Another overdue update. In my defense, both David and I are exhausted. I have completed my 6 weeks of TMS, so we no longer have the burden of the daily trip 30 minutes, each way.
However, we segued right from daily trips to San Rafael to working on getting me up to flushing 90ml in my J tube 3 times daily so I could start my Xifaxan and treat my severe Small Intestinal Bacterial Overgrowth (SIBO) and Intestinal Methonagen Overgrowth (IMO).
I am now in my second week of flushing my xifaxan 3 times daily, which means that David gets to play alchemist, as he grinds my Xifaxan into a powder, mixes it with an aqueous solution and sucks it up into a syringe for me to flush. Yet another one of those skills neither of us ever anticipated him developing.
David and I both expected me to start feeling better fairly quickly. We were both wrong. It remains a struggle to get my meds and bile salts into my J tube. I may have been beginning to see some positive results, but then I added 0.25mg of Motegrity into the mix to stimulate my gut, and that remains really uncomfortable for me. But I am continuing to take it in the hope that eventually we will be able to coax my small intestine into moving again, because I really want off the TPN.
A note on my loathing of TPN (IV nutrition). TPN is amazing and life saving and absolutely critical. But it also tastes terrible. My TPN infusion lasts 10 hours and I now run it during the day. Despite what I am about to say, I cannot imagine going back to running TPN overnight. When I lay down while running TPN, I immediately have a hot flash. And I used to wake up multiple times in the night, coated in sweat. I sleep so much better now that I run my TPN during the day. Giving up naps is so worth a good night’s sleep.
TPN runs directly into my bloodstream and as the day goes on, the taste gets stronger and stronger, until it fills my tongue and every one of my taste buds can taste it. And I can feel it in gums and my soft palate. And since it is in me, it is kind of inescapable.
Regular TPN, which I run 5 days a week, tastes bitter and unpleasant. But the lipids, which run the other two days, are simply awful tasting. The lipids are a combination of soy, olive and fish oils, and they taste just as good as you might imagine. And by the end of the day, I usually want to crawl out of my skin.
Some of you may know that I have a soy allergy. It is a common allergen, but there are no lipid blends for TPN without soy. I watched a great webinar this past year on the history of TPN . It was invented in the late 60’s and tested on beagles, but really came into its own in the late ’80s . I also now understand why there are no blends without soy — they tested lots of other plants oils, but soy just worked best across all categories — but it is an allergen nonetheless. Fortunately for me, it is a mild allergy, but it does mean that I feel like crap the two days a week I run lipids. That is on top of the horrible taste.
I can cover the bad taste for a couple of seconds by eating or drinking something with flavor. But I can only tolerate tiny bites or sips and not very much of either. And I can only tolerate one or at the most two hard candies a day because sucking stimulates motility, which still hurts, so that is what limits me. And I avoid eating or drinking during the hour after I take oral meds because my stomach drain is closed off (to give my meds their best shot at being absorbed).
The rest of the time, I just have to find ways to distract myself from the awful taste. But by evening, when the taste is at its worst, I am physically and mentally exhausted and it gets harder to not get distracted by the terrible taste.
I do remain (somewhat) hopeful of beating back the SIBO and IMO and being able to go back to enteral feeding. This is the first time in a long time that we are getting the meds into my small intestine. And those colonies have had at least a year to get themselves well established. That is why after the two week course of 3 times a day flushes, I continue to flush the meds into me once daily for 42 days. Hopefully, that will knock out the buggers.
For the moment, we both remain exhausted and just a little frustrated. And I have a case of Treatment Fatigue. It’s bad enough that I even want to skip acupuncture. But I don’t because acupuncture helps me as much mentally as it does physically. And my acupuncturist has figured out a needle combination that keeps me from having hot flashes while I lay on her table.
I have a rescheduled appointment tomorrow with an in-network motility GI that I have been trying to get an appointment with for a couple of years. But instead of eager anticipation I just feel…wiped.
Truth is, we both desperately need a break from my body. Preferably on the Big Island of Hawaii. Turns out it doesn’t work that way and my body would insist on coming with. And I have travel limitations because of my TPN and PICC line that we are not up to coping with. So we continue as we are.
![A smiling white presenting woman with glasses, wearing a black shirt with the words: [sic] "Powered bu tube feeds and IV's". Her hair is chin length curving under beautifully at the ends.](https://i0.wp.com/mojovampire.com/wp-content/uploads/2026/04/Settled-down.jpg?resize=771%2C1024&ssl=1)
