Yesterday was my long awaited appointment with my GI at Stony Brook. It was a 5 hour exhausting adventure and the only stop we made for was gas. But it was well worth the trip.
The doctor was an hour late in seeing us, but that was easy to forgive as soon as she sat down in the exam room with her. There was no sense of time pressure, not even when we were interrupted three times by nurses. Her head was clearly entirely in the room with us.
She started by noting that she had seen my most recent labwork and that I had seen her friend at NYU Langone. Friend was her term. Not colleague. Her friend is the GI known around here as the traumatic doctor. At first, I sidestepped that story by simply saying yes, and starting with my “I need nutrition now” pitch.
That didn’t go well. She said that my labs were unremarkable and that by all objective indicators, I was ok where I am now. She further explained that what I needed was a motility specialist with an understanding of nutrition, and that [the traumatic doctor] was a much better match for me than she was. She has some experience with PEG tubes like mine, but she is not a motility specialist.
My stomach clenching uncomfortably, I went on to explain how my visit to her colleague had been very traumatizing. And that my therapist is opposed to me going back to see her. I told her that I do have an appointment for the 25th, but that she is clearly not a good match for me. FWIW, the Stony Brook GI did comment that she remembered that I had an eating disorder. I haven’t seen this doc in over a year. Kudos to her memory.
Anyway, David stepped in around this point and explained that while we knew that she might not be the most appropriate GI for me, we were there because she was the last GI who had actually listened to me. She got teary, I got teary, it was a minute or so full of emotion. And then she sat down to work.
True to form, she listened like no GI has listened to me since this whole saga began.
At first, she wondered aloud if it is an issue of intestinal spasms. She suggested trying an anti-spasmotic, like dicycloamine to see if that helped. But then she equivocated because it also slows down motility, and that is the last thing she wants for me.
But then she picked up on something else. The pain is triggered right when I eat, drink or flush. Way too soon for anything to be reaching that far down. She asked if I could trigger the pain by thinking about or smelling food. I said yes.
Apparently there is a neurobiological process where your whole gut readies itself when you get ready to ingest something. That is what I am feeling. Only for me, my brain is misinterpreting the motility in my lower gut as pain. She is the second doctor who has suggested that gut motility can be misinterpreted by the brain as pain.
She suggested that a tricyclic antidepressant can keep the brain from misinterpreting gut motility as pain. It is part of the whole mind-gut connection that we are just beginning to barely understand. That could also potentially explain the timing of this whole crisis as well. It started shortly after I had weaned myself off my antidepressants, a process that took literally years after being on them for decades.
Ironically, one of the reasons I pushed to fully wean myself off my meds was because antidepressants slow motility. But that may have come back to bite me on the ass. And painful gut motility was not one of the withdrawal side effects that I was carefully looking out for.
She wants to talk with my psych nurse practitioner and her own GI colleague at Stony Brook, who is a motility specialist before she takes next steps. And said it would take her a week or two before she had any news. But that is ok. We have a good, sound hypothesis that explains so much. As David says, we now have hope. And waiting is easier when there is hope.
If the antidepressant can distract my brain from my lower gut motility, I should be able to start increasing my feed again. It will still take a while to climb back up to my previous feed rate. My jejunum has made it abundantly clear that it will only tolerate small increases in speed. But it would be progress towards stable nutrition and really that is all I have been asking for all along.
A note on my depression before any of you freak out. I have had depression consistently since childhood. It runs in my father’s family. Mine is medication resistant depression. I have been on various cocktails of antidepressants for a couple of decades now, and none of them did much more than push a corner of my depression aside, at best. Plus bonus side effects, like weight gain.
Almost 4 years ago now, my psych nurse practitioner (the same one who supervised me weaning off my meds) suggested that I try transcranial magnetic stimulation (TMS), a non-invasive series of magnetic stimulation with no side effects. It was life changing. It gave me my very first taste of what life without depression feels like. It is a repeatable treatment. I have had two cycles and should depression become a problem again, I will do it again.
I mention all this to reassure you all that there is a reason I weaned myself off off my depressions meds, that it was done under medical supervision and it was initiated only after the TMS had resolved my depression.
I am definitely dealing with some depressive symptoms right now. But I am not depressed. I know this because my therapist is on high alert and watching me very closely. It is also why she is so opposed to me continuing to work with the traumatic GI, despite the fact that on paper, she is the GI that I absolutely need.
This afternoon, David, Mary and I have a strategy session scheduled to figure out how to break the news that I have now seen two additional GIs to my non-communicative GI while also getting him to listen to where I am after the two rounds of Xifaxan.
Also, I want my most recent test results. He is the only one who has them because the lab belongs to Northwell Medical System which won’t let me see my test results in their portal without having a Northwell doctor. I put Mary’s name and fax number on the order, but they still haven’t sent her the results. The only reason my doctor has them is because Mary called the office on Friday and made the nurse download the results off the Northwell portal and send them directly to the doctor.
Unfortunately, we didn’t get to see my BFF after all. She is sick (not Covid) and so we didn’t get together. Given how exhausting yesterday already was, it is probably a good thing in the long run that we were able to head straight home. But good thing or not, I am sad that I didn’t get to see her.