Category: Gastroparesis

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. 🙂

Apparently, it’s been quite a long time since we’ve posted. I’ve been posting some updates on my Facebook page, but this blog has been awfully quiet. So this will serve as a brief recap to last month or so, as well as a bit about where we are now.

Some things have changed rather significantly. Eva no longer has a gallbladder. Unfortunately, while that dealt with one type of pain, there was another pain we were hoping it would address that it didn’t. The surgery itself went well (on December 24th), though the healing was more painful than either Eva or I anticipated. It was a laparoscopic procedure and I think we both had the sense that it was therefore “no big deal.” It remained major surgery, minor only in comparison to having it done conventionally (or whatever you call non-laparoscopic surgery). Eva was fully debilitated for ten days.

At the end of the ten days, Eva got suddenly quite sick. On January 5, the nurse came in the morning (9:00 AM) to draw labs and take vitals. Her vitals were very slightly off for her (think 120 over 65 rather than 102 over 62). By 1:00 PM, Eva had spiked a fever (100.0, which is a lot for her), her blood pressure was way up, her she was shaking, sweating and shivering. By 4:00 PM, our primary care doctor wanted Eva to go to the hospital via ambulance. This led to 4 days in the hospital, treating for suspected sepsis and working to get Eva’s pain and diarrhea under control. On the 9th, she was finally ready to return home, albeit with some new bile salts, and a new suggestion for what was causing the pain that the removal of the gallbladder was supposed to cure but didn’t.

The pain which had been tentatively ascribed to the gallbladder is now being seen as muscular skeletal pain along the rib cage. This diagnosis was not due to the hospitalist, but due to a visit by a GI who came by. She saw where Eva was hurting, had her move a little, and said, “this isn’t GI pain.” This is opening up some new treatment options, like lidocaine patches.

The bile salts, whatever those are, seem to be dealing with the diarrhea and are also lessening the intestinal pain. While that is good, it isn’t enough of a lessening for Eva to be able to return to tube-feeds rather than IV feeding (though, as I type this, she is setting up to try a trickle feed to see how it goes, since the dietician asked her to give it a shot yesterday).

All of this pain, new (muscular-skeletal) and old (intestinal), has been taking a huge toll on Eva. For the last two months or so, she has been slipping into a depression. While the usual answer for that would be medication, Eva has medication-resistant depression. What works for her is transcranial magnetic stimulation (TMS). The downside to that is that it is an intensive process: 18 minutes a day, five days a week for five or six weeks, in person, at a doctors office. We were set to start this process on Monday of this week, but insurance hasn’t yet rendered a determination on coverage. So we are still waiting, with Eva feeling crushed in spirit and body at the moment.

Fundamentally, Eva (and I, to a lesser degree), are needing to redefine what normal looks like (again). The baseline expectation that we hold keeps resetting ever downwards. Quality of life slips lower each time something that seemed “temporary” begins to feel like it might be the new “normal”. While gastroparesis is not typically a degenerative disease, it is also, in some ways, not so much a diagnosis as a symptom. And we remain unclear what it might be a symptom of.

We are moving forward. Eva is looking into getting pain-blocks for the muscular-skeletal pain. Eva has an appointment with her Naturopath GI in Portland (telehealth) to look more closely at root causes. And we are waiting on the TMS. But all in all, things around here feel pretty bleak.

I have been denying my hunger for as long as I can remember. I would see my peers seemingly mindlessly giving in to this basic human need. But from a very early age, I knew that that carelessness was not for me. My destiny was to practice not giving in to hunger. And I was really good at it.

With decades of practice, I thought that I was a master of hunger denial. And then, back in 2018, I completely lost any appetite. It was just gone. I lost any interest in food. Which was a problem, because without any hunger whatsoever, it can be very difficult to eat. Especially after a lifetime of denying my appetite.

I did eventually figure out that if I exercise A LOT. Like way more than should be necessary, I would be able to eat. As long as I did it with about an hour after exercising. If I didn’t eat by then, then my appetite would disappear again. This meant that I was in really good shape when the pandemic hit and I stopped going to the gym.

I did mention my complete lack of appetite to all of my doctors at the time. But despite the fact that a radical change in appetite is an actual symptom of multiple medical issues, none of my doctors thought it was a problem because I was overweight and not wanting to eat meant that I was losing weight.

Fast forward a few years, I still don’t know if the change in appetite was an early symptom of my gastroparesis, but it had certainly been helpful given that I can’t eat. But recently that has all changed.

All of the appetite that I was missing ‘lo these years has come roaring back with a vengeance. I am now fiercely hungry. I am vampire staring longingly at a pulsing jugular hungry. I am a teenage boy wanting to inhale everything in sight. I am starving.

That last sentence is not an exaggeration. Despite the fact that I have the exact same nutrition pumping in to me as I did last time I was on TPN, which caused me to gain 20lbs. This time, I am dropping weight at the same rate I did back when I was starving. Before Etisarap helped me feed again.

The tag line for gastroparesis awareness is “starving for a cure.” I have never felt the starving part of that so acutely. I am obsessed with food. I cannot stop thinking about it. Unfortunately, thinking about for triggers motility. That leaves me caught in a cycle of pain and nausea. I am in hell.

I have an appointment with my dietician on Thursday and we will see what she has to say. To this point, she hasn’t been concerned about my weight loss. Even though I am down 31lbs since I had to drop my feed to 60%.

This is exactly why I was ok with having some fat reserves. The medical system moves slowly, and I need some buffer to factor in the time it takes to resolve any issue. Last time, it took me losing 30% of my body weight to get a GI’s attention. Hopefully, we will get this resolved before things get that extreme. But it is good to know that I have the weight to lose.

This is a complete 180 on my past perspectives on weight gain. But don’t think that I have magically made peace with my body. I have made minimal progress on accepting how my body looks. But, I have starved with fat reserves and without, and it is SO MUCH HARDER to starve without fat reserves. Starving without fat reserves leaves me in bed, barely able to function. Starving with fat reserves means that I can still mostly live my very limited life.

I’m back, sort of. I have an update further down this post. But first, a post on grief.

Life with chronic illness is filled with grief. Grief over the loss of self, the ability to do the things I once enjoyed, the relationships that this disease has damaged, the isolation, and right now, the inability to eat or drink anything more than a single jellybean or a few sips of water.

G-PACT is an organization that supports people with gastroparesis. They put out this post just before Thanksgiving and it really captures a struggle that is particularly wearing on me right now.

Imagine sitting down to eat your favorite food – the one that brings you comfort, joy, and memories. Think about how much you look forward to it, how it brings people together, how it fills not just your stomach, but your spirit.

Now imagine being told you can never eat it again. Imagine watching everyone around you enjoy meals while you sit quietly, isolated by something as simple (and as complicated) as food. The lingering stares. The well-meaning but painful questions. The trial-and-error of foods that only lead to nausea, pain, or days of exhaustion. The events and holidays you start missing because being around food is too hard, or because you’re simply too sick to go. Imagine losing so much of what once felt normal, and trying every day not to feel bitter, broken, or left behind.

This is life with gastroparesis. Some in our community can still eat a few foods. Others can’t eat anything by mouth at all, relying on tube feeds or TPN to survive. But all of us feel the isolation and the loss in one way or another.

To start, I can’t even read through that message without tears. It triggers a deep and primal grief. Our brains are hardwired to seek food. Newborns know how to find their mother’s teat or breast. I feel a desire deep in my jaw to chew. But chewing triggers gut motility, and for me, that means nausea and pain.

I have been struggling with a deep and searing grief about not being able to eat for a few weeks now. The whole issue is exacerbated by the fact that I am often hungry. Being hungry on TPN (IV nutrition) is not terribly unusual. Just cruel. It seems that the more I am able to get my nausea under control, the hungrier I get. It is like they are on a continuum. And as awful and gut wrenching as the grief is, it is still better than the nausea.

And if the hunger wasn’t bad enough when I am awake, I dream about food. I suffer regrets for all of the times that I didn’t eat because my eating disorder made it impossible. This obsessions with food is a symptom of starvation. Although I am getting full nutrition, my brain has decided that since I am not putting anything in my stomach, I must be starving. Yes, once again my brain is offering exactly the kind of help that I could do without.

This all set the stage for a really terrible, horrible, no good, very bad Thanksgiving. Thanksgiving used to be one of my favorite holidays. First off, it was secular, so there were no defined rituals, no going to synagogue. It involved cooking, which meant that I got to spend my time thinking of menu ideas, going to farmers markets and cooking with friends. The cooking with friends was truly my favorite part. Completely inefficient and super fun.

It has been years since we were able to have a good Friendsgiving. But that hasn’t made me appreciate Thanksgiving any less. And last year, I was healthy enough to taste everything that I wanted to taste. I knew I was lucky at the time and I did appreciate it. A lot. But even knowing it was possible did not prepare me even in the slightest for the searing grief I felt this Thanksgiving. It was truly one of the hardest days of my life, emotionally.

When my father died, I was able to channel my grief by walking. The year after he died, I walked 723 miles. Every morning, I walked 5-6 miles. No agenda. Sometimes I walked alone, sometimes with a friend and her dog. But I just kept walking until one day I didn’t feel the urge to displace Dancer and walk. I had worked through my most acute grief.

I cannot walk 5-6 miles a day. I can’t even craft. It took me two days to write this post. Concentrated effort just wipes me out. Leaving me nauseated, in pain and completely depleted.

That leaves my grief festering without any kind of outlet, which is a bad thing. But I am doing my best, between therapy and acupuncture to deal with it a little bit at a time.

I have so much more to say on this topic, but my energy is waning and I don’t want this to have to be a three day post.

For the promised update:
I have gallbladder surgery scheduled for December 24th. It is scheduled as an outpatient surgery, but my PCP wants me to stay overnight if the surgeon offers it. But I don’t know what is worse, being in an understaffed hospital on Christmas Day or possibly having to go to the ER on Christmas Day if there is a complication. I guess we will just have to see how it goes.

My liver numbers are not where we would like them to be, so we have reduced the hours of my TPN from 12 to 10. Which means that I have switched it from night time to daytime. It continues to be an adjustment. My day is now seriously regimented. I wake up, get hooked up to hydration for two hours. Then we need to hook me up to my TPN immediately after so we don’t have to stay up too late to disconnect me. We are still working on the logistics of navigating other commitments that require us to be out of the house when the switch happens. But we will get there.

Overall, I am very happy with the switch, even if my liver remains unconvinced. TPN makes it really hard for me to manage my body temperature, so I overheat at the slightest provocation. Like my drain bag getting clogged. Which is does all of the time. It is just much easier to react and remove layers when I am awake rather than waking up completely overheated and sweaty. Also confirms my theory that my night sweats were caused by TPN, not hormones.

Ok, that’s all I can do for now.

*Sometimes you just need a flavor, any favor in your mouth other than mouth. or a need to cover the taste of ondansetron–which while critically necessary for managing my nausea, tastes terrible and leaves a lingering taste for HOURS. Jelly Belly jelly beans are much beloved by those of us on TPN because there is a whole lot of flavor in something tiny and easy to digest. Usually.

First the headline: nothing has gotten any better.

Maybe a month ago or so Eva developed a new pain (because that was exactly what she needed). It is in the upper right quadrant of the abdomen. There is good news associated with this: apparently there is exactly one thing that causes pain there: the gallbladder.

There’s also another another new symptom that seems gallbladder related: intense pain for 10 – 15 minutes accompanied by discharge of a cola- colored fluid in Eva’s vent bag (normally the discharge is a bright yellow).

Following an ultrasound, it was confirmed that there are some issues with Eva’s gallbladder: sludge, stones, and a 6 mm polyp. The polyp is apparently a long-standing thing, and therefore not worrisome in the way it might otherwise be. Stones and sludge are not inherently problematic, unless they are causing pain. Which they are. So we see a surgeon to see what he thinks.

We saw the surgeon yesterday. He thinks Eva is complex. With someone else, he would be giving 97% to 99% odds that removing the gallbladder would fix that pain. With Eva, he feels like it is a toss-up, but there’s no other treatment. With some trepidation, Eva is going to go ahead and schedule surgery to remove the gallbladder. Actually, she has scheduled a call with a scheduler to schedule the surgery. Streamlined, this process is not.

We have no reason to believe that this will fix the intestinal pain that prevents her from using her J-tube for feeding (though it would be lovely if it did), but suspect it will fix the additional pain (which is mainly around a 7 on a 10-point scale) associated with the gallbladder. And less pain is better (not our family motto, but it might be in the running). Also, it seems like doctors would like to get the “extraneous” pain dealt with before focusing on the intestinal issues more closely (in part because no one has any more good ideas on the intestinal pain).

Speaking of intestinal pain and getting more data: we met with an interventional GI this week about the colonoscopy and small bowel enterography mentioned in my last post. The key question was how to do the colonoscopy prep. For those who have done a colonoscopy prep, little more needs saying. For those who haven’t, there exist two options for colonoscopy prep: high-volume and low volume. High volume colonoscopy prep involved drinking 4 liters of a solution that flushes everything in your GI tract out your anus. By the end, you are putting out clear liquid, and therefore when they stick a cameral up your butt, they can see pink flesh with no other matter to block the view. It’s about as wonderful as it sounds. Needless to say, getting 4 liters of anything into Eva is a non-starter.

But then there’s the low-volume prep: that’s only 2 liters. With the same result. Which unfortunately, is also 1.75 liters more than is really imaginable for Eva. Also, the GI says that people with slow motility (e.g., those with gastroparesis) tend to do better with the high-volume prep because it is harder, not easier, to flush everything through the system.

The end result is that a colonoscopy is not a good option for Eva. We did ask what she thought might be an option to try to get more information about her intestines. The only option she could come up with was surgically going in and taking a look, which she felt was rather a big deal. We agreed. So for the moment, we are going to wait and see what symptoms remain following the removal of the gallbladder.

Step by step, we keep moving forward. But this is really a lot less fun than it looks from the outside.

This is David writing. Eva is too distracted by pain to feel like writing.

I suppose that first paragraph could be the entire blog post. But I’ll add details.

We still don’t know what’s wrong. We know it isn’t c. diff. Multiple stool tests have confirmed that. And there is no evidence of a UTI. But Eva’s white blood cell count has been gradually rising, suggesting an infection somewhere in the system. Unless it’s just being caused by stress.

There is, as mentioned above, a lot of pain. Some days are better than others. Some days are worse. They aren’t ever good.

As I mentioned last time, the GI wants to do a special MRI called enterography. This would give a close look at Eva’s intestines. Unfortunately, to do this, Eva would need to get 1500 ml of contrast into her digestive tract. Now, we have a fairly clear idea of how much we can put into Eva’s intestines, depending on whether the contrast acts more like her formula or more like water.

If it acts like formula, Eva can pump it in at 3.5 ml/hour. In which case it would take 428 hours to get it in. Obviously a non-starter. If it acts more like water (or exactly like water) we might get it in at the rate at which she can push water flushes, roughly 60 ml/15 minutes. Which would take more than 6 hours. And assumes that Eva can maintain that rate for more than 2 syringes of 60 ml each, which is untested. And it assumes it doesn’t start pushing stuff out the other end, which seems like a really bad assumption.

All in all, it seems unlikely that this is going to work at all.

After pointing all this out to various doctors, we are now working on a variety of other options.

An abdominal CT scan, which is looking at Eva’s liver in particular. Her liver enzymes have been elevated for a while, and people aren’t delighted with that. Eva cut out one pain med mid-week and we will see if her labs look better Monday (we should have gotten a first look with Thursday’s labs, but they seem to have gotten lost in the maze that is Quest Diagnostics). The CT scan should show any physical abnormalities there.

A colonoscopy with small bowel enteroscopy has been ordered because if you can’t see it with an MRI, you can always go in with a camera and take a look. This is looking, again, for physical features that might lead to pain and trouble feeding enterally.

Meanwhile, Eva is not only getting full nutrition from TPN (IV nutrition) she finds herself somewhat dehydrated, despite receiving 2.25 liters of fluid with the TPN. So we are now infusing another liter of saline either daily or every other day depending on how Eva feels. This also falls into the “somewhat weird” category.

In summary, we still don’t know what’s going on, Eva’s miserable, and completely over being a medical mystery.

Again, this is David writing for Eva.

There isn’t a major update, but it’s been a bit, so an update felt appropriate.

Eva continues to ramp up her TPN. She is in the penultimate step to full nutrition. We expect to hit full nutrition Monday or Tuesday.

The process of ramping up TPN (IV nutrition) is, as I think I have mentioned previously, normally done during a hospital stay. We have been able to avoid this by agreeing to make sure that labs happen every day (except Sundays). Two days a week the nurse comes to us to do various things to Eva (change the dressing on the PICC line, change the extensions, take vitals). Four days a week we drive to Novato (about 40 minutes) to have labs drawn there.

Car rides are tough on Eva. the jostling causes pain and nausea. It is tiring for her. Nonetheless, our constant refrain has been, “it’s better than being inpatient.” And it is, massively. But it is also wearing.

Generally, the labs have looked fine. A few numbers are beyond the normal limits in the labs drawn the last two days, but we don’t think they are anything to worry about. We will likely hear more about that tomorrow, and it may involve slight changes in the formulation of the TPN (this is why there are daily lab draws, after all).

We still have no idea what is causing Eva to be intolerant of feeding enterally. The Stanford GI wants an intestinal MRI. We aren’t sure what she’s looking for but are just grateful that she has an idea and a place to look.

Eva is slowly returning a bit more to herself as her nutrition returns. Bear in mind she was on 60% nutrition or less for about 8 weeks, and for some of that time was down to about 10%. She isn’t yet able to go back to spinning yarn–I suspect it will take both increased nutrition for a bit and a bit less pain.

This weekend a fiber festival is happening about an hour-and-a-half from here. Since the summer, our goal had been to get to that festival. It’s not going to happen. That length of car ride is too much for Eva, much less the walking around the booths and exhibits. This is the one future plan we had made in a long time. We needed to abandon it.

This is how we live life: conditionally. We are not crushed by not being able to go to the fiber festival. A bit disappointed, but we always knew something could come up. We don’t plan ahead (except for doctors’ appointments). We can’t reliably plan what next week will bring, much less a random date months from now. And that’s okay.

Eva often says that other’s can’t and don’t understand our life. And that’s true. It is so alien to the way those who are not chronically ill live. I think we do better with it than we would have expected. We are in place of accepting what life throws at us and adapting as we go. But it definitely requires letting go of expectations or plans.

And yet, hope remains. If not this fiber festival, perhaps the next one. Or Eva giving herself permission to buy some extra roving to turn into yarn for when she’s ready. I take walks in the hills surrounding our home and see young bucks thinking mating thoughts. We move forward, wondering what the future holds.

Once again, this David writing for Eva.

A week on from the last post, we have some clarity on where we are going, but none on what’s going on. I’ll start with the news, and then get to the philosophical ramblings alluded to in the title.

As you may recall, Eva is/was down to 3.5 or 5.0 ml/hr on her feed (which is about 10% of what it should be). We had two plans for improving that, and two hypotheses about what was going on.

Plan 1 was to supplement her feed with Prostat, a protein concentrate, through her tube. This was not successful. It traveled through her system very quickly. And unpleasantly.

Plan 2 was to switch to an elemental formula (one which contains the nutrients in a pre-digested form). This wasn’t a failure, but doesn’t seem to have fixed anything either.

Hypothesis one: Eva had stopped tolerating her formula. Test: Switch formula. If the hypothesis is true, symptoms should ease with new formula. As seen above, in Plan 2, symptoms did not ease. This suggests that Hypothesis one is false, which is to say, the problem isn’t Eva’s formula. This is both good and bad news. Good in that we really don’t want Eva to develop intolerances to her formula every couple of years because there just aren’t that many appropriate options for her. Bad News in that it doesn’t move us any closer to a solution.

Hypothesis two: Eva had c. diff. Test: a stool sample test. Which came back negative for c. diff. and everything else. Also, her bloodwork looks good, no inflammatory markers or elevated white blood cells. This all suggests that there is no infection present.

This leaves us where we are now: we have no idea what is going on. More on that later in this post.

We do know what we are doing: Eva is going on TPN. We are hoping to start that this evening. It will be a slow ramp-up, which allows us to do this without an inpatient hospital stay. That means that Eva will not see an immediate increase in calories, but that should build steadily over a few weeks.

Now back to the title.

A little while ago, Eva and I looked at each other and agreed that we finally had a bit of a handle on her health. Not that things couldn’t and wouldn’t go wrong, but that we would recognize what was going wrong and know what to look at. For instance, if she suddenly ceased to be able to feed at her normal rate, it was either some infection (c.diff. or SIBO, for instance), or an intolerance to her formula. Obviously, in hindsight, this is hubris, the belief by mortals that they are the equals of the gods.

We are now in a place without any idea of what is going wrong with Eva, but with clear indications that something is. At this point, we do not know whether there are any tests that we should/could be running that will point us towards answers (we are communicating with Eva’s GI to try to figure that out). There is a sense of not-knowing even what questions to ask which is unfamiliar and disturbing.

Which brings us to Humility (anavah in Hebrew). As we are in the middle of the Ten Day of Repentance, humility is a featured virtue. And in knowing that one does not know, there is a deep humility. We are required to acknowledge that our knowledge is not as vast as we imagined. To admit that there are problems whose causes we lack even the language to imagine.

We are trying to treat this mystery as just another step in learning to manage Eva’s disease. But from the inside it is frustrating and scary. And Eva is doing this on around 250 calories a day.

This is David writing for/with Eva. Life has gotten adequately interesting that we felt like an update was necessary, and hard enough that it didn’t seem like it would happen if Eva had to write it.

Quick recap: Eva has been at roughly 60% nutrition (775 calories) for about the last 6 weeks. In normal times, she runs her feed at 50 ml/hour. Six weeks ago, she ceased to be able to tolerate that speed, and had to reduce to 30 or 35 ml/hour during the day and only 25 ml/hour at night. It was just too painful to go any faster. Not to say it wasn’t painful at those speeds, but it was “tolerable”. Over this period of time she dropped 15 pounds.

Tuesday evening, Eva got really sick with pain and cramping and diarrhea. Eva’s baseline pain is around a 5. It spiked up to a 9 (note that 8 is when the pain is enough to cause her to cry). Eva reduced her feed speed to until it was tolerable: 3.5 ml/hour. For reference, at 3.5 ml/hour, it would take 285 hours to get 1 liter (Eva’s theoretical goal).

Since then, Eva has been able to tolerate 5 ml/hour when she is awake and her G tube is venting, and 3.5 ml/hour at night or when she has to close off her G tube for an hour after taking her meds (so that the meds don’t flow right out the G tube. Yesterday this resulted in a whopping total of a 74 ml of formula getting into Eva’s intestines, for the 111 calories referenced in the title.

The good news is that Eva is already on IV hydration at a liter a day, so we are panicked about the lack fluids from the decreased enteral feeding. If she did not have a PICC line and IV fluids at home, we would be in the hospital already.

Why is this happening? The short answer is, we don’t know. We have hypotheses, some of which are testable, some are, at the very least, harder to test.

One possibility is that Eva has developed an intolerance to her formula. This already happened once (Summer or 2023, I believe) and she had to switch from Kate Farms to Nestle Compleat. The symptoms looked pretty similar. On the one hand, this is good news, because it is a relatively easy fix (for certain, really odd, definitions of “easy”).

By chance, we had an appointment with the dietician yesterday. She had been out for six months on maternity leave and we had been working with a substitute. Welcome back to chaos!

She suggested a new formula. We are receiving a new and different formula from Amazon today (Neocate Splash!). It is intended for toddlers and small children, and is a different type of formula: elemental. We are unclear about what that means, but the dietician seems to think it might work. We are also adding in some protein liquid straight through the tube (collagen something or other…).

I said this was the “easy” solution, because best case scenario, Eva’s intestines encounter the new formula, stop protesting, and allow Eva to go back up to 35 ml/hour day, 25 ml/hour night, and she is able to start the process of increasing her feed rate at a maximum of 2 ml/hour every 3 days. At which rate she gets back to full nutrition in a month or two. Realistically, it will probably take longer than that to know whether he body accepts the formula, and the ramp-up will not start back at 35 ml/hour but at something slower, and there will be more pauses in the middle. Again, this is still best case.

Second hypothesis: Eva is sick. With something else on top of the gastroparesis. If she has some sort of infection (e.g., something like c. diff., but probably not c. diff. because we tested for that a month ago or so). This feels somewhat likely given that she has had similar symptoms from infections in the past (c. diff., SIBO). But given that it doesn’t feel to Eva like SIBO, and she recently tested negative for c. diff., it would be a new and different infection that would need tracking down.

What are our next steps (besides the new formula)? We are talking with our doctor about putting Eva on a dextrose solution for hydration. This would add some (though not a lot) of IV calories and give Eva a bit more functionality. Not a lot more functionality (it would add 175 calories per liter). But it would be better than nothing. The advantage to this is that it is truly easy. We just need to get the bags from the infusion pharmacy and could administer them exactly the same way we do the saline. Not a long-term solution, or even medium-term, but simple.

Longer-term, if things still look like this early next week, we begin to work on putting Eva back on TPN (IV nutrition). The dietician thinks that if we are willing to get Eva to the lab daily for blood draws, we could do this outpatient. Given Eva’s trauma response to being in a hospital after last year, this would be a major win. TPN is a pretty big deal as medical interventions go. We were pretty excited to move off TPN and onto saline in late winter. Nonetheless, it means Eva gets full nutrition almost instantly. If we can do this without inpatient hospital time, it is the quickest solution, but potentially takes the longest to get Eva back to normal (but at full nutrition while we work to get her back to normal).

Finally, we are doing all of this as Rosh Hashanah bears down on us. The good news (we thought) was that I have no service leading responsibilities. But it turns out I just didn’t know I had service leading responsibilities because the small lay-led congregation in the community hadn’t let me know what they wanted me to do until last night (4 days before Rosh Hashanah). To be fair to them, they thought they’d let me know already. We agreed I would do as much of it as I can prep, and assuming Eva isn’t in the hospital, I will do some form of Torah service/reading/sermon.

May the new year be a less exciting year.

Not much has changed since my last update. Well, all of my ginger arrived. Otherwise, it has been over a month since the norovirus infection, but my body stubbornly refuses to tolerate my feed at more than 60% of what had previously been a reasonably comfortable rate. My GI thinks it is post infection dysmotility. So we are once again trying motility agents.

I tried 0.5mg of Motegrity (we started at 2mg) and once again, my stomach immediately filled with air. That wasn’t going to work. So, at the original suggestion of my pain doc, but with the approval of my GI, I increased my naltrexone to 9mg. At that level, naltrexone not only helps with the pain, but increases motility.

The naltrexone is definitely creating motility and I continue to not be a fan of how motility makes me feel. But this is way preferable to the Motegrity and I really would like to get back to full nutrition, so I am sticking with it for as long as I can tolerate it.

The caloric deprivation continues to mess with me. My nutritionist has set a floor of 500 mls/day (750 calories) and I have been struggling to reach that every day. I haven’t been able to spin in over a week now. Reading anything longer than an article is out of the question. And long form articles are a lot for me. My concentration is just shot.

I miss doing things with my hands and I look longingly (and appreciatively) at the crafty creations my friends post online, and my fingers inch to craft. Following a pattern feels like too much right now. Even a simple one. What I really want to do is take some of my homespun and just start crocheting something. Anything. Crochet is easy that way. But I haven’t finished any of my recent handspun plies, and I don’t know if I have the spoons to go through our yarn stash to find something to play with.

That above paragraph is how I spend a lot of time these days. Daydreaming about things I want to do and then being smacked in the face with my reality that I really don’t even have the spoons to do much of anything besides daydream.

Yes, I am in a dark place and I know it. But have you seen the state of the world? I challenge anyone not to be in a dark place right now? Especially now that I have once again lost what brings me joy.

Rest assured, both of my therapists are aware of my state of mind. Erin, my therapist that I have been working with for nigh on 3 years now, has been here with me before. She knows my frustrations and my limitations. She knows that I am a survivor, and that even if when I get cranky and complainy, I will continue to push (probably a bit harder than would be ideal) to do as much as I can. And that, unlike the last time I was in this state, my spinning wheel is already out and accessible, I have a bunch of fiber on hand, and will be able to start right back up once I get my nutrition back up again.

I have tasked my pain therapist with finding more relaxation techniques for me that don’t involve deep breathing. Deep breathing is painful for me. Actually, most breathing is painful for me. My abdomen really doesn’t like moving. So all of those lovely relaxation techniques that involve deep breathing just don’t work well for me. And focusing on my breathing doesn’t calm me, because it is hard to feel calm when one is focusing on what is causing them pain. But there have to be other relaxation techniques out there. Better she do the research than me.

This coming week is a pretty busy one. I finally have an appointment with a psychiatrist this coming week. This is part of the deal with my pain doctor to allow me to get on the notriptyline to help my brain not see gut motility as pain. The goal now is for the psychiatrist to wean me off the duloxetine without me landing back in the hospital with abdominal pain. It doesn’t seem to have much, if any, effect on my mood, but my pain doctor wanted a psychiatrist to monitor the withdrawal process anyway.

Back to the nortiptyline, I have now been at 40mg for almost 2 weeks and I am definitely feeling a difference in how I perceive gut motility. Unfortunately, I am still feeling it, but it is now more of a vibration than pain. It is now simply uncomfortable. I am willing to call that progress. I see my pain doctor in two weeks (right after Rosh Hashanah), so we will see what she has to say then.

I also see my nutritionist next week. I have had a substitute nutritionist for the past few months while mine was on maternity leave. This will be my first appointment with her since her return. When she left, I was basically weaned off the TPN and getting full nutrition through my J tube. Now she comes back to me struggling to get 60% of my nutrition. Kind of a bummer note to start back up on. But apparently her daughter is adorable, so there is that.

My new CPAP finally arrived yesterday. It is all fancy schmancy and has an app to adjust its settings. The important thing is that it actually works. Although the reservoir is worryingly small. When I used to marathon sleep, I would sometimes have to refill the reservoir on my old CPAP before I was ready to get up. I still sleep a lot, but not that much, so hopefully it won’t be a problem. Fingers crossed.