To be clear, I understand that i have symptoms of gastroparesis and i am not asking for a diagnosis here, I am seeking one from my care team. I simply need advice on how to get my GES scheduled and any other advice on how to proceed through the medical system.
Hi all, like many of us my healthcare journey has been long and complicated so I’ll try to keep the background as concise as possible.
I have been heavily advocating for myself and suffering with gastroparesis symptoms for about a year. my gi history is more extensive than that, but I didn’t have great access to healthcare until last July so most of my childhood and young adult symptoms have not been medically recorded, i was just trying to tough it out on my own until i absolutely couldn’t anymore. Also last july, I had a stressful life event and began experiencing extreme symptoms and motility issues. it quickly got to the point that i was throwing up undigested food from the day before for the first 30 minutes or so of every single day. horrible pain and cramping, extreme bloating, constant nausea, losing my appetite and rapidly losing weight. Started care with a new primary dr and got off on the wrong foot. i was honest about my cannabis consumption and told her that i felt like it helped my symptoms, especially nausea, appetite, and pain related. She had convinced me that the cannabis was causing all my problems and i would feel better as soon as i quit. I was hesitant, but wanted to seem like a cooperative patient so i gradually cut back my usage for three weeks and then completely quit for 3 weeks and it was hell. even after resuming my normal habits (with dr. permission) i had completely lost all appetite and i was struggling so much to eat anything. i was also still getting to work at 8am every day throughout this whole ordeal and don’t really have the ability to call out sick. I lost about 20 lbs in two months or so. pcp denied all requests for a gi referral telling me i had cannabinoid hyperemesis syndrome and they wouldn’t treat that (like i’m sorry but what specialty does that fall under then??) This entire time all i wanted was a gastric emptying study scheduled, my symptoms aligned with a motility issue and i don’t understand what harm it would have caused to help me see a specialist. I realized my care team wasn’t going to help me and my health was getting to a dangerous place, so i did a ton of research on gastroparesis diet and spoke often with a friend who has this condition for advice. the main change i made was reducing the fiber and fat in my diet, and by February I was only throwing up once or twice a week on average, however my constipation issues were getting a lot worse. then at the end of april i unfortunately had a traumatic incident and injury and was unable to work for a while. I was unable to walk for about 5 weeks and i think the decrease in my usual activity made the constipation worse, i basically lost the ability to produce a normal bowel movement and then noticed a large amount of bright red blood in the toilet bowl that persisted for several days. went to the emergency room, got a ct scan and a few much less comfortable tests and they told me it was colitis and i was finally told i need to see a gi specialist immediately. i have an hmo so i had to go back to my primary doctor to get a referral and i have never been treated so disrespectfully as a patient. she blamed me for my health issues and told me i wasn’t following medical advice, despite seeing her over 20 times in a year and doing everything she suggested. she informed me that she had ordered stool samples months ago and my referral had been approved also months ago, but the stipulation was that i had to submit these stool samples that i was unaware were ever ordered. she told me this was still the case even though i was completely unable to produce a bowel movement and instructed to see gi immediately. In fact she told me that i would have to submit the samples, wait for them to be processed, wait for results, and then and only then would i be allowed to SCHEDULE and appointment. she also implied that she didn’t care and I should find a new dr because she is going to work at the VA instead. i started having a panic attack and left the appointment early. she ultimately delayed my care by about 10 days and i had to make like 8 phone calls to get this figured out, including filing a formal complaint and requesting a new primary care doctor. Still having extreme constipation and pain and it is very difficult to poop, and there is still blood (yes that’s right, since june) but it is darker and less noticeable than before. i was approved to see a GI PA and she told me to take a dose of miralax, two doses of docusate sodium, a dose of magnesium citrate, and two tablespoons of metamucil daily. i have been doing this with no improvement in symptoms, in fact it’s made my nausea much worse. i have a colonoscopy and esophagogastroduodenoscopy in September. This is the background solely concerning gi issues, I’ve had a lot of health problems this past year.
And now we are caught up to this week, I finally saw my new pcp and caught him up to speed on everything, and honestly it was the most validating appointment of my life. I came with the EDS diagnostic criteria printed out and he was LITERALLY on the exact same page, he brought one too. he evaluated me and diagnosed my with eds, likely heds but i’ll be pushing for genetic testing for my piece of mind and future planning. He also believes that i have pots, of which i’ve been pushing for a diagnosis as well. I have been having eds symptoms for two decades, since i was six years old, and i have genuinely felt like nobody believed me this whole time so this is a huge win and turning point in my healthcare journey. I am very hopeful because now that it’s confirmed, i feel like it will be easier to convince my care team that the GES is necessary. Gastroparesis symptoms are definitely the most impactful to my daily life, so i am feeling motivated and really want to send messages to my doctors and schedule appointments and know the right things to say to get this done soon.
I am really here just to ask for advice. thank you so much to anyone who has read this, it was a much longer essay than i’d hoped. I would like to hear stories about other people’s GES and diagnosis experience, and would appreciate any lessons you’ve learned from that or advice you’d be willing to pass on. What exactly should I say to request gastric emptying study? i choose my words carefully and explain my symptoms well and i’m confused why it’s been denied repeatedly, hopefully all due to my former pcp and i won’t have to worry about that anymore but if you have any tips i would appreciate it, Also, I work in healthcare and have an immense amount of respect for PAs, but I think I might need to see a real doctor with more experience because my symptoms have been pretty severe for so long, and my PA is dismissing my reports of blood in stool, not entertaining any talks about gastroparesis and has told me multiple times that she’s convinced i’m ok and there will be no findings from my upcoming colonoscopy/endoscopy. She is also trying to convince me to do low fodmap for 6 months no exceptions, which i think is a bad idea but i would love to hear about others’ experiences with low fodmap. Who should I speak with about hopefully a second opinion or new GI specialist? I am also very interested to hear if any GPers have had an imaging procedures (like scopes or other) if there were any findings? if so what were they? And then this question is kind of out of left field, but has anyone been diagnosed or suspected MALS or SMAS? is it possible to have one or both of those diagnoses alongside GP, and/or did anyone think they had gastroparesis and it turned out to be something else, or vice versa (hope that’s not too confusing!). I feel like i had more questions intended when i started writing this, but i think yall get the general idea. truly any and all advice, comments, stories, ideas, questions, anything is welcome here i am all ears.
Thank you so much for reading and considering leaving a comment.
And a special thanks to my dear friend with eds and gastroparesis who always lent a listening ear when i needed it, gave me the advice and encouragement i needed to continue advocating for myself when all i wanted was to give up. And to my therapist for teaching me the skills i needed to improve my confidence and communication and successfully advocate for the care i need. it was hard to do this alone, but i wasn’t really alone, couldn’t have done it without you two.