Eva's Gastroparedic Adventure

If you recall, I have been struggling with intestinal pain, particularly when I am ingesting anything, orally or through my tube. A couple of weeks ago my GI put me on a round of antibiotics for a presumed case of small intestinal bacterial overgrowth (SIBO). There were no follow up instructions , but we had left TPN on the table as the next step.

Fast-forward to yesterday morning. I sent a portal message to my GI with an update as to my status of “better, but still unable to increase my feed.” In response, I got the following message, with names redacted.

“Your message has been forwarded to Dr. P and Dr. K who are the covering Doctors. [Your GI] is away this week and will return on Thursday 7/6. As per Dr. P, you will need to wait for {Your GI] to make any major changes because she and Dr. K do not manage feeding tubes.”

Clearly, Mary’s nudges have been paying off. I sent a portal message and someone read it and responded right away. Unfortunately, they responded with a “you are on your own, kid.” kind of message. Leaving me, and my pain and malnutrition, with no where to turn.

My GI gave me no advance warning that he would be out of the office. Which leaves me with a quandary. I can’t go to anyone who is covering for my GI because I have a feeding tube. I can’t go to Urgent Care because I have a feeding tube which makes everything the responsibility of the Emergency Room. But, the Emergency Room won’t deal with me because I have a G/J tube. I can get admitted, but they only deal with the most acute issues. If it is something chronic, they send you back to…your GI.

See the problem here? Sometimes I even forget that I have gastroparesis. Instead, I feel like my tube, Etisarap is my ailment instead of my savior. She feeds me. She is the reason I am still around to be having these conversations at all. She is not the cause of my misery. But she is the hot potato that means that nobody wants to deal with me. Leaving me out in the cold.

When my father had a very minor form of lymphoma (minor because they caught it super early–get your cancer checks, kids), he entered the world of the Cancer Center. The price of admission is high, but he entered a world where his health care was well coordinated for the rest of his life. Regardless of remission status.

I dream of getting that kind of care. A system where doctors communicate with each other and have colleagues that they can work with when a patient has medical devices like feeding tubes that they are not familiar with. That being said, I would much rather stay out of the cancer system completely. Forever. But I envy that kind of wrap-around care.

If I am struggling this much in NYC, with a plethora of doctors, imagine how my fellow tubies who live in smaller towns in the US are faring? It is not good. And it is only going to get worse. And yet, I no longer have a choice. I must live in this failing medical world.

Back in the last millenium, the 1980’s to be precise, there was a show called “The Greatest American Hero.” A high school teacher stumbled upon a super suit that endowed him with certain powers, most notably, flight. But it didn’t come with a manual, which resulted in the guy regularly falling out of the sky. He kept hoping he would get the hang of it, but every time he managed to sort of master one thing, he completely failed at the next. Friends, that is how I feel about life with Etisarap right now.

I have reconciled myself to the fact that I am on my own until I find a decent GI. I am not getting myself all psyched up about any of my upcoming GI appointments. That takes too much energy and being let down like last time is more than I can cope with. Instead, I am focusing on each day as it comes. That should give me plenty to occupy my mind.

When last heard from, I had essentially flipped the bird at the new GI I saw on Tuesday by upping my feed to 27ml/hour. TL;DR: that was a bad call.

Friday was A Very Awful Day. I could not stop crying. In general, I am not much of a cryer. Before gastroparesis, I would go months without crying. I really only cry when I am frustrated or when I am in pain. And on Friday, I was both.

Seeing how miserable I was, David suggested that perhaps I might want to switch my feed back to 25 and see if I was more comfortable. To say I was resistant would be an understatement. He pulled out the big guns and reminded me that we were going into the weekend and the next step for me was to go to the emergency room. There is nothing more horrifying to me than the prospect of having to go to the ER on the weekend! I switched my feed back down to 25. And I got better.

Not big B better. But I stopped crying and was able to think again. As well as a malnourished Eva can think. Which also meant that we were able to go to the Astoria Pride celebration yesterday. It was a completely exhausting endeavor, and totally worth it.

One of the reasons I selected Astoria as our landing place was because it has a real community feel. People here identify strongly with Astoria and are proud to be raised here. That sense of community was strong at the Pride celebration yesterday.

There was a real small town event, with local performers raised in Astoria and training at the local dance studio. A dance studio right by our apartment where you can peer through the velvet ropes (I kid you not) put out during lessons and you can see young women and men learning traditional dances including how to dance with a wine bottle on your head!

To round out the small town feel, the festivities included a tug of war and pride bag races (rainbow potato sacks). It was absolutely the low key, fun, enjoying laying in the sun kind of day I think we both desperately needed.

But it wiped us both out. I only stayed awake until my normal bed time because I needed to disconnect and reconnect to my feed, take my meds and do all of those other responsible things. Otherwise I would have crashed for the night the minute we got home at about 5pm.

Today is a rest day for me. At least I hope it will be. Xena Malka woke me up early this morning because she is the most neglected cat ever and we dared to leave her alone for 3 hours yesterday. I definitely see at least one nap in my future.

David has big plans today. He will venture to Brooklyn for the first time since we arrived in NYC for a Brooklyn Cyclones game. My father would be so proud. He is going with a group from the local Reed alumni group. We missed reunions, but at least he will get to hang with some Reedies and enjoy an afternoon of sportsball.

David has been seriously craving ocean, beach and palm trees for YEARS. I told him that he could go for a walk on the beach after the game. But sadly, I couldn’t offer him any palm trees. Apparently, Brighton Beach wasn’t exactly what he had in mind.

Tomorrow, we reach out to my current GI and give him an update on my status. I finished my course of antibiotics. Maybe they helped, but it is hard to say. Only thing we know for sure is that moving up my feed to 27ml/hour is not viable. Then we see if he chooses to respond. But I think it is unlikely.

I am in a dark and cramped place. An oubliette, perhaps? Unlikely, but I have always wanted to use that word in a sentence. I am feeling very trapped in my body right now. We, by which I mean me, are really in need of some time apart. I am desperate for a vacation from myself.

I am too malnourished to escape my reality, and I am desperate to do so. I cannot read more than a short form article. Basically, social media. But that is such a grim place to be. Algorithms bury the 90% of my feed that is fiber and instead all I see is BBC, The Guardian and The Washington Post. Oh, and ads. Lots and lots of ads.

I have tried games, but even the simple ones overwhelm me with ads. Ads for sales on things that will allow me to keep playing my game. So I give up.

I watch music videos. My perennial happy place. But I start to get tired and reality starts seeping in around the edges.

I smoosh my face into Dancer, who can see my tears and comes to comfort me. And I hide from the world in his warm fur, feeling the vibration of his purrs. And all is right with the world again. For a few minutes. Then he moves to my lap. Or David’s. And my reality comes crashing back like a tsunami of physical and emotional pain.

Help isn’t coming. Five weeks of starvation and I am on my own. My body has failed the test by hoarding its resources. That may have been how my ancestors survived bouts of famine, but it is a fail-able technique now. So no help for me.

I upped my feed to 27ml/hour, and have toughed it out for 36 hours. And will tough it out as long as I can. But it is taking an awful lot of pain medication to do so. I was at 54ml/hour just a few months ago without even a Tylenol. Something has changed, but no one seems to care what or why. Because I am only starving — what could possibly be wrong with that?

See why I need a break?

I wish I could disappear in a drunken stupor. But even if alcohol weren’t seriously contraindicated with my medication, it is hard to get black-out drunk in 60ml increments every hour or so. So that’s out.

I went downstairs to get the mail. But my body insisted on coming me with. We returned unreasonably tired and hungry.

We ate a few bites and it hurt, so we stopped. Then felt regret because, despite not being able to eat, my eating disorder is fully activated right now. It has been quiet for a while, but Tuesday’s appointment released the beast from its cage. So that is adding to the emotional exhaustion. Fun times.

All the cliches say there is no way through, but moving forward. But moving requires energy I don’t have. And help isn’t coming.

Last night there was an incident during the sportsball game that perfectly captures my experience with the GI yesterday. Justin Turner was up at bat and a pitch was coming right at his face. He avoided it by hurling himself to the ground.

The commentators then explained that he had been hit by a pitch at training camp and that was why he added the protective face cover to his batting helmet. They went on to explain the psychological challenge of having just almost been hit in the face by a ball hurtling towards him at 80+ miles an hour, and then having to recenter himself to be ready to face another pitch in just a matter of a few seconds. And just as they got those words out, the next pitch hit his body. That was my day.

I knew the minute the nurse came in to take my vitals and get my weight that it was all over for me yesterday. I naively thought that once I got my G/J tube and my intake was entirely managed by medical professionals that I would be free from the tyranny of the scale. I was so horribly wrong. And in this case it would bite me in the ass. Hard.

You see, there was a 30lb discrepancy between my scale at home and the scale I stepped on at the doctor’s office yesterday. But it is not as simple as our scale being miscalibrated.

There is something going on with my body size. I have to wear my clothes very loose because my abdomen is so hypersensitive to touch. My favorite pants have a drawstring, and I recently had to tighten the drawstring to keep them up. But I also have, on occasion, what I refer to as bloat, where my lower abdomen gets noticeably bigger and my normally comfortable pants get a bit tighter. Yesterday was one such day. I share this to contextualize how David and I may have missed this weight discrepancy. But even I struggle to fathom toggling 30lbs from day to day. But I have ordered a new scale and we are moving on.

Honestly, I still don’t believe that this should have made a significant difference to the doctor. The fact remains that based on my nutritionist and my GI, I should be on four cartons of my formula a day. I am currently on 1 and 1/3rd and have been for 5 weeks. In my mind, that fact alone should be enough. But yesterday’s GI’s bottom line was that my BMI did not warrant an intervention at this time. I was simply too fat to warrant adequate nutrition.

Both David and I tried to explain how the weeks of malnutrition were noticeably impacting me. But she had not reviewed my records in advance. She had seen them, because she complained that they were sent in hard copy and not electronically. Which is an artifact of Mary having had to painstakingly collect them from a variety of systems, with only a couple being cross-compatible with each other. But that should not be a me problem.

It wasn’t just my weight. The GI came in to the room with an attitude and was not positively disposed towards me from the start. Early on, it became apparent that she thought I was a hypochondriac or doctor shopping or both. She had no interest in my attempts at explaining why I had doctors in Vermont and Stony Brook and Manhattan. In fact, she was more interested in my psychological issues, even asking for the name of my therapist and asking me if she could contact her. That was a huge red flag for me. Who asks to speak to your therapist?

She also questioned my diagnosis of gastroparesis. She asked multiple times why I didn’t have a gastric emptying test. I tried explaining that I had a smart pill test and that it was the industry standard. I decided not to point out that the Mayo Clinic had been confident enough in my diagnosis, but then again, they had read all of my medical records. Also, why ask a patient why she had not had a specific test? Its not like I get to control what tests get ordered.

The most engagement I saw was when the GI asked to look at my tube. She had brought a nurse practitioner into the room with her and was carefully teaching her about my legacy connection and how enfit connectors are better and how mine was a tube within a tube. I took that moment to interject how this was actually my third tube and how I had had a negative experience with an enfit tube. She looked at me like I had interrupted her during a lesson and challenged me about what I meant by two side by side tubes. She then happily went back to explaining my tube to the nurse like it wasn’t attached to a person.

As we neared the end of the exam, she asked outright what my goals were for this appointment. I said, point blank, nutrition. She said that my BMI didn’t warrant intervention at this time, ordered a bunch of labs and told me to come back to see her in a month (but we couldn’t get another appointment with her until October). David tried pleading with her, but no avail.

We had told her that I was seeing my GI in Stony Brook on July 11th and that I had another appointment with a different GI later that month. She said that I was welcome to see as many other GIs as I like, but that they would only give me band aids. She would get at the cause of the issue.

Some of my early labs have come back (I love patient portals) and some of the numbers are off. I am curious to see if she contacts me about them or not. My current GI has a habit of ordering labs and then not closing the loop with me, so I am not holding my breath.

Clearly help is not coming any time soon. And I remain adequately upset by yesterday’s interaction that I feel physically numb. At least, unless I deliberately try to check in with my body. This is my eating disorder in action. It is how I have been able to deliberately starve myself for years. But for once, it has actually proven to be useful. Last night I tried raising my feed from 25ml to 27ml per hour. It is uncomfortable, but tolerable. I was able to sleep until 6 this morning when my psychological distress woke me up. That bought me the time I needed until my pain meds kicked in. So I guess, in the end, she helped me with my nutrition after all.

It has been 5 weeks since I was weighed during my hospital stay and I am now down 27lbs. I have also crossed a once impossible milestone. I now weigh less than the “ideal” weight, based on BMI, that has been plaguing me on my medical records for decades. I am also the sickest I have ever been.

Even my nutritionally-challenged mind knows that I was so much healthier, nearly a hundred pounds heavier, pre-pandemic, when I was in the best shape of my life. I was going to the gym regularly, doing a combination of yoga and weight training, I had the best abs I have ever had. And yet, all I could see was this nearly impossible goal weight that I would never be able to reach.

I am feeling incredibly vindicated in my belief that the only way that I would ever reach this weight was to starve myself. All it took was literally starving myself. I didn’t get there on my stable, but inadequate nutrition, with my tube. No, I needed to literally hover at 800 calories a day for 5 weeks to reach it.

I had thought, or rather hoped, that tube feeding would be the end of my starvation. But the past 5 weeks have proven that theory wrong. And while I am no longer as good a thinker, or even as articulate as I once was (and hope to be again), even I know that there is something seriously wrong with this picture.

I cannot think straight. Moving even a finger is so hard that I feel as if someone turned up the gravitational force on the earth. I have lost my lifelong earworms and I can no longer pull up a quote or lyric in a heartbeat. In fact, listening to music has been reduced to uncomfortable labor. It is just exhausting to try to pay attention to both the melody and the words at the same time.

Quite simply, I no longer feel like me. I have become a struggling shell of a person just trying to get through the day so that I can go to bed and shut it all out for a while. But I have reached my fucking goal weight. Where is my promised prize of everlasting happiness?

Yes, I am angry. Nay, furious. Well, I would be if I had the strength to work myself up that much. I have proven that a number is just a number and that health is so much more than what one weighs. But it is a shallow victory. And one that will do little, if anything, to the lifetime of gaslighting telling me otherwise. Fortunately, now I have therapist and I can work on this with her*. Seriously, this is exactly why I worked as hard as I did to find my phenomenal therapist who used to run an inpatient eating disorder clinic. I knew I had issues.

Tomorrow is my very much anticipated appointment with the GI who specializes in enteral (tube) feeding. Starvation has left with me with 0 filters (if you doubt that, just reread this post) and I have shed many tears in anxiety and fear about how it will go. Will she be empathetic and curious? Or will she willfully ignore my pleas convinced that she knows best?

My rational brain (aka, David and Mary, my complex care coordinator) keeps reminding me that even if this GI doesn’t work out, I have four additional appointments with different GIs on my schedule. And if none of them work out, Mary will keep searching.

My next GI appointment, on July 11th, is with my GI from Stony Brook. Although not a motility specialist and I have no idea what, if any, experience she has with enteral feeding, that GI is empathetic and curious. She is a committed problem solver who ruled out everything else before leading me to the smart pill and my ultimate diagnosis. If only her state-run admin was anywhere near as effective.

Bottom line, tomorrow is not the end of the road. But I honestly don’t know how much longer I can go on like this. Starvation is draining in a way that my non-functional mind cannot articulate, although I desperately want to. I want you all to understand just how difficult it is to function in the world when one is starving. Even baseball is too fast a game for me these days. Does that help?

Even my non-sympathetic and unconcerned GI grudgingly admitted that TPN (IV nutrition) would be the next step if the antibiotic didn’t resolve the pain enough that I could increase my nutrition. I could be taking comfort in the fact that there is another option besides enteral feeding to give me nutrition. But the uncertainty and anxiety is getting to me and I simply don’t have the nutrition to process much of anything beyond these raw emotions.

*Not even starvation can kick Trekkie Monster out of my brain.

Mary, my complex care coordinator, has been working hard to get me seen at the Mayo Clinic in Rochester, MN. They are the best motility center in the country. She was making great progress. We had gotten me to the point where I had been assigned a doctor and they were beginning to send me travel information. And then this morning, the axe dropped. I got a message saying that after reviewing my extensive records, there was no test, or treatment that they could offer me.

I was disappointed, of course, but it makes sense. My team of doctors from Vermont, Stony Brook and NYC, all ran all of the appropriate tests to rule everything else out first. Ultimately, I was diagnosed with a Smart Pill, which is the state of the art test. And my results showed that I have severe gastroparesis. Severe enough, that even if you cut my transport time in half, I would still have severe gastroparesis. And as there is no treatment or cure for gastroparesis, there is nothing more that they could do for me than is currently being done

In other words, I just got a free second opinion from the Mayo Clinic confirming my diagnosis is correct. And that, as much as there is no treatment for gastroparesis. only symptom management, he has handled that correctly too. Thus is life with a rare, incurable disease. Welcome to the frustration that is my existence.

Yes, there are some marginal interventions available for gastroparesis, like a gastric stimulator, or surgery to prop open your pyloris valve. However, neither would make a difference in my situation. They don’t tend to work well in cases of idiopathic gastroparesis like I have.

This is not the end. I see it as simply a confirmation of my diagnosis. Moving forward my goal continues to be on improving my quality of life. I still have my slew of GI appointments on my calendar to help me address my acute misery and feeding issues.

Today is a day filled with feelings, so that is what today’s post is all about. Something is working. Either the increased pain meds or the antibiotic or both. I am not comfortable, but nor am I am in pain. At least not when the meds are in full effect. There is still some pain as it nears time to re-up. Regardless, I will happily take discomfort over pain.

When browsing through chronic illness shirts and stickers–hey, a girl has got to have her hobbies– I see a lot of “warrior” language. Let it be known here that I am not a gastroparesis warrior. I simply don’t have that kind of energy.

I have a pin on my backpack that says “being strong was never optional.” I have no choice but to be strong. Literally. When I felt myself beginning to die from malnutrition many months ago, I felt a literal compulsion to stay alive. That is when I knew that I no longer had a choice but to put everything I had, ever last iota of energy available, towards staying alive.

And that strength made me effective, as my complex care coordinator continues to remind me. She continues to be impressed with how well I navigated arcane bureaucracies, intransigent gatekeepers and even incommunicative doctors . And that means a lot coming from someone who does this professionally.

But that strength comes at a steep cost. And I am fully and deeply aware of how privileged I am to have someone like Mary to take the reigns. Because I honestly am not sure that I could muster the kind of energy I would need to take over that coordination right now. I am just so exhausted every day. Exhausted by malnutrition stretching on over a month, exhaustion from my pain and exhaustion from a complex and confining medication regimen.

I loved my excursion this past weekend. But it also wiped me out. We, by which I mean mostly David, shepherded my energy well. Reminding me that the more I walked enroute to the second festival, the less energy I would have at the festival itself. David was right. I spent my energy exactly where I wanted it and had a marvelous time doing so. But I haven’t had the energy to even leave the apartment since. And I probably won’t for another day or so.

I am taking a break from watching The Tony Awards to write this. I had a little meltdown because I realized that even with my transport chair, I do not have the energy to see any kind of theater. Not when a stroll through the park and a couple of festivals wipe me out for days.

But, I have a much anticipated appointment with a GI in exactly a week. And she has the experience to help me up my nutrition. So I am actually feeling optimistic, even if it doesn’t always feel like it. There is just a lot for me to reconcile on a daily basis. And that takes a lot of my very meager energy.

Yes, I am strong as I need to be. And right now, barring any unforeseen disasters, all of my strength is needed to simply getting myself through the day.

For the first time in a couple of days, I don’t have an air quality warning on my phone. But yesterday, the air was orange and we had an air quality warning over 320. But we have two air filters we run constantly, and we did ok with our windows closed.

The air quality is supposed to get bad again tomorrow and through the weekend, which may put the kabosh on our planned outing to the Astoria Park fair and the inaugural outing of my transport chair. But that is just life during the apocalypse.

In other, better news, I had an appointment with my GI today and he actually stepped up to the plate and went somewhere useful. Given how much pain I am in despite being so heavily medicated, it was about time.

He suggested that I may have SIBO (small intestinal bacterial overgrowth). I tested negative for it almost exactly a year ago. But I am at high risk for SIBO given my gastroparesis and less-than- stellar pyloric valve (the valve between my stomach and small intestines). The symptoms match and I agree that it is a perfectly reasonable hypothesis.

Rather than taking the time to test for SIBO, he is going with a presumptive diagnosis and has prescribed antibiotics. And that is where the fun comes in. The antibiotics are expensive ($3K) without insurance, and require pre-authorization. I emailed the practice and are waiting for them to get me my pre-auth. But it may be a day or two before I actually get my mitts on my new meds.

The GI did, finally, when pushed, acknowledge my need for nutrition when he said that if we didn’t see an improvement of my symptoms within a “reasonable time,” after starting the antibiotic, then the next step would be TPN (IV feeding).

I am feeling positive because that “reasonable time” frame coincides with my appointment on June 20th with the GI who heads the enteral nutrition team at NYU Langone. Either we will have addressed the issue and the new GI can guide me as I increase my current tube feed rate or she can take whatever steps are appropriate to restore my nutritional status to something more sustainable.

I am going from second hand reports here (aka David), but my cognitive abilities are noticeably slipping from a combination of malnutrition and over-medication. And I can’t say I disagree with him. I am well past ready to get my nutrition, hydration and electrolyte situation truly assessed by someone who knows what they are doing and cares how I am doing.

I woke up an hour earlier than usual today, but I didn’t want to mess with my medication schedule. This resulted in a tough afternoon where I woke up from a too hot nap in a fair amount of pain. To say I was grumpy would be an understatement.

I woke up to a text from a friend. Actually, she is more than that, she is a member of my village. As are her spouse and kids. And her kids are both amazing. And one of them, her son, was born to be a rockstar.

When he was a younger kid, I wanna say middle school-ish, but my sense of time is all whacked out. Anyway, the school had an entrepreneurship fair. And each of the kids got a wad of “cash” to spend as they wanted. He put on a show and made serious bank. The kids could have spent their money at any of the stalls, but the experience he provided them was what moved them more than anything else. And it was an amazing performance. I would have paid him too.

Anyway, he is now 16 and a damn fine guitarist. He has put in the time, the blood, sweat and tears. This has not been an easy journey for him. Or his parents. But he has been invited to audition for a band’s national tour. And I know that however this audition turns out, I am watching the beginning of a kick-ass musicians’s career. Because he has the talent and the drive and other musicians are seeing it too. And I can barely contain the pride I feel for this kid.

Ok, back to me. I was honestly buoyed enough by that to start feeling better. Then I get a call from a GI’s office to schedule an appointment on JUNE 20th. a GI appointment with someone besides my lousy doctor this month.

But wait, there’s more. This GI is also the head of NYU Langone’s enteral access team. So she specializes in feeding tubes and nutrition. She is absolutely the right GI for me right now. And honestly, my shoulders dropped in relief from tension I’ve been holding for a month. I don’t have to make it all of the way to July before I can get some help. Hell, it is less than 3 weeks away. I can totally make it until then.

Anyway, just some good news that I couldn’t wait to share.