I saw a Gastroenterology (GI) doctor yesterday.
I dragged Mr. MPB along with me, because who doesn’t want to spend their Valentine’s Day at their wives GI appointment? In all seriousness, I decided this was an important enough appointment that I wanted a second set of ears listening. And let me tell you, I am so glad I dragged him with me as we spent over an hour with the GI doctor.
First, the GI didn’t even bring in my chart with him – he didn’t need it! He knew my entire history from memory. He reviewed my reports from Dr. Braverman, which had a lot of genetic testing included in them (I didn’t bring the actual report to the scopes a few months ago). He went over my medical history again to make sure we hadn’t missed anything. He went over all my past colonoscopy and gastroscopy results (which are all considered normal). He acknowledged that based on all the testing he’s reviewed, I don’t have an ulcer, and probably never have. He acknowledged that he doesn’t know what’s going on fore-sure as I do have an odd case history and nothing is presenting in a text-book way, but he tends to think it is auto-immune related considering my thyroid problems, the recurrent miscarriages, my medically induced lupus, and my history of these stomach episodes.
Once we went over all the past history, we moved onto possible causes and diagnosis. The GI actually had a white board in the office, and was drawing pictures to explain what he hypothesizes could be going on and what the different testing options are! Seriously, he drew pictures to explain everything, and it was unbelievably informative.
He offered options for future testing and went over testing he’s not ready to do yet because the tests are way too invasive with little benefit. He also offered options for possible treatments, with and without some of the testing. He took the time to answer any and all questions we had. He listened. He gave us choices to consider. He went over possible diagnoses, and encourage us to do some more research on our own.
So, in no particular order here are some of the things that we are now researching:
- MALS – Median Arcuate Ligament Syndrome
- CACS – Celiac Artery Compression Syndrome
- Kink in small intestine
- Hiatal hernia
- Internal hernia
- AIP – Acute Intermittent Porphyria
- APLA – Antiphospholipid Antibodies Syndrome (Dr. Braverman tested for this and said I don’t have it, but the GI doctor isn’t convinced).
- SIBO – Small Intestine Bacterial Overgrowth
- SOD – Sphincter of Oddi Dysfunction
And to make things extra annoying here are a few more tidbits of info:
- Almost none of these are particularly easy to diagnose, especially as I am not presenting in a text-book way.
- A lot of the testing is invasive testing which the GI does not encourage at this point in time because the potential harm far outweigh the potential benefit.
- Some of these can only be diagnosed while experiencing a stomach episode, meaning testing right now would be pointless.
At the end of the day we’ve decided to do the following in the short term:
- More blood work – testing for a bunch of different things, including re-testing some of the things Dr. Braverman tested.
- Barium test – a non-invasive test to get a bit better picture of my intestines – will happen likely in the next few months. It’s not a great test, but it may just give the GI a few tidbits of info that will make it worth it.
- SIBO breath test – while it is not covered by my Canadian health care, it is relatively affordable and very easy to do. I even get to do it from the comfort of my own home.
And, assuming these results all come back fine (which we expect they will) we also have a long term plan:
- Wait for the next stomach episode to occur.
- When one occurs, I will call the GI doctor directly – he even gave me his direct phone number. GI doctor will order emergency testing. The emergency testing will be more invasive, but the end results could be well worth it.
So, for now, we wait and be thankful that when this happens next time I have access to a GI immediately rather then going through Emergency Room hell.
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