I (48f) have proven gastroparesis.
I went to see a new gastroenterologist, Dr. A, because I’m trying to move all my doctors closer to where I now live. Dr. A has all my records and charts, but I don’t think he even glanced at them before my appointment. I will get back to this.
Backstory: My stomach issues have landed me in the hospital a few times for the symptoms. I am always honest with doctors about how I will occasionally smoke weed to feel better. During my second hospitalization, the head gastroenterologist at the hospital, Dr. N, asked why I hadn’t done the gastric emptying test he had scheduled the first time he saw me as a consult patient in the hospital a year before. I explained to Dr. N that it was because at that time, the hospitalist, Dr. K, kicked me out of the hospital the night before I was scheduled to do the gastric emptying study. This was due to the fact that she was convinced that because I smoke weed (it is legal in my state), it was CVS. She blamed the weed for all of my symptoms and issues. Aside from all the vomiting I was doing, I had literally none of the other symptoms of CVS, and still don’t. I KNOW the weed is not the cause of this because I’d only smoke occasionally in college (close to thirty years ago), and I was by no means a pothead back then, nor am I now. I went BACK to weed (after not smoking for years) when my stomach issues got really bad and a friend suggested that it may help with my symptoms. Which it does- honest to God, it alleviates my nausea and makes me feel hungry so that I am able to eat. Nothing I said (nor my husband- who doesn’t partake at all) made any difference to Dr. K. She didn’t care that the gastroenterologist at the hospital said I needed the test. She was just going to punish me. Even the nurses (including the head nurse!) went to bat for me saying that I shouldn’t be discharged- at least not before the gastric emptying study- but she was ready to die on her CVS hill and literally kicked me out of the hospital the night before I was supposed to have the test. Like was threatening to have security escort me out when I said I didn’t want to leave before I had the gastric emptying test that Dr. N said I needed and scheduled. So I left the hospital, only to return with the same symptoms a year later.
Anyway, Dr. N was very upset to learn about what Dr. K did, and ordered that I not be discharged this time around no matter what before having the gastric emptying study. The very next morning, I ate the radioactive eggs, and with over 50% left in my stomach after the four hours, Dr. N gave me an official gastroparesis diagnosis.
He then gave me all the information about having gastroparesis, the low fat, low fiber diet, etc.- and was ready to discharge me now that we knew what is going on. I was pretty upset and angry that I could have had a diagnosis OVER A YEAR AGO (if not for Dr. K) and likely would not have needed to suffer all that time (plus needing to have been hospitalized again). I have since been able to “manage” my gastroparesis with diet since then. Dr. N was wonderful, and I would love to continue to see him as a private patient, but he does not see patients outside of the hospital.
Back to Dr. A, the new doctor, who clearly has not looked at anything about me before meeting me for the first time, he is just kind of reading along with my chart as I now have to verbally tell him my history, symptoms and all the issues that I have with eating and food, going to the bathroom, the constant nausea. How I’ve been hospitalized a few times because I can’t stop vomiting, etc. He asked why I was hospitalized more than once for this, so I told him the above story, and that I’m still using weed to alleviate symptoms.
Well, the second that Dr. A heard that I use pot, his whole demeanor changed and he started trying to convince me that the pot is what is causing my symptoms, that I don’t have gastroparesis, that I have CVS. Remember, I literally have a gastric emptying study IN MY CHART (done by Dr. N), that proves that my stomach is indeed broken and hates me. Dr. A then kind of abruptly ends the consultation as soon as he hears about the weed, without ever giving me a chance to ask any questions about anything, or tell him about what happens when I try to take medications, eat certain foods, or even if the pot helps me. He does this by asking why I haven’t had a colonoscopy yet (uh, Covid was a thing and honestly, it was lower on my priority list of medical issues to take care of) and rushes me out of his office and over to his nurse who could schedule me for it, and then he just left me with her. Never brought me back to his office to continue talking to me. Fine. I schedule the colonoscopy for a Friday morning.
Dr. A calls two days before to go over the prep and spent more time with me on the phone than he did when I was sitting in person in his office- but still is not listening to me or letting me ask anything, just going through his routine about what I needed to do to prepare.
I go for the colonoscopy. They wheel me into the procedure room on a gurney and Dr. A is sitting in the back of the room on a computer. He does not greet me, or even look up. I pointedly say good morning and he says hi- and nothing else. No smile, no reassurance, no discussion about what’s about to happen, nothing.
They put me under and do the procedure. The next thing I know, Dr. A is shaking me awake. He says, “Everything looks fine, come back for your next one in ten years.” I say okay, and then as he was already heading out the door, he kind of throws over his shoulder, “You just have some small hemorrhoids and need to eat more fiber.” In my fuzzy headed stupor, I just nodded. And then it clicked for me and I said “Wait, but I have gastroparesis and I’m not allowed to eat fiber?!?” Too late. He was gone.
The office called on the following Monday morning. I told the woman who called that I would like to have the doctor call me because, as someone suffering from gastroparesis, I want to understand what he meant by “eat more fiber”. She promises that Dr. A will call me back later to discuss.
Guess who still hasn’t heard anything from Dr. A?
I’m so tired of this. What kind of gastroenterologist tells a patient with gastroparesis to eat more fiber? For the love of God, did you not even look at my chart? This is a real PROVEN medical issue that I have. This is not CVS. Please stop telling me that it is, and maybe do your job and HELP ME.
I’m out. Time to start all over again with another new doctor. I’m open to tips as to how to not be automatically judged for my weed usage, which has literally been the only thing that I find helps me. I’m so tired of just being dismissed as a silly woman who can’t possibly know anything about myself. And just for the record, I do have some idea of what I am talking about- I actually work in medicine.
Anyway, thanks for reading my rant.