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Welcome to my blog.

My goal is to help provide EDS & Dysautonomia patients with resources to discuss with their healthcare team.

Gastroenterologist

Gastroenterologist

It took me about a month to get an appointment with the gastroenterologist. As I’ve talked about on here before, I deal with chronic constipation. My previous gastro doc came to the conclusion that it was most likely SIBO (Small Intestinal Bacterial Overgrowth) and prescribed Xifaxan as a means to help battle the bacteria. And that this might need to be done once or twice a year. Well, my insurance had other plans (because the 2 week course would have cost over $1800) so the doctor gave me free samples that were only 2 times a day instead of the full 3 times a day that he had prescribed. I felt amazing afterwards! But it wasn’t quite enough. We tried to get my insurance to approve it, but had no luck. 

The new doctor wants to prescribe me the same medication and a new insurance company having the same issues. He also asked if I’d had the “breath test” to determine if I had SIBO, I said no. He said it’s standard procedure (but didn’t run the test or schedule to run it. Weird?).

This time the insurance company wants me to try an “antispasmodic (e.g. dicyclomine) at up to the maximally indicated doses.” Before they’d consider another admission of a prior authorization. At least that’s what their denial letter had to say. 

Talked with the doctor’s office as well as the pharmacy. The pharmacy hasn’t had any luck with prior authorization approval with my insurance. But they did say there was some magic they could work where they could do 6 pills at a time and fill it 7 times (all at once) for $10 a pop. So the medication would cost me $70 instead of $1800. So there’s hope!

*Back to the full regimen from this doctor* 

He wants me to get on a regular “schedule” so he wants me to take milk of magnesia and bisacodyl (aka Dulcolax 10mg 1-2 times a week). 

I ordered them online (because it was 10 times cheaper than in the store and waited until I had a couple days off to try 1 of them. I decided to try 5mg of the Dulcolax in the late morning and went about my day. Everything was going perfectly fine and I was figuring that I’d need to take the other 5mg when I got home that night. 

Well..I was seriously wrong.

I was at dinner with a good friend of mine when my stomach started cramping to the point where I thought my period was starting. I was in so much pain I couldn’t focus on our conversation. I told my friend that the pain had gotten so bad that I needed to go home.

I was dizzy, nauseous, and in so much pain that I just wanted to be home. But I needed to drive another 30 minutes to get there. I couldn’t tell what was going on. I didn’t have any urge “to go”, my stomach just hurt so bad that I could barely focus on driving. I threw off my hoodie and blasted the air conditioning because it was the only way to distract my body from the pain. Keep in mind that I have Raynaud’s phenomenon (super sensitive to cold). So my body was freezing but at least it slightly lessened the pain enough that I could drive home. I got super lucky that the parking spot right in front of my apartment complex was open. I parked my car and walked as quickly as I could to my apartment. Ran to the bathroom and sat there for the next half hour…as everything ran out of my body. I felt weak and sick and awful. Overheating, freezing, and just awful. 

I will never ever take that medication again. It took me the entire next day to recover from it. I still need to talk to my doctor about it and how it affected me. POTS flare level 10. Down for the count for a full 36 hours. Slept for at least 11 hours. 

Was it effective at getting things moving? Yes. Will it keep my life on track and be something that I can keep up with on a weekly basis? Absolutely not. Another medication that we can add to the “not effective” for treatment list. 

New Supplement Trial

New Supplement Trial

Specialist - Finally!!!

Specialist - Finally!!!