Month: March 2023

This week I had an edifying conversation with someone who was on Total Parenteral Nutrition (TPN) for 19 years. TPN is a level up from enteral nutrition (what I do) because it bypasses the digestive system completely through IV feeding. This method has a much higher risk of dangerous complications due to infections and can cause kidney damage. But it can also be a literal lifesaver.

She does not have gastroparesis and has been able to eat normally, for the most part, for over a decade. She offered to answer whatever questions I may have and share her experience with me. I found her experience to be incredibly helpful in understanding the void of information that I have encountered.

Back in the day, when she first got set up with TPN, the supply company provided a team of nurses to support her. She had a number to call if she had any questions and if necessary, a nurse would come to her house to take care of whatever was the issue. If a doctor needed to be involved, the nurses spoke directly with the doctors and implemented whatever the orders were.

In the ensuing 30+ years, those nursing positions were cut and are now virtually gone. A major supplier just laid off almost all of their TPN nursing staff. Enteral feeding is much less dangerous, so it make sense that those positions were cut long ago. My supplier closed their only physical location in NYC during the pandemic.

Not only did those nurses lose their jobs, but their roles simply fell through the cracks. But no one on the educational side of the equation changed their content or training methods. It once made sense to have doctors only focus on what fell squarely within their domains. Like learning to just put in a tube without learning about stoma care. That is no longer the case.

This week someone in my gastroparesis tubie group badly burned her skin because her doctor gave her silver nitrate to burn off her granular tissue (a normal part of having a stoma) and told her to watch YouTube videos to learn how to apply it. After she watched the videos, she remained confused and called her doctor for assistance. Her doctor gave her some more YouTube links. She did her best and now the skin around her stoma is a greyish/black (I know because she shared photos that were really very gross–but she put them in a comment so I actually chose to look at them) and she can’t get in to see her doctor for 3 weeks.

Hopefully, by now you know that this kind of responsibility hot potato is an issue for me too. But, I also now have just the tiniest taste of what used to be now that I have added a stoma nurse to my team. My poor, abused stoma is still healing from… everything. Last week my stoma nurse gave me some instructions that I followed to the letter. This morning I looked at my stoma and it was a bloody mess. I was sure that I had done something horribly wrong. I texted her pictures and a plea for help.

In return, I got an encouraging and helpful text explaining that this is actually what healing looks like. She told me exactly what products to buy and gave me some follow up instructions. I immediately felt calmer and ordered everything I needed from the Behemoth of Seattle.

During our conversation, I told my friend about how those both on TPN and enteral feeding are now left completely on our own. She was, unsurprisingly, appalled. She also immediately understood just how much more traumatizing it is now to become a tubie. She knows exactly how confusing and terrifying adjusting to life as a tubie is. But she was fully supported and didn’t have to expend anywhere near the energy to get her questions answered or the care she needed. She was able to use that energy to raise her kids and go back to work rather than an endless cycle of phone calls without answers.

I haven’t even gotten to the most fundamental take away from our conversation. Perspective. I have been told repeatedly that once I get to stable nutrition, I will get back my “me-ness.” But no one has gotten specific on how long that should take. I know I am not fully back yet, but what I didn’t know whether or not this is where my new normal is. After all, I have had stable nutrition for weeks now. Well, except for those 4 days with no nutrition after the month of hell. But time passes so slowly to me that even though that was only 3 weeks ago, it feels like a year to me. And in that “year” why was I not feeling better?

Having been through a similar 2 years of starvation before getting her TPN, my friend reassured me that what I am experiencing now is just the tiniest taste of what is to come. My body has been malnourished for years. How could it possibly recover from that in a matter of just a couple of months? She reassured me from the other side of this recovery that it will happen. But it will take much, much longer. Maybe even a full year.

I am much too impatient to wait for a year to get back to myself when just a few weeks feels like a year to me. But this one is not up to me. My poor body has been through the ringer and I owe it to myself to give it the time and space it needs to fully heal. The most important thing I need to keep reminding myself is that I will not feel this way forever, even if it feels like it. I will continue to heal, albeit slowly, as time marches on. All I ask is that you all continue to be patient with my recovery.

Despite my occasional pessimism, I am making progress. Our elevator is functioning again so yesterday I ran errands with David. We went to the UPS store and picked up an Rx for me. And I walked .7 miles in the process. It did make me tired, but it was the good kind of tired. The kind of tired that makes me want to continue to slowly build my endurance. Emphasis on the slowly, because I am definitely not up to going back out today. Still not the previous kind of tired that would cost me days of recovery.

I finally got my relatively quiet week. I am at a sustainable level of nutrition, albeit it not my nutritional goal. I am now very slowly ramping up my pump speed so that I can increase the volume of my formula to my nutritional goal, while still giving my small intestine enough rest time between feeds.

David and I used the opportunity of a quiet week to adventure out to the kosher bakery to pick up hamentaschen and enough baked good to last me the month until Passover. I mean that literally, since many days I end up having to split a cookie with David. Except for the bow tie/egg kichels. Those are so nice and light that I can eat an entire one myself. And they are simple enough that they can settle a fussy stomach. They are my wonder cookies.

Our elevator is still out, so that adventure had me going down and up the stairs. And a few days later, I repeated the feat when I went down to get the mail. Not because we were expecting anything interesting. Just because I could.

I am perfectly aware that one good week does not mean that life has stabilized. I am still regularly venting blood and my stoma still bleeds daily. But I also now understand that these things are considered to be normal. But with nutrition comes brain function, and I am just now beginning to struggle with the questions that I have been unable to answer for the past 2 years.

In an article about a group of sociologists from Columbia analyzing an oral history of Covid, The New York Times defines ontological insecurity as “[the limbo that makes it] impossible to break out of that malaise, to project oneself into a future that [keeps] evaporating ahead of you.” This is a perfect descriptor of where David and I continue to dwell. We are still hesitant to make any commitments more than a day in advance because the ground doesn’t yet feel stable beneath our feet.

But time is relentless and Passover is coming whether we want it to or not. And that is forcing an issue that I am not quite sure that I am up to facing quite yet. What does it mean to navigate the world as a non-eater? More relevantly to this post, how do I do Judaism as a non-eater? As I have said before, I am not big of davening (prayer). Some of that is simply because I am my father’s daughter, and study is our preferred connection to Judaism. But a not insignificant issue is my baggage from having grown up sitting behind a mechitza (a divider separating the men from women during prayer). But that is trauma for another time.

Judaism is really big on food. And everything from holidays to life cycle celebrations to mourning each come with their own designated meal. Food prep has always been my go-to on-ramp to Judaism. It has been integral to how I celebrate holidays. The beginning of the month of Elul, a full month before Rosh Hashanah, is when I traditionally start thinking about what to make for Rosh Hashanah and the meal before Yom Kippur. I have more than a decade of meal ideas and their associated shopping lists on my phone.

Passover is a particularly difficult time to figure out how to navigate the world as a Jewish non-eater. Most food traditionally eaten on holiday are simply customs. But on Passover, eating Matzah and maror (the bitter herb) are mandated. The good news is that the required amounts are small enough that even I can eat them. The problem comes with the meal that is an integral part of the Passover seder.

I am too early in my journey as a non-eater to sit through a long, multi-course meal, even one that happens during a seder. Just thinking about it is overwhelming and upsetting. It immediately brings all that Gastroparesis has taken away from me to the forefront of my mind. Just writing this paragraph has me crying. How I am supposed to make it through a whole meal when the grief is still this fresh and raw? I know there is so much more to unpack about being a non-eater in a world where food is so central a focus. And I haven’t even begun that process.

I have polled my fellow tubies on how they navigate formal festive meals. The response was mixed, but their responses can be boiled down to it not being easy. They all mention the double punch of the psychological grief and loss and the physiological response of nausea and discomfort that comes with eating.

David and I are still deeply in a state of ontological insecurity and Passover feels impossibly far away. We are most certainly not yet in a place to make plans. But I am fairly confident that we are going to maintain what has become our Covid tradition of having our seder at home with just us and our cats and connecting virtually to our friends and family. I just don’t think we are ready for anything else yet.