This post is very medical and very long, so it might be boring for those of you not in the medical field. Just an FYI.
I’d like to add a new doctor to my team: Dr. Mathias, my gastroenterologist. He will be my main doctor going forward in managing my endo.
My first appointment with him was early in the morning at the end of May, and I had to fast starting at midnight the night before due to a test he was going to run on my stomach.
Dr. Mathias himself comes to get me from the waiting room. That immediately endeared him to me. He takes my mom and me back into the exam room and has me sit on the table. He looks at my fingernails, my hands, my tongue, feels my throat, listens to my lungs, then has me lie back and listens to my stomach with his stethoscope. Then he lets me listen. A normal stomach sounds like gurgling. A stomach damaged by endo sounds like rice krispies popping in milk. And that’s exactly what it sounded like. It was so weird.
Next up was the test, with a machine that HE invented. NBD. He took me into a dimly lit room and had me lie in a recliner while his nurse hooked up three little electrodes to my stomach that would monitor the activity for 10 minutes. After 10 minutes, he gave me a cup of water and ran the test for another 30 to see how long it takes my stomach to empty the water. The test is painless, and I was able to take a nice little nap since they turned out the lights and shut the door.
When it was over, I went back into the first exam room where my mom was waiting for me. He printed out the results:
- My stomach takes between 20-24 minutes to digest a cup of water. To put this in perspective, the average person with a healthy bowel takes between 3-4 minutes for water to move out of the stomach. Endo damage to the bowel is irreversible, so my stomach will forever operate this slowly. This is also why I have to stay on an anti-inflammatory diet –my system can’t handle foods that are harder to digest. Now I finally understand why I was constantly in pain with a distended belly for the past 6 months, eating inflammatory foods without any awareness as to how hard it was for my body to break down. This also explains my early satiety. I’ll be starving, but can get full with just a few bites of food, only to be hungry again 20-30 minutes later.
- I have an insulin sensitivity. Yep, you read that correctly. I wanted to throw something when I heard this. I am one of the cleanest eaters around, I’m very active, and I don’t ever drink juice or soda. C’mon body! Now I can’t eat ice cream anymore. Thanks endo, you asshole.
Once I heard “diabetes”, my shutdown reaction mechanism kicked in and the room narrowed to a fine point and I didn’t hear the doctor talking anymore. I pulled within myself screaming and pissed at this disease for ruining everything. First it takes away cheese and bread. Then red meat. And now sugar?!?! I don’t eat much sugar really, but ice cream is my favorite food of all time and if I want to splurge on some Ben & Jerry’s Phish Food, then I want to do so without sending my body into shock. Luckily this pity party lasted only about 45 seconds before I realized Dr. Mathias may be saying some very important things I needed to hear. So I pulled myself out of it to pay attention like an adult.
He drew a diagram of my bowel that I still don’t understand. He used it to explain how endo gets into your gut and starts messing everything up by closing doors that should be open and opening doors that should be closed, if that makes sense. Something about all my receptor cells being “excited” too. But not the good kind of excited like if you were to spot a unicorn in the wild.
I also learned that 95% of your serotonin receptors are in your gut. Right now I have an overload of serotonin (a result of the endo/insulin sensitivity) which is most active between 11pm-3am, thus causing my severe nighttime anxiety and insomnia.
This, my friends, is a really good time to point out why you should always listen to your intuition. Because when I had all of this anxiety months ago, I knew it had to do with my body, not my brain. But no one believed me. I don’t know how I knew this, I just did. It was an anxiety that originated somewhere deep inside me, but not from my head.
Maybe I knew this because it was a really bizarre anxiety. I’ve been “brain anxious” before, where your brain won’t shut off and thoughts keep whizzing by like you’re standing on a train platform, barely able to glimpse the first car before the 2nd, 3rd, and 4th fly by. It wasn’t like that this time. I was so exhausted that my brain pretty much shut down at night, like it was saying “I’ve done all I can do. You’re on your own.” And it would tuck itself in for the night while my body was just waking up.
The anxiety would start around midnight, and would course through my body with inexplicable agitation. I would begin tossing and turning to see if I could get comfortable and relax. That never worked, and the more I lied there the more I felt like something was going to burst out of my chest. I would let my arm hang off the side of the bed and let it shake continuously, trying to get the energy out. When that wasn’t enough, I would get out of bed and do jumping jacks, lunges and run in place. Anything to let it pass through me so I could sleep. Remember, I’m also an insomniac with a zombie like disposition, so I have two very powerful forces working against me: one part that desperately wants to sleep but can’t, and another part that desperately wants to get the anxiety out but I don’t have the physical energy to do it. Does that make sense? When THAT didn’t work, I would resort to running laps around the island in the kitchen. Remember when I said in earlier posts that I was on the verge of a mental breakdown? Well, doing that shit at 3AM is the express train to Crazy Town. It’s like I was watching myself slowly go insane. And ALL of it, ALL OF IT, was simply because I had too much serotonin. Hormones, man. They really eff you up.
It’s a terrible, terrible thing to experience, and I hope none of you ever do.
That was how I spent 4-5 nights per week for months.
Do you see how complicated this disease is? And how easily it can be misdiagnosed? Somehow I’ve managed to land myself the one man in the world who has made it his life’s mission to know everything about endo and what it does to your gut. Trust me, I do not take this for granted.
<Climbs on soapbox>
If you have been diagnosed with endometriosis and you aren’t seeing a gastroenterologist to manage this chronic disease, you are doing yourself a disservice and providing a fertile ground for the endo to return. Get yourself a gastro doctor!
Ok, back to me. Going forward, he wants to treat me with the following:
- Minerals (high grade minerals that heal the gut, 2 tbsps every morning)
- Pharmaceutical grade fish oil, one with every meal and one at bedtime
- Klonopin, .25mg before each meal and one at bedtime (to control stomach seizures)
- Periactin (Cyproheptadine) 0.5 ml am and pm (serotonin blocker)
- Anti-inflammatory/low sugar diet including a tbsp of olive oil at every meal
I took the Klonopin for a week and a half and then had to stop. It gave me such severe anxiety that I was taking 3 Xanax during the daytime. I never have to take Xanax during the day, and even on my worse nights I never take more than 2. My mom did some research and suggested I stop the Klonopin ASAP. I did and was fine the next day. I called his nurse to make sure I was okay to stop it, and she said as long as I felt okay we were good. I will never touch the stuff again.
The Periactin, however, has turned out to be a LIFE SAVER. More about that in the next post.
Hello, just wanted to tell you, I loved this blog post.
It was inspiring. Keep on posting!
Hello Erin – my wife saw Dr. Mathias today after a referral form Dr. Mangel. She was prescribed Periactin, which you stated was a life saver. I cannot locate your other blog which discusses how Periactin has helped you. Would you mind sending a link to your other blog or explain how the Periactin helped, how long it took to work, etc. any info you can offer on the subject would be greatly appreciated.
I am currently not taking periactin anymore as me and my current dr didn’t feel it was doing much. Honestly nothing but a complete diet change has helped heal my GI. how is your wife doing on it? Please email me any questions!! Erinparker75@gmail.com