Month: September 2022

This week’s mail has just been a bundle of calories. First the 1.4 formula of Kate Farms arrived and then the calorie-packed Benecalorie finally showed up. It had taken a detour through Plattsburgh, which is why it took so long to get to me.

The 1.4 formula is just a tiny-bit more viscous than the regular formula. But it feels like it is much heavier than that. I also noticed that on days when I only ate the 1.4 formula, I wasn’t eating any solid food because the formula kept me so full all day. One might say that just sticking to the 1.4 formula is the best bang for the buck from a caloric perspective, anyway. Just skip the solid food.

However, my nutritionist recently introduced a new mind-blowing (and I am not saying that facetiously) concept to me. And that is eating for the sake of pleasure.

I come from a family where all food had its own valence. I don’t remember a time when every bite wasn’t weighted with the “dire” consequence of gaining weight. When I was 16, it all came to be too overwhelming. I stopped being able to distinguish “good” foods from “bad” foods, and I just stopped eating at all. Even today, with gastroparesis, my first response to stress is to stop eating.

One of the weirdest, and certainly most ironic, aspect of this disease is how it has shifted my perspective on calories a full 180°. Calories, in any form, are now universally good. After a year and a half, I am still not used to it. Yet eating remains fraught for me. I expend a lot of energy every day doing my best to get as many calories in me as possible without overwhelming my body and rendering me essentially non-functional. And that doesn’t factor in the nausea that comes with ingesting anything (more on that in a moment).

With that background, you can hopefully understand why the prospect of eating for pleasure was so foreign to me. Nevertheless, my nutritionist’s point resonated with me instantly. This disease has taken so much pleasure from my life. I haven’t been able to craft since that one good day. And a formerly very much anticipated delivery of my fiber subscription just made me sad. For me, eating solid food no longer has much purpose for anything but pleasure. So please be clear, solid food is not going away unless my body (please body no, don’t do this) tells me so.

Tomorrow, after I finish my open container of 1.4 formula, I am going to go back to the original formula and see if integrating the Benecalorie goes better.

Today my acupuncturist asked me to describe the nausea I now get from drinking anything. I had explained to him that it felt different than my standard, with me all the time nausea. That is when I realized that just as any good Oregonian would immediately understand the difference between a mist, a drizzle and a sprinkle of rain (at least before climate change started really messing with our seasons), I had come to learn that there is more than one descriptor for nausea.

There is my “always there” nausea. This is the only nausea that ever goes into sleep mode. But it is always there, lurking. All it takes is brushing against my abdomen, lifting my leg at the hip (like to sit) or the pressure from elasticized or clingy clothes to wake it right up. Then it unrolls like a spiral outward, starting from roughly where my stomach sits. Think pinwheel spinner.

The nausea I get after I swallow a sip of liquid, is like a lead ball being dropped into my gut. Immediately following, like a splash, a curtain of nausea rises from about my belly button to my solar plexus.

Then there is the “oops, I ingested too much” nausea. This one can only be triggered by eating solid food. It takes about 20 minutes after I eat something before I can feel how it will sit in my stomach. I have gotten pretty good at guestimating what I can handle. Sometimes, I guess wrong and eat more than my stomach can handle. Then I feel a pressure pushing down from about my solar plexus to my bellybutton. And that nausea flows down, like when you put a lid on on overly full pot.

Vomiting is common with gastroparesis, but fortunately it is a symptom that I have been spared. My personal, not run by any medical professional theory is that I don’t vomit because my stomach muscles are too paralyzed for reverse peristalsis.

I should have written this post yesterday when I was bursting with energy. Yesterday was a Very Good Eating Day. And it was desperately needed after the previous week. But I was too busy doing things like going to a bakery, doing our Rosh Hashanah shopping and in doing so, walking 9/10th of a mile to write anything.

This detail may not seem important now, but it will make sense further down in the post. Acupuncture seems to be helping with my external abdominal sensitivity so that my acupuncturist was able to put needles there for the first time since we started working together. I mention this because things just kept going my way.

This morning? Jackpot. I woke up early (6:30am) and I felt great! So great that by 10am, I had drunk more supplement than I had on either Friday or Saturday of last week! And, although the nausea is creeping in, At 2pm, I have already had more supplement than I have had on any single day since the move!

But wait, there’s more. And this is huge! I picked up my crochet for the first time since our move!!!!!!! Oh, how I have missed fiber crafting. It was absolutely amazing to feel the yarn in my hands again. It was mentally exhausting, but that was mostly me figuring out exactly where I was in the pattern (I stopped in the middle of a repeat, and although I marked it well, my brain still needed to reacclimate). I wasn’t the only happy one this morning. Xena Malka was absolutely thrilled to see the yarn again. First she spent some time attacking the yarn tail, but then she got down to business and made sure than my yarn bag was fully marked as hers.

As promised, some details on my abdominal sensitivity. For reasons that no one can explain, sometimes Gastroparesis makes one’s abdomen very sensitive to touch. My sensitivity is primarily between my belly button and my solar plexus and could be triggered by the lightest touch. I couldn’t wear clingy fabrics because they triggered a very hard to describe, but incredibly unpleasant overwhelming feeling. It was so all encompassing that I couldn’t think or focus because all I could think about was getting the fabric off my skin.

And it wasn’t just fabric. I had to keep my arms away from my torso because just brushing across my abdomen set off that horrible feeling. This summer, after I put all of my oversized clothes in storage, the waistband of pants and skirts started to bother me. Even loose waistbands started triggering the misery. Fortunately, I was still able to tolerate a truly oversized pair of Pac Man pajama bottoms that rely entirely on my hips to stay up.

When I first started acupuncture, the acupuncturist asked me to lay on my stomach. Laying on my stomach is, as you might imagine, was incredibly uncomfortable. So I said nope. Then he wanted to palpate my gut. Another big nope. In fact, I couldn’t even handle the light pressure he needed to put needles in my abdomen. So he started at my extremities with the goal of moving inward.

Now, after just a few weeks of treatments, I was comfortable enough to let him start putting needles in my abdomen. But that is not the only change. Not only am I wearing a clingy tank top under my shirt, but I just had to check that it was still on because I couldn’t tell. And I have gotten my pants and skirts back because I am back to be able to tolerate waistbands. Is this magic all because he could finally put needles in my abdomen? Maybe. Maybe not. But if I have learned anything in the past year and a half, you have to embrace the good days, so for the moment, that is where all of my focus is.

Lastly, here is some more good news. I now have an intake appointment with the doctor who is doing the endoscopic procedure on October 19th. Presumably he will schedule the procedure after that. In the meantime, Kate Farms, the folks who make my formula, have just released a chocolate 1.4 formula, which has more calories than the ones I have been living on. I bought a couple of cases to help ratchet up my nutrition, especially on Bad Days.

Things have not been going great here in the land of paralyzed stomachs. Last Monday I got my Covid and Flu boosters and I got knocked through a loop.

For whatever reasons, I haven’t felt any of the Covid vaccinations’ side effects, besides a sore arm, right away. But 4 or 5 days afterwards, it hits me hard. This was true for both the Moderna and Pfizer, although my Pfizer reactions have been milder than the Moderna ones. I got the Pfizer bivalent booster because that is what the local CVS had on offer.

Things started to go sideways on Thursday when I discovered that nausea does indeed have more levels than I had previously experienced. Fortunately, I had an acupuncture appointment already scheduled for that day. My acupuncturist was also very impressed with the new level of nausea that I had discovered. So much so that he had to add needles twice to my usual nausea management protocol before I could get comfortable. Comfortable being a relative term as I only managed to get a single container (and it’s whopping 325 calories) of formula in along with some crackers that day.

Friday, I was particularly out of it, and once again only managed to get in a single container of supplement. But, for the first time in possibly ever, it felt better to eat than to drink, so I did get some cucumber avocado roll and some seaweed salad in me. It also turned out that I had completely forgotten to take my meds that morning. So there was that.

Turns out that the additional 81 calories that I get from that last few ounces of supplement really do make a huge difference. I kinda felt like the Enterprise when Engineering is filled with smoke and Scotty is busy telling Kirk that he isn’t sure how much more he can get out of the ship. Completely unstable and leaning heavily to one side.

Saturday, I could barely get out of bed. For the first time in years, if ever, I spent the day in bed listening to podcasts and watching TV. Our bed is just a few feet from the couch. It wasn’t the distance that was getting me. it was the having to sit upright that just took too much energy to do.

Occasionally, I am capable of learning and I made damn well sure that I got my full, albeit paltry, allotment of formula yesterday. And today I am feeling duly rewarded for my efforts and am feeling like myself again. However, the bar for what feels like myself has dropped very low in the past year and a half. Nevertheless, it is a welcome feeling.

Fortunately, I am running out of time to do this to myself again. The Benecalorie and its concentrated 330 calories should be arriving in the mail any day now. And things are shuffling along on the tube front. Having determined that the doctor that my GI wants to endoscopically insert my enteric feeding tube accepts our insurance, I am just waiting to hear if that doctor wants to see me first or just just go ahead and schedule the procedure.

In a “yes, I did used to do this for a living” moment, it took two tries, but if you want to get my posts emailed to you, just click on the Subscribe! tab.

Today’s post is primarily to answer my Stepmother-in-Law’s questions about my meager caloric intake. But as she actually knows a hell of a lot on the subject of getting nutrition into recalcitrant bodies, they seemed like useful questions to share with all the other interested parties. As she is the first to note, I am far older than her usual clientele.

Note: she is retired and the article in the Boston Globe does a much better job describing her work. But it is behind a paywall, so instead you get an outdated bio.

1. What are you thinking?!?!?!? You can’t survive on that low a caloric intake?!?!?!

I paraphrased the question, but it is a fair point. My nutritionist agrees and suggested that I try BeneCalorie, a highly concentrated form of calories, “330 calories and 7 g high-quality protein per 1.5 fl oz serving (44 mL).” Which I will do, but…

It is a Nestle formula product and I have significant issues with Nestle as a formula company. But you gotta do what you gotta do. So I will have to satisfy my need to protest their inexcusable corporate behavior with at least reminding people just how awful Nestle was in the 1970s. Or possibly teaching it to people for the first time.

2. Is it possible that I am taking up room by drinking 24oz of electrolytes. Could some of that space be better served by drinking my formula instead?

The answer is no.

I tried two days off my electrolyte drink by taking electrolytes in pill form. That didn’t work nearly as well. And there is a reason for that. Apparently you need to drink the water with the electrolytes, not just sips over the course of the day. And, it turned out that I drank 28oz in watered down Gatorade anyway. Something I rarely drink when I am sipping on my electrolytes all day. So it is basically a wash.

Have questions of your own? Ask away! I have been living this life for a year and a half now and apparently I still have the ability to surprise David about life with Gastroparesis. So, all the more so must be true for anyone who is not David, Dancer, Nommie or Xena Malka. I read all of the comments, even if I don’t post them. And maybe your question will inspire a blog post.

Today is a Not Great Day. Yesterday I had a Pretty Good Day. I had had acupuncture the day before and I was able to eat more solid food than I had in a while, albeit still at the cost of drinking formula, because every decision with GP requires a cost/benefit analysis. Good thing I have a MPA and career experience in budgeting.

A recent literature review of the latest research in GP indicated that acupuncture was the only treatment that improved quality of life and didn’t just mitigate symptoms. This has held up in my experience. Unfortunately, that good day may very well be the reason that I am feeling crappy today. But GP is so unpredictable, who knows.

Today I slept until 1pm after going to bed at about 10:45. But, I did take a shower before bed, and I find showers to be exhausting. Needing a lot of sleep is not unusual for me. Granted, I was a champion sleeper before GP, but now I truly cannot function with less that 14-16 hours of sleep. Of course, it is also possible that I absorbed some cat DNA at some point and have just become part cat.

I used to be a morning person (I actually really miss mornings, but given the chance, there are way more things I would get back before mornings). I now use that little burst of morning energy to scoop kitty litter, empty the dish drain, pour myself 2.75 oz of formula, mix up my electrolyte drink that will take me into the evening to finish and give Xena Malka, the most neglected drama queen cat ever, some scratches out of sight of her brothers.

Then I settle on the couch to gently force the formula down my gullet while I catch up on the world. Most days, that is immediately followed by going back to bed. My body does not do well with the first food of the day. I go into a weird shutdown mode where I literally stagger into bed and can do nothing but lay there with my eyes closed for 20 minutes to an hour. I can’t listen to music, a podcast or an audio book. They are just too overwhelming for my system. Fortunately, I usually have Dancer there to keep me company.

Once I get past all that drama, I get to finally start my day. On a Good Day, that can mean going for a walk and wandering the neighborhood. Although, I can’t walk more than 1/2 mile without triggering up to 3 recovery days afterwards. But, one of the many reasons that I love living in Astoria is that there is much to explore even within my tiny radius.

My new hobby is trolling the neighborhood for bakeries. Just because I can’t eat doesn’t mean that I still don’t get excited by delicious baked goods. I can feel like utter crap and spot an interesting looking restaurant and excitedly point it out to David. What can I say, good food excites me even when I can’t eat it.

On a Not Great Day like today, all I have in me is sitting on the couch while I struggle to get 24oz. of electrolyte solution and as much formula as I can manage into me. Which is harder than you might think. Every sip feels like a lead ball being dropped into my stomach, followed by a wave nausea that I can feel all the way up to the back of my throat. Thankfully, I have a Medical Marijuana prescription, and my current strain, “Remo Chemo” does a pretty good job at keeping the nausea down to a dull roar.

On a Good Day, I can spend my day reading. On a Pretty Good Day, I can write this blog post. On a Bad Day, I can watch decent TV or a movie. On a Really Bad Day, I slip back into the sick days of my youth, watching mindless sitcoms. Think Love, American Style or Charlie’s Angels reruns.

Thus is a day in my life. And all done after only ingesting ~between 375 and 500 calories a day.

David and I both expected some degree of medical blowback after our move, but we both hoped that it would be temporary. Two months later, I am sorry to report that it doesn’t seem to be.

Where I am – At this point I am subsisting almost entirely on sole-source nutrition formula, and not very much of that. I also drink 24oz. of high sodium electrolytes to keep my blood pressure up. Turns out starving oneself can really do a number on blood pressure.

Previously, my NYC GI, Dr. Goldstein and I had discussed the future possibilities of an endoscopic injection of botox that would freeze the valve between my stomach and my small intestine in an open position. This is not a fix that has shown much benefit for people with idiopathic Gastroparesis (GP). The next step after that would be a G-POEM, which would cut a muscle in my stomach that would more permanently keep the valve open.

Today, David and I met with Dr. Goldstein to discuss where to go from here. Given where I am and the fact that the Smart Pill test results indicated that the motility in my small intestine is also slow, he doesn’t feel like a G-POEM is a good match for me.

Instead, we discussed different ways to get more nutrition in to me. I have been subsisting on a starvation diet for a year and a half and my body is simply out of reserves. After discussing the available options, we agreed that a Gastro-Jejunal Tube (G-J tube) inserted endoscopically, makes the most sense for me. A J-G tube will allow formula to go directly into my small intestine, bypassing my stomach entirely. It also gives me a valve to vent my stomach.

My doctor doesn’t do the procedure anymore, but he has a colleague who does and he is going to discuss my case with him. So we don’t have dates or anything yet. And I already have a meeting with my nutritionist to discuss details on how to titrate up my formula intake. If you ramp it up too fast, you end up with cat food on the ceiling*!

It is our collective hope that allowing my body access to the nutrition it needs will allow me to lead a fuller life. However, and this is a Big Thing, none of this does anything for the fatigue, nausea and pain that comes with GP. That will continue to be a very limiting factor. But hopefully, more on that in another post.

*That was a joke with a very limited pool of people who will get it. Back in the day, we had to tube feed Artemis for a short period. We had no clue what we were doing and we went too fast and the food shot right up and hit the ceiling.

I created this blog so that I can keep the important people in my life up to date on my health. If it feels like you are coming in mid-story, that is because you likely are. There is a ton of background and catch-up information I hope to add in the immediate future. However, as I hope to explain in a future post, my functionality can vary hour by hour and day by day.

Basically, I am asking for your patience as I work to get this information resource up to date. Thank you.