Month: February 2023

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.