So Much to Be Thankful For

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.)

Heading down and excited to get answers!

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.


5 thoughts on “So Much to Be Thankful For

  1. I was a bit behind on reading your posts. So glad that you have a diagnosis and at least know what is going on. Wouldn’t it be brilliant if it sorted itself out! It is scary to think that a virus could cause it! The body is quite amazing though, and you’re so young and otherwise healthy, so it would be wonderful if it got itself on track. Sounds like you’ve got some great doctors who really care to solve it too! 🙂

  2. Not a woman, but I’ll take whatever web traffic I can get! My story mentioned above should probably be taken with a grain of salt; I had probably four separate diagnoses by three doctors, and none of them were conclusive. (Seems to be a problem with stomach ailments). I’m glad to see someone is writing about the issue, though. At the time, I had found little on-line other than the usual descriptions on health sites and medical articles; there were very few straight forward stories or anecdotes from people living with it. So keep it up, and good luck!

  3. Pingback: So much for regular updates…. | Whimsical Desperation

  4. All autonomic functions are subject to established efferent nerve communications with interstitial cells of cajal (ICC). These ICC networks are subject to deteioration where conditions of insufficient blood constituency and/or perfusion exist. The factors of sufficient ICC microenvironment are complicated by multiple factors, especially in the messenteric (gut)circulation. Blood perfusion improvement possibilities can involve any of the following or a combination thereof

    1. Improved heart ejection factors (insufficient heart function)

    2. Improved Eyrithropoeitic fuction (anemias by any cause, but must be absolutely identified to avoid iron overloading as many anemias are not from iron)

    3. Improved NO cascade function(vascular dysfunction)

    4. Addressing of any vascular blockages

    5. Addressing of hypothyroid conditiions

    6. Addressing Growth hormone insufficiencies/antagonist (for improved angiogenesis)

    7. Addressing mal absorption syndromes such as those caused by antacids/Celiac

    8. Addressing gastro intestinal blockages/ tumors

    9. Addressing any voluntary of involuntary beta andrenergic syndromes such as exessive exercise, or panic attacks initiated by hypoxias of different etiologies.

    10. Addressing any vasoconstrictive pharma / pain meds

    11. Gluten free diet

    12. 24 hr. O2 monitoring to address night hypoxia

    Your mesenteric circulation is the mining canary of insuficient blood perfusioin due to high resistance of that circulatory system

    I assume your feeding tube was placed as a result of emesis/”reverse peristalsis problems.

    I am not a doctor and I know many of these suggested factors of gastroparesis and other autonomic dysfunction are confusing. The question is how to reset normal autonomic regulation that most take for granted. My constellation of autonomias was related to long term type 1 diabetes but I have been cured by addressing all of the above, thanks to much prayer, study and effective applications . I also needed to go on a gluten free diet. Aloha are in my prayers. You seem to be medically proficient and I can insert numerous studies in this letter if you want. Your GP sounds more serious than mine and i also suffeered post operative GP symptoms.

    Aloha nui


  5. Hi Jordan I was researching Visceral hypersensitivity and came across your blog I am from England my name is Donna my 14 year old daughter Tia’s story almost reads like a carbon copy if yours We are still trying to find out why she can not cope with the NJ feed because of pain and increased nausea and reflux. Have you managed to cure/cope with this problem and if so how. Sorry if a lot of questions it’s just that for the past year 15 months tia and ourselves have felt like we are going mad because everyone has said nj feed can not cause pain x

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