Month: August 2026

I have two draft blog posts that I started working on over the past few weeks, but I didn’t get very far in either of them. Life has really been a struggle. My pain and nausea have remained high, and I needed to complete 3 full weeks of uncomfortable medication and water flushes into my J tube (into my small intestines) 4 times a day before I started to feel better enough to try blogging again.

If you recall, my G-J tube was last changed July 6th, after the J tube on the previous tube was hopelessly clogged on July 4th. That new tube was nothing but trouble. I went from almost no leakage out of my stoma, to having to change doubled-up dressings multiple times a day. My once pristine and oft complemented stoma (ok, only by medical staff, but all the best nurses admire my stoma) started to suffer skin breakdown and small bleeds. I needed to use topical lidocaine to fall asleep because my stoma had become so painful.

But that horrible tube is now gone and my new tube is working just fine. But let me not get ahead of myself.

We join our story in progress. After 3 weeks of painful flushes, our heroine is finally feeling a bit better, with pain in the 6-7/10 rather than 7-9/10 on average. Friday night, Eva and David go to bed with thoughts of Shabbat morning baseball. But that was not relaxing morning was not meant to be.

Every morning I wake up at 7am to take my oral meds. I usually then crawl back into bed, where David has remained, for another hour or 2 of sleep. On Saturday, I got up at 7am as usual to take my meds. I went into the bathroom, turned on the light and immediately knew something was wrong. Even so, it took a minute or two before I fully comprehended what had happened. The balloon that holds my G-J tube in place inside my stomach had deflated into my J tube. And the entire tube was in the process of working its way out of my body.

I have severe gastroparesis, but my entire stomach isn’t paralyzed. My stomach routinely sucks my G-J tube in up to the external bumper in and then releases it. I have read about other folks with severe gastroparesis whose stomachs do the same thing. Anyway, on this fateful morning, my stomach was in the process of actively pushing out what was left of my J tube.

I took my meds, woke up David and we started to plan our trip to the ER. While David was setting up my hydration and TPN (IV nutrition), I called my PCP who manages my tube (because my GIs refuse to) and asked her to call ahead to Interventional Radiology (IR) to give them a heads up that we were coming in. It was a good thing too. The doctor covering IR for the day wasn’t coming in until 1pm. We shifted gears again, and settled into some morning baseball and tried to relax until it was time to leave for the ER at noon.

When I checked in at the ER, the clerk saw a note saying that my PCP had called in ahead of time. We went to go sit and wait for our turn in triage. And wait we did. After an hour of not making it into triage (they were busy, but not that busy), David went to go see what was going on. The clerk said he would check with the triage nurse as soon as she was finished with the current patient.

Some more time passed, a new person was brought into triage without the clerk talking to the nurse. So David went back up to remind the clerk of our existence. But we had not been forgotten. The person who went into to triage was having a stroke. David sat back down.

It was then that I realized that neither of us had gotten the usual notifications from the EPIC portal that we get after checking in at this particular ER. I checked the portal and it said that they were awaiting our arrival at the ER. Which made no sense, because when I first checked in, the system had printed out a stack of labels and I had gotten my ID bracelet.

It seems there had been a technical glitch. I showed as checked in and waiting triage on the front desk clerk’s system, but I didn’t show up at all in the triage nurse’s system. To the hospital’s credit, as soon as they figured out what had happened, everything sped up and we were brought right into triage. As it happened, the doctor in triage remembered having sent us home back in July with fluid pouring out of my stoma, soaking through my doubled dressing and soaking my shirt. She still felt sorry at having released us without any resolution to my prodigiously leaking stoma. I was whisked off to IR before I even got into a room.

The doctor in IR was the same one who had insisted that the previous tube’s placement was fine. I carefully held my tongue and didn’t say “told you so” that the balloon completely deflated, although I did suggest that perhaps it had been a defective tube. What I bit back was the thought that given how I had atypical issues with that tube placement and that after 4 years of being a tubie, I might know a thing or two about my body and tubes. We left it at an agreement that he would fill the balloon with 10ml of fluid because that worked best for me.

Fast forward to today. My new tube is working out very well so far. I am back to using a single sponge dressing and only needing to change it every 24 hours. I remain a bit sore because they needed to push air into my stomach to be able to see to place the new tube since they didn’t have the old tube to guide them.

Although it was exhausting and difficult, the timing of yesterday’s tube exchange could not have been better because tomorrow I restart Transcranial Magnetic Stimulation (TMS) for my depression.

For me, physical pain is paired with emotional pain. So those weeks and months this summer of pain in the 7, 8s and 9s out of 10 were really hard on my mood. So it is no surprise that my depression has once again reared up its ugly head.

This TMS treatment is just a booster and therefore doesn’t have a firm treatment length. We will be assessing my mood at the end of every week and use that as our guide. But I am grateful that the 21 day Small Intestinal Bacterial Overgrowth (SIBO) treatment and the recent tube change have me in the best possible shape before restarting daily trips to San Rafael for TMS, a good 30 minutes away.

If you recall, back in May David and I attended a fiber shed festival and I bought some Wensleydale fiber there. Well, with huge thanks to Samantha Cook and her Thriving with Gastroparesis group, I am happy to say that I am both spinning and knitting again.

Samantha helped me realize that I don’t need to wait until I am feeling better to do the things I want to do. Don’t let my recent crafting progress fool you. The past few weeks have been absolutely awful. With pain in the 7s and 8s out of 10.

And I cannot do these things as I have in the past. I have to break simple tasks like choosing a pattern, choosing the yarn, locating the appropriately sized needles into smaller sub-tasks. Each of these steps can take days or even weeks. But by doing a little bit every day, I am back to doing the things that bring me peace. And for that, I am eternally grateful.

On the medical front, I am also back on a 3x day xifaxan for another couple of weeks and that is already bringing my pain back down to 6s and 7s (with unfortunately, still 8s in the evening — we have yet to figure out how to make evenings better for me) which is how I am able to write this blog post today. Once I finish this treatment course, I will continue a single daily dose of xifaxan with the hope that that will keep my Small Intestinal Bacterial Overgrowth (SIBO) at bay.

Reading continues to be a real struggle. Just checking email and Facebook/Instagram/Threads for a few minutes can really do me in, with pain and nausea spikes. But, I am now at a place where I can listen to audiobooks for a short time each day. Right now I am listening to Emily Wilson’s translation of The Odyssey. Because epic poems are great for listening to while spinning or knitting (unfortunately, none of my looms are warped otherwise weaving would be the most appropriate fiber craft). Hers is an amazing translation and I recommend it to everyone.

Even this blog post took me several days. Selecting and downloading and then re-uploading the photos was a 2 day process. And now on day 3 I am actually writing the text. Like I said, doable. Just slowly.

This is a vast change from someone who used to run around and get everything done before I could finally sit down, take a deep breath and relax. And it is not an easy transition. Even 5 years into this illness, I tend to push myself to do things past when I should take a break. It is hard to stop when I am just getting into the groove. But I continue to practice paying attention to my body’s cues, even if I blow it more often than not.

Speaking of which, I feel like this post has taken too many days to get out and I am just going to hit publish now.