After six months and too many doctors to list (believe me, I tried)…
I have a (at least partial) diagnosis:
After many, many inconclusive tests, I found out the results of my electrogastrogram on Tuesday. Apparently, my stomach muscles contract too strongly and violently 25% of the time before I eat and 50% of the time after. This results in the nerves and muscles only being able to work together 9-12% of the time, which is “extremely low” in the words of my doctor. I’m still beginning to understand exactly what this all means, and I have a lot of questions to ask my doctor the next time I see her, but it basically amounts to my having a gastric dysrhythmia. You know how you can have a cardiac dysrhythmia, where your heart beats in an irregular pattern? It seems as though my stomach “beats” in an irregular pattern.
(I should probably clarify something at this point: my friend Janna sent me this link about a woman’s experience with tachygastria. It seems as though some doctors use tachygastria to refer not to an electrical rhythm viewed on an EGG, but rapid gastric emptying. Rapid gastric emptying is also called dumping syndrome. This isn’t what I have, except when my small bowel decides it wants to play at this because of feeding tube intolerance. My stomach empties in a normal amount of time — 7% of solids remain at 4 hours, and 48% of liquids at 1 hour. However, the kind of tachygastria I have is seen in the majority of patients with gastroparesis, the condition where your stomach empties slowly and that the doctors initially thought I had back in June/July. So, while my stomach empties normally, there are a lot of similarities in what I’m dealing with and what someone with gastroparesis deals with and the treatments overlap.)
The big question, of course, is how to treat this. There are some medications to try that calm and reorganize the nerves. They also help with the pain and discomfort — despite the results of my Barostat, the EGG did show some visceral hypersensitivity. (I’m not sure if this is because I have it intermittently or if it’s because the overactive nerves are in my small intestine instead of stomach or…?) The only problem is that most of these drugs have cardiac side effects…including QT prolongation. My EKG showed a prolonged QT interval, which may have just been the result of some of the meds I was on. But it may also have been why I often got a funny feeling in my chest after getting IV Zofran (previously chalked up to the medicine taking its effect or the impact of rehydration, etc. since I don’t exactly look like a cardiac patient), why my heart monitor went crazy moments before I started vomiting after my last endoscopy/Barostat, why I had palpitations from a non-QT prolonging med with cardiac side effects….When I told Dr. Shetler about my reaction to the medicine B. at the beginning of my appointment, she immediately excused herself to call a cardiologist friend for a consult. The cardiologist said she would need to see me before determining whether I can take any of those medications. If not, there’s another medication we can try — it’s one originally developed for seizures — but we may need to get neuro clearance for that one.
There’s also a chance that my stomach will reset and go back to normal on its own at some point. It might just need more time. We don’t know what caused the tachygastria, but a viral cause seems pretty reasonable. (It’s not exactly rare for viral gastroenteritis to cause things like gastroparesis, for example.) Dr. Shetler said it might be six months or a year if this happens, though. We’ll definitely be trying things in the meanwhile!
If nothing else works, this condition does qualify me for placement of the Gastric Electrical Stimulator. It’s basically a pacemaker for the stomach, to replace/aid the stomach’s own natural one. Placing it is a major, and not uncomplicated, surgery, though, and it leaves a device in you permanently. Dr. Shetler said that while Cal Pacific is one of the places that has pioneered the use of this device and has done a relatively large number of these procedures (170 in the last 10 years), they don’t like to place them in younger patients. It’s a worst case scenario, but it’s nice to know that the possibility exists if it becomes absolutely necessary. (There’s also the possibility of a temporary stimulator, which my doctor thinks I would be a good candidate for if it came to that. In that case, they place the stimulator endoscopically and keep you in the hospital for a week or two to see how it’s working. BUT in addition to telling you how a permanent one would work, just that short placement can reset your stomach’s electrical currents for months, years, or even forever! That would require getting insurance and NIH approval, though, so not sure how likely….
I’m incredibly grateful to finally have some answers, to finally have a test that reflected how sick I am. I really don’t want to be ungrateful, but there’s a certain point at which negative test results aren’t quite good news. It would have been easier to treat H Pylori ulcers or celiac or SIBO than to remain in mystery diagnosis land. Granted, there are things I think about how lucky I am not to have literally every day — cancer is the big one. But the uncertainty has been baffling. My doctors have been cognizant of how ill I’ve been and haven’t questioned it — malingerers don’t throw up through cocktails of IV anti-emetics or lose weight despite tube feedings — but it’s still nice to see data. And it’s an incredible relief to have some direction to go in, to have a PLAN. It may take a while yet, but I’m going to get better and have a long and healthy and productive life. The worst case scenarios with all of this may include some not-so-brilliant effects, but they don’t preclude that, which is the most important thing.
Also, my increased stomach pain/cramping/diarrhea are probably from not tolerating the tube feeding very well. Jevity is one of the more difficult to handle formulas, apparently. I’m supposed to be switching to Peptamen. Of course, despite getting all the calls in last Wednesday and getting orders from my pcp and all that, I still haven’t switched. Insurance has to approve it, which can take up to five working days, and there was the holiday….I understand that everyone needs holidays and vacations and weekends and whatnot, but I find it kind of frustrating that this delays getting my formula when it’s my only consistent source of nutrition. Anyway, I’ve still been getting Jevity, but hopefully we’ll get a call from the infusion company later today and I’ll be able to switch to Peptamen tonight!
I also saw the neuromuscuar specialist for several hours before that appointment (probably some kind of periodic paralysis, but nothing too troubling), ended up in the ER with a clogged tube that had to be replaced, and had a cardiology appointment (this EKG was good but I’m going to have another test and monitoring if I start the meds.) For the sake of getting this post up some time this century, I’ll try to write about those later.