Eva's Gastroparedic Adventure

Today, the last day of the shortest month, has been designated Rare Disease Day. And in honor of that, I am sharing this article by a pre-med student on the challenging dynamics between patients with rare diseases and their health care practitioners.

But first, a quick summary of key points:

“Research shows that over 87 percent of rare disease patients feel unsupported in their care due to a lack of trust and communication with their HCP compounded by the provider’s lack of knowledge.”

“…in most cases, HCPs do not possess sufficient knowledge of the rare disease to make an effective recommendation. As a result, patients with rare diseases find themselves experiencing a patient-directed communication pattern, in which they are forced to acquire knowledge of their disease on their own while physicians act as passive participants, predominantly providing consent for treatment that is first advocated for by the patient.”

And, the article itself. https://www.kevinmd.com/2023/02/educating-health-care-professionals-on-effective-communication-in-rare-disease-diagnoses-is-crucial-to-improving-the-rare-disease-patient-narrative.html

David and I continue to live in hope for a week in which I manage to avoid any issues for which I do not have an answer. Unfortunately, this past week was not that week.

While I was slowly recovering from the trauma of the previous week (in which I got two tube changes and couldn’t feed for 4 days), I noticed that I was venting some formula through my stomach. The formula goes straight into the jejunum, so it should never appear in my stomach. For some unknown reason, some of the formula is being backwashed from my jejunum to my stomach.

I checked to see if my tube had flipped by putting blue gatorade into my J tube and seeing if there was any blue in when I vented from my G tube. There was not. Fortunately, I happened to have an appointment with my GI on Monday, so I waited to ask him then. He ordered an x-ray to make sure that my tube was not kinked or twisted.

The next day it took me more than a solid hour and a half of phone calls and emails to get the x-ray scheduled. Apparently, no one quite knew what a PEG tube x-ray was even though the order clearly said abdominal plate. Eventually, I got it scheduled for Friday.

Friday morning, I pulled together all of my strength, walked down 5 flights of stairs and walked the half mile to the local hospital along the way. Fortunately, our neighborhood has lots of benches and bus stops, so I was able to rest several times along the way.

When we get to the hospital, the usual outpatient entrance is closed for a press conference. So patients get to walk the extra hundred yards or so to the other entrance. That may not seem like much, but it took everything I had to put one foot in front of the other at that point. And there is not a single seat in front of the hospital. Not even in front of the patient pickup and drop off spots that were occupied by vehicles from the “special” people at the press conference. Heaven forfend someone leaving the hospital might need to sit down while waiting for their ride home.

I managed to drag myself to the further door, the, inside the building, walked back the same extra hundred yards to the elevators to the outpatient testing. I collapsed into the nearest chair as soon as we got into the waiting room. A waiting room with 8 or so people in which no one had their masks up.

Nevertheless, the ill tempered registration woman made us fill out an outdated Covid intake form (including the question “Have you or anyone in your household been out of the US in the last 10 days?”) And they meant it, because even though I had uploaded my vaccination card into their system at a previous appointment when such things still mattered, she insisted on David telling her whether my vaccines were Moderna, Pfizer or J&J. Did I mention that no one had their masks up?

Anyway, I get into the x-ray room and the tech is positioning the x-ray on me and I suggest that she aim the camera a bit higher to get the whole tube in. She ignored me, took the first shot and then came back to adjust the camera because she assumed the doctor wanted an x-ray of the whole tube. Fortunately x-rays are now instantaneous, because I would have been furious if I had had to come back and redo it.

X-ray done and knowing that I still had 5 flights of stairs to walk up, we took a Lyft the half mile home. David almost got hit by one of the drivers of the VIP vehicles occupying the patient pickup and drop off spots when David tried to cross the street to verify that the car there was for us (there was another patient also looking for his Lyft).

I made it home, safe, sound and exhausted. I am actually irritated by how sore my legs were, so I am planning on reinstituting my stair walking regimen so I can build up my endurance.

On Saturday we got the “results” from my x-ray. Although the order was for an x-ray of a PEG tube, the tech decided that the issue was bowel gas, which he deemed to be normal. This morning my doctor looked at the x-ray and declared it to be fine. I still have the issue with the backwashing and he suggested a med adjustment.

This morning I have an appointment with my Registered Dietician because he wants her to weigh in on my nutrition. This is a bullshit appointment because we are going back to her original recommendation based on the higher calorie formula that he vetoed 3 months ago. Nothing has changed. But instead of just going back to her original recommendation, I get to pay for another appointment within the same practice to get the exact same answer. And when this is done we get to submit the exact same order to the supply company and see how long it takes to get that approved.

Also, at least week’s appointment I had the opportunity to ask him, once again, to include Farrell bags in my order. Farrell bags are bags that I can attach to my G tube port and vent into directly instead of having to hold my tube open over a bowl if I don’t want to stand over the sink all day to vent. I had asked him for Farrell bags in past emails. The Registered Dietician who put together the last round of orders included them in her order that she just asked him to sign. He didn’t. He insisted on redoing it his way.

Turns out he just didn’t know what Farrell bags are. Although he had several opportunities to do so, he never bothered looking up what they were and just ignored them when he encountered their mention. He did say to remind him to order them this time. We’ll see how it goes. I am not holding my breath.

In other news, I have found a support organization for rare diseases. The incidence of Gastroparesis diagnoses in the US is 0.16 out of 100,000 people. There have been past efforts at Gastroparesis-specific support organizations, but they have all collapsed into a collection of Facebook Groups. While no one rare disease has enough patients to pull this off on their own, you put us all together and we amount to something.

Anyway, this organization has a free concierge service to help connect patients with doctors, centers of excellence and clinical trials. I already have some trackers on clinical trials for Gastroparesis, but it never hurts to have more feelers out there. I submitted a request and am just waiting to hear back.

They also have a cool program where they connect medical students with people who have rare diseases. The program is designed to help build empathy for the outliers like me by connecting students directly to the patient experience of those of us who fall through the cracks. I submitted an application for that too, but they do not guarantee a match. It all comes down to whether gastroparesis catches a student’s eye.

Not many people know this, but before the pandemic hit, I had gotten frustrated with working in public service in a world where the usual rules no longer applied. As the ADA officer for the City of Plattsburgh and as the leader of Plattsburgh Girls Who Code, I kept running into situations where accessibility was not just ignored, but seemingly deemed irrelevant. So I decided to pivot and shift to working in the field of accessibility.

I mentioned this interest to a friend who introduced me to the International Association of Accessibility Professionals (IAAP) certification process. I rigorous exam assessing one’s knowledge of various kinds of disabilities, accessibility tools and international accessibility laws. I received my certification and had started looking for work when the world shut down.

During the pandemic I looked into getting a certification in Diversity, Equity and Inclusion from Cornell to round out my credentials. But that never happened because I got sick. I almost lost my IAAP certification because I didn’t do all of my continuing education hours, but being the organization they are, they gave me an extension due to my illness.

I mention all of this because I want to be clear that my complaints about accessibility issues do not stem solely from a place of self interest. Rather, they are informed by education and experience. And should I ever be healthy enough to work again, this will have always been the direction I was going.

Hi all, this is David (Eva’s spouse) with a guest post.

In response to recent posts, we’ve been getting so many offers of help. We’ve received so many suggestions. And we’ve very much appreciated everyone who is trying to make our lives better.

We have politely declined most offers because we have mainly got things running about as well as we can for us. Eva’s blog is fundamentally a way to keep those who care about us informed. We so appreciate well wishes, sympathy, etc.

Here’s why helping us is hard: gastroparesis is a rare disease. No one knows much about it. Those who suffer from it know a fair amount about their experience of it, but that also varies widely from individual to individual. With rare exceptions, doctors who list expertise in gastroparesis have read less of the academic literature on the subject than Eva, or have expertise in treatments for which Eva is not a candidate.

People have offered to make phone calls for us to interface with insurance companies, etc. The amount of education we would need to do to get you up to speed is impractical. For the most part, even I, David, can’t make those calls for Eva. Yes, I have been present for most of Eva’s doctors appointments. I have heard most of the calls with the home health provider. But not all of them. There are important gaps in my knowledge that mean I am likely to give bad information, possibly setting the whole process back weeks or months.

Finally, we are exhausted. We don’t have the energy to explain why your suggestions won’t work, much less to argue you out of them. We love you, and so appreciate your caring, but some of that caring is placing a burden on us. Gastroparesis is an incurable, long-haul, (usually) non-fatal disease. We are not despondent, but one or both of us winds up in tears multiple times per week. This is really hard. When someone asks me, “How is Eva?” the best I can say is, “not as bad as she might be.” Which led someone yesterday to suggest that she is okay. I had to explain that she was definitely not okay, but it could be worse than it is (and it has been worse in the last week). We know you love us and want to help. If there were things we could ask of you, we would (Eva asked a friend to design a t-shirt for her this morning). But we are really stretched to our emotional limits just getting each other through each day. We don’t have the energy to take care of anyone else trying to take care of us.

In my previous post, I was a bit too optimistic about my recovery from a prime candidate for the worst week of my life, which occurred during what was likely the worst month of my life. I blame nutrition deprivation and whatever drugs remained in my system from my procedure for the sunny outlook.

I am healing, but I am recognizing that this will not be a quick recovery. My body was pretty badly abused between the nutrition deprivation, the severe pain that also interrupted my sleep, the multiple procedures and the Terribly Torturous Tube. Based on the amount of blood I was venting from both my G and J tubes, it was a pretty bloody mess in there too.

Unbeknownst to me, during Thursday’s procedure they gave me a pretty hefty dose of that medication that thickens the mucus in my stomach so that any internal wounds can heal. This medication turns my Gastroparesis up to 11 because it makes venting nearly impossible. This leaves me feeling more and more nauseated without any opportunity for relief.

Let me be clear, I am recovering. But my jejunum is still so sore that I am still waking up several times a night from the pressure of my feed. A pressure that had previously been perfectly comfortable. I seem to have gotten most of the vile medication out of my system, so at least I am able to vent my G tube again, and I can get at least some comfort.

I have yet to make it through a day without needing to take a lay down/nap every few hours. And while my stoma is wondrously healed, the adhesive on the protective wafer left me with an itchy and painful rash. This was not surprising to me, since my skin loathes adhesives, which is why I use clips to keep my tube in place rather than tape. I woke myself up last night because I had been scratching my stomach in my sleep and the pressure on my sensitive abdomen was painful enough to wake me up.

And I have not even begun the emotional recovery. I can not underscore how traumatic this last month has been. Remember how in 2020 every day felt like a month and every month felt like a year? Well this was that feeling all over again. It hasn’t even been 3 full months since I got Etisarap, and yet I feel like I have aged years since I first got her.

The frustration, aggravation and feelings of neglect from collective 34 hours in the ER and the inability to get answers pale in comparison to the trauma of the last month. I am trapped in what I now understand will be a lifelong sisyfusian battle with the medical and insurance industries. Because things will continue to go wrong with my tube. Hopefully the problems will be few and far between, but let’s face it. Shit happens.

I now understand just how small a niche managing a feeding tube is. I say this with the full knowledge that I now have a skilled, capable and compassionate stoma nurse on my care team. I have now had several conversations with nurses in my Gastroparesis groups and I have learned that the standard nurse training on feeding tubes is minimal at best. And that doctors get even less, beyond the basic placement. And given my experience with the doctors trained to place them, I am dubious about their knowledge.

I will have to continue my search for a competent doctor to manage my tube. But it will not be an easy process. You can’t just google G-J tube and doctor and find one. You will get a list of GIs, but if you peruse their websites, you will see nary a mention of feeding tubes, gastroparesis or even motility issues.

However, before I can even do that, I need to be able to resume comfortably sleeping through the night. I had tried restarting acupuncture, but have now cancelled two appointments because of trips to the hospital. And as much as I know acupuncture will make me feel better, I need to recover a bit more before I can schedule another appointment.

I am not up to leaving the apartment yet and starting tomorrow, leaving the apartment will require going down and up 6 flights of stairs. Even though I had worked through the pain to comfortably go down and up 4 flights of stairs, I have lost that progress for now. We have had many generous offers to stay elsewhere to avoid the steps. Offers that I truly and deeply appreciate. But right now Dancer is too key to my healing to be without. He is always there with me when all I can do is lay there with my eyes closed. And smooshing my face into his side while he purrs is deeply healing to me.

Today, I will absolutely start with the good news. I just woke up from a nap, am mid-feed and feeling so much more human again. My pain and nausea are back to a 3 and I am surrounded by cats. Even Xena Malka’s eye is looking marginally better.

But you knew that a longer story was coming, right? And it is not a happy tale. Yesterday was truly horrible. I could not get comfortable as the pressure built in my jejunum and I tried my best to sustain myself on a clear liquid diet in preparation for today’s procedure. But my system was such a mess, that every sip just made me want to vent my G tube.

For the first time I wandered into 4 territory, unable to get comfortable sitting or laying down. I barely slept, spending much of the night just watching the clock until the torture could end. By the time it was time to get up and dressed, I could barely move.

The now familiar trip to the hospital was uneventful. Check in was easy because the woman at the front desk remembered me. This was a Good Thing because I was feeling barely coherent. By the time the doctor came by for his pre-procedure chat, he started asking me about my stoma and I just blurted out “Get this thing out of me!”

When I woke up in recovery, the first thing I did was look at which tube I had in me. It was my old, familiar, albeit leaky style and I was thrilled. As soon as David arrived, he got me some water so I could flush the tubes and everything worked beautifully.

The doctor came by to check on me and he told me that he had flushed the tubes during the procedure and it worked fine. He asked if I had flushed and I told him that I had and everything was working well. He had checked the evil tube before swapping them out and said that he didn’t find a kink, so he was still unsure why it wouldn’t flush properly. But he intended to contact the manufacturer to let them know.

I remain sore and a bit dehydrated, but so much better than I have in days. I am back in familiar territory and any residual soreness should abate in a day or two.

I would like to thank everyone who sent their good wishes. I wasn’t really up to responding, but I did read them all and very much appreciated them. It is amazing how every little bit of love helps, even at the worst of times.

Despite our collective hopes, yesterday didn’t go as planned. Normally, I would start with the good news, but I am still working on processing the bad news, so you will have to wait for the good stuff.

Procedurally, yesterday went fine. Well, except for the being rushed out of recovery by a nurse before I got to talk to the doctor again. But given how hard this guy is to reach, we insisted we see him before we left, so she shoved us into a closet (seriously) to wait.

Eventually the doctor came in, confirmed that yes, my original J tube had a clog (this was the reason for the evening call on 1/26) but that everything else looked good. As planned I called the stoma nurse on her day off, she sent me to another part of the hospital where another nurse took me into the bathroom (it wasn’t a clinic day, so it was either her cramped office or the bathroom) showed me how to apply the disk (it isn’t really a disk, more of a 4″x 4″ thick sticker) and sent me home with all of the materials I needed to do it on my own. Except for the lack of space, this is how I honestly expected my entire tube experience to go. It was a nice change.

But I digress. When we got home at about 4pm, having not fed or had any liquid since 10pm the previous night, I set out to flush my tube and set up a feed. Except that I couldn’t. First off there was the logistical challenge that the new tube has a different kind of connector than the syringes I have, so even with the adapter the hospital sent me home with, it still required a fair amount of jerryrigging. But even when we got that worked out, I could push the water in the tube and then it would just come out. I was also feeling some new and very uncomfortable pressure in my jejunum and I had to vent my J tube for the first time in…ever.

I called the on call doctor who gratefully completely agreed that there was no point in sending me to the ER because the issue was with the J tube which they blanketly refuse to deal with. She called my doctor who told me to come back into Endoscopy today and he would see me between patients. If I can’t flush, I can’t feed, so no nutrition for me. Instead I spent the evening trying to hydrate and get some electrolytes into me.

This is where we get into the good news. The disk, something that I was dubious would work, has worked wonders. I didn’t wake up in pain any time during the middle of the night. While the inflamed tissue is still present, the pain is not. And presumably, that will allow the tissue to heal over time. The moral of the story? Trust nurses. They get the work done. Also, they deserve better wages, better nurse to patient ratios and more reasonable working hours. Nurses rock.

But all was not well. I woke up with a whole new type of queasiness with which I had not yet encountered. This was a deep pressure from my jejunum. I staggered into the bathroom and desperately vented my J tube. So just as I got the stoma pain under the control, I got this misery to replace it.

Impressively, we didn’t have to wait unreasonably long for the doctor to see me. So much faster than the ER. He tried all of the same things I did with the same results. Except that he tried to convince me that it would work if I just pushed in a whole bunch of air to push the liquid through. But, after making me completely uncomfortable (which is a euphemism for almost being in tears) the water just came back up.

He tried pushing through a guidewire and that didn’t work. Then he just shrugged at me and said that he didn’t know what to tell me. I reminded him that I could not feed like this. He suggested that I try feeding into my G tube. I reminded him that if I could feed into my G tube, I wouldn’t have a G-J tube.

After repeating a few times that he didn’t know what to tell me, he said that he would just have to go back to the lesser, leaky tube. Like this fancier one was the better option. And it may be, but only if it is functional. Which is basically what I told him. He then suggested that I might need to get a separate J tube (which would mean managing two tubes and two stomata (the plural of stoma), which seemed like a huge leap to me considering that my previous tube was perfectly functional. I told him that I was good getting the old style tube back. He said his schedule was booked and that the best he could tell me was to go through the ER. Until I reminded him that a) the last time he told me that I got sent home after they did nothing. and b) since it is a J tube and the ER doesn’t deal with J tubes, they were just going to send me back up to him.

He managed to find an opening for me Thursday morning where, almost as an afterthought, he mentioned that he would first see if he could figure out what the deal is with the J arm of this tube and if that didn’t work, put the old style tube back in.

For those following at home that means nothing resembling adequate nutrition from Sunday at 10pm until some time Thursday. I am working hard on pushing in electrolytes and hydration orally.

And because life was still too easy, Xena Malka has had a weepy eye for a couple of days. It has gotten worse and now she care barely keep that eye open. So David is taking her to the vet right now. Because as he says, that is what he does, takes his girls to the hospital.

It has been a few days since my last post, but don’t worry. You haven’t missed anything. Things remain unresolved. But not for lack of effort.

Previously on Eva’s Increasingly Absurd Reality, I had sent an email to my gastroparesis GI asking for a referral to another tube GI who would be responsive. The next morning I got a message from him on the portal saying that he had spoken to the tube GI who had been in New Zealand for at least one of the hospitalizations. Like that was a reasonable response that got him off the hook. He is not in a solo practice, he works out of the hospital. He has colleagues. I have met them.

Anyway, he also asked for photos of my stoma, which I promptly sent. The portal does not allow uploads, so he asked me to send them through the practice’s general email. Which I promptly did at 10am, when I got up. I hadn’t heard back from him by the afternoon, so at 4pm, I sent a follow up message through the portal confirming that he had received the photos. This morning I woke up to a response to my confirmation message from one of his admin staff simply stating that the doctor is now out of the office until Monday. So much for that route.

Yesterday morning, I also called the nurse, Esther, that the tube GI’s nurse referred me to. After not getting a call back all day, in desperation, I scheduled an appointment with one of the teledocs that our insurance gives us access to at no additional charge. All I had was a name of the doctor, no photo, no bio, she could have been anyone. Turns out she is one of the more responsible doctors that I have encountered.

She was incredibly sympathetic, but she was very clear that as a general practitioner, she had no experience with stomas and wouldn’t even know what antibiotic to prescribe. Honestly, I hadn’t expected her to be able to do anything. But at that point, it seemed worth a try.

This morning someone from the nursing department that my tube GI’s nurse referred me to called me back. They had no idea who this Esther was whom my tube GIs nurse spoke to and they told me that if it was an infection, there was nothing they could do about it and that I needed to see a doctor. I relayed my tale of woe and they put on Irma, who seems to be a head nurse. She asked me to text her photos of my stoma while she was on the phone.

She took a look and said that it was not actually an infection, but hyperplasia, which is tissue that has grown due to irritation. And the source of the irritation? My bumper is too tight. Which, you may or may not recall is also the reason for the ongoing bleeds, which were the reason for the very first ER visit back in December. So we continue to be dealing with the exact same issue that seems to elude anyone’s ability to address.

When I asked what could be done for hyperplasia, she said that the stoma could be resited (aka, cutting another hole in me and leaving this one to heal) but that this stoma looks well sited. So instead she suggested what is essentially a seatbelt for my tube to keep it from moving around, which moves the bumper around which causes the irritation. I wasn’t really clear on what that does for the incredibly painful hyperplasia or herniated tissue (that is what happens when an amateur gets two different diagnoses for the same tissue, you just go with both), but I am all for it not getting worse.

Of course, she can’t do anything without a doctor’s order, so she sent an email with the photos to the tube GI and the nurse practitioner whom she “presumes works with my doctor” along with her suggested plan of action and *gasp* called me back to let me know she had done so. I never get callbacks. I love this woman. She even gave me her direct number. I can now call a competent human being when I have questions. She may not be able to do anything about it, but she does know stomas. Sadly, that is better than nothing.

The take aways from this are that it is not an infection and my doctor shouldn’t be able to turn me away on Monday when I show up to get my tube changed. He may or may not have taken note of the situation, but he cannot say he is taken by surprise when he sees me and my herniated/hyperplasic tissue on Monday. It is Thursday, which means that I only need to get through 3 and a 1/2 more days of this pain and misery before I actually get a doctor’s undivided attention for as long as it takes to swap my tube. And that when that is over, I will have an adjustable bumper so hopefully I will never have to go through this exact situation again.

In other news, I had tried to start up acupuncture again this week, but I was in too much pain to go on Tuesday, so I rescheduled for next week. My intention had always been to restart after the tube swap, but I was in so much pain, I was hoping to get some relief earlier. But I just couldn’t imagine getting it together to leave the apartment.

Speaking of leaving the apartment, on February 20th, the sole elevator in our building is being taken out of service for 2-3 weeks to repair a motor that is making some really unfortunate noises. We live on the 6th floor. We didn’t have a firm date for the repairs until yesterday, only a “soon.” So despite the pain, we have been building my physical endurance just in case the elevator was out of service when I come home from my procedure on Monday. I can now do 3 flights of stairs up and down. So I guess I have that going for me.

This past week was reminiscent of 2020 in that it felt like it was at least a month long. The week started out as expected as we continued to slowly recover from the trauma of the ER visit. Trauma that remained clear in our minds as the infected herniated tissue in my stoma got worse.

We have grown to have a real distaste for Fridays because that is when I seem to end up with health issues. This past Friday was no different. I had gotten the infection under control with the only tool I had, OTC antibiotic cream. But something inexplicably changed on Friday and the infection suddenly got worse. We didn’t know what to do. If we called the doctor, he would just tell us to go to the ER, and that was not something that we were willing to do again.

A brief aside here. I hate the common 1-10 subjective pain scales. What do the numbers really mean? Especially as someone who has, by necessity, built up a high tolerance for pain. So is my 3 someone else’s 5? Who can tell. I much prefer the ones that assess a patient’s subjective rating of pain with the objective determination of the pain’s interference with daily activities.

For example:
0 No pain

1 Tolerable (and does not prevent any activities)

2 Tolerable (but does prevent some activities)

3 Intolerable (but can use telephone, watch TV, or read)

4 Intolerable (but cannot use telephone, watch TV, or read)

5 Intolerable (and unable to verbally communicate because of pain)

Based on the above scale, I spent Friday and Saturday at 4. By Sunday I was back down to a 3.5. We decided that the prudent thing to do was to just wait until Monday morning at 9am when I could call the GI’s office during business hours. It was me, acetometaphin and ice. And a very frustrated and helpless David who could only check my timing on my meds and replace ice packs for me.

Oh, and there is one more thing. The motor in our elevator is due to be replaced any time now and it will be down for a week or two. David runs up the stairs regularly for exercise. But I am in no shape to walk up 6 flights of stairs and for all we know the elevator may be out when I come home from getting my tube changed next Monday. So we practiced by me walking a very shaky flight of stairs. Fast forward to today, and I am up to two full flights, so I am making progress.

Anyway, back to the story. We overoptimistically hoped that the GI might be willing to change my tube early because of the infection, so Sunday night we stopped my feed at 11pm so I could be ready. They want you to stop any intake of clear liquids 3 hours before anesthesia. When I woke up I just sipped enough water to take my meds (ok by their guidelines) and flushed my tube, but whatever.

At 9am on the dot I called the office and left and urgent message for the doctor about the infection and the pain and that we would not go to the ER again. At about 12:30, the nurse calls and confirms my pain levels and that I am taking Acetometaphin and says she will call back. Meanwhile, I continue not to drink awaiting a call back.

At 3pm, I have therapy. I tell my tale of woe to my therapist. She calls it outrageous, malpractice and unacceptable. We agree that I will call again at 4pm and leave another urgent message. Which I do. At that point, I am completely dehydrated and have gone way too long with out any nutrition. So we assume nothing is going to happen that day, I hook up a feed and proceed to miserably force a lot of liquid into myself.

Suffice it to say that my body was not a fan of the long break between feeds. But I am mostly recalibrated now. Although once again, I do get to repeat the experience next week. At least I will know what to expect.

This morning, having still not heard back from the nurse, I send a message to the GI who referred me. I told him an abbreviated version of the saga and ask for a referral to a more responsive doctor. At about 4pm this afternoon, the nurse finally called back. She said she would have called back sooner, but nobody in the GI practice that is located in a hospital knew how to find someone who is responsible for stoma care. Because apparently it isn’t the GI who puts in the tube or anyone in his practice, nor is it anyone in the GI’s practice who takes care of my gastroparesis.

Just to break that down for you a bit more. As far as the GI who puts in the tube is concerned, their responsibility ends the minute the tube is put in. But they have no idea who they pass the baton of care to. This is not just my experience. I asked my tubie group who was responsible for stoma care so I would know what to ask for. The only answers I got were people telling me horror stories of inpatient stoma care by people who obviously had no clue how to care for a stoma. In a group that is normally great for those kinds of answers, I got crickets.

But, kudos to the nurse who actually did track down who the stoma care baton was supposed to be passed to. An Enterostomal Therapy Registered Nurse. That is it, it is all there in the title. Yet it took over 24 hours for a professional to answer me. In fact, she located a nurse for me and asked her to call me to set up an appointment. Given that I have learned never to expect a callback, I got her number too.

It was late enough in the afternoon and I was feeling a bit more 3.7 than 3.5, so I used the energy boost from finally getting an answer to write this blog post. Calling the Enterostomal Therapy Nurse is a project for tomorrow.

Usually, I can just sit down and bang out a blog post. That was not the case with this post. This one took several attempts over several days. I think you will understand why once you have read it all.

This is the saga of how a cumulative 34 hours in the ER not only failed to resolve an issue that could have been easily addressed in a single face-to-face doctor visit, but made it both much worse and left a patient and her spouse traumatized.

If you recall, back in December, I had a stomach bleed and was sent to the ER by my doctor. I was supposed to receive a medication that would help my stomach heal, but it was never administered. Eventually, I volunteered to vent my tube, we saw that the active bleed had stopped and I was sent home. Issues addressed:0.

A week later I was once again sent back for the same bleed. This time someone from GI actually came down to see me. He determined that there wasn’t enough space between my inner and outer bumper because I had gained 4lbs and he yanked my tube out a few millimeters. Afterwards, an attending GI and her minions came down and confirmed that my outer bumper should never be any tighter than it was after the adjustment. I was given the Rx that I should have been given at the first visit and sent home. Somehow completely missing that this would eventually lead to my third, and most horrific ER visit.

Two and half weeks later, after some continued small bleeds, the GI who had originally inserted the tube said that I had been having a harder time adjusting to my tube than most and grudgingly agreed that the inner bumper might be the problem. However, since the plan had always been to swap out my current tube for the kind he liked better after four to six weeks, he agreed to put me on his schedule on 2/13 for the replacement. He added that the new tube’s inner bumper is an adjustable balloon and would most likely be more comfortable for me.

I had a good 3 weeks and David and I were feeling optimistic about beginning to think about making plans for the future. But then once again, bumper issues resurfaced.

I believe the timing was purely coincidental, but it was the combination that kicked over the dominoes. Wednesday night, I had a very specific, but repeatable clogging issue in my tube. It worried me enough that I called the on call doctor. They told me to use warm water to dissolve the clot.

I did not go to medical school, but even as a relatively new tubie, I know how to deal with clogs, having had my share of them already. I didn’t think warm water would make a difference, given that I already use warm water to flush, but I agreed to try it. Whether it was the elapsed time or the warm water, it didn’t matter, the clog had cleared. End of story.

The next day was a different issue. First, some history. I had noticed some loose tissue in my stoma (the hole that my tube goes through) after the tube yanking incident during the second ER visit. I knew that with tubes come the potential for skin issues, so I wasn’t concerned. It was a bit irritating and uncomfortable, like having a blister, but nothing worthy of note.

For reasons unknown to me, this piece of tissue became inflamed and irritated this past Tuesday. It was bleeding and looked like it might be infected. I added a topical antibiotic to my cleaning regimen and clued David in. Wednesday he decided to hang out with me when I cleaned my stoma. He had been kind of unhappy* to hear that my stoma was bleeding the day before and wanted to see things for himself.

This time the tissue was more inflamed and the bleeding was worse. Nothing serious, think a bad cut. As I was drying the area with a cotton ball, I got a flash of pain and felt woozy, so I sat down on the bathroom floor. Then I started to see stars (it is not just a cartoon thing, apparently) so I lay down. I never lost consciousness, but per David, I wasn’t able to see anything but stars for 3-5 minutes.

Once I could comfortably sit up, I called the doctor on call’s service and left a message. I was still lightheaded when the doctor called back an hour later. The doctor wanted me to come into the ER right then. I pointed out that they wouldn’t be able to do anything until morning so in my mind it made more sense to get a good night’s sleep at home, set an alarm and go to the ER very early the next morning. That way the doctors would still have any test results when the clinic opened at 9am. For the record, David was unthrilled* with my plan. But both he and the doctor saw the logic in my plan, so we agreed that was what we were going to do. She also said that she was going to send a note to my doctor telling him that I had called them two evenings in a row

A couple of hours later I get a call back from the doctor on call. My doctor had called her and said that he wanted me to go to the ER right away. He had put in orders for the tests he wanted, including a CT scan in preparation for scoping me the following day. This included the replacing my tube earlier than my appointment scheduled in February. While I still thought my plan made more sense, I knew better than to argue with two GIs telling me to go to the ER, so we packed up at left the house at about 9pm.

The ER seemed emptier than we had seen before and I was quickly placed on a gurney. The gurney area of the ER was packed, including poor folks placed opposite the bathrooms. The man maneuvering me around parked me in the entrance hallway (we could see the front door from our spot) saying that we would be much happier there than in the main room.

A nurse quickly came to find out what was going on and not long after the ER doc came to tell me that there was nothing that they could do for me there and that we should go home. I carefully explained that we had been sent there by my GI who works upstairs and that he had put in orders for the tests he wanted done. She left never to be seen again.

A short while later our nurse returned, I asked for some Zofran (I am telling you, IV Zofran is so very magical), which she delivered and David and I settled down to wait. At about 2am, our nurse came by to let me know not to eat or drink anything because I was going to be scoped the following day. I was feeding at the time, so I asked her if I should stop my feed. She confirmed that it was not going into my jejunum and not my stomach and said that it was fine to continue.

At some point in the wee hours, I was wheeled to get my CT scan. There was no queue at that hour and we were expeditiously returned to our hallway home. Around that time, our nurse checked back in, I got my Zofran re-upped and we continued to wait.

Shift change came and went, and still we waited. It had been hours since we had seen a nurse and I was getting pretty desperate for some Zofran. So David went off in search of a nurse. He asked the first one he came upon if she could point him to our nurse. She checked the system, discovered that she was our nurse (we hadn’t been on her paperwork) while our regular nurse was on break. She gave me my Zofran and we waited a bit longer.

Because bureaucracy waits for no one, at 9am I started making my now regular calls to my supply company and my GI to get the supplies from the order placed on January 10th. A mere 17 days prior. The insurance company had finally approved the order, but some unnamed middle entity that contracts with the insurance company to make the actual payments had rejected the order.

I found this out when a rep from the supply company called me about it. She had apparently faxed my doctor’s office twice and had gotten no reply, so she reached out to me to see if I could get the doctors office to respond. After pulling several teeth, I finally got the woman at the supply company to spell out exactly what she needed the order to say so that it would be approved.

It had been several days of fruitless efforts. No calls were returned and no progress was made. But I wasn’t going to let sitting in the ER stop me from trying. Spoiler alert: no progress was made.

At about 11am, having not seen hide nor hair of anyone responsible for my care in several hours, I went and sought out our nurse for an update. He was surprised because he had spoken to a GI fellow 30 minutes prior who said he was going to come speak with us. I was sufficiently aggravated that I called the GI’s office myself. The best I could get was the person who answered the phone would send an urgent message to the secretaries who are the only ones allowed to speak with the doctor.

An hour or so later, we finally got a visit from a GI fellow. He confirmed that there was an open slot for my scoping and tube replacement, and the doctor who would do it would be down to see me soon. I once again confirmed that it was ok that I was continuing to feed. He said yes, and left.

About an hour after that, roughly 1pm, The fellow and the doctor who would be doing my scoping and tube replacement came to see us. Her approach was antagonistic and made it abundantly clear at the outset that she did not want to do any procedures on me that day. It was Friday afternoon and I don’t think she wanted another patient.

She roughly poked at my abdomen, despite both David and I protesting that my abdomen was very sensitive. Without looking at my stoma, she gave me a lecture about my dressing. When she removed the dressing, she made the tissue bleed and muttered under her breath when she used the very same dressing she had just lectured me about to staunch the blood.

She said the stoma looked fine, but that there was just some herniated tissue. Let me unpack that statement a bit. I am not a doctor, but I do know that a stoma is never supposed to bleed. I also know what my stoma looks like and it did not look good. It was red, inflamed and bled when you just looked at it. But that isn’t the big take away here.

That tissue that had been bothering me for 3 weeks? That was not some skin irritation. It was a piece of my inside on the outside. That is not something that I believe should be dismissed off hand. Especially when that bit of inside is on the outside.

But the piece de resistance was when she said that the bumper was too loose and tightened it. Because why not top off a great ER visit by reversing what the doctors did at the previous visit?

The doctor continued to insist that my tube was fine and that it didn’t need to be changed. I just kept reiterating that the tube was being changed regardless, it was just a matter of when. And that my doctor had ordered it to be sooner rather that later. Finally she challenged me. She made me verbally confirm that I wanted her to change my tube. Twice.

I was getting increasingly anxious about her being the one to switch my tube. I was hoping that she was professional enough to do it right, despite her obvious desire to do anything but change my tube. But then she spotted her out. The relief was evident on her face.

I asked if I should disconnect from my feed. She said that I couldn’t get my procedure done since I had been feeding. This surprised the fellow because it is “post pylorus,” which means that it is below the stomach. The reason that you can’t eat or drink before anesthesia is because there is a risk of aspirating stomach contents while anesthetized. But the pylorus muscle blocks intestinal contents from the stomach so they cannot be aspirated.

The doctor said that she would have to confirm with the anesthesiologist, but that it was very unlikely that I would be getting my tube changed. They left and I burst into tears.

No one from GI had the guts to come break the news to us. Instead, they sent the ER PA to tell us that I was being discharged. He had reviewed my case and arrived knowing that we had been waiting for 18 hours. And that I had been told by my doctor to come in the previous night. He was kind and patient and caring and everything we needed at the moment. But honestly, that was of little comfort.

What he did graciously do for me is get an answer directly from the anesthesiologist about prep for my tube change in February. I was not going to be turned away again because of bad advice. Nor do I give up on nutrition lightly. This was was the only useful outcome from this entire experience, because the prep instructions that I received from the doctors office make absolutely no mention of instructions for tube feeders.

The discharge instructions were laughable:
“Follow up with Dr. Kumta. You should call the office on Monday to see if they can schedule your procedure earlier.” They couldn’t have been more ironic if they tried.

Speaking of irony, the kicker in all this? The topical antibiotic did its job. The herniated tissue was clearly infected and it has healed considerably since Tuesday. It is much less painful when cleaning my stoma and while it still bleeds when I touch it, it is only a few drops.

David and I left the ER late Friday afternoon and now, 3 days later, our bodies have mostly recovered from the sleep deprivation and the aches and pains that come from middle aged bodies spending 18 hours on hard chairs and gurneys. But emotionally, we both have a long way to go.

How does one recover from an experience like this? Knowing that I face a future of cyclic ER visits because doctors rely on them instead of office visits. It’s not like we can just walk away from the medical system at this point. And it is not just a problem with these particular doctors. I have been fighting against the medical system for two years now. I have had to learn everything I can about my own disease, from both the medical literature and others’ lived experience to direct my own care.

Perhaps it is because I now have enough nutrition in me to process my experiences, instead of just being able to put one foot in front of the other, but this just broke me. I am feeling completely defeated and ready to give up. That is not hyperbole. I just don’t think I can keep this up. But I wouldn’t worry about me just yet. My therapist says that I am a survivor. The fact that I pushed through literal starvation to navigate a completely broken medical system on my own is all the confirmation she needed.

The fact that I am giving up right now doesn’t mean it will last forever. I need some time to move past the immediacy of this trauma before I can start thinking about next steps. Meanwhile, I will continue to increase my nutrition, even if that means paying for my formula out of pocket. And on February 13th, I will get my tube changed. But that is all I can commit to at the moment.

*An understatement

I learned a new term yesterday: Treatment Burden. It is defined in the medical literature as “the workload of healthcare and its effect on patient functioning and well-being” This workload includes everything from the time it takes to make and travel to doctor appointments and treatments, acquiring supplies and medication, maintaining supplies and doing whatever treatments can be done by oneself, from counting meds to using devices like feeding pumps or nebulizers, etc. The literature also recognizes that patients in the US have the additional responsibilities related to dealing with insurance companies and a fractured health care system.

There is so much more written on Treatment Burden than on Gastroparesis. That makes sense because it is a universal burden. It applies to anyone who needs health care. But it hits those of us with chronic illnesses the hardest. A cursory search revealed an entire volume of a respiratory medicine journal dedicated entirely to the impacts of Treatment Burden on patients’ health outcomes. And although my health issues are not respiratory in nature, the more general articles resonated with me deeply.

It has been over two weeks since my doctor submitted my updated order for my nutrition. And that order still has not been acknowledged by our insurance company. It has also been 25 days since we got our new insurance (this is our fourth insurance company in 13 months). After many calls and much hold time, I learned that my insurance company allows 45 days for processing orders unless the doctor puts it in as an emergency order. Which, of course, has taken literally hours of my life to hopefully make happen. I am still waiting for confirmation from the insurance company.

I am a champion sleeper. Anyone who knows me well can attest to that. And yet here I am, at 5:40 AM after having been laying awake for almost 2 hours stressing about the fact that after today I will have to tap into my unexpected bonus reserve of feed bags that I got from a fellow Gastroparesis Warrior. The reserve that it supposed to be my backstop against emergencies. Little did I know that insurance companies’ internal policies (I checked, and there is nothing in the meagre policy information they sent us or in their incredibly poorly designed app or website that say anything about the 45 day processing time) even though the person I spoke to at the company said it matter of factly. I was told that my order was “well within their processing time of 45 days.”

I used to think that the term Gastroparesis Warrior was strange because a cohort of people being starved by their bodies hardly have the energy to be warriors. That was before I truly understood just how much we have to fight for treatment and supplies. And just how many of those battles feel arbitrary and cruel.

Just yesterday there was a discussion in one of my groups about coverage of Zofran (Ondansetron). Ondansetron is a cheap generic, basic anti-emetic and is central to how folks with gastroparesis get through the day. It is one of the very few anti-emetics that does not make folks drowsy. The OTC alternatives are Benadryl and Dramamine, a single dose of either will knock me out for a couple of days. Whereas, I can take as much or as little Ondasetron as I need in a day and easily stay alert.

Our latest insurance company will only fill 18 pills at a time. Although I can refill it until I reach the limit of my Rx. Assuming a reasonable (for me) average of 3 pills a day, that doesn’t even cover a week supply. But it does add a significant treatment burden when I have to renew my meds so often and send David out to the pharmacy to pick them up for me.

In a conversation with folks from around the world, patients everywhere but the US were able to fill their full Rx. For the folks within the US, it varied widely. Some folks could only get 9 pills at a time. One lucky woman is able to get a 90 day supply. But most of us were looking at a max of 30 pills at a time. And that did not represent a full month’s of medication for any of us.

The functionality of our days varies. And sometimes we just don’t have it in us to reorder meds every 3-6 days. That is when we (myself included) start to hoard our meds. Before I take an Ondansetron out of its foil packet, I always assess whether my nausea level warrants the medication. And I often go without because I want to make sure to save them for when I really need them. That is a hard habit to break even when we pay the $25 cash for 30 pills at a time. And that, my friends, is also a Treatment Burden.

To summarize the article on Treatment Burden and work, all too often the Treatment Burden on patients with chronic illnesses makes working extremely difficult. I spend easily a minimum of an hour+ a day on tasks that fall under the rubric of a treatment burden. In fact, after running the last couple of weeks through my head, I can confidently say that I have spent more time dealing with the external logistics of my illness than I have on my feeding and stoma care routines. And those take a couple of hours over the course of the day. And yet, Social Security clearly states that simply having a feeding tube is not enough to make one eligible for Disability benefits.

That kind of crushes me (although I have started my application anyway) because after 2 years on Disability (which counts from the minute the original application is submitted, which in my case was a few months ago) one is automatically eligible for Medicare. Medicare may be a nightmare of bureaucracy, but as a government program, all of their administrative rules, including internal policies, have to be made public. So while navigating it may still be a nightmare, it would at least be a nightmare where I can access the rules of the game and figure out how to work within them. Also, ironically both Medicaid and Medicare and generally more generous with supplies and without additional “cost sharing” or copays.

Last night before bed I was commenting to David that as my nutrition levels increase, the visceral feeling of starvation is fading. And as traumatizing as those memories are, I sometimes need to tap into them to give me the impetus to make yet another phone call where I will inevitably sit on hold forever. And then, when I do manage to talk with a human (I have literally gone through 15 minutes of prompts before finally being put on hold to wait to speak with a human) it inevitably results in me needing to make more phone calls. Because folks, that is my choice. Go back to starving or continue the Sisyphean tasks necessary to keep me fed.