24 years. If I’m remembering correctly, I have had gastrointestinal problems for 24 years.
First it was ignored. I didn’t think to tell anyone. And I didn’t know that diarrhea wasn’t normal, that not pooping for days at a time wasn’t normal, that nausea and pain weren’t normal. So I suffered in silence.
Then I saw a doctor who wasn’t helpful. I drank prune juice for the constipation and that got me through the worse of it. Sort of.
Another doctor said I had IBS and gave me a prescription.
Years later I went off gluten, then a bunch of other foods. That helped a lot. The episodes that had been coming more frequently backed off. I no longer found myself in the fetal position from gastrointestinal pain 3-5 times a week. Now it was only 1-4 times a month. Only. Hmm.
The problem was, the episodes continued, and my emotional response to them got worse. I found myself thinking more and more often about how I would prefer death. I only thought that way in the middle of the episodes, when I am already in too much pain to seriously consider killing myself anyway, but still, that’s not good.
I never think about death when I have joint pain, even though that pain is much worse. There is something about the nausea that triggers these thoughts now.
Recently I had an episode that was especially bad. I called a friend and neighbor, who came right over. But even his dog, who he kindly brought, wasn’t enough to help me. I sobbed while curled up on the floor, unable to sit up, unable to think clearly, but knowing I needed to not be alone. Eventually the worst of it subsided. But it was enough.
After that, I finally decided to pay the money for the stool test that had been recommended to me. When I saw my doctor the next week, I was shocked to learn that the test was actually covered by insurance! Wow! I took it home, read the instructions, and realized I needed to go off of a couple of my supplements for 2 weeks before I could take the test. So I waited. And waited. And finally it was time, but my joints were acting up and I just didn’t have the mental bandwidth to manage the pain and the test at the same time.
And then, finally, I took the test. For 3 days I scooped poop into a cup. Joy oh joy. But I did it.
It took time for the company to process the test. Then more time for my doctor to get the results, and for the results to be sent to me. But now, finally, months later, I have the results!
And I have no fucking clue what to do with them.
Some aspects of my gut are in balance, others are not. My doctor was honest: there was nothing he could suggest except to take a probiotic (which I already take, but which I had to stop taking for several weeks before the test) and so he wanted me to see someone with more expertise. I appreciate his honesty. That’s why I see him.
There’s just one problem. He recommended 2 different practitioners. And neither are covered by my insurance. At all. Not one penny.
So now I’m considering paying. The one who looks more promising based on her experience is $217 for the first visit and $188 for each followup. I have no idea how many visits I’ll need.
I have the money. And to be honest, if I’m going to spend money, this is a good thing to spend it on. I save as much as I can these days, but really, why am I saving it? To take care of myself. And if I can fix this problem, avoid these episodes from now on, why wouldn’t I do it?
So once again, I am going to pay out of pocket for my healthcare. My insurance is fabulous when it covers my care. But when it doesn’t, I question what is wrong with our system. No one would question that I need help. There is obviously something very wrong. I have limited my diet, tried pills, and followed doctors’ orders. And yet, I still have episodes that have me curled on the floor thinking that death might not be so bad. I need help. And I am so incredibly lucky that I can afford to pay for it.
What if I was one of the ones who couldn’t?
Chronic Rants 
Wow. I never heard of insurance that wouldn’t cover the specialists. Usually, there’s just a higher copay. If my GI doctor wasn’t covered, I’d really be up a creek. If you can afford to pay for it, definitely go see the specialist.
Sadly, Cordeliasmom, that happens a lot here. In this case, it’s not a GI doctor, but a nutritionist who isn’t covered. The other one I could see is a doctor but doesn’t take insurance. My insurance won’t cover a nutritionist unless I have diabetes. Not helpful. The GI specialist I saw a few years ago wanted me to see a nutritionist for my Celiac Disease, but it wasn’t covered. So yes, I will have to spend hundreds of dollars of my own money to go. But so many people don’t have that option, which makes me both angry and sad.
Ah, now I understand. A nutritionist wouldn’t be covered under my insurance, either.
That’s so sad. They’re contribute so much to healthcare!