Fecal gut transplant completed

[Ginny]

We did the procedure on 11/8/11 and after getting it all prepared it went smoothly (no pun intended)! It seems to have reacted the same as the probiotic enemas with formed bowels the first couple of days to D by the end of the week. However, it was a lot easier on my gut than the probiotic enemas, with no urges to go all day. I'm encouraged but see that this is not a one time solution.

In the meantime, I continue to lose weight (93#'s) with this GAPS diet (it really is Paleo) and can no longer not include some carbs. I tried making some "biscuits" with their nut, no egg recipe, but too many nuts gives me D. Food wise and calories are now a real challenge. The doc at Baylor says I will continue to lose weight and need to eat because I am absorbing the nutrients. Hard to make yourself eat foods that are going to send you to the potty. Please understand that I eat 4 times a day and take in 1500-1800 calories. I need a pill to slow down my metabolism. I have given up working out simply because I can not afford to spend calories.

My DH and I are going to try another transplant hopefully this week. He had rotator cup surgery the Thursday after our initial trial transplant so we are waiting to get "everything" out of his system. I am going to try the Xifaxam this time prior to the next transplant and see what happens.

Baylor College now has all my records and is reviewing and I look forward to a return call, but not to hopeful for any resolution.

Open to any ideas on how to gain weight?

Love G

[sarkin]

Ginny,

Thanks for this update - I have been wondering how you were doing, and was hoping for a somewhat more emphatically positive outcome, of course, from this procedure. I hope your husband's recovery is going well and that the next attempt will bring you closer to the goal line.

I'm a one-trick pony for weight gain, and it's potato chips. I do eat some nuts, but feel very cautious about overdoing them, too. And they say sugar is more fattening than fat, but I am uneasy about even honey and maple syrup, though I seem to tolerate them OK in small quantities. I hope you find the right potion for nutrients, weight gain, and strength.

All my best,

Sara

[tex]

Hi Ginny,

Hmmmmm. That is indeed frustrating that the treatment didn't "stick". Apparently, it would work, but the bacteria are not able to "attach", due to the intensity of the autoimmune "rejection". You know, thinking about this, if worse comes to worse, this may have to be be treated like an organ transplant. IOW, if your immune system is rejecting the bacteria, the use of an immune system suppressant may be required, in order to persuade your immune system to accept the transplant. That's not a good long-term solution, but maybe the immune system will settle back down to normal again, after remission is in place for a while, and enough healing takes place. IOW, you might need to suppress your immune system long enough to allow the transplant to "take", and some healing to take place.

Maybe this is why some of us have such a tough time reaching remission - maybe the basic problem is not that we are overrun by "bad" bacteria, but rather that our immune system will not allow synergistic bacteria to attach, even those "qualified" to attach. Dr. Fine has always maintained that MC appears to be caused by the immune system attacking beneficial bacteria. For most of us, though, that problem resolves after we remove the food-sensitivities from our diet. Obviously, some cases are more severe. I'm just thinking out loud here - maybe Polly has some insight on this.

No wonder you're losing weight - that's not enough calories. You have to remember that you're not absorbing all of those, either. When I was reacting, I was reluctant to eat, also, but the fact is, during an MC flare, we're going to have D whether we eat or not, so we might as well eat enough to at least try to keep our weight up, because that's healthier than not eating. I always ate more of the foods that I could tolerate, and avoided any that caused problems, and even though I had a malabsorption problem, the only times that my weight was really in jeopardy, was the times when I intentionally restricted the amount that I ate.

Regarding carbs - can you tolerate sorghum? Sorghum is related to corn, and feedlot managers find it to be almost as good as corn for use as a ration base for generating rapid weight gains on livestock. Since it's a relative of corn, you might not be able to tolerate it, but it might be worth a try. Sorghum is somewhat popular in South America as human food, though it never caught on here in the States.

I still believe this transplant approach is the most promising option available - we just have to figure out the best way to accomplish the goal.

Love,
Tex

[Rosie]

The latest (December) issue of Scientific American has a several page article on fecal transplant called "Swapping Germs" on p 34-36. So it's starting to get mainstream. The article focuses on using it to treat resistant C. difficile infections. According to the article, fecal transplants have been used on about 300 patients worldwide with 90% recovering completely. Ginny, I'm sorry to hear that you are in that unlucky 10%, but hopefully another attempt will work. I don't know what technique your doctor used, but the article talks about the recipient using a colonoscopy cleanout, and the donor using a laxative. Then the doctor uses a colonoscopy instrument to insert the fecal solution high in the patient's large intestine. If you/your doctor just used an enema-like process, maybe the donor bacteria didn't get high enough. There are 3 doctors mentioned who have done this procedure many times, Dr. Lawrence Brandt at Albert Einstein College of Medicine, Dr. Alex Khoruts at the University of Minnesota and Dr. Colleen Kelly at Brown University Medical School. So perhaps you or your doctor could contact one of them and find out some details about how they do it. We know that often "the devil is in the details".........

The article aso mentions a "Catch 22" obstacle to further research. Dr Kelly and several others have drafted a clinical trial design, Before the NIH approves any clinical trial and provides any funding, the substance being studied must be granted "investigational" status bu the FDA. Evidently feces don't fit into any of the defined categories, so thus can't be granted "investigational status" by the FDA, and thus a clinical trial can't be approved by NIH.......

Rosie

[tex]

It works for C. diff, because C. diff is strictly a bacterial infection. The problem with MC is that it's usually a combination of a bacterial infection and autoimmune issues.

Evidently feces don't fit into any of the defined categories, so thus can't be granted "investigational status" by the FDA, and thus a clinical trial can't be approved by NIH.......

Has the government ever done anything right? It's no surprise at all that they can't get their "feces" straight. The pharmaceutical companies will be laughing all the way to the bank, as usual.

Thanks for the info on the article.

Tex

[Gloria]

Ginny,

I am so sorry that the fecal transplant doesn't seem to be the "magic bullet" we were hoping it would be. I don't know what else to do if this doesn't work. I don't have any answers for resolving your MC; if I did, I'd be using them myself.

Sara,
I noticed that Ginny can't eat nightshades, and potatoes are part of the nightshade family.

Tex,
I cannot tolerate sorghum, but do tolerate corn (as far as I can tell), so corn tolerance may not be associated with sorghum tolerance. I believe that millet is closely associated with sorghum.

My weight is also dropping slightly (98-99 lbs.) since I've had to give up rice and quinoa. IMHO, the fastest way to get calories is to add carbohydrates. It's risky, because people with many, many intolerances, such as us, will likely react to a variety of grains. Nonetheless, if you can find just one grain that you tolerate, it will help add those calories. I know you were making waffles and pancakes before; I still eat them along with my muffins, puddings and tortillas. These all add calories and keep me feeling full and well.

I notice that you don't tolerate corn. Do you tolerate rice? If so, perhaps you can make your own nut butter and put it on rice crackers.

too many nuts gives me D

I've found that I can't handle any coarseness in nuts. I'm able to eat nuts in the form of milk, flour and nut butter, but only if they are extremely smooth and without skins. Nut butter has 180 calories in 2 tablespoons, but most nut butters are not ground finely enough; therefore they irritate the gut. Plus, the smoother ones add palm oil, closely related to coconut oil, which I cannot tolerate. I found instructions on the web for making smooth almond butter, and made some yesterday. It took a little time, and it requires a decent food processor (not a blender or a Vitamix), but it worked well.

My heart goes out to you; I feel that we are in this together and solutions are not forthcoming for us right now. Hang in there. Your main goal right now should be to gain some weight. I hope you can find some ways to do that.

Love,
Gloria

[Zizzle]

Ginny,
Have you tried plain ol' fat as a means of increasing calories? Steaks and pork with the fat still on, uncured bacon, avocados? Do you tolerate coconut oil?

Maybe this is why some of us have such a tough time reaching remission - maybe the basic problem is not that we are overrun by "bad" bacteria, but rather that our immune system will not allow synergistic bacteria to attach, even those "qualified" to attach. Dr. Fine has always maintained that MC appears to be caused by the immune system attacking beneficial bacteria. For most of us, though, that problem resolves after we remove the food-sensitivities from our diet. Obviously, some cases are more severe.

Tex, do we have evidence that once our food sensitivities are removed from our diet, our colonic bacteria improve too? I believe in the above hypothesis, and I'm beginning to think dealing with food sensitivities only improves the symptoms of MC, but not the underlying cause. Of course eating problem foods would only make intestinal inflammation worse, so avoiding them does improve disease status. But do the missing lactobacilli and other beneficial bugs somehow magically return to our less angry digestive tract?

[Ginny]

Thanks all for responding.

Tex, I really think you have something,

Apparently, it would work, but the bacteria are not able to "attach", due to the intensity of the autoimmune "rejection". You know, thinking about this, if worse comes to worse, this may have to be be treated like an organ transplant. IOW, if your immune system is rejecting the bacteria, the use of an immune system suppressant may be required, in order to persuade your immune system to accept the transplant.

but it is just finding a doc that would give me that type of drug. When I mention to the new doc at Baylor about the "transplant" he just said that would be very experimental! I don't see him giving me an immune system suppressant, but that would also take him calling me back first !

The only meats I can eat for sure are turkey and lamb, and turkey sure does not have many calories. The veggies I can eat have no calories. I have tried adding back in quinoa & buckwheat and one or both causes D. Rice is out. I lived all around sorghum in NE and was highly allergic. I am going to try millet. I have been adding a T of oil to every meal and am now eating 5-6 times a day just to maintain weight. Avocados are a main stay. I react to coconut. Truthfully if I give up anything for more than a month, my body rejects it.

Gloria, I may try the waffles again even though they are mostly rice, but I loved them and if I am going to have D anyhow, I might as well have something I like. Almonds are out right now; supposedly new reaction. I was told that the nut butters are actually easier on your gut than milk or ground. I also agree with you that carbs are my only hope in adding/maintaining weight.

I decided today to try 3 Entocort (1 to 2 Entocort and 4 Imodium a day is not working) and see if I could handle it; so far so good. Honestly, this is no longer a mission to get well without using drugs but to have QUALITY OF LIFE! For Gloria and I and some other hard core suffers there has to be more to this than just the MC and food intolerances!! Needless to say, I am very discouraged at this point.

Love, G

[tex]

But do the missing lactobacilli and other beneficial bugs somehow magically return to our less angry digestive tract?

Frankly, I doubt that they do, because if they did, we wouldn't be so quick to relapse, anytime we eat something we shouldn't. I'm not aware of any research that has been done to verify what you asked about. A lot of research is being done on gut bacteria, but so far, researchers are barely dipping their toes into an ocean of possibilities, and at the current rate, it could take forever to gain any truly significant insight into the details of how this synergistic relationship actually proceeds.

We know that our gut does recolonize with bacteria, but we don't have the foggiest idea whether or not the species involved are actually optimum for our particular situation, (because we don't have any knowledge of what our population demographics might have been originally, before everything headed south). Not only that, but since we typically eat an altered diet, in order to control this disease, it's very likely that our original population spectrum would no longer be optimum with the new diet, (and the genetic changes that were triggered with the advent of MC), anyway, so really, what we probably need is something more like a paleo gut bacteria profile, and unfortunately, no one knows what that profile might actually entail.

The question is, "with a permanently altered diet, (and a permanently altered immune system), do we still need those 'missing lactobacilli', etc., or would some other species be much more beneficial?" Maybe the species that would be optimum for us, no longer exist, or never existed.

Tex

[tex]

but it is just finding a doc that would give me that type of drug

You know, if it wasn't so pathetic, it would be kind of funny - a lot of GI docs prescribe immune system suppressants as a treatment for MC, but to prescribe it for the purpose you are considering, appalls them, (because of their tunnel vision). All it takes is a doctor who is capable of thinking outside the box - of course they seem to be as scarce as hen's teeth. Doctors are not the only ones who have that problem - many scientists are so highly educated that they lose their common sense along the way - it's a common side effect of higher education.

Truthfully if I give up anything for more than a month, my body rejects it.

IMO, that's a consequence, (and a clear indication), of a serious bacterial imbalance in the gut - and further evidence that a transplant is almost certainly the best hope for an effective and permanent solution.

Love,
Tex

[Zizzle]

The question is, "with a permanently altered diet, (and a permanently altered immune system), do we still need those 'missing lactobacilli', etc., or would some other species be much more beneficial?" Maybe the species that would be optimum for us, no longer exist, or never existed.

That's interesting. My new doctor said he could virtually guarantee I would have no lactobacilli on my comprehensive stool exam. And I would never be able to tolerate dairy again, in part because I lack the lactobacilli required to digest dairy. So it's true, you need a particular mix of bacteria to digest the types of food you are eating. You cut out those foods, and those bacteria die off (for lack of nourishment?? or autoimmune attack?). So if we ever want to add foods back in, perhaps we need to supplement with the corresponding probiotics, to prevent us from rejecting the food?

[tex]

So if we ever want to add foods back in, perhaps we need to supplement with the corresponding probiotics, to prevent us from rejecting the food?

Yes, but how do we get them to attach, and successfully colonize, when our immune system is now genetically programmed to reject them? That's exactly the problem that I suspect that Ginny is dealing with.

Tex

[sarkin]

I recently saw an article about a study that showed that certain probiotics altered 'function' when used as a supplement, though they did not colonize. (Just to make things more complex/confusing.) Still, doesn't answer the "what to do" dilemma.

Z, maybe some of us never really could eat dairy, but it just looked as though you could, the way it looked as though we could tolerate gluten. I believe that's the case with me - or maybe I had some limited ability to digest casein, and that got 'broken' by drinking gallons of milk, as so many of us did as kids. Plus, the changing biochemistry of adolescence... I stopped drinking milk, without giving it too much thought, in high school. I still ate cheese, yogurt, etc. I would bet my body was trying to tell me something.

In the dog park yesterday, a couple of folks were telling me that they cannot tolerate lactose. They're both somewhere north of your age, Z, and south of mine. They both look like ticking bombs. The woman reports that she feels better when she doesn't eat gluten. I really believe that almost none of us has an unconditional tolerance for gluten, into middle age, that can't be "broken" by the right pathogen, medication, or bump in the road. Not sure whether dairy is in the same category.

Ginny, glad to hear you're able to use avocado. I think it is interesting - both you and Gloria have had trouble re-introducing a food after giving it up for some time. I am newer at this, but feel as though I have the opposite experience - that overuse of some foods puts me at risk of reacting to them. (Gloria, I understand that your rotation diet is avoiding precisely this contingency.) I am not sure what this might mean about our various gut flora. Also - I am sure you would be very hesitant to do this, and I don't blame you, but - alldaychemist.com does sell Imuran, which is the only immune suppressant I can think of off the top of my head. I am, of course, not recommending this to you - how can I, with my limited understanding? I hope you get some help from your medical team in figure out a way to maximize the success of your next attempt.

Tex, I believe the previous diet was the "permanently altered diet" - the one with toxic foods in it that we never evolved to eat Of course, that may have led us (along with other factors) to a permanently altered immune system.

Sara

[tex]

alldaychemist.com does sell Imuran, which is the only immune suppressant I can think of off the top of my head. I am, of course, not recommending this to you

The problem, of course, is that it takes at least several months or more, (really, more like 6 months), to reach a state of homeostasis with Imuran, and initially, at least, liver enzymes need to be monitored closely, to make sure that something adverse is not going on. IOW, this is not something that could be accomplished over a week or two, so a doctor's assistance is almost essential, because of the need for regular lab work.

Tex, I believe the previous diet was the "permanently altered diet" - the one with toxic foods in it that we never evolved to eat Of course, that may have led us (along with other factors) to a permanently altered immune system.

Hmmmmm. That's an interesting observation, and it appears to be right on target - it certainly seems to fit the boundary conditions that define the problem, so from an engineering viewpoint, (which, IMO, supersedes a medical analysis of the problem), it appears be a potentially valid theory. Here's your gold star:





Love,
Tex

[Ginny]

Sara, that is good information about Imuran. I have an appt with my alternative doc tomorrow and am going to approach her with this idea; she is all for the transplants. BUT if she will not give me a prescription...........I know where to get it. You are also right about the probiotics; the enemas I take only help temporarily and right now that is just a day or so.

Also, I have been on a 3-day rotation diet forever until last June when this bout began. Gloria and I are similar in the fact that even being on the rotation diet, we have no guarantee when and if a new intolerance will pop up. I no longer have enough variety to rotate. I think we have tried just about every way to get this disease under control and have a relatively normal life. Gloria has been a little more successful than I have been.

Another thing, my docs are amazed at the quality of my blood work..................duh, how can it not be when you are eating nothing but homemade, generally organic, quality food!! It doesn't take a rocket scientist to figure that out! I'm waiting for one of them to tell me it's in my head...............and then this good little Catholic girl might come undone !! I am beginning to lose my patience and my kindness!

Will let you know what the doc says...................wish the Baylor College of Medicine would call!! They are supposedly "reviewing" my biopsies from two years ago .