Post Johns Hopkins: Great Visit, Test Results, and Plan of Action

It's hard to believe only one week ago we were driving to Seattle to board our midnight flight, what turned out to be a long trip to the East Coast (due to the connection flight cancelled at 4 am!).  Even harder to wrap my head around how much I learned in just one day, and yes, it was well worth the trip.

Now, where to begin on sharing about this adventure?  If you read my previous post about why I chose to make this trip, then you are well informed about my battle with what I suspected to be SIBO (small intestinal bacteria overgrowth), and determination to find an expert I could trust.  Dealing with SIBO alone is one thing, but treating it while managing gastroparesis presents a whole new set of challenges.

Because of the connection flight cancelation, we arrived in Baltimore late and had to reschedule the breath test for early the following morning with hopes to have most of it completed by the time of my visit with Dr. Mullin at 10 am.  I checked in at 7:30, and started the test by 8 am.  After 2 days now of eating the restricted breath test diet and fasting for 12 hours, I was handed a small plastic bag that would be used over the next 3 hrs.  The first "breath" collected was completed (called the baseline) before drinking the lactulose solution.  Samples were then taken every 30 minutes and levels of hydrogen, methane and CO2 were measured.  I was not alone for this test either.  Six others joined me throughout the morning, as we read our books, played on our phones (sad but true) and watched an entire movie, The Help.  At least I can't say I was bored!

The doctor was able to see with enough time to complete the test and, with much anticipation, my husband and I followed him into his office.  He got right to the point, explaining the results were significantly high, something I was prepared to hear.  Not good news of course, but good to finally feel reassured there was indeed something other than GP going on, causing the discomfort.  Dr. M was incredibly kind, patient, and obviously extremely knowledgable when it came to digestive distress.  His holistic approach is what originally attracted me to see him, however, he insisted we be aggressive with treatment, and herbs/diet alone would unfortunately not do the trick.

Weeks prior to this appointment, I started making a list of questions.  As with any other important visit with a healthcare provider, I can't stress this enough to make the most out of your time.  I include the main reasons for being seen, goals, a brief timeline of my health history, current diet, and then the list of questions.  Bring two copies so that both you the patient, and the doctor can go over them together.  Dr. M was wonderful about this and spent time reviewing my history, discussing my goals and answering the questions, one by one.

By the time we were done, a plan of action was set in place, including:

1.  Agressive approach with antibiotic, Xifaxan (also known as Rifaximin), 2-3 months followed by another breath test.  This medicine is almost completely non-absorbable which means they stay in the intestines, and don't cause systemic side effects like most antibiotics do.
2.  Continue following a modified low-FODMAP diet.  With GP this can be a bit challenging but luckily I am already well informed in this area (see this post for more info) and have chosen to work with a nutritionist, also specializing in GP/SIBO.
3.  Supplements include ginger capsules, in separate doses throughout the day with food, Iberogast (which I have but never took consistently), and L-Glutamine to help heal and repair the gut.  After the SIBO clears and the digestive tract is absorbing more, we might consider adding some herbs into the regimen to help keep the bacteria at bay.
4.  Acupuncture treatments up to 2x/week.  This is definitely the hardest one to commit to because of cost.  Though I am fortunate enough to have this benefit on my insurance plan, my visits are reaching their limit.  Will have to do the best with what I have, knowing full well this has made a huge difference in my symptoms.

As much as I want to take this on without medication, I have decided to put down the fight and accept that this is the absolute best choice for the situation.  I feel at peace with it and actually excited that this could be the solution to treating the SIBO for good.  The thought of following a GP friendly diet now seems so much better compared to this!

I know this is a long post but I want to continue with a few more key notes, if you have the time.  Dr. M brought up an interesting study that discuses a possible link between gastroparesis and an autoimmune disorder, known as autoimmune gastrointestinal dysmotility (AGID).  It is a long shot and not commonly tested for, but he though it might be worth checking into.  I did my research as soon as I returned, was able to get test information through the Mayo Clinic and found a local lab who can send to Mayo for results!  This may take 2-4 weeks and will update the news when I find out.  You can read about the study here.

If you haven't already, I highly recommend you read Dr. Mullin's book, The Inside Tract.  He not only discuses the digestive system in an easy to understand format, but also shares his own story of struggling with health problems and how he overcame them with a holistic approach.

I will do my best to keep updates as my journey continues.  Please remember I am not a doctor.  My intention is to share with others what I learn along the way.  Always check with your health care provider when making changes to your management plan.  You can also contact me for a complimentary health consultation at stephanie@journeywithwellness.com.

Are you currently dealing with SIBO or have in the past?  Feel free to share your thoughts and experience in the comment section below so we can learn from each other!


UPDATE:  11/13/12
After 2 months of taking the antibiotics as well as plan of action above, including a low-FODMAP diet, my test results have come back NEGATIVE for SIBO!!!

May 2013
I have retested for SIBO and still clear, woo hoo!