Better Late Than Never

We are very overdue for an update, but we just have been running so hard that neither of us have had time to actually write anything. Even now, I am just grabbing a few moments between my weekly nurse visit and therapy.

The good news is that the Transcranial Magnetic Stimulation (TMS) is working. And it has indeed made my life easier to bear. The daily trips to San Rafael are exhausting and still cause me pain and we still have a couple more weeks of treatment, but we are definitely getting there. I have learned a lot about how to make car trips a bit more bearable. Which is good because I have an in-person appointment at Stanford and that hour and a half drive has historically been really hard on me.

The consistent acupuncture is also helping me a fair amount. When I first started with this acupuncturist, my body was just completely opposed to anything that wasn’t just basic support. For example, if my acupuncturist tried to improve my motility, my body would respond negatively (either with pain or nausea) and she would pull out a specific needle or two and I would immediately feel better. But with time, my body has become generally more receptive and she has been able to help keep me consistently more comfortable.

I have had a couple of significant appointments since my last update and I am running short on time, so here is the Reader’s Digest version.

I took two Small Intestinal Bacterial Overgrowth (SIBO) breath tests. One orally and one through my J tube. I was fairly confident that my previous tests had not adequately captured what was happening in my small intestine and I was right. Even though my last course of treatment was only a month ago, my oral test came back positive for SIBO. More importantly, the J tube test showed both severe SIBO and was positive for Intestinal Methanogen Overgrowth (IMO). IMO is the overgrowth of the bacteria that produce methane in your small intestine. Methane gas has no odor, so you need a breath test to diagnose it. Methane can seriously slow one’s small intestine, so that is a big result given the difficulty I am having getting my small intestine to move.

Speaking of my small intestine’s dysmotility, it appears that very little of what I take in orally actually gets into my small intestine. It stay in my stomach until my stomach vents it into my drain bag. Unfortunately, that includes medication. It is kind of necessary that I be able to flush meds into my J tube. But right now, my small intestine is barely tolerating the 120ml of bile salts that I flush into it daily. Some percentage of those bile salts reflux into my stomach and out into my vent bag almost every day.

I am still waiting for the med that will address the IMO to arrive. Fortunately, that med only requires a small volume of liquid to go into my J tube. I am hopeful that I will be able to do that 3 times a day, if not immediately, then within a day or two. My hope is that a few days of that will allow me to start doing the more serious flushing I will need to do to get the xifaxan directly into my small intestine via my J tube.

Unfortunately, xifaxan is not available as a liquid, and compounding pharmacists don’t work with it because the ingredients are too expensive in the US (this is one of the meds I get from a Canadian pharmacy because it is obscenely priced in the US, and fairly reasonably priced in every other developed nation). But we have instructions and aqueous solution to turn xifaxan into 60ml of liquid that I can flush directly into my J tube. That needs to be followed with a 30ml flush to ensure that all of the meds are out of my tube. So, it will probably take some time until I can get a minimum of 90 ml in my J tube 3 times a day. But once I achieve that, I am hopeful that resolving the severe SIBO and IMO will allow me to get off TPN (IV nutrition) and go back to enteral feeding through my J tube.

In addition to treating the SIBO and IMO, I am going to be trying 0.25mg of Motegrity taken at night. That is half the dose that I tried previously. And the reason I am trying it at night is because that is when your bile runs through your small intestine to cleanse it while you sleep. The hope is that improving my nearly nonexistent motility in my small intestine will also help reduce the bile refluxing into my stomach. Apparently, bile is never supposed to be in your stomach. Your primary bile duct pushes bile into your small intestine and when it gets to your terminal ileum it is reabsorbed and recycled before it hits your large intestine.

I learned that important fact and so much more in Dr. Steven Sandberg-Lewis’ book Let’s Be Real About Reflux. Not only did I not know that bile doesn’t belong in stomachs, neither have any of my previous doctors. Whenever they see me draining bile, they just dismiss it like it is normal. It is not how our anatomy is designed to work. Anyway, I have read so many medical articles about gastroparesis and intestinal dysmotility and SIBO and not one of them have explained how the gut works as clearly as this book has. Even if you don’t have reflux and just have a basic interest in how your insides work, I highly recommend this book.

Ok, this post got longer than I intended because I picked it up again after I finished therapy and found myself trapped under a cat, so I just kept typing. Last, but certainly not least is that baseball is back to help us decompress. We watched Spring Training and a couple of the World Baseball Classic games, but we missed NESN’s coverage and are glad to have our usual broadcasters back. I still don’t quite understand how I became a baseball fan in middle age, but what can I say, David has had a good influence on me. 🙂