Saturday, August 11, 2012

what you do when antibiotics don't cure your SIBO


the machine that performed my HBT


It's no secret that since 2008 I've had more than a few health issues that arguably are the reason I'm still here in Philadelphia. A broken collarbone, second degree heart block, a bike accident in which my leg was run over by a truck, a nasty perineal nodular induration, a severe form of hypothyroid called Wilson's Syndrome, a major shoulder reconstruction, a lacerated kidney, another concussion which required head staples, a pacemaker implantation, couple of broken ribs, and probably a few more I'm not thinking of right now because my brain is light on glucose. In the past year though, my IBS has flared up pretty badly to the point where it is really negatively impacting my quality of life. I inherited IBS from Mom's side of the family, but I always kept it under control through diet, exercise, adequate fluid intake, and avoidance of pasteurized dairy products. But about a year and a half ago the situation got much worse, and I found myself wondering what was going on. Certainly a lot of it was related to my hypothyroid condition, but even once that was under control there was little improvement. I decided it might be time to go back to a gastroenterologist to make sure there was nothing going on like cancer or some type of obstruction. You might remember I scheduled my colonoscopy smack in the middle of a 9 day water fast. I got the test, and everything was normal. They gave me some pharmaceuticals to try which did not work and which I would not have wanted to take long-term anyway. So as usual had to figure out this puzzle by myself.

 I do a lot of research about health, nutrition, diet, exercise, and my various conditions, and this involves reading a lot of medical studies as well as books. Let's face it kids, if you really want to understand a subject, you can't just rely on the hit or miss information on all those websites out there. Sometimes you have to be willing to shell out a little coin to read a well-researched book, article or medical study. Thank God for my Ipad.

My symptoms? It seems as if everything I eat causes bloating about half an hour after I finish. This told me the problem was in my small intestine, and it did not take me long for me to self-diagnose with SIBO, or Small Intestinal Bacterial Overgrowth. The treatment for this syndrome of excess bacteria in the small bowel, which should not contain much bacteria at all, is either antibiotics, which I never take, or something called the elemental diet, which is basically a regimen of eating only "food" that is already broken down into micronutrients, so the bacteria have nothing to eat when the substance enters your small bowel, and they die of starvation. It is often used in hospitals for very ill patients who are being tube-fed.  I found out later why the only way one should ingest the elemental diet is via tube, which bypasses the taste buds.

So I called up my gastroenterologist Farzana Rashid, MD, at Penn Presbyterian, who is intelligent, has a good bedside manner, and happens to be young and female, so she does not have the ego of an older male doctor who might not appreciate my strong desire to co-manage my healthcare decisions. Not only that, but she agreed to perform the colonoscopy on me without anesthesia, something most doctors would protest against. I had read A New IBS Solution by Mark Pimental MD and was anxious to get a hydrogen breath test to confirm whether or not I indeed had SIBO before I would consent to take 2 pretty hardcore doses of antibiotics for 10 days.

After a phone call with her she did prescribe the test and I got it at the Perelman Center 3 weeks ago, and after a long discussion over the phone with Dr. Rashid, I convinced her that based on the latest research from Pimental's studies at Cedars Sinai, because my bacteria excrete methane as well as hydrogen I needed to take the combo of Rifaximin and Neomycin. Might as well knock them all dead with a one-two punch.

So she prescribed them, and they exhausted me for 10 days. Not to mention I gained 5 pounds of fluid which was not fun.  But the treatment did not work.  I was undaunted, because I had another ace up my sleeve.  It is what is known as the elemental diet.  I knew I had to do it, and really, if one can eat NO FOOD for 9 days, then how difficult could this be? Dr. Rashid said it is so extreme she has never been able to get any of her adult patients to try it, so they do not use it in her practice.  Hmmm, food for thought.

So you eat nothing but pre-digested macronutrients for 2 weeks.  There are commercially prepared formulas used in hospitals which are available to the public, but there was no way I was going to take Vivonex or Absorb Plus or any of the pre-made concoctions out there. Not only were they very expensive, but in the case of the Nestle Products the ingredients are of poor quality, and in the case of the Absorb Plus, the diet is too high in carbohydrate and contains no fats, because it is designed for people with Crohn's Disease. I'm going to be having nothing but 3 shakes a day, and if they are loaded with sugar then I will feel okay for a couple of hours and then I will be tired and starving when my blood sugar crashes due to the insulin spike.  And unfortunately when you have SIBO you have to use simple sugars during the elemental diet phase because they are digested quickly, high up in the small intestine.  If they are harder to digest and travel too far down the intestine undigested they feed the bacteria which reside further down the small bowel. No, I had to make the diet myself, and although Dr. Allison Siebecker does include a recipe on her website, even the higher fat option was not low carb enough to prevent the roller coaster of energy like I describe above.

After all, I realized that this dreadful foodless fortnight would be the PERFECT time to continue my experiment as to whether or not an endurance athlete really can thrive on a low-carb diet, or ketogentic diet. Especially one who does not eat meat. So why not make it a ketogenic elemental diet? keto-elemental diet? I mean dreadful is dreadful right? I'm all about combining my misery into an efficient as possible package, with admittedly mixed results. Stay tuned.

7 comments:

Dr. N said...

Stumbled upon your blog while moonlighting in an urgent care (I'm a former HIV physician) while searching some stuff of Dr. Stephen Phinney.

I have a lot of experience with SIBO. You might try using the prebiotic fiber called inulin. Very effective in stablizing SIBO.

The other consideration is SIBO is arising from another condition(i.e., secondary phenomena) and not the primary condition.

An example would be scleroderma. The slowed intestinal motility in this condition predisposes people to SIBO. Making it difficult to cure.

In your case, I think you may have some autonomic dysfunction which is causing slowed intestinal transit predisposing your to SIBO.

Don't let the post-meal diarrhea make you think you gut is moving too fast. Its a long explanation but you can have diarrhea with slowed intestinal transit.

You autonomic dysfunction might be from one of your concussions (referred to as traumatic brain injury when searching pubmed). There are a range of things that can trigger it.

The autonomic dysfunction may also be why you have the 2nd degree heart bloock. You'll find the parasympathetic nervous system (a segment of the autonomic system)controls most heart rhythms.

Hope these pointers help.

Pat Nemechek.

PS - Make sure you get plenty of salt in your diet when going ketogenic otherwise you may get fatigues, lightheaded and pass out.

wowness said...

Please please update me!! I have SIBO and am at the doorstep of treating again for the 5th round. This time it will be either an elemental fast or a water fast, and I need a recipe for the elemental formula. FODMAPs are not tolerable for me, so Dr. Siebecker's formula and Absorb Plus seem risky. I am working with a nutritionist this time who put me onto the Absorb, which makes me wonder if she can really help me , given the tapioca maltodextrinin the Absorb. What was the outcome of your Ketogenic Elemental fast and would you share the recipe if you feel it is successful. Thank you so much...I am set to start ASAP once I find the right consumable!
paula

Anonymous said...

Rather than eating lots of sugar I would either try the water fast or if you are already too thin, the all meat diet. While the bacteria may utilize some of the protein, they will not be able to break it down as fast as the sugar. And, too much sugar probably helped to get you where you are today.

mauikiwi said...

aloha im wondering if you did complete a water fast for you SIBO ....i am considering this for my digestive issues...any update ? thanks

andrea walheim said...

I just returned from a conference on SIBO. The treatment will not necessarily work of you don't know what kind of gas is produced, so a hydrogen breath test (testing bothy hydrogen and methane) is recommended. After either abx or herbal abx, follow up with a combo diet of SCD + low FODMAP for best results.

Water fasting is hard, I did one for 9 days here http://www.thesecretlifeofadirtdiva.com/2011/09/countdown-to-my-first-10-day-water-fast.html. Dr. Mark Pimental states that if treating with the elemental diet or even a water fast, they see the most die-off between days 10 and 14, so you have to commit to 2 or perhaps 3 weeks. The semi-elemental diet really does not work; it has to be elemental. For more info, see siboinfo.com

Anonymous said...

Can you please share your recipe for the elemental diet? My Naturopath Doctor also attended the SIBO symposium, SCD + low FODMAP and hbx wasn't entirely successful.

Julio Francisco Lainfiesta RĂ­mola said...

Hi mi brother has SIBO, he has been treated by Dr Pimentel and other fine phisicians from the USA and here in Guatemala, Central America where we live. 3 years of SIBO, nothing seems to work. We have visited a lot of doctors and nutritionist. Really need your help. He has been diagnosed with hipothiroidism and diabetes. Which we assume are the original cause of SIBO. He is being treated for those deseases. I'm a Dentist and trying to look for some advise in the net, because we are out of options after traveling about 7 times to the USA and spending a whole lot ammount of money trying to get him better. He has never tryed VIVONEX, what would you recommend us? Thanks
grillo0414@yahoo.com
Dr. Julio Lainfiesta