I just looked back at my previous post about two good doctor’s appointments and laughed at my naiveté. Because the universe seems to be opposed to me having nice things.
That great sounding neuro-gastroenterologist who explicitly agreed to become my motility doctor? Well, that story got a bit strange. She referred me to her PA for a nutritional consultation because she said her PA was also a dietician. She even wrote that in her note to her staff to schedule an appointment with her PA for me.
I was really looking forward to my appointment with her PA. Based on what the GI said, she sounded like the perfect person to help me. We went into the city for the appointment because I like to meet my practitioners at least once. In the 2+ years we have lived here, I have only gone into the city once before, because it is a 45 minute trip that is quite difficult for me.
When the PA walks in, we start excitedly telling her about our conversation with her supervising GI. How the GI had agreed to take me on as a patient and how she sent us to the PA for nutritional counseling to help get me back on enteral (tube into my gut, as opposed to IV) feeding.
I know I only imagined it, but I could have sworn that I heard a screeching sound as the PA stopped us in our tracks to correct some “assumptions.” She had not heard anything from the doctor about taking me on as a patient. And she has not kept up her dietician certification in years. She said that she would check in with the doctor and get back to me.
Since that appointment, I have found 3 notes in my patient portal from administrative staff trying to get ahold of the doctor to confirm whether or not to schedule a follow up appointment for me. The most recent one, dated June 1st, says to contact the patient. Presumably to tell me that they are not able to schedule a follow up appointment for me. At this point, that would almost be a relief. And since they were so kind as to document it for me, once I do get the official turn down, I can go back to my insurance company and tell them that the in network doctor will not take me on, so they need to go back to covering my out of network doctors at Stanford at in network rates, like they have for the past two years.
While all this waiting was happening, I had a couple of genuinely good weeks. The kind of weeks that I haven’t had in a very long time. I went to a fiber fair, I wandered around the community yard sale (these happened on two separate weekends) and got to hang out with a friend from Portland. It was amazing.
During that time, I was restarting trickle enteral feeds with watered down formula for 4 hours a day. First, when I was running it at 2ml an hour, it was ok. And after a couple of days, I increased it by 0.5ml an hour. And it got harder and more painful each day. I lost almost all of my quality of life gains. I could no longer read or listen to audiobooks or spin or craft. I could just sit. I hit a wall at 6ml/hour. I was in so much pain that I couldn’t stop crying. I had to pull back to 5ml/hour just to stop sobbing.
Yes, I was torturing myself for a grand total of 21ml of watered down formula a day.
Last week, I happened to have one of those weeks where medical appointments, each scheduled individually months prior, happen to coalesce into a very busy medical week. First it was an appointment with my Stanford motility GI’s PA. She was largely unhelpful and just made annoyingly sympathetic sounds and faces, but didn’t let me off the hook on the trickle feeds. She did suggest getting an alcohol-free ginger tincture so I could get ginger in me when I am too nauseated to chew or sip anything, which has been the case recently. So I will give her credit for that. But apparently the appointment ran long and she gave no indication so we were charged for an additional 15 minutes. It didn’t do anything to improve my assessment of her.
The next day, it was a very early morning as I had my G-J tube and PICC line swapped out. The G-J tube was just routine. The PICC line was added on because while it was still infusing fine, it had gotten to be very inconsistent about blood return. We could probably, maybe, gotten by with another round of the PICC line drano (AKA CathFlo), but the line had been in for 9 months and I was already going to be on the Interventional Radiology table for the G-J tube swap, so why not?
The G-J tube swap was completely routine. The PICC line? Not so much. This was my second PICC line placed using the same track and the vein had a lot of stenosis (constrictions), making it difficult to get the new line in. The doctor helpfully suggested that what I really needed was a tunneled central catheter, which would go into a much larger vein. But that requires sedation, so it was not an easy pivot. Instead, he used 3 cardiac balloons to open up the vein enough to get the new tube most of the way in. It is now 2cm lower, which means the extensions are now much closer to where my elbow bends and it is taking a bit to get used to. But otherwise, is working absolutely fine. With all sorts of blood return.
The following day was another early one, as I finally had my appointment with the general GI that prescribed me the bile salts in the hospital, back in January, thereby alleviating enough pain for me to come home. She had gone on leave the day after I saw her in the hospital, until June 1st. Her role on my medical team is to be the GI that I can see for non-motility related issues. And since she is busy, but not crazy over-scheduled like my motility GI, she is a bit more available to answer questions that are above a PA’s head.
And the timing on this appointment was perfect, because we had plenty of questions for her. Including my desperate plea to be let off the hook with the trickle feeds. She explained what we already knew, but struggle to deal with. That the longer I go not using my digestive system (and by that, everyone seems to mean my small intestines) the more difficult it will be to restart.
The last appointment this week was with my dietitian. She was the one who is really supervising my trickle feeds. I told her about my appointments with GIs and PAs and about how much I was struggling. That the pain of the trickle feeds was squeezing out what little pleasure in life remains to me and I wasn’t even getting anything resembling useful nutrition or hydration in the process. Nor was I able to progress beyond 5ml/hour. She basically asked me what I wanted her to say. I told her that I needed a break. I would go back to trying, but I needed a little bit of time to just get back to where I could read and maybe craft just a little bit.
Before I give you her response, there is one more thing I need to add. You may or may not recall, but months ago I had found a group that offered gut directed hypnotherapy services. I was in the midst of my TMS treatments and I just didn’t have the bandwidth to do both at the same time. So I put that treatment option aside until I was ready, knowing that at least at that time, there was probably a 3-4 week wait before someone would be available to work with me. And it might take me a bit longer because my needs were fairly specialized, so I would need a clinician who was fairly experienced and comfortable really drafting their own scripts.
Two weeks ago I started working with a clinician that I really like. At the outset, I was told that the first two to three sessions would be getting to know each other before the real work would begin. But I really clicked with my clinician and since I have used gut directed hypnotherapy before, we were able to get started with hypnotherapy this past week. I am feeling very optimistic that this path will help me tolerate the motility drugs that will get my sluggish small intestine up and running enough to at least reduce the painful bile reflux and allow me to tolerate enteral tube feeds again. But gut directed hypnotherapy can take 3-4 months to be fully effective, so only time will tell.
Back to my dietician’s response. After I have taken a break and am feeling up for trying again, I am going to go back to just running water through my enteral tube for 4-6 hours a day. But I am not to go past a tolerable pain level. So if that means that I am stuck at 2ml/hour for weeks, that is fine. And once I hit 20ml/hour, then I can start adding either an elemental formula (everything is completely broken down, all my intestines need to do it move and absorb, which may still be too much to ask of my intestines, but we will see). This is an answer I can live with.
I have spent the weekend recovering, but the fact that I was able to write this blog post is proof that I am already feeling a bit better. Not better enough to resume running anything through my J tube. Not yet.