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Why is it so hard to get help?

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Crohn's Disease
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Posted 1/8/2018 10:19 PM (GMT 0)
I get so frustrated with this whole health care system. I was diagnosed with Crohn's about 6 months ago and since then I've gotten to experience the joy of dealing with our crappy healthcare system. It goes like this.

1) I have pain.
2) I call the doctor and leave a message.
3) His assistant gets back to me and schedules an appointment a week or two out
4) I go into his office and I get his attention for 15 minutes wherein I have to try to remember everything I've felt for the last 2 weeks.
5) He orders some blood tests.
6) I have to drive to the lab to get tests
7) I wait a week for the test results
8) My doctor calls me with the results and schedules another appointment that is a week or more out

(Now we're at least 2 or 3 weeks away from my initial complaint and I still have gotten zero help. Meanwhile I'm struggling to function with this pain at times.)

9) My doctor writes a prescription for a drug. (This is if the results show anything abnormal which they often don't)
10) Try the drug for a week or two
11) If it doesn't work repeat the above steps

Any other company worked this way they would quickly go out of business. Why is it that I can order any product in the world and Amazon can have it at my doorstep in 2 days but I can't get a drug to help my pain in under 3 or 4 weeks?
Posted 1/8/2018 10:28 PM (GMT 0)
Not to mention the fact that every doctor's visit costs me a $50 copay plus whatever else my insurance decides not to cover. Plus the price of the drug itself...

We're talking $150-$300 each time plus painfully slow service and what do I get? Maybe thirty total minutes of face time with a doctor and a drug that might have a 50% chance of working. Also, most of the time after this whole ordeal happens I go home with the exact drug I knew they would give me. It just took them 3 weeks to come to that conclusion.
Posted 1/9/2018 12:18 AM (GMT 0)
So what med are you on to try to manage your Crohn's?
Posted 1/9/2018 12:44 AM (GMT 0)
If you are going to drs that are in network with your insurance plan usually all you pay is a co-pay after the deductible is met. Keep a diary of your symptoms & that way you can tell the dr what hasa been going on.
Posted 1/9/2018 1:59 AM (GMT 0)
I’m on Humira which worked great for a week and a half. Then it stopped. Blood test shows I’m developing antibodies. My next options are to double the dose or add another drug.
Posted 1/9/2018 3:43 AM (GMT 0)
If blood tests show you are developing antibodies, then doubling the dose is NOT the right choice. You could add in imuran or MTX, or you could switch to another biologic.

I might try to find a different GI. Mine is extremely good about NOT wanting me in the office, lol. They're happy to just do things over the phone. A lot of the time, they'll have me do lab work BEFORE the appointment so we can discuss the results right then instead of waiting a week. It may help to send a message via their patient portal so they could get more details and maybe respond more quickly.
Posted 1/9/2018 4:38 AM (GMT 0)
I agree with Sci-fi....

And I know people hate to hear it...but the squeaky wheel gets oiled faster. You just have to find a way to get their attention without upsetting them too much...and you have to be very very nice about it.

And...I would look for a new doctor. I had one like that. He...literally...almost killed me. Luckily I ended up in a good hospital with good GI that helped me find a specialist.

Clo
Posted 1/10/2018 11:25 PM (GMT 0)
Thank you for the advice everyone.
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