I finished my Xifaxan this week. But before I tell you how things are going, let me refresh your memories.
Back in February, I started needing to continuously vent my stomach to stay even somewhat comfortable. Since then everything I drink, and almost everything I eat, gets vented out. That is why I need IV fluids to stay hydrated.
In addition to the stomach discomfort, the pain in my intestines ramped up. The pain was so bad that I couldn’t make it through the day without tears.
Without going through the whole saga again, my GI team and I ended up with a plan where I would take a course of Xifaxan for Small Intestinal Bacteria Overgrowth (SIBO) and after I completed that, start Motegrity. I have used Motegrity before, and it didn’t help with my nausea. This time my GI prescribed it to help with the gas in my gut.
That brings us to today.
On the one hand, the Xifaxan has significantly reduced the pain in my intestines back to their usual 5 (on a pain scale of 10), which is my normal. I can get through the day without crying (mostly–I still need to close off my vent for an hour after I take my meds and that can get dodgy).
This is good news. I have felt better than I have in months and I am really enjoying the respite. I would be enjoying it more if the nausea were better controlled. I have tried all of the best meds for nausea, and only Zofran does the trick. But even that has limits. Today was a good day. Yesterday was not. That is how it goes.
On the other hand, I am still needing to continuously vent my stomach. I have only been on the Motegrity for a few days, so I am still adjusting to it and it is too early to make any kind of determination. I get to see my GI again on July 7th. By then, I should have a real handle on whether the Motegrity is helping at all.
This is a good reminder that my symptoms are complex and layered. Based on how effective the Xifaxan was, I am comfortable concluding that I did, indeed, have SIBO. And that when I get SIBO again — and given my slow motility and leaky pyloric valve, I am comfortable saying that it is a when, not an if — we will know what to do. In fact, we are hoping to get an Rx for Xifaxan to keep in the house so I don’t have to wait months for treatment again in the future.
It also means that I will be hanging on to my PICC line for a while longer.
Back in February, when I was getting off the TPN and before I started needing to continuously vent again, it looked like I was going to be able to get my PICC line pulled. In anticipation of getting my PICC lines pulled, we bought a couple of thank you gifts for my nurse Jennifer, who has been coming every week to change my dressing since last August when I was released from the hospital.
But, things didn’t work out quite as we planned, and here we are in June and it looks like I will be hanging on to my PICC line for the foreseeable future. Given that, we decided to give Jennifer her the gifts this week. Over the course of time, she had revealed herself to David as a fellow Swiftie, so the gifts were Swiftcentric. She was very touched and appreciative.
Most importantly, it gave David and I an opportunity to express our gratitude to her. She has taught us both so much and continues to be there for us, in person and by text, since those terrifying days back in August, with a brand new PICC line and all of our uncertainties about keeping me safe. She is the reason that when I recently had an issue with my PICC line that once might have sent us spiraling in panic, we were able to calmly resolve it just as any skilled infusion nurse would.
Just to be clear, this is the level of care that absolutely everyone should be receiving. But I know from way too many stories in my gastroparesis and tubie groups, that I am incredibly lucky. Lucky to have had a consistent nurse throughout. Lucky that the agency she works for has retained their nurses for years (although there has been some recent turnover and the agency is instituting cost cutting measures that may impact my access to their 24 hour nurses line) and lucky that the pharmacy that supplies me gives us everything we need to prevent infection. Not every pharmacy that she works with does that.