Month: July 2024

The tube swap went very well, and it is very nice to have a clear, unclogged, cooperative tube once again. Jury is still out on the botox procedure. The goal is that by freezing my pyloris muscle open, my stomach would empty faster and that would alleviate my nausea. The doctor who performed the procedure said that my pyloris was already pretty open, so he wasn’t sure how well the intervention would work. My body is still working through the sleep deprivation, the anesthesia and the adrenaline of the past few days, so I really can’t tell anything yet.

The real test is going to come this week when I fly East for 10 a 10 day gathering of David’s extended family. Travel is incredibly hard on me. I find driving to be the worst, as my incredibly sensitive abdomen absorbs each bump and curve I feel a wave of discomfort and nausea. Comparatively, flying is nice and smooth. But, navigating the airport and TSA stress is simply exhausting.

Accordingly, if the botox can tamp down my nausea through a trip that will involve hours of driving on both ends, with a long flight in the middle, I will call it an absolute success. Only time will tell.

Travel is not what is occupying my mind these days. I am reserving my anxiety for what the company that supplies my formula and feeding supplies is not telling me. For almost a year now, they have been citing supply issues and periodically sending me feed bags for a different pump. They are theoretically fully compatible with my pump, but in my experience, they have been associated with some anomalous pump behavior.

This month the supply company sent me 500ml bags instead of my usual 1.000ml bag. These bags are for my pump, but require that I add formula in stages, rather than setting up a feed all at once. Not a huge deal on its own. Just a bother and another thing to remember to do throughout my day. A day that is already bound my medication times, flushing my tube 5 times a day and now an extension of my feed process. All of these little details and requirements, compounded with my varying levels of pain and nausea do really make it hard to live one’s life.

I called the supply company about sending me the wrong bags and they gave me the same supply chain issue line. I did a little research in my tubie group and it seems that the company that makes my pump is ceasing all support for the pump in September 2024.

The company that makes my pump does have a brand new pump that is replacing the model I have now. Some patients have received them. Just so far, no one who has the same supply company that I have. The supply company that is clearly divesting itself of all of their old stock for my current pump. It is their lack of communication that is really concerning me. It makes me wonder whether they are planning on getting out of the enteral feeding business altogether an \d just dumping their patients rather than making a capital investment in new pumps.

This company was generally well staffed and supportive when I first got my tube in November of 2022. Since then they have made massive cuts to their enteral feeding department. I no longer have a dietician than tracks me. My only communication with them is now a single monthly email asking if I am ready for my supplies to be sent. I don’t even get a confirmation after I reply. Unless you count the automated shipping information email which usually comes after my supplies arrive.

This is truly a terrifying time to be so dependent on our fragmented medical system. I see no profit motive in feeding folks like me. Given the capitalism on overdrive state of the world, I just can’t help but wonder how long it will be before I get fully dropped between the cracks.

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.