Eva's Gastroparedic Adventure

It has been a pretty mediocre week, both emotionally and physically. I continue to have tiny bleeds and the meds they gave me to help heal my stomach make my stomach mucus thick which makes venting air really difficult. And given how much difficulty I have burping these days, venting air through my G tube is pretty important for my comfort level.

My stoma (the hole my tube goes through) continues to be painful. The area around it is sore from the inner bumper pressing against my stomach and abdominal walls. The stoma itself stings and is leaking a little blood. Once again, not enough to be problematic. But enough to make for a cranky Eva. I am very much looking forward February 13th.

In the continuing saga of how our medical system is disintegrating before our very eyes, I had to call the lab about some missing results this week. I am a huge fan of patient portals. Gone are the days when only the doctor could see test results. Since continuity of care is no longer a thing, it is up to me to maintain my medical history so I can track changes and report them as necessary.

My most recent bloodwork had two categories of tests. The ones that come in within 72 hours and the ones that can take a week or two. I noticed that some of the quicker bloodwork results were still pending after 72 hours. Among those were my thyroid results. I have had a bum thyroid since I was 19, so I know how long thyroid blood tests take. I checked the patient portal and there were still open orders for the tests I was still waiting for.

I called the lab and discovered that the reason that the orders were still open was that somehow one of their techs just forgot. They had my blood. They had the orders. They had done some of the tests, but inexplicably, skipped others. Since it was their mistake, they tracked down my blood (rather than me having to go back in for another draw) and ran the remainder of the tests.

For those keeping track, this means that I can’t even assume that my labwork will be completed without my oversight. There is simply no stage of my medical care that I am not personally responsible for making happen.

Speaking of which, It has now been 12 days (7 business days) since my GI changed my nutrition order. Despite calling every few days, my order continues to be “in process with my insurer.” Yesterday I got a slew of calls from my insurer that only stopped when I actually answered the call and went through the prompts (no human was ever involved on their side of the “conversation”) to tell me that my Rx had been approved. Despite their great need to tell me the news, they did fail to tell me what Rx had actually been approved. And they have not updated their portal with the information. Hopefully tomorrow I will be able to get an answer from my supplies company.

If I had not gotten a month of feeding bags from a fellow tubie and bought my formula out of pocket, I would be in dire straights by now. No one in the medical community has acknowledged how expensive and how logistically difficult it is to be a tubie. Once again, I would be lost without my fellow tubies lighting the path for me.

All of the above is why I am such a crankypants today. I can handle the uncertainty of how any given day is going to go. I can handle the unexpectedly significant time commitment it takes to be a tubie, even on days when I feel crappy. I can even handle the nausea, pain and discomfort that come with this disease. But when you add the having to micromanage every single aspect of my care, then it just gets to be too much.

The emotional exhaustion is almost overwhelming. It is the paradox of nutrition. When I was starving, I had no bandwidth for feelings, let alone trying to process them. Now that my nutrition is beginning to increase (I am now just over halfway through my transition to the higher calorie formula) and I have the bandwidth to do more than just get through the day, I am beginning to feel the isolation of this experience.

I am so incredibly fortunate and grateful that I have such loving and supportive friends, family and community. You all buoy me more than you can ever know. You make me feel loved, supported, valued and comforted. And you simply cannot know the emotional weight and exhaustion that comes with this life. It is like living in a TARDIS. I can only show you the outside, but it is so much bigger on the inside.

Fortunately, I am healthy enough that I can do almost all of my own caretaking when it comes to my physical needs. But David lives in the TARDIS with me. He helps sooth my pain, both physical and emotional, all while seeing his own world turned upside down. And as much as I would love to be able to afford him the same comfort he does me, I can only do so limitedly. In part because I only have so much energy and in part because I am the one who turned his life upside down.

The mirror of Little Miss Crankypants is Little Miss Grateful, so I am going to revel in the love and try to make today a little more bearable.

It has been an adventurous week with lots of news, but very little of it is momentous. Just to set your expectations. 😉

To start, I ventured out to get my bloodwork on Tuesday. I walked a mile roundtrip and I came back tired, but not wiped out. This is a serious accomplishment. But my legs weren’t happy with me afterwards. Which pissed me off, because as a native New Yorker, I have, until now, had the ability to go from couch to walking 6+miles without skipping a beat. On the other hand, it did help me realize that I now have enough nutrition to start walking regularly again. Which I started today by walking around the block (.4 miles).

After a couple of weeks of a clear tube, I started seeing tiny amounts of blood in it again. I knew it was not something that would impact my hemoglobin* and that I had an appointment with my GI who put in the tube, so hopefully I could get some answers. Then, Monday night, I was woken by a very sharp pain in my stomach where the inside bumper that keeps the tube from falling is located. Fortunately, my appointment was Tuesday afternoon.

The GI seemed completely uninterested in my bleeds, but I convinced him to take a look when he changed my tube to the kind he likes better. This was a swap that he recommended to me when I got my current tube inserted. This style works great for the initial tube until the stoma heals and the stomach has formed a good adhesion to the abdominal wall. After that has happened (at about 6 weeks) he prefers to switch to the other kind of tube for the longer term. The swap is scheduled for February 13th. We can call it a late birthday gift.

To recap: My current tube is a tube within a tube. The outer tube stays in my stomach so that I can vent air and stomach contents, and then the smaller inside tube goes to my jejunum for my feeds. The better kind of tube has two tubes that are side by side. It also has a soft balloon rather than a hard bumper on the inside. Which, if the bleeds are caused by the bumper rubbing against the stomach wall, a soft balloon would address on its own.

In other news, the backpack I received from the supply company that holds my pump and my feeds is disintegrating after just a couple of months of light use. This backpack is what allows me mobility for the 18+ hours a day that I feed. So it does get a bit of wear and tear. But has only been used outside the house 5 times. There are folks that haul these things to work, to pick up kids and to run errands, so comparatively, mine really has only seen light use.

Anyway, there are a bunch of crafters on Etsy who modify basically any backpack for tube feeding. It mostly involves adding grommets for tubes and adding something to hold the feed bags, sometimes something as simple as a carabiner. Unfortunately for me, most of those backpacks are designed for a different, much smaller pump than I have. It is the standard pump for kids and a lot of these backpacks are kid oriented. Which makes me absolutely want them (there were a couple of awesome dinosaur ones!), but alas, it is not to be.

I had some very specific modifications in mind and the woman who had experience with Kangaroo pumps happened to be in the UK. I discussed the changes with the crafter and she was happy to make the modifications for no additional charge. And its not like she is making big bucks. This modified backpack ran me all of $75. Which is why I am taking this moment to appreciate all of the creative problem solvers in the tubie community who share their imaginative solutions at extremely reasonable prices. It really is a very generous community.

Anyway, I have been eagerly watching the tracking information on my new backpack as it managed to get checked in 4 consecutive days in the UK without apparently moving an inch. But it has finally reached the US and cleared customs in New Jersey today! As you can see, I lead a very exciting life! 😆

*My bloodwork has confirmed that my hemoglobin is at a very good level.

This was a nice, quiet week. I had a bunch of genuine C days in a row, something that hasn’t happened since my nutrition stalled in mid-December. But as of Friday, I am now back to truly increasing my nutrition by 50-100ml every 3 days or so with the higher calorie formula.

I continue to feel the improvements in my brain capacity and overall energy. I am back to being able to read long-form articles, which I am enjoying. Although given the state of the world, those articles tend to be depressing, but that is another issue.

My increased nutrition is also helping me disambiguate which symptoms were from malnutrition and which are from gastroparesis. I was fairly warned that the tube would not alleviate any of my gastroparesis symptoms and that is indeed true. After a spate of C days, I started feeling crappy again. And it turns out that the needing to lay down with minimal external stimulation is a gastroparesis thing. It is like someone turns the nausea setting up to 11 and my body responds by needing to kinda shut down for a bit.

This will obviously make future planning difficult moving forward. I know that I can push through tough days when I need to, albeit at a cost. But as the first ER visit showed, that cost can be mitigated by whatever resilience I have built up with my increased nutrition.

David and I have started discussing the possibility of travel again. We aren’t quite ready to do it yet, but we are ready to start thinking about what ducks would need to be in a row to make travel happen. For example, given the recent airline delay fiascos, what is the minimal amount of formula that I would be comfortable having in my carry on? TSA rules say that I could only bring enough formula for the travel day. But if I got stuck somewhere or my checked luggage got lost, I would need two shipping days to get replacement formula to me.

In addition to travel, there are things that I would like to do once I get to full nutrition and have energy again. Covid-willing, I would love to get to get back to the theater. The challenge is that most theater tickets need to be bought in advance and I can’t predict how I will actually feel the day of the show. This all comes back to my resilience. If I feel like I can push through the crappiness and still enjoy the show, I will do it. But if I know that I will be too sick to appreciate anything besides proximity to a cat, I will just have to reconcile myself to the cost of that ticket being yet another expense related to gastroparesis.

I recently saw a parenting meme recently that really resonated with me about RSVP options. The original 3rd option was a Yes, assuming none of the kids get sick and we have to cancel at the last moment. This is my version:
* Yes
* No
* Hopefully? Assuming that I feel well enough to enjoy whatever the event is.

This coming week, I have an appointment with Dr. Kumta, the doctor who put in my tube. Since I have not seen any more blood since my tube was adjusted at the ER, I am going to assume that issue has been resolved. I do intent to ask him about scheduling replacing my tube with the one he likes better since I am now almost 8 weeks out. Unlike the first time, I am in no rush to get the new tube. Etisarap may have some logistical challenges (nothing that can’t be solved with tape), but I still love her dearly.

The replacement tube will still be Etisarap. I am following the Dr. Who/grandfather’s axe theory of naming. Even if she has been wholly replaced, she will always be Etisarap to me.

According to Schoolhouse Rock, 3 is a magic number. But for my body, 1,000 seems to be a magic number.

If you recall, I had hit the 1K calorie threshold before, but it was only briefly and with a fair amount of misery. I had to drop back to let my jejunum recover. Then came two ER visits. I rebounded from the first one impressively well. The second one, not so much.

I was frustrated because even though my stoma was healing nicely from the adjustment and there was no more blood in my tube, I was stuck with minimal energy and needing lay downs. I knew that I could bounce back if I could up my nutrition. However, I couldn’t comfortably increase the volume in any meaningful way in the short term, so I felt stuck.

The nutritionist at the supply company ordered me a sample case of a higher calorie formula. 1.5 calories per ml as opposed to the 1.0 calorie per ml formula that I was on. I tried substituting 100ml of the higher calorie formula for the lower, keeping the overall volume the same. I knew from experience that I would need 3 days to ascertain whether my body would tolerate the more concentrated formula.

Long story short, it did. I do need the 3 day adjustment time, but I am once again able to slowly ratchet up my nutrition. And just a few days after I hit the magic 1K threshold, something auspicious happened.

Our adventure was tiring, but not so tiring that I needed a nap afterwards. Nor did I need the nap the day after. And yesterday my wonky brain came back and I surprised myself by commenting on public policy while listening to NPR. Both things that were unimaginable just last week. That burst did tire me out, but it is so nice to see sparks of Me begin to emerge. I know that I still have a long way to go, but the slow and steady progress is definitely buoying. Tonight I will continue the march forward by replacing 250ml of the 1.0 with the 1.5.

I had an appointment with my GI this morning, and he is fully behind my plan to slowly transition from the 1.0 to the 1.5. And only go back to futzing with the speed after I am at my nutritional goal. We both have concerns about how to put this into an order that the supplier can comprehend, so I have asked my nutritionist to help the doctor put the order together. He even suggested that she call him directly, something that I am completely behind. Since I can order the formula directly, I even have a backup plan if the order goes awry.

Since I have long hair, I can really see how two years of malnutrition has made my once thick hair very fine. But before I could ask my doctor about doing some nutritional bloodwork on me, he recommended it. I have to go to the lab to get blood drawn for my thyroid test, so I can just get this drawn at the same time.

Right now, we think the nurses at the local hospital are on strike (nurses at Mount Sinai are definitely on strike, we just aren’t sure if the nurses at the local Mount Sinai are part of the same union) and my bloodwork isn’t urgent, so I will not cross the picket line for it. If the strike goes into next week, I will just find another lab to get my blood drawn.

It has been several days since the space between the bumpers on my tube were increased and all signs point to that having been the issue. I have not vented any blood since Saturday, and that was expected after the “adjustment.” But I remain in pain, although it is decreasing with time, and David and I both remain physically and emotionally exhausted.

There was a decision at my first visit to the ER made by my GI’s team on December 23rd not to do a tube adjustment. No one with experience with a G-J tube even bothered to come down and take a look at me. They just monitored my hemoglobin.

A week and several phone calls later, the nurse practitioner sent me back to the ER. This time my GI’s office started paying some attention. Several GI’s came downstairs to take a look at me. The first, presumably a resident, took one look at my tube and said that it was too tight. That was all it took. A single glance. He then proceeded to start pulling the tube through my stomach to give the outer bumper more space. If you are easily ooged out, just skip the next two paragraphs.

Some details about how the tube stays in place. There is an inflated balloon on the inside that keeps the tube from just falling out. The tube is also stabilized by adhesions that my body attached to it as part of the healing process. When he pulled that tube, it forced the balloon against my stomach and abdominal walls with a great deal of pressure. If you recall, my abdomen is incredibly sensitive to touch. That alone brought tears to my eyes.

But her wasn’t able to get the tube to budge by just pulling. He had to brace his hand against my abdomen and tug. Hard. Those adhesions were really strong and he had to rip them to get the tube to budge. He apologized for making me “uncomfortable” but it seemingly never occurred to him to use some lidocaine to make the experience less painful.

I was really glad that David was there to listen for me, because I still have no idea what he said afterwards. All I could do was breathe through the pain. A while later, another GI (presumably an attending because she had two interns following her around like baby ducklings) came down and took a look. She was clear that she was a general GI and not part of my doctor’s team, but even she commented that she would not want my tube to be any tighter than it was at that moment. She went back upstairs, conferred with my doctor’s team and that was when they decided to release me.

It has been a serious relief not to feel compelled to check my tube constantly for signs of blood and my anxiety levels have dropped considerably. But while I bounced back surprisingly quickly from my first ER visit, I really didn’t have the reserves to do it a second time. And I haven’t been able to increase my feeds from 51ml/hour to 52ml/hour because I just don’t have it in me. I was going to try to do it anyway, but David wisely talked me out of it. Better to stay put for a little longer than to have to drop back to 50ml/hour.

The nutritionist from the supply company ordered a sample case of the 1.5 peptide formula for me to try. This formula has a higher calorie per volume, so if I switch to this, I can bump up my nutrition without having to increase my pump speed. This is the same formula that the nutritionist in his office originally recommended for me, but he went with the lower calorie option instead. I am hoping to convince him to let me switch at our appointment on January 10th.

Because things can never be simple, Saturday morning Dancer started vomiting pink liquid. He was clearly uncomfortable and nauseated all day. Uncharacteristically, Dancer slept next to David and apparently was in such a deep sleep that David nudged him a few times to make sure that he was still breathing. This is particularly noteworthy because Dancer has a perpetually stuffed nose and usually snores.

The deep sleep seems to have done the trick. He was feeling noticeably better on Sunday by the time he was able to see the vet. They gave him a strong anti emetic and a few days Rx of med that coats his stomach (it was a med that I tried too, but it did nothing for me) and he seems to be doing fine.

They also put him on an Rx wet food for a few days. Of course Xena Malka wanted some, so David just bought her some Friskies so she can eat her own wet food while Dancer eats his. Unfortunately, our way too skinny Nom Nom has no interest in wet food. Well, unfortunately for us. Xena Malka is more than happy to not have to share with her brother.

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.