's gross, yeah, but try to think of it as taking loads of beneficial microbes which your body desperately needs.

 

Nowadays you shouldn't have to be intubated, either. Much better to just take capsules.

 

U of Michigan Medical School has been studying this for about five years.

 

http://online.wsj.com/news/articles/SB10001424052970204044204574356434070272984

 

 

[Spryte]

So glad I posted about this.  Hearing of all the positives is helpful.  As is hearing that many of you would be able to consider asking for someone to donate, or be receptive to someone asking.  It's helping me get past the ick factor.  Thank you.

 

HoppyTheToad, my doc referenced something similar - that a transplant from an obese person would tend to contribute to weight gain in the recipient and vice versa if the donor was on the thinner side.  Of course, I've totally mangled trying to paraphrase her, and you all are doing a much better job of articulating what she said to me!  ...I'm glad your dad's issue resolved without resorting to a transplant, though!

 

ETA: she also mentioned that a donor who is pre-Diabetic might possibly pass that along as well.  

[MBM]

I just read an article about it recently. The best donors are breast fed babies. I will come back later and read replies can't right now.

 

Yep. Formula-fed babies have very different gut flora.

[MBM]

So glad I posted about this.  Hearing of all the positives is helpful.  As is hearing that many of you would be able to consider asking for someone to donate, or be receptive to someone asking.  It's helping me get past the ick factor.  Thank you.

 

HoppyTheToad, my doc referenced something similar - that a transplant from an obese person would tend to contribute to weight gain in the recipient and vice versa if the donor was on the thinner side.  Of course, I've totally mangled trying to paraphrase her, and you all are doing a much better job of articulating what she said to me!  ...I'm glad your dad's issue resolved without resorting to a transplant, though!

 

ETA: she also mentioned that a donor who is pre-Diabetic might possibly pass that along as well.  

 

Yes, fecal transplants from an obese person given to a thin person usually result in the thin person gaining weight. Weight probably has more to do with gut flora than the old *calories in, calories out* theory.

[Ann.without.an.e]

What a decision.  DS has crohn's and this has come up a few times.  I have heard of great results for c.diff and crohn's disease with fecal transplants, but it isn't mainstream for crohn's yet and DS's doctor definitely doesn't go for things that are less than mainstream  :glare:

 

If I had c.diff I would try it since it has had great results.  Once you get over the ick factor, it isn't really much different than putting someone else's blood in your body (blood transfusion).  

 

 

[sassenach]

I thought I read that the best choice is child doo. What about your kids?

[Spryte]

I thought I read that the best choice is child doo. What about your kids?

 

That's a thought.  I hadn't considered it.  Both were formula fed, as BF was not an option for us.  But maybe it would still be better than adult options?  

 

Thanks!

 

I will ask the doc about this, too.

[Acadie]

Just wanted to send you support in considering and pursuing this, especially with C diff.  We have GI issues in our family (not C. diff but IBS and food intolerance symptoms that impact every day life) and when we have a really bad day I sometimes think my job is just to keep these kids growing, learning and relatively healthy for a few years until FT is available to people with a broader range of diagnoses.  

 

With C diff I would definitely do it.  

 

They say mood can be related to gut flora too--seek a happy donor!  :)  And best of luck.  You're on the cutting edge, but I think it's going to become way more mainstream.  May it work out as well for you as it has for so many other people.

 

Amy

[MBM]

Spryte, I just did some reading on this. Since you are dealing with c diff, you might be able to go with just an enema. From what I understand, you would take a laxative to clear out your intestines. The donor would also do a clearing and collecting. Then, the doctor would take a diluted portion of fecal matter and using a colonoscope (I think) spray it way up in your intestines. So, you might even be able to avoid the oral route altogether.

[Farrar]

I have nothing to add except that there's a whole chapter in Gulp by Mary Roach about this and it was fascinating - I highly recommend the whole book, though like the OP's post, it's not for the faint of heart.  It may sound gross at first, but it makes sense.  I suspect that injecting oneself with cowpox sounded pretty icky to people at first too.  And presumably fecal transplants will eventually have come a long way from where they are now.

 

Good luck!

[Susan C.]

Here is the article I read:

 

http://www.thehealthyhomeeconomist.com/how-to-perform-a-fecal-transplant-at-home/

 

Adding: Dh has dental work a few years ago. The pharmacist said when we filled the antibiotic that it was bad for c-dif. Sure enough, big D within 24 hours. It was bad. I felt like I had maybe a few days to conquer it before we would need to get medical help. I put him on the BRAT diet, gave him probiotics, and every episode of "d" he got liquid bentonite clay. It took three days, but we got him better. Then I got Primal Defense probiotic and kept him on it.

[KungFuPanda]

If I had a nursing baby, I'd let you keep every diaper you changed :-)

[Tiramisu]

I had CDiff for months with recurrences. I thought I'd never get better and eventually die from it. I would have done a fecal transplant in a minute if I could have found a doctor who would help me with it. My GI doctor brought it up but said he didn't know of a place to do it and wouldn't do it himself.

 

I took a scary amount of Flagyl, and a flagyl/vancomycin combo as an inpatient, but it still came back. It was vancomycin with the right probiotic combo that eventually booted it.

 

I also took large quantities of Florastor and Culturelle, but neither prevented it from recurring, even though they have been shown in studies to be effective. The most helpful probiotic, and the one that seemed to help even most was Align. It seemed to help a bit even before I got the antibiotics. As far as I know, there are no studies of it helping with CDiff, but that was my experience. I used an Align/Florastor double dose combination during and for months after the Vanco and it never came back. When I had to go on antibiotics since the CDiff, I did the Align/Florastor combo again and I was good, but it was a scary wait. I also took Reuteri, which in studies was effective, for about a year after that, for a more affordable option. 

 

I wouldn't worry about finding the perfect poop. Yes, a breastfed baby from a thin, healthy family, whose mother never took antibiotics, sounds nice, but I'd take something from a reasonably healthy person if it could be done quickly. 

 

:grouphug:  :grouphug:  :grouphug:  from someone who knows how you must be feeling. Please keep us update. I'll be praying.

[matrips]

My dad died as a result of recurring cdiff. I've read great things about the transplant and I'd go for it. Can your kids supply samples to the dr? Maybe under the ruse of testing and not telling them what it's for (if that's legal). Just so you wouldn't freak them out if you are worried about that. I would have done it for my dad. (He had it under control when he moved here, but the toil it took on him before that did him in). It was super weird the first time I read about it, but when you see someone suffer so much and know how hard it is to get rid of, it kind of takes that out of the equation.

 

Ps Florastor is what helped him get the cdiff under control each time. (Once he let me help) Not sure if you're taking a probiotic. A bland diet also helped.

[tex-bex]

I've read a bit about this from Chris Kresser. I would definitely do it in your case.

Google chriskresser.com fecal transplant.

 

Also, make your doc deliver the news to your DH if that would make it easier.

 

Good luck! The sooner you can get off antibiotics, the better for your gut health, and health overall!!

[Catwoman]

I don't know anything about this stuff, Spryte, but it sounds like you're feeling awful, and I wanted to send you some :grouphug:

 

I hope you get better soon.

[JumpyTheFrog]

I'm glad your dad's issue resolved without resorting to a transplant, though!

 

 

 

My dad is still obese, but now he's able to maintain the 60 lbs he lost by going low carb, without taking a drug with bad future side effects.

[plansrme]

I've responded already, but after reading some more the replies, just want to say how flattering it might be to be asked to be a donor.  The donor needs to be healthy, thin, athletic and with a butt-kicking immune system--you could totally flatter someone into thinking, "I'm so awesome that even my poop can save a life!"  You could make someone's day.

 

 

[MBM]

I've responded already, but after reading some more the replies, just want to say how flattering it might be to be asked to be a donor.  The donor needs to be healthy, thin, athletic and with a butt-kicking immune system--you could totally flatter someone into thinking, "I'm so awesome that even my poop can save a life!"  You could make someone's day.

 

So funny!  :lol:

 

Maybe a wild chimpanzee would be a good choice. None of those zoo monkeys for me. (Article is not serious, btw):

 

http://humanfoodproject.com/a-fecal-transplant-from-a-healthy-chimpanzee-or-average-joe-which-would-you-choose/

 

Btw, I bookmarked the website above some time ago but haven't read through it, yet. Might have something interesting. 

[FriedClams]

ETA: sorry, my phone went whack-o!!

 

I am NOT saying this is a reasonable full treatment, but I saw this today (my mom has chron's so this stuff is relevant to me), and it might help a tiny, tiny bit. Hope you're feeling better soon!

 

http://www.dailymail.co.uk/health/article-2471095/Forget-trendy-probiotic-drinks--just-eat-porridge.html

[Spryte]

Thanks so much, each of you, for taking the time to share your experiences and thoughts - and the research on this.  Wow.  Posting this has made me feel much less freakish for considering this option.  Thanks!  You are awesome.  

 

And thanks for the private messages, too, I'll respond to each of you asap.  :)

 

I feel like I can go to my next doc appt (in 6 weeks, assuming I make it that long on my latest treatment, crossing fingers) and have some real, in depth discussion about this.  You've helped me get past the ick factor.  

 

Funny ... DH's bday was last night, and we had some friends over.  I gritted my teeth and made it through dinner with them (isn't it amazing what you can do despite feeling crummy??).  As we sat there, one of the friends was talking about how he just can't gain weight, and if he skips a meal he loses a few pounds almost immediately.  He is very athletic.  No kidding, I was listening to him and privately evaluating the state of his GI health!!!  (Oh, and needless to say - DH  cooked, I didn't go near the kitchen during food prep.  There's a perk, right?)

 

Honestly, I think I'd prefer to go with one of our kids as a donor, but I will ask the doc about all those options.  

 

Whew.  

 

Thanks.   :grouphug:   Really glad I didn't wimp out and skip posting.  You're all great. 

[Tiramisu]

Imagine, getting to the point of checking out dudes for the quality of their p**p.  :coolgleamA:

 

[Halftime Hope]

Man, this thread could be the basis for a whole new Chuck Norris joke.

[Jean in Newcastle]

Man, this thread could be the basis for a whole new Chuck Norris joke.

And what would that joke be, hmmm?   :laugh:

[Halftime Hope]

And what would that joke be, hmmm?   :laugh:

 

Well, if his beard is a protagonist in some of the jokes....    :smilielol5:         (I have survived raising boy-critters.)