Most patients with gastroparesis (GPers) come across doctors that either give up on them, tell them that their symptoms are all in their head, dismiss symptoms as not being a part of gastroparesis, they mistreat symptoms with wrong or interfering medications, and a lot of the time doctors just don't listen to their patients. This is all because the medical community does not know of, or understand gastroparesis. It's time they start realizing that gastroparesis effects EVERY aspect of our lives and comes with numerous symptoms that they have yet to acknowledge as a part of gastroparesis.
Along with understanding gastroparesis and acknowledging symptoms, doctors and the medical community also need to know how diabetic gastroparesis works and how complicated living with the two conditions can be. Gastroparesis is a horrible condition on it's own but add diabetes to the mix and you've got yourself a roller-coaster ride. Try raising your blood sugar when you can't tolerate a drop of water. Explain why and how blood sugars can be extremely high but you haven't eaten all day or in some cases going days without food? Try guessing when to give insulin after you've actually been able to eat because you never know when the food will digest - 4 to 6 hours later or will it be 10 to 14 hours later or maybe it'll be sometime tomorrow, who knows? How many times a day would you like to check your blood sugars? How about 10-20 times like I do? And, how would you like having low and high blood sugar symptoms, that you've been used to for 26 years, start to change (having high symptoms when your sugar is low and vice versa) and/or you're not feeling symptoms at all? To say the least, it's frustrating!
One thing that doctors need to understand a lot more is the effects gastroparesis has on our hemoglobin A1C'S (average blood sugar level over 2-3 months). My sugars are erratic and are never stable no matter what I eat and even when I can't eat, they are always moving. Yet, my HbA1C is normal and so are most diabetic GPers? The numbers are a false negative which no one knows what the risks could be or what kind of complications could arise, if any. There are so many unknowns, and that is very scary as a diabetic.
Diet is another concern for GPers and of course diabetic GPers. Doctors need to know about GP friendly foods and guidelines and what type of supplements each of us need on a daily basis to make up for the foods that are not tolerated and when added nutrition -via feeding tube or TPN (Total Parental Nutrition through IV) are needed. In some cases gastroparesis patients are refused feeding tubes or TPN because they are overweight and could lose a few pounds?? -This is wrong, cruel, and torturous! Making people starve because they are overweight. I can't believe this happens but it does. I was in the hospital last winter for 4 1/2 months and I had this one doctor come see me after I had been in there for 2 months unable to eat, I asked her about putting me on TPN, she looked at me and said "you can handle a few more days of not eating" and basically walked right out of the room as her colleagues looked in disbelief as to what she said. I could not believe what she had just said to me. At that time I probably weighed 145-150 pounds (an average weight) and had been lying there without food or any type of nutrition for 2 months and had lost about 15-20 pounds at that point. She obviously knew nothing about me or gastroparesis. I felt alone, discouraged, mad and afraid because a doctor was okay with her patient starving to death. Needless to say I was disgusted with that doctor. I got a new doctor and was put on TPN not long afterwards...thankfully!
Something else doctors and the medical community need to know is that gastroparesis plays havoc on the body. My body is always in starvation mode. When I go through periods of "remission" and can tolerate most foods my body stores anything and everything I eat. My wardrobe ranges from sizes 3-13, depending on how sick or healthy I am. Gastroparesis also effects teeth and hair. My teeth are eroding due to all the vomiting and acid reflux. I have to use a special toothpaste and rinse to help preserve my teeth. Hair loss is also a part of gastroparesis due to being malnourished. Both of which can upset ones self confidence.
One symptom that doctors MUST start recognizing as being a large part of gastroparesis is pain. For some reason most doctors and people in the medical field don't associate pain with gastroparesis. This has to change! Not everyone experiences pain and that's because everyone is different. Not every GPer vomits, some can tolerate foods that others cannot and the same goes for medications and treatments. The pain is also different depending on the person, some get it in the small of their stomach, some at the top and center of the stomach, some GPers pain radiates to their back, and for some, the pain is only on their right side but not their left. No matter where the pain is, how bad, or how it feels, doctors don't know exactly what causes it. When patients are in pain a lot of doctors are reluctant to give anything regarding pain medication. This is understandable because narcotics slow down digestion and that's the opposite of what you want to do, so doctors will refuse them. However, what I believe, is that while I am going through an episode my stomach isn't working at all so the pain medications are not really slowing anything down even more. And from what I know about my diabetic GP is that if you get rid of the pain you get rid of the nausea which in turn seems to stop the episode and my stomach starts back up again. -if I go into the ER and get the right medications (nausea meds, pain meds, motility meds for the stomach) my stays can be as short as a few hours or just a few days, my episodes last an average of 10 days.
The biggest help to all of this is a doctor that listens...and of course understands diabetic and idiopathic gastroparesis! Don't get me wrong, there are amazing, understanding, and good doctors that know about gastroparesis but they are few and far between. The more awareness, education, and testimonies that are heard, the better off all of us GPers will be!
Symptoms and/or complications of gastroparesis include: severe nausea, vomiting, pain, erratic
blood sugars, malnutrition, excessive bloating, weight loss and/or gain,
fatigue, anxiety, heart burn, cramping, acid reflux, low energy
levels, loss of appetite, memory loss, hair loss, excessive burping,
constipation, depression, painful hiccups, body always in starvation
mode, decaying of teeth, and worsening of diabetic retinopathy. And I can imagine how gastroparesis affects other conditions like it does diabetes.
Then add in the side
effects from the 10 different medications I can be on at one time and needless to say, I can go through a lot in a day! The more doctors know about gastroparesis the better because it is becoming more and more common everyday with an estimated 5-6 million North Americans that have gastroparesis and who knows how many world wide.
Happy Tummy Day Everyone! :)
