Eva's Gastroparedic Adventure

I happened to have my computer out to pay bills (a rarity these days, since I can usually just do that on my iPad) so I decided to do a quick update too.

My tube change and botox shot are now scheduled for this coming Thursday. I am very much looking forward to this, despite our 5:30am arrival time because my tube is most definitely due for a change. And if all goes well, I should be feeling better pretty quickly.

My hope is that the botox helps make drinking a little more comfortable. It has been very difficult keeping myself adequately hydrated when every sip feels like a lead balloon being dropped in my gut, followed by a wave of nausea. But the botox should help my stomach empty more quickly and I am hoping that includes liquids.

This is already a busy week of misc. medical appointments including an appointment with the anesthesiologist and getting our calcium score tests because aging is fun.

I also have my appointment at the Stanford pain clinic scheduled for August. I am meeting with a GI specialist who should be up to date on the latest gut brain research. In other words, exactly the type of specialist that I was looking for to help me with the issue of my brain misinterpreting gut motility as pain.

After months of waiting (Mary got this appointment for me before we moved to California, back in March), I finally got to see my new GI yesterday. She is a part of Stanford’s Motility Center, which means I am no longer seeing a lone specialist. This makes a significant difference for the patient experience.

The most important distinction, for me, is that she sees a disproportionate number of idiopathic patients. If you recall, for most patients with gastroparesis, it is a complication of diabetes. The vast majority of the research on gastroparesis is therefore on patients with diabetes. The data is pretty clear that the few interventions offered for gastroparesis don’t have any significant impact on idiopathic patients like me.

While there are no new interventions that my new doctor can offer, she was able to offer some more insight into the few available options. For example, Every one of the specialists I have seen has dismissed botoxing the pyloris muscle in my stomach. This is the muscle that releases food from your stomach into your small intestine.

Gastroparesis is measured by the time it takes the stomach to empty of food. Paralyzing the pyloris muscle can speed up the time it takes for the stomach to empty. However, the data shows that this intervention is primarily effective in patients with diabetes and has a pretty lousy success rate for patients with idiopathic gastroparesis. That combined with the severity of my issue (even if we cut my current transit time of 21.5 hours in half, I still have severe gastroparesis because the normal transit time of food in the stomach is 4 hours).

I was a little surprised when my new doctor suggested trying botox, but she said that she has seen improvement in symptoms of nausea in about 50% of her idiopathic patients. That was news to me.

Even better, she was able to set me up so I can just get the botox injection when I get my tube swapped out, which is something that we are now in the process of scheduling. Hopefully, it will happen soon (my new doctor marked the scheduling as urgent) because my tube is really ready to be swapped.

While I was there, we also did a little med tweaking because one of my nausea meds was no longer working as well as it had been.

My doctor is that is clear about how over-scheduled she is, so she has a nurse practitioner that she works with hand in hand. The NP came to my first appointment so that she is completely up to speed. I will alternate seeing the doctor and the NP every 3 months. My doctor also has a nurse on her team who handles things like formula orders. For the first time since getting sick, I feel like I am in stable, competent care.

The UTI has been resolved and I feel somewhat better, but not as better as I would like. Normally, after one heals from an infection, there is a wonderful feeling of general healthfulness. A feeling of truly being better. It often comes with a rush of mojo so you feel like you can take on the world. With chronic illness, not so much.

I felt when the antibiotics kicked in. And I have felt the infection slowly resolve. But any boost of energy was lost in me just trying to catch up the most basics. It is frustrating beyond belief. It is also an opportunity for me to practice my radical acceptance.

It has not all been bad. A bit confusing perhaps, but not bad. Inexplicably, I have been finishing my feed without increasing the speed on my pump. Some days I finish early. Today I finished right on time. I have no idea what is going on. But I am getting full nutrition, so I am not complaining.

I am complaining (a bit) about some ongoing discomfort with my tube. But it is not so bad that I don’t think I can hold on until my appointment with the motility doctor on July 10th. The motility doctor will most likely NOT be the doctor who can help me with my tube, but I am hoping that the benefit of a motility center is that there is at least one doctor there who can manage my tube. And hopefully they can do something about it quickish, because I am now in the window when my tube should be replaced (four to six months, with six months being in very early August).

I am not spinning, but I am beginning to read easy novels again. Actually, I am juggling a YA science fiction book (which is not my usual genre, but it is the first novel of someone I have subscribed to on substack for a couple of years and I am curious about his fiction) and an autobiography of a cartoonist returning from WWII. David encountered it while unpacking and passed it on to me. Both are slow going, but going, which is about all that matters to me right now.

I am increasingly frustrated with Facebook’s algorithm and how so many more people saw the post that I had moved to Woodacre and no one saw the link to my blog. Basically, I am just about completely fed up with Facebook, but I cannot leave because that is where the critical mass of my people are. Anyway, if you want to keep up on my adventures, you can always subscribe on this page and you will get the posts in your email.

One last thing, because I want to end this post on an up-note. Our move to California has been so good for me. It has been great to be able to get together with friends and family from near–and in some cases from far-ish (east coast)–in our backyard. Completely maskless and in our own little bit of forest. definitely an upgrade.

It has been way too long since I last wrote a post. Much longer than I had intended. But I am still learning to navigate the world of chronic illness, so some things that may seem obvious to others somehow turned out to be news to me. For example, when you have a chronic illness, UTIs are a really big deal.

When I overexert myself, whether that be physical or mental, my gastroparesis symptoms flare up. Other times, when everything is calm and quiet and I am just hanging around, minding my own business, my gastroparesis symptoms flare up. My point is that my disease is cyclical and this is going to be an ongoing issue for me.

My feed is so close to 100% of my goal (I am at 50mph right now) that it no longer matters if I have a bad day, or even a stretch of bad days, and can’t eat. But not drinking is another matter.

I struggle with my hydration on the best of days. I can’t get enough water through my feed or my flushes, so I need to get another 20oz (ideally) orally. The problem is that I often find drinking to be incredibly uncomfortable. It either nauseates me, hurts me, or most often, both.

I was recently in the middle of a gastroparesis flare when the weather turned hot. Thanks to my dysautonomia, I struggle to regulate my body temperature. Fortunately, I had already been alerted to the fact that this makes me incredibly vulnerable to overheating and/or dehydrating in the heat. Yes, I am copping to having known to be on the alert for dehydration when the weather turned hot. But I was also feeling like crap and drinking was truly and utterly unappealing.

I already fed you the punchline of this story, I ended up with a UTI. One that hit me like a ton of bricks. So much so that I allowed myself to ignore it when I first felt the first inkling of an issue. I kept hoping that I was just imagining symptoms and that it would go away on its own. Spoiler alert. It did not go away on its own.

Fortunately, we have a good primary care doctor who gave me magic antibiotics. She warned us that they would worked slowly but that they also only target the bladder. I was more than happy to wait a bit for relief if it meant not having to try to rebuild a gut biome without eating.

As promised, the antibiotics took their own, sweet time before I started feeling better. I started the antibiotics on Wednesday night. I am writing this on Sunday and the today is the first day that I feel like my usual crappy-feeling self again.

David made me a lightly sweetened ginger decoction that I have been adding to unsweetened cranberry juice to help offset the nausea that comes with drinking. And thus, I have been able to both address any lingering issues of dehydration and recover from my UTI. But there is a very important take home lesson from this experience.

For me, hydration is as important to my health as taking my medication. The alternative for me is a trip to the ER for IV hydration. While I am incredibly grateful that this is available as a fallback, it is something that I would like to avoid if it is at all under my control.

It has been almost exactly a year since my hospitalization and my precipitous drop in nutrition. My nutrition is now approaching where I was at the height of my nutritional input.

I am feeling the consistent and increasing nutrition physically. I have a little more energy, enough to walk our steep circle a second day in a row. I could only walk a quarter of the circle (it was the 50ft incline and not that distance that were the challenge for me) when we first moved here at the end of March. I won’t really know the impact of my extra activity on my future energy until I see how I feel tomorrow. From today’s perspective, I thought it went really well.

I am also feeling my brain function continuing to return, which remains a mixed blessing. Yes, I have the brain capacity to write this blog post, and hopefully more frequent updates in the future. But, it has unleashed a body dysmorphia tornado that has been wreaking havoc in my mind. I would rate it a 9+ on a scale of 1-10 with 10 being the worst imaginable psychic pain I can imagine. Although it kind of frightens me to think of anything worse than this. I know that may sound alarming, but I assure you that my therapist is on it. I am also starting somatic therapy to help me manage my physical pain. That can only help, right?

In other news, David continues to earn his Rockstar Status badge for being an unpacking demon. For the record, we have too much crap. We intend to do a very hard sort once we have everything unpacked. We have had 2/3 of our stuff in storage for almost 2 years and it has been a good opportunity to reacquaint ourselves with said stuff. The first sort is well underway as David has already designated a rapidly filling staging area for the stuff that didn’t even make the first cut.

Happy Passover to all who celebrate or take interest in such things. David and I had a lovely seder together and it was the best since The Before Times. We thought about trying to host a seder since we now have the outdoor space, but we do not have the furniture, the dishes are only partially unpacked (not for lack of effort–David has been an unpacking machine) and honestly, neither of us had the spoons to do anything big this year. But next year, watch out!

In other news, I am really liking our new primary care doctor. She is a concierge doc, so she doesn’t come cheap, but she gets it done. I was having some stoma pain (my stoma is the hole where the feeding tube goes into my stomach) and I asked her for some topical lidocaine ointment. She not only gave me a script, but she found me an ostomy clinic where nurses deal with nothing but stomas of all kinds.

I had my appointment at the ostomy clinic this week. The nurses were wonderful (I got two for the entire appointment) and they were excited to get to work with a relatively healthy patient. We had a good conversation about stoma care, they introduced me to some local resources (including an independent pharmacy) and they sent me on my way with a goodie bag.

Next week, David and I both have our extensive, two hour physicals with the new doctor. She has already ordered extensive lab work and David and I dutifully offered up our veins. I am not expecting any surprises, but it will be nice to talk to a doctor who is focusing on more than just my broken digestive tract.

I am continuing to increase my feed and I am now at 48ml per hour. Last year at this time I was at 54ml hour. I was able to read silly novels and knit. I am not there yet, but I am definitely seeing an increase in my energy. Even David commented that I turned a corner in the past week. It has been a long time coming. Next week it will have been a year since my hospitalization and the precipitous drop in my feed down to 25ml per hour. That is a year that I am glad to have left behind me.

It has been waaaay too long since I posted last, but I have been flat out. I get small bursts of energy that I have been expending on being sociable or helping David with the unpacking and then collapsing in exhaustion again.

Nutritionally-speaking, I was stuck on 39ml of formula an hour because we had made the decision to pause the formula increases when the move started. But this is no ordinary move. This has been the extended version. I hadn’t increased my feed in over a month.

Fast forward to last week, when David and I discussed it and I decided that since my current state seems to be some kind of new status quo for me, there was no reason not to resume increasing my feed. I am on 43ml hour as I type this, and it seems to be working since I found the energy to write this post after sorting through a laundry basket full of unmatched socks, trying on some clothes and sorting through a mound of clean t-shirts and deciding what goes out of rotation, what comes in to rotation and the harshest category of all: which get put on the donation pile (bwahahahah).

Assuming today continues apace, then tomorrow morning I will increase to 44ml hour for the day. It is still taking me several days to acclimate to a single milliliter per hour increase. First day, the increase is just from when I get up at around 7:30am to flush* until my last flush shortly before bed time, at around 9:30 or 10. The second day I let the increase run for the full 20 hours of my feed. The third day is the same as the second day. It is a recovery day before the next assault on my extremely hypersensitive jejunum. Then day one again.

I have so much more that I would like to write about our cross-country move. But I doubt that I will have the energy to maintain both forwards and backwards momentum. I intend to keep my eyes looking forward into what is ahead of us. I also truly hope to have the energy to write posts more frequently now that we are actively in the settling in phase of the move.

* My time is defined by flushes. I have to flush 5 times a day. Those flushes are not evenly spaced out. None of those flushes can take place between 3pm and 7pm. Those are the hours that I am disconnected from my feed and my jejunum gets to completely rest. It is not all bad. Flushes give structure to what are usually completely unstructured days.

While David is on his long anticipated cross country trip (he started dreaming of this trip long before we decided to move back west), the cats and I are at home. We are watching his adventure unfold with the rest of you.

Fortunately, life at home is not much of an adventure. There are regular lectures from our Nommie and Xena Malka is being a little extra clingy. On the other hand, she has an itchy ear and is getting ear drops twice a day, so she has more than one reason to be a bit out of sorts.

I am doing better than I had feared/anticipated. I haven’t ventured out of the apartment yet, but I did have an excursion planned for today that got rescheduled for Thursday. I will also need to go visit our friendly pharmacist in the next day or two to pick up a refill. So I have adequate motivation to get out of the apartment. It does absolutely blow my mind that bu the end of next week, I will be living in California.

But first, some absolute road warrior machinations by David. He and our car are scheduled to arrive in Marin in time to meet up with our new landlord, do a walkthrough of the house and get the keys on March 1st. That is a Friday, so he is staying the weekend to get some things set and he will need Monday to do things like get our free P.O. Box because we are going so rural that we won’t even get regular mail deliveries (UPS and Fed Ex both come to the house).

My job in David’s absence is to get things like utilities and the internet set up so we can live like civilized people. We already had to change our phone provider from Ting (whom we had for over a decade and loved, but their wireless calling is tied to a mobile network and we don’t have cell service at the house either) which literally was a multi-day process, and not because of anything technical. Today I dealt with getting our propane deliveries set up. I am dreading PGE., so I am pushing that one off for last.

David flies home on the 5th to help me and the cats get ready for us all to fly out on March 8th. The cats have been to the vet, have had their rabies shots (and have their requisite certificates) and we have gabapentin for both of them to make the trauma of a cross country flight more bearable. And an anti-emetic for our Xena Malka who gets motion sick.

Once we get settled, David heads back to the airport to meet the movers on Astoria on March 15th. After a few extra days for our cleaner to come do a deep clean, returning keys, etc., he finally flies back to Marin where we can start settling in. Well, as much settling in as we can do until our crap–including all of the crap that has been in storage for almost two years–arrives at some date to be magically determined by the mover.

The thing about chronic pain is that when it goes away, everything feels so much lighter.

When I am in pain, it feels like weights have been attached to my body. It is just so hard to move. Today is my first (relatively) pain free day in a month and I feel like I have suddenly been set free. I can do and be again. At least as much as my current malnourished state allows.

How do I know that it has been a month? Funny story, that*.

You know how generic drugs are supposed to be bio-identical and work as well as each other and the name brand? Well, that’s not quite the case. In fact, it has been fairly well documented that some generics are just different, despite looking bio-identical to the generics that work. But it hasn’t gotten much press. I have seen maybe two articles ever. And one goes back so far that I read it while we were still living in Portland.

A bit more than a month ago, the pharmacy sourced the duloxetine I take to convince my confused brain that gut motility does not equal pain, from a different manufacturer.

Maybe it was a bit cheaper, maybe it was just what was available, who knows. but it happens all of the time at most pharmacies. No ill intent. Just how the generic wholesale pharmaceutical market works (as I understand it from those two articles I mentioned. I am in no way an expert on such things).

Anyway, over this past month, I have certainly noticed that the pain that the duloxetine had been managing was back. So much so that I am in conversations with my doctors about weaning me off the duloxetine and trying a new antidepressant. It has been a very bad month, pain-wise.

A couple of days ago, I refilled my duloxetine prescription and I immediately noticed that it was from a previous manufacturer. A previous manufacturer whose product had worked for me. So I was optimistic when I took the first dose of the refill last night. And today I feel amazing!

I am completely overdoing it today, and I know it. But I couldn’t help myself. It has just been so long since I felt this pain-free. I know that I will pay for it tomorrow, but I have no regrets. I am thinking about it as the very occasional decision one makes in middle age to screw your bedtime and hang out with your friends until late. You know you will be paying for it for the next few days, but are enjoying yourself too much to care about future you. And even future you agrees that it was well worth the cost**.

I have to give full credit to my friend Jemiah for aiding in the solving of this mystery. She recently went through the exact same issue and it definitely helped the penny drop.

*We have been rewatching Lucifer and I seem to have picked up some of his verbal quirks.

**Clearly, I am getting excited at the prospect of getting to hang out with friends again once we move!

Want to know what life with a chronic illness is like? We have big news. Like huge. But instead of excitedly announcing it to the world, I am spending my days in bed laying stiff as a board, because curling up in a fetal position, no matter how much I desperately want to, is just too painful.

To make matters worse, my presumably more communicative GI didn’t respond to calls over two days. he did respond over the portal (which I didn’t use initially because it says it is only for non-urgent issues and can take 2 days to respond). He told me what to do, but that was all. There is no indication that he called in the necessary Rx changes and he has failed to respond to my follow-up question for 24 hours and counting. I am considering myself ghosted.

This is where the big news comes in. We are moving to Woodacre, California in March. It is in west Marin County and is the most rural that I have ever lived. There is no mail delivery. We have to get a P.O. Box. Even the goat farm had mail delivery.

But it is not as isolated as it sounds. It is 45 minutes from San Francisco where there are world class medical facilities. It is also, where we can socialize outdoors 3+ seasons of the year. And the house we are renting has beautiful decks and a bathroom that we can isolate from the rest of the house. Guests can use it unmasked without putting anyone’s health at risk. Most importantly, there are lots of friends and family nearby to socialize with, those 3+ seasons of the year.

My point? Maybe my new doctors will be more responsive. I already have one doctor in place. He is a Naturopath with extensive experience with gastroparesis. He is located in Oregon, but he is licensed in California so we can do televisits. Worst case scenario? I have to make a trip up to Portland to see him. I am sure my friends will be crushed.