Doctors and Gastroparesis: Why Don’t They Get It?

Anyone that has read my blog before has probably read some of my rants about doctors, especially when it comes to gastroparesis. It wasn’t even the fact that they did nothing to help me; it was the fact that they treated me like I was causing the problem even though they knew I had gastroparesis.
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Over the weekend, I received a message thru the Contact Me form on my blog. I cried when I read her message. She has gastroparesis and another health problem. The gastroparesis and bouncing blood sugars compound any other problems and she has been thru a lot in trying to deal with health problems.
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She was put on Regular insulin. Regular insulin seems to be the insulin of choice for doctors with gastroparesis because it is slow. It might be slow, but it also stays in your system for 6+ hours. Besides food being slow to digest, whatever you treat your lows with will be sitting in your stomach with all the undigested food and you will be fighting lows for hours. When I was in the hospital, nurses would always be puzzled because they would give me something to treat the low and I would be even lower when they came back to check again. That is a very common scenario with gastroparesis. If you have insulin floating around in your system for 6+ hours and food going nowhere, what do you really think is going to happen?
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Last fall, I had a one-time visit to a new endo. She complemented me on my A1c then turned around and criticized the fact that I was using Apidra with gastroparesis. I might have decent A1cs because Apidra works for me and gets out of my system fast. But no, I should change to something that is going to hang around in my system for 6+ hours causing even more lows.
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This woman was having very bad lows, which included seizures. Of course like so many of us, the finger was pointed at her. Her doctors actually told her family that she was deliberating causing the lows. WTF? Do they even know what the definition of gastroparesis is?
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Here is the definition of gastroparesis from the Mayo Clinic’s website:

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Gastroparesis is a condition in which the muscles in your stomach don't function normally.

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Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and play havoc with blood sugar levels and nutrition.

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Play havoc with blood sugar levels – what part of that do doctors not understand? I don’t think you need to be a rocket scientist to figure out what that means. I get that doctors might not know how to help a patient with gastroparesis but why blame the patient because you don’t know how to help them? Whatever happened to the Hippocratic Oath?
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I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

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I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

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I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

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If you don’t know how to help someone, then say so. Quit being an arrogant jerk and blaming your patients because you don’t know how to help them. I truly hope that there is a special place in h*ll for some of these doctors.

Hi Kelly. I don’t have Gastroparesis, but I do have slow digestion and Celiac. They give me a mini version of the same symptoms. Dinner time is particularly difficult. On MDI, i make use of both Apidra and Regular. Dinner usually requires two shots, one of each insulin. When I wake up in the morning, I need some help before a new shot of Levemir kicks in; then I mix some of each insulin in one syringe which holds me over very well. I absolutely have to have Apidra for corrections of course. I don’t suppose any of that was a help in any way, it’s just what I do. Days on the pump are easier of course, but dinner remains a problem unless I have almost no carbs, and only Apidra works for me when wearing the pump.

Trudy, I do know that Regular helps alot of people and I know Apidra is not the answer for everyone. I was just more upset with the fact that someone has insulin hanging around in them for so long and their doctor says she is causing the lows! It is a balancing act!

Absolutely a balancing act. No medical person should blame a patient for any disease or any symptoms, wrong wrong wrong. It seems that there should be someone available to you who specializes in this problem. Best luck.

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Doctors seem clueless when it comes to gastroparesis! I know someone that actually went to the Mayo Clinic & was told she would never get her A1c below 7 with gastroparesis. Fortunately, I found the DOC - they are the ones who helped me.

I’m so sorry you have such a horror of a time. I am lucky, I have an awesome endo. As soon as I started having problems (I would go low and then not be able to bring it up with a snack) he immediately sent me to gastro chick and had me tested. As soon as the diagnosis was confirmed with some funky eggs and scans, he changed all my meds and I was fine. He knew exactly what the problem was and exactly what to do. I take regular insulin during the day with each meal and levemir overnight very successfully. My gastroparesis was measured at 20% - I only digest at 20% the speed of Joe Average. My A1c fluxuates between 5.5 and 6.5 (last time 6.4 - hey it was Christmas! give a girl a break). I no longer have as many lows and battle them with juice, not with food. Gastroparesis gives me all kinds of problems - boy do I know what it feels like to have dinner sitting in your stomach like a brick - and my diet isn’t exciting but my endo is just great. Every visit I have my list of questions and he answers or finds the answer. When I think of people with clueless doctors I feel so lucky. Hang in there. Good Luck. Know that there are people out there who understand.

Hi Marcia, I am glad that you have been able to get your gastroparesis/BS under control. I have actually had my A1cs in the 5s for the last 3 years, other than my last one was 6.1. My problem was pump issues! You are lucky that you have a good doctor. If I had not found the DOC, my BS would still be bouncing all over the place (I am now a proud member of Flatliners!). I am starting to think that I must have blow up a hospital in a prior life or something because I have horrible luck with doctors.

Hello Kelly:

As a diabetic my entire life. A diabetic with over 4 decades of “in the trenches” hand to hand experience teaching this beast we share “obedience”. This is an conceited tactic by some doctors. And I look forward to the next imbecile who pulls that game on me -frightening dangerous look-…

Now that being said… is, is it possible that SOME of us… could be causing to whatever degree pieces, parts of whats happens with us? Can we sabotage ourselves in different ways I ask?

Stuart

Stuart, I agree with you that some people do cause the problems. I have an aunt that did that so I have seen it first hand in my own family. My point was with gastroparesis, the very definition states that it causes havoc with BS. If you have insulin working in your system and your food is not digesting, then you are going to go low. When your food decides to digest and you don’t have insulin in your system, you are going to go high. There are no regular patterns. You might eat a meal one day that digests in 4 hours and the next day that same meal sits for 24 hours. It is not a simple matter of taking your insulin and eating right. You can’t blame someone with gastroparesis that their BS is bouncing around.

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Kelly, you aren’t the first person to have doctor’s that just seem to want to do things their way and pretty much shrug off what your saying and your body is saying to you… It took me a long time to find an endo that I clicked with, and then some time to change endo’s to do the pump thing… Iv actually seen my own doctor do the “yah might want to try regular to someone” but he also explained to her there are advantages of short acting with gastroparesis as well… I think even faster acting insulin after one eats a meal may eventually be the solution (newer insulin that is supposed to be working in 15 minutes and completely done in 2 hours (Viaject by Biodel (last I read about it)… Regular has a nasty tail

Jake, believe me, I have read far more horror stories from people than what I have gone thru! I was really fortunate and started off with a very good doctor that was pretty progressive for the times (84). Then I moved and it was all downhill after that. I am glad that your doctors also saw the advantages of the short acting with gastroparesis. There is no one thing that works for everyone. Even if something works 99% of the time but you are in that 1% it doesn’t work for, you need to try something different. It is just frustrating that doctors can’t seem to see that when something is not working, it doesn’t mean that you are doing something wrong. It just means you need to try something different. I agree, Regular has a nasty tail!

Hi Kelly,
I once bought a vial of Regular to see if I could cover a meal with 1 shot instead of my usual 2 shots of Humalog and the first words out of my doc’s mouth were that Regular is more variable and inconsistent from dose to dose. That put an end to that experiment!

Don, I always thought of Regular as being more stable than the newer insulins. I know people that have switched back and actually like it better. If you didn’t toss the vial you bought, it wouldn’t hurt to try it and see if you like it. I just worry about it with gastroparesis because it hangs around for so long.

I hear you, Kelly. I went through hell until my gastroparesis was diagnosed. Doc at the time said I was overdoing insulin from postprandial lows & questioned if I was really taking the dose stated on my logs were right. Yep, I’m lying–idiot. So, I was also accused of causing my lows, though for a different reason. My fasting was outrageously high. It wasn’t DP, it was delayed stomach emptying.

I use Apidra & Regular. Many nights I’ve needed that long R tail, but problematic during the rest of the day. Doctors don’t usually get this.

I knew you had gastroparesis Gerri, but I don’t think I have ever heard you mention the problem with the doctors about the BS before finding out.

I have been sick the past 2 weeks & my stomach is a little more upset than most days. The other day, I ate lunch at noon & threw it up at 10 PM. That would have been a fun afternoon if I had been on Regular!