Category: Gastroparesis

There has been so much going on, I have barely had a moment to catch my breath, let alone blog. So this post is chock-full of updates.

As the title suggests, there was an unexpectedly good week of doctor appointments. Which was surprising, because I expected the first one to be unreasonably expensive in terms of my pain to benefit ratio. That is because the first one was in person and 40 minutes each way.

The first appointment was with the doctor who was looking into whether my back pain was stomach-related or musculoskeletal, like my “gallbladder” pain had been. I had seen the results of the MRI and so had my pain doctor, and it looked like the results showed nothing beyond what one would expect in a middle-aged person. So I was fully expecting suffering through a drive for a doctor to tell me that the pain was my stomach and therefore, not his department. But instead, he made the whole trip completely worthwhile.

Apparently this doctor reads his own images. And what the radiologist described as a small cyst, was not actually very small. And it is sitting right on a nerve. And in a such a place that it is likely responsible for at least some of the pain I am experiencing. But then he made me appreciate him even more. He referred me to a neurosurgeon, not because I need surgery, but because of the placement of the cyst on a nerve, which makes addressing it outside of his wheelhouse. I truly appreciate doctors who are aware of their own limitations and refer accordingly. My appointment with the neurosurgeon is June 2nd.

The second good appointment was my long-awaited appointment with the motility specialist who is in-network. My insurance will no longer grant me the “access to care” exception to cover my Stanford doctors* as in-network because more two years after Mary first tried to get me an appointment with this doctor, she is now accepting new patients. Including me.

This motility specialist self identifies as a neurogastroenterologist, which is a perfect match for me. She had reviewed my medical history, including the testing that I haven’t been able to do because I can’t ingest 1,500ml of fluid and get it into my small intestines for a MRI enterography (MRE). I also updated her on the work I am doing with my naturopathic GI to address the bacterial overgrowth in my small intestines and trying to restart tube feeding at a very slow rate.

She said that she saw two different directions that I could go in, I could continue to pursue options to get the MRE or I could focus my efforts on getting back to tube feeding. Then she asked which direction I wanted to go in. Without hesitation, my answer was to be able to resume tube feeding. And with that, I became her patient.

The next step is for me to have an hour-long appointment with my new GI’s assistant, who is both a registered dietician and either an NP or a PA, neither David nor I can remember which. That appointment is May 26th.

That was all two weeks ago. This past week has been both a trial and a triumph.

The trial is all related to my efforts to try Motegrity for I think the 4th time since being diagnosed with gastroparesis. And each trial has resulted in me and David deciding that the pain it causes is not worth it because neither of us can see any benefit at the dose I can (barely) tolerate. And this time, it resulted in me losing ground in the amount I could flush into my J tube.

Motegrity is one of the only two motility meds that work on the small intestine. I am already on the highest dose of other one. As one of my GI’s in New York told us, the small intestine is boring. Nobody studies it because there are so few meds that work on it. So I am sure that I will be trying Motegrity again in the future. But for now, I am off it so I can resume beating up my small intestine with flushes and soon, watered down formula.

Yes, Triple Tube Girl is about to become Quadruple tube girl. This is getting to be too much, even for me.

Starting some day this week (I am hedging my bets, because I am needing to rebuild just flushing bile salts and water twice a day after the Motegrity experiment forced me down to just one flush a day) I am going to restart trickle tube feeds with watered down formula. But, of course, the formula needs to be separated from the bile salts. And this is where my life becomes a word problem.

If I am starting trickle feeds at 4 hours, and the formula needs to be separated from the bile salts, either one hour before the bile salts or 4 hours after. What time do I need to start my trickle feeds so that I can continue to put my xifaxan and bile salts through my J tube at 2pm? The timing of the xifaxan and bile salt flushes are largely determined by their separation from oral meds, so that timing is pretty fixed.

But wait, there’s more. I still need to run my TPN (IV nutrition) for 10 hours and my hydration for 2 hours. And there is only one me, and I cannot wear a second backpack on my front. I also need to factor in backpack capacity. Add in that I cannot pick up anything weighing more than 10lbs with my right arm because that is the arm with the PICC line in it. It is also my dominant arm. Practically speaking, I can run two pumps at a time, but not 3.

Last, but certainly not least, is that I now have to manage tubes going to two different locations on my body. When I run my hydration and TPN at the same time, at least both tubes go to my PICC line on my upper right arm. But when I run my enteral feed, that goes to my J tube which hangs down from the center of my body at about belly button level. As I discovered when I trialed running water through my enteral pump while running TPN, wrangling tubes going to two different places when putting on or removing a backpack is a special kind of fun. Plus, I have my free-hanging drain bag to manage on top of it all. I have never needed a prehensile tail/third arm more than I do now.

Truly, I have not been able to wrap my brain around what we are trying to pull off. Instead, I have been using my newly required brain space (thanks to the transcranial magnetic stimulation) to come up with other ways to get myself into trouble. Setting goals.

Setting goals is especially difficult when dealing with a chronic illness. I want to push myself forward, but I also need to recognize that there are days when my body will just not be up to doing anything. I also need to recognize that I need recovery time from doing almost anything. Whether that be playing a mindless game, reading (!!!!!!) or going on little adventures.

Nevertheless, I had set a goal of being able to go to a local fibershed event this past weekend, located about 30 minutes away. It was the perfect sized outing for me. There were only a few booths, scattered throughout gardens with dye and medicinal plants. And there were sheep and goats and alpacas and a ruminant with fantastic horns. It was too far away for me to be able to determine if it was a sheared sheep or a goat. But did I mention the horns on that thing?

I had very determinedly decided beforehand that I was not going to buy any fiber because I have enough waiting to be spun. I don’t need anymore. I am sure you can guess where this is going. In my defense, how cool is natural indigo dye? This vendor was selling dye plants along with her fiber. And I don’t recall seeing processed natural merino in colors other than white before.

At another booth, I just missed out on some gorgeous black and white fiber. The vendor gave me her card and told me to call her because she had plenty more at home. Turns out I had purchased fiber from her before and had kept her card because I wanted to be able to order from her again in the future. She is also located only about 30 minutes away from us. She invited us to come see her sheep when we pick up the fiber that I was interested in.

Clearly, our little adventure was a winner! But it wasn’t enough for us. On the way home, David stopped at a plant sale and picked up a couple of varieties of tomatoes and a couple of varieties of cucumbers. It was a little hard seeing starts for so many vegetables that I love to eat. But I got through it and by the time we got home, I was too exhausted to think about anything.

Today is largely a recovery and rebuilding day for me. I am writing this while David is off picking up pots for his new vegetable starts. I am cautiously optimistic that we are on an upward trajectory. But I am superstitious enough that I am following that thought with a “p’tui, p’tui, p’tui.”


*While it has become apparent that my GI at Stanford is not a great match for my needs (although I can appreciate that she is a leader in her field, my idiopathic gastroparesis make me an outlier among outliers), we will continue to pay out of pocket for my amazing pain doctor. And the jury is out on whether we keep my dietician. It all depends on how good my new GI’s dietician is.

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.

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.