Category: Gastroparesis

Starting with the good news: I will not be stuck in the hospital waiting until Tuesday to get an endoscopy.

Today was a very busy day in the ER, busier than last week at this time. But before they even stuck an IV in my arm, my GI’s office was on the phone with a PA. My hemoglobin remains stable.

The covering GI for my doctor came down to the ER and poked at my tube and determined that the space between the inner and outer bumpers was way too small. The doctor told me that he deliberately made it tight when he first inserted it to facilitate healing, but that it should loosen over time. It didn’t.

He pulled more of the tube out of my stomach to make more room and prescribed some Nexium to facilitate healing. I may see some more blood as a result, but as long as it is in the quantities I have been seeing it in, I should be ok.

I am relieved that we seem to have gotten in and out of the ER in record time (6 hours as opposed to last week’s 14 hours) Even if I am in significantly more pain than when I arrived. I have an ice pack with my name on it in our freezer and a Dancer waiting to comfort me when I get home. Now we just waiting for them to take out my IV so we can go home.

“…any information, even stuff I’d rather not know is better than none.”

Andy Weir

This last week of 2022 has been especially difficult for both David and myself. Neither of us are sleeping particularly well and we are both having anxiety dreams. It feels like we are back in the earliest days of the pandemic, when we knew things were going wrong, but there was a vacuum of information. We carefully examine everything I vent, completely uncertain of what it means. But it is rarely comforting. It continues to be a rusty red, but without any bright red. Last night and this morning I vented dark brown, almost black sludge. Was is the M&Ms I ate last evening? If so, there was no evidence of the dye from the candy covering. But I can’t rule it out

We are both emotionally and physically exhausted with no banana bread or sourdough starters to distract us. And the timing couldn’t be worse. Once again, it is the Friday before a holiday weekend. The absolute worst time to have to go to the ER. Especially knowing that all they will do is draw blood every 4-6 hours while we get constantly rearranged in the never-ending game of ER tetris.

The problem is that we are working without any parameters. None of the bleeds have been particularly big, but they have been daily occurrences. Is my body able to rebuild my hemoglobin if I am bleeding at a slow rate, even if I don’t see any bright red blood?

I called my doctor’s office again today to ask specifically if there is anything I should be doing between now and my appointment on the 17th, but I am fairly sure that the nurse practitioner is going to give me the same vague response. But I don’t know what else to do.

What I do know is that this level of heightened anxiety is detrimental to both of us. Neither of us have the reserves we need to be dealing with such a significant situation without any medical support.

Monday was a legal holiday so I called my GI’s office Tuesday morning. Apparently, my doctor is on vacation until January 15th. I spoke to his nurse practitioner who reiterated that if I have an active bleed, I have to go to the ER. When I tried to get any more out of her she said “what do you expect me to do over the phone?” So that was that.

I do have an appointment with my GI on January 18th, but until then I am just on blood patrol. I continue to have small bleeds, but since all the ER can do for me is monitor my hemoglobin levels, I am staying home unless I get a bleed that is big enough to change my hemoglobin levels.

I am also on a red-free diet. This is relevant because I used to drink red Gatorade and I still eat sugar candies and the occasional M&M. Even though David and I can both distinguish old blood from generic stomach detritus at this point, it can still be hard to distinguish fresh blood from dye. And it also removes all shadow of a doubt that if I see bright red, it is an active bleed. Ah the things I have learned.

I had my appointment with my nutritionist yesterday and as expected, it was a complete waste of time and money. She did clarify that the goal my doctor set of 100ml/hour was really high (this despite the fact that her initial projections had been at 100/ml-125 ml/hour). She added that most people max out at about 65 ml/hour. When I asked her about how that would impact my ultimate caloric intake, she demurred. Seriously. Same with when I asked her whether she knew why my doctor had overridden her suggestion that I go on the 1.5 calorie formula. I have an appointment with him on January 10th, so I will ask him then.

She did giver her stamp of approval for me moving up a single ml/hour every 3rd day. Which would have been today, but my jejunum is feeling worse rather than better, so I am staying put at 5.1 ml for a bit longer.

It was Friday afternoon at 3:30pm on erev erev Christmas (the afternoon before Christmas eve) and all was quiet at Chez Evid. That is, until I vented my G tube (my G tube goes into my stomach and I can open the tube and vent air and drain my stomach contents–it makes me feel better) and not only was there an unusually large amount of fluid, but it was filled with bright red droplets. I had never seen anything like that before.

Following the instructions of the GI who inserted my tube, I called his office. His nurse practitioner said that it sounded like and active bleed and that I needed to go to the ER. She also texted the doctor. He called back while I was on the phone with her and he said the same thing. So off we went to the ER in Manhattan where my doctor was on call. Enroute, a member of my doctor’s team called, asked some more questions and said that he would be tracking my situation at the ER.

The hospital is located on the upper east side of Manhattan and our first interaction was deceptively calm. They brought me in right away, drew some blood for a bunch of blood tests and sent me to the part of the ER that looked much more like an urban ER.

The beds were 2 deep, and like any parking lot, there was constant shifting as people went off for tests or were discharged. It was a bitterly cold night and some people were clearly there to stay warm, but they weren’t given beds. It was a chaotic and cacophonous room and I thought it best to just kinda lay low.

Courtesy of the patient portal, I was able to tell when my test results came back, which was great because they weren’t being particularly generous with information. But there wasn’t much to tell. My original tests showed a healthy level of hemoglobin, so all they could do was wait 4 hours to test me again.

Everything I had heard about feeding tubes and ER docs is true. The ER doc struggled to understand that I have a G-J tube (stomach and intestine) and not just a G tube (stomach only). When he finally grokked it he said that they don’t deal with G-J tubes and refused to make eye contact with me for the remainder of his shift.

Fortunately, unbeknownst to us, my doctor’s office was monitoring the situation. At 9:30 pm they did another blood draw and my hemoglobin had dropped. The decision was to wait 6 hours to do another blood draw, which would be 3:30am.

David was exhausted and we thought at least one of us should be compos mentis, so David went home to catch some sleep and remind the cats that we love them (ok, he really just went to get some sleep, I was the one who wanted him to remind the cats that we love them). I was able to get a back row slot so I was not constantly juggled to make room for others.

I had not fed since Friday around noon and I was already on reduced calories. We had been asking if I could set up a feed and they had been telling us to hold off. But the PA said that I could hook up a feed. Fortunately, I had thought to being my noise cancelling headphones and settled in to listen to episodes of Firefly. My ultimate comfort show.

At some point someone came by to take my vitals and apparently my blood pressure was unusually low, although no one told me that at the time. At 3:35 they did the next blood draw and I settled back down to wait. At about 5am, the PA asked me to vent again and there was only rusty colored stuff. No bright red blood. Then they took my blood pressure again.

Then, out of the blue I get handed my discharge papers. That was also when I found out that I had been ordered to be admitted and had just been waiting for a bed. But because everything looked ok, they cancelled that order and decided to release me with instructions to follow up with my GI’s office early next week. I hightailed it out of there, not even waiting for David to come pick me up. I took a Lyft home before they could change their minds.

We were all really happy to have me home. Dancer snubbed me at first, but both he and Xena Malka magically appeared the minute I crawled into bed. There really is no place like home.

Everything had been chugging along fine until I pushed up too fast. If you recall, when last heard from, I had reduced back down to 53ml/hour but kept the same amount of formula to stay at 1,075 calories. That did increase my feeding time to about 20 hours. However, over the course of 3 days at 53ml/hour, I was feeling progressively worse, not better.

Then I dropped down to 50ml/hour, which had me feeding 23 hours a day. 50ml/hour is not uncomfortable in itself, but my jejunum is just so sore from my efforts. Only having an hour between feedings is not enough to let my poor jejunum get any rest. With great regret, I have decided to drop back to 900 calories so that I can go back to feeding for only 18 hours and hopefully start healing. Because let me assure you that a bad gastroparesis day with a sore jejunum is just a misery pit.

I am back to spending much of my day, horizontal in bed because bending my legs at the hips hurts my lower abdomen too much to be able to curl up in a fetal position. Which really sucks when all you want to do is curl up in the fetal position.

I seem to have traded in nausea for pain, and I am not a fan. The nausea isn’t fully gone, but right now the pain is more distracting. I can’t take much in terms of pain meds. Anti-inflammatories make me feel like I have broken shards of glass in my stomach. Aspirin irritates the stomach, so I am generally avoiding it. Acetaminophen is hard on the liver, so I try to use it sparingly. A heating pad sounds lovely, but the area is just too sensitive to put a heating pad on.

I have been able to start listening to an audiobook while I do my flushes and connect and disconnect from my feeds. It is one I have both read and listened to before, so I don’t have to concentrate too hard on following the story. I am too uncomfortable to focus most of the time when I am laying down. Sometimes I can listen to comfort music. Sometimes I just need a dark and quiet space. Ideally with my Dancer on the pillow next to me.

Where might my doctor and my nutritionist be in all of this? Ghosting me. I texted, emailed through the portal and called several times and left voice messages to no avail. I finally sent a Howler (angry email) to the office and they finally called me back. So after dealing with this for over two weeks on my own, I finally get to talk to someone in my doctor’s office on December 27th. Granted it is only the nutritionist, and the doctor overruled her last time anyway. But it is a start.

I usually write these on Sundays, but this one couldn’t wait. I just passed what I consider to be a hugely significant milestone. I crossed the 1,000 calorie threshold for the first time in 2 years! I still have a ways to go, but somehow being able to count my nutrition intake in 4 digits rather than 3 feels like we have crossed yet another hurdle.

In other good news, Tuesday I went out for the first time since I got my tube on November 22nd. It was to go to a doctor’s appointment, but who cares, it got me out of the house. The weather was cool and drizzly. In other words, the weather was perfect. I walked .5 mile each way. David walked me there, but I was comfortable enough to walk home alone.

The doctor was exactly what I needed. To recap, I have run out of my thyroid Rx. I know that I need my I need my thyroid meds recalibrated, but I am not at my full nutrition levels, so getting a blood test now doesn’t make a lot of sense. Fortunately, she agreed. Gave me an Rx and told me to get bloodwork in 7 weeks. That would give me time to ramp up my nutrition and we will know what my thyroid levels are at that dose.

Continuing on the good news train, my resilience is continuing to build. I walked a mile and had a doctors appointment and I was not stuck in bed for days afterwards. I did feel meh and nap a bit more, but I remained a generally functional human being.

In the “we are still making progress, but the road is bumpy” category, I am struggling with increasing the pump speed. I was pretty uncomfortable at 55ml/hour, but we tried bumping me up to 60ml/hour last night and I felt like someone was making sausage in my intestines while I was still using them. It was uncomfortable enough that I had trouble falling asleep. And while I am not having diarrhea per se, I have had several bowel movements a day since I bumped up to 55ml/hour.

My nutritionist is not thrilled with my progress. In her words, “I still have a ways to go.” I am supposed to get up to 100ml/hour, so she has a fair point. I checked in with my fellow tubies and they reminded me that we are all different and we are the only ones that can dictate the speed and increases at which we are comfortable. I will follow their advice and just take it as slowly as my body needs to go.

I could just drop back to 55ml/hour, but I am loath to give up those last few calories that push me over the 1,000 calorie threshhold. Once again, David solved the problem by suggesting that for a couple of extra hours of feeding, going from 18 to 20 hours, I can drop back to 55ml, but maintain my current formula level. I will happily tether myself for an extra couple of hours for such a win/win scenario.

In other news, the eagerly awaited venting bags arrived. The bags are huge (twice as big as my feed bags) and their tubing is easily twice the diameter of Etisarap (my own feeding tube). They are also heavy. But, the ability to comfortably vent is so important, that I will find a way to make them work. I always have the backstop of the expensive Farrell bags that are actually designed as vent bags. My nutritionist says that she will arrange to get the script if I decide that I want to try the Farrell bags out.

As my nutrition levels continue to rise, I increasingly have the processing power to really comprehend my new reality. And honestly, it is a an emotionally fraught struggle.

It is impossible to convey just how life-changing being able to feed myself again is to someone who hasn’t been there. I know this because even I struggle to fathom it, and it is my reality. Prayer have never been my thing, but I am filled with so much gratitude for Etisarap (my tube) that I am crafting a blessing for her.

Traditionally Jews say a series of morning blessings upon awakening. They are a series of blessings appreciating of the miracle of waking up. I never truly appreciated them before now. It does feel truly miraculous to me to wake up in the morning knowing that I have a means to feed myself. So much so that I feel a compulsion to express my gratitude.

I mention these overwhelming feelings of gratitude to contextualize the fears and anxieties that are my current struggle.

Enteral feeding comes with a whole lot of dependencies that I am just not comfortable with. My biggest concern? Access to everything I need. I am allergic to soy, which severely limits the number of formulas that I can use. Which is counter-intuitive given that soy is an increasingly common allergen, but that is not what concerns me.

One of the lessons that I believe we can all agree on is that Covid has taught us just how precarious supply chains are. Even before I got sick, I had started weaning myself off my antidepressant with the strongest withdrawal effects because I was concerned that it might one day become difficult to access. This is not an unreasonable concern as anyone on Adderall can tell you. As unpleasant as those withdrawal effects can be, they are nothing compared to starving.

My other concerns are all about our crumbling medical system. David and I have been talking about leaving the US since 2016 and our primary criteria for where to settle have been access to quality health care and the ability to get residency and buy into those health care systems. This seems more important than ever right now.

My formula does not require a prescription, but my feeding supplies do. I confirmed this the hard way when I tried to purchase some bags to vent my stomach. One of the features of a G-J tube like mine is that I can open the port in my stomach to vent out air and stomach contents to make me more comfortable. It makes a huge difference in my comfort. It also makes a pretty significant mess.

The venting bags are no more than a bag with a one way vent preventing the air from re-entering my stomach. But they are inaccessible without a prescription. And even with an Rx, they are $15 a pop. Fortunately, my fellow tubies once again came to my rescue. The urine bags that go at the end of catheters have a one way vent and do not require an Rx. They are also closer to $2 a pop.

Which brings me to money. There are only a few companies that provide enteral feeding supplies. There just isn’t that much demand. And neither of the two biggest ones take Blue Cross Blue Shield anymore. We get our health insurance through the New York State Health Exchange, The timing works out such that we are in the open enrollment period and we can change our insurance starting January 1. My challenge is to find a company that covers my GI, the doctor that inserted and maintains my tube and my supply company. And given how the most support has come from this supply company, I am bound and determine to keep them.

For all of the reasons I have laid out in previous blog posts, we paid out of pocket for my first month of supplies, including Yipbarri (my pump), my formula, my feedbags, two syringes, tape and gauze. It ran over $800. For a single month!

Even with insurance, the 3 plans that meet my minimum criteria only pay 30% or 40% of my supplies and that only after I meet my deductible. At best, that is $6,720/year + the deductible and the monthly premium just to keep me alive. It should not surprise you that I see a constant flow of Go Fund Me’s and people offering leftover supplies in my gastroparesis group. This is not an affordable lifestyle. Especially because it is incredibly difficult for people with gastroparesis to hold a job because of the unpredictability of the disease.

Which leads me to my next emotional struggle. Until now, I could not distinguish whether my discomfort was due to the gastroparesis itself or the fact that I had to force nutrition into my poor stomach. Now I can say with certainty that my gastroparesis continues to be debilitating. Which is all of he more frustrating as I start to have the energy to do things and end up back in bed laid low by raging nausea that refuses to be tamed. I have no way of knowing how I will feel from one day to the next. Although mornings do continue to be the worst.

Yipbarri just alerted me that my feed is done and I need to go disconnect and flush Etisarap, so I will end this here. Still to come. Reconciling to be a non-eater in a world where so much revolves around eating and drinking. Just a reminder that you should feel free to ask me anything about gastroparesis and/or enteral feeding. I have no idea how this reads to someone not in the midst of it, so if you have questions, please don’t hesitate to ask them.

I got so distracted by introducing Etiserap and Yipbarri that I forgot to give an update on how I am doing. Several of you asked after me, which made me feel very loved. Thank you for that.

It has been 8 days and 6 feedings since I got my tube. I am now up to 750 calories a day in formula. I am eating even less since the tube, but I would bet that I am still getting 100 additional calories a day or so. Something clicked in Monday afternoon and I have started feeling like a vestige of myself again. And I still have a long way to go before my formula fully titrated up, which means that it should only get better from here.

There is a big caveat though. Increasing my caloric uptake is mostly a wonderful thing (I will explain that qualification in a bit), but we always knew that it would not do anything for my gastroparesis. I have had a couple of bad gastroparesis days this past week. They are much easier to bear knowing that I will not need to force any lead formula bombs into me just to ensure some degree of nutritional intake. I am still having to drink 20 or so ounces of electrolytes a day until I reach a point where I can get my necessary hydration through Etisarap. That makes my bad days just bit worse, although I see a clear light at the end of the tunnel.

The tube feedings have been going very well, even if titration is going a bit slower than we had hoped. Last night we also realized that given the volume of my daily formula intake, in just a few days I will no longer be able to sleep 12 uninterrupted hours without doing a flush and switching feed bags. Long term, I may not end up needing as much sleep. But we are not there yet.

I have encountered some unexpected bumps in the road as I slowly regain my Eva-ness. I still have no resiliency, but I am beginning to feel feelings that my body has just not had the capacity process for almost 2 years. I feel the feelings but without the capacity to process or contextualize them. My therapist has been incredibly helpful with this transition, but they are absolutely exhausting.

Someone in one of my chronic illness groups recently mused on how many other health issues we are forced to deprioritize because our chronic illness takes up so much of our energy. That was a timely observation because I am about to run out of my thyroid meds. My thyroid numbers have been all over the place for the past couple of years. Whether it is because of the serious weight loss or the malnutrition, I don’t know. I had been postponing dealing with the issue until I was fully titrated up and my TSH levels had an opportunity to stabilize. But my hand was forced by my inability to get refills for just a couple of months. I do have an appointment with an endocrinologist next week, so we will see what she has to say on the matter.

I have been meaning to make the big reveal on what I have named my pump and tube for several days now. It has just been a week since I got my tube, although it has felt like much, much longer than that. Everything is going fine, there are just new patterns to learn and new habits to develop. The This t-shirt spells out the various steps, although I think the t-shirt is useless because if I needed a reference point, the words would be upside down to me.

But that’s not what you came here for. I am sure that you have all been waiting with bated breath (if so, please exhale now) to learn what I have named my tube (aka my front tail) and my pump.

This is actually a big reveal for everyone because the names I had originally settled on have changed. I went into my procedure last week with names for both my tube and pump in mind. But it turned out to be a wise move not to share those publicly, because they have both changed. The names I had picked were simply wrong for both.

I didn’t get there on my own. Paul Anderson gets full credit for helping me understand this distinction. In his words:

Imagine you have an alien parasite burrowed into your belly and it adorably thinks it’s hiding despite its tail hanging out. It’s a confused parasite from a mirror dimension. That’s why it’s hiding.

Paul Anderson

I love the idea of having a little confused alien burrowed into my belly. Its like I have a helpful friend in me all of the time. The only part I took issue with is that my tube is not a parasite. A parasite feeds off its host. But my little alien friend feeds me. It is not a symbiote either, because to be fair, the relationship is very one sided. My new friend is the direct opposite of a parasite, and her name is Etisarap. For those wanting a little more explanation, Etisarap is parasite backwards. I don’t know if her species has gender, but she seems to be fine with me using female pronouns for her.

It is a dictionary of Wagiman, a people and language group who traditionally dwelled in Australia’s Northern Territories. The word for Joey in Wagiman is Yipbarri. Thus my pump’s name is Yipbarri.

DaveGordon gets an honorary mention for coming up with the original name for the pump: R2ube/D2ube. Obviously, I took some creative license with the spelling.

I also want to take a moment to appreciate those who submitted their ideas. Your offerings included puns, drag queen names and philosophical humor. Clearly my friends know me. And I consider that to be a Very Good Thing.

Just a quickish update because I am on my 3rd day of minimal nutrition. Starting with the phenomenal news, I am now, at long last, doing my first feeding!

But all was not lost. Yesterday, I spent an hour+ Facetiming the supplier’s nutritionist. She did a great job showing me how to use the pump AND answering a huge list of questions that I have been collecting for over a month. She was also appropriately horrified and appalled that my GI’s office released me into the wild without any training. 

The combination of the lesson, having my questions answered and having the tube placed means my shoulders are the furthest from my ears than they have been in a long while. 

Next up, I will share the names of my tube and pump. But right now, I am going to uncharacteristically save my little remaining energy and watch some dumb sitcoms.