This Medical Life

It has been a very busy couple of weeks and I have lots of updates. I have been feeling a bit better lately without the Small Intestinal Bacterial Overgrowth (SIBO) that had been making me extra miserable for months. As we seem to find ourselves not in Crisis Mode for the first time in a long time (p’tuy, p’tuy, p’tuy) I am trying to get caught up on some non-gastroparesis medical issues and take care of some routine medical visits like my annual mammogram and maybe get some new glasses.

First off, I got to see my GI last week. I only get to see her once every 6 months, so this is a big deal. We discussed how the Motegrity is working to increase my motility, unfortunately, that also means that it is making me miserable. For those in the back, my brain misinterprets motility as pain. Plus, while it increased my motility, it did nothing to relieve the vast quantity of air my stomach is producing. Nor did it help me retain the fluids I drink. They still all go into the vent bag that is attached to me 24/7. These were all things that we were hoping the Motegrity would help with. She suggested that I try halving the pill. If that doesn’t work, try quarters.

She also gave me an Rx for Xifaxan, so that the next time I get SIBO, I already have the meds in the house. This time, I was able to advise her on how to write the Rx so that I would get the meds quickly. It worked so well, that they have already arrived from India.

Lastly, she also seemed to agree that the GI Nurse Practitioner that I had assigned was useless, because she switched me to her PA who agreed with my SIBO diagnosis and got me treatment. This is a biggish deal, because I had been told that once I was assigned one of my GI’s assistants, I was to stick with that person. And the PA restated that policy when I was accidentally assigned an appointment with her.

If you recall from my last update, my J tube was looking a bit icky, with bits of formula stuck to the inside. It took me so long to get the ClogZapper, that by the time it arrived, it was relatively useless. I did two rounds of ClogZapper and there was still detritus left afterwards. It was time for a tube swap.

Last Tuesday, I got myself a brand new tube. It was a bit overdue, as the Interventional Radiology doctor commented on how it was getting pretty clogged after he pulled Etisarap out of me and inspected her. I now have a new, shiny, Etisarap. Well, sort of shiny, it is amazing how quickly formula can start building up in some areas. But, she is clear and working perfectly again. And I have one more dose of ClogZapper in the house so I can stay on top of the buildup a little better this time. Regardless, barring clogs, she should get replaced about every 6 months.

The big non-gastroparesis related medical issue in need of attention was my sleep apnea. My CPAP hasn’t been working properly for the past few months, but I just did not have the spoons to see a sleep doctor when I was in that much pain. For whatever reason (the sleep doctor confirmed that the setting on the device were correct) my CPAP stays at low pressure all night, which is only a problem if I am sleeping on my side. But when I sleep on my back, My stomach fills (uncomfortably) with air. So I spend my nights literally vacillating between breathing and stomach comfort.

I strongly suspected (and was proven correct) that my insurance company would have plenty of hoops for me to jump through to get a new CPAP. After meeting with the sleep doctor it became abundantly clear that I would need to do a new sleep study. But at least I could do it at home.

I did a home sleep study this weekend and it was awful. I already know that I can no longer sleep without my CPAP (even in its semi-functional state). And as if to add insult to injury, the study required that I wear an elastic band around my waist to track my breath movements. My abdomen is incredibly sensitive to touch. I can’t wear clingy clothes or waistbands that are at all binding anymore. The prospect of having to try to sleep with an elasticized band right on my stomach was daunting to say the least. Surprisingly (and with the aid of increased pain meds), I made it 7 hours before I ripped the thing off and called it a night.

I spent the weekend recovering and David brought the testing devices back to the sleep doctor on Monday. Fortunately, the data is good and I should be hearing back in 3 weeks with the results.

Ok, now on to the exciting news. Well, after some necessary background.

As I mentioned above, my brain misinterprets gut motility as pain. This sucks because most people’s guts move all of the time. My guts aren’t quite as active, but they are active enough to keep me pretty miserable much of the time. GIs tell me that increased gut motility will help my nausea. But every time they give me motility drugs, the pain is untenable.

I have medication-resistant depression. Despite having been on anti-depressants for decades, the only thing that has ever actually resolved my depression is Transcranial Magnetic Stimulation (TMS). After my first round of TMS in 2019, my then psychiatric NP and I started a very slow taper off from duloxetine, which I had been on for almost two decades. I had read horror stories about withdrawal issues, so we deliberately tapered very slowly.

In May 2023, I completely went off duloxetine and promptly ended up in the hospital with abdominal pain so bad that I could not run my enteral feed. My GI said that duloxetine was among the anti-depressants that have been identified to help with gut/brain issues. So she put be back on it and my gut pain got better. But only to a point.

About two years ago now, one of my many GIs in NYC suggested that I try shifting from duloxetine to nortriptyline because there is good data showing that it can be more effective than duloxetine with gut/brain issues like mine. I had concerns about going off the duloxetine again, without simultaneously tapering up the nortriptyline lest I end up in the hospital again. Mary quickly found me a psychiatrist who would be willing to work with my GI to make the shift. Then we moved to California.

Once we arrived here, I explained the plan to shift me from duloxetine to notriptyline to my new pain doctor at Stanford. The psychiatrist in NY had mapped out the transition and said he would be happy to talk her through the process. But she was concerned about my history of depression, and did not feel comfortable overseeing transition herself. She suggested I find a local psychiatrist to supervise the transition.

Over the course of a year, I met with 3 psychiatrists, none of whom were willing to oversee the med transition because it was for a GI issue, not a mental health issue. Especially since I now have demonstrable proof of my medication resistant depression, having had not one, but two successful rounds of TMS.

That was how I ended up meeting with the out of network psychiatrist in the GI department at Stanford. The one with questionable professional ethics who gaslit me. Regardless, I tried hard to get coverage to see him because he seemed to be my last viable option. Even taking the insurance company’s rejection of coverage to the state insurance board. They denied the complaint and we are in the process of appealing.

Last week I met with my pain doctor and told her the sad tale of my trying to find a psychiatrist that would manage the medication change for me. I told her how I met with 3 psychiatrists that said that it was above their pay grade. And I told her about the asshole psychiatrist and the fights the insurance company to be able to see him anyway.

Then I countered with a proposal that she manage the medication change in consultation with a psychiatrist who would monitor my mental health. She agreed. Literally minutes after our appointment ended, I had called and scheduled an appointment with the psychiatrist I had found who had agreed to work with my pain doctor. I signed consent forms online and shared the appropriate contact information. Although my appointment with the psychiatrist isn’t until mid-August, by the end of the week, the two doctors had spoken and agreed to start me on the Notryptiline right away.

I am now on day two of the ramp up, and nothing to report yet. But I am so thrilled with the fact that after two years, I might actually be able to get rid of some of this pain. And I remain giddy that I can spin. Be grateful that this post is already this long, because otherwise I would regale you with the bajillion fiber thoughts that have taken root in my brain. That is what I spent most of my time talking about in therapy this week. I am happy to report that my therapist is thrilled on my behalf.