Help with Ineffective Esophageal Motility

I totally agree! Thankfully I found an excellent gastroenterologist. I had severe Dysphagia, and in the last 12 months have had 6 EGDs w/Dilations & biopsies, which resulted in the diagnosis of Lymphocytic Esophagitis. I've been on Pantoprazole & Hyoscyamine for a year to no real avail, however I was was started on Fluticas HFA AER 220MCG oral corticosteroid 3 months ago that started helping reduce the stuck food & resulting vomiting that was occurring with every meal, and swallowing of all pills. It was really horrible. The last year I've cut out all caffeine (by instruction), and haven't been able to eat any meats, raw veggies, salads, pasta unless cooked to death. Had gotten to the point I couldn't eat mushed up scrambled eggs nor mashed small curd cottage cheese, etc. With the Fluticas, I'm not having food stick & throw up very often now, whereas it was every meal every day. Miserable! Eliminating the caffeine and most dairy has really reduced my inflammation considerably and I'm able to take fewer pain meds for severe orthopedic issues. LE is considered a chronic, long term disease, so I don't expect to "get over" it, but I'm certainly grateful that my gastro put me on the inhaler. It has changed my life. I still have to be careful about the temperature of water & hit tea, lukewarm and not extra cold or hot as I like them. My gastro is a conservative physician, and I appreciate that. That's why he didn't resort to Fluticas (or the alternative Budesonide, which he said was "really nasty"...his words!). He never tried to overstretch my esophagus during the EGDs, and has been as frustrated as me that he wasn't able to get it more open during each of the 6 procedures without causing tearing & bleeding. Please find a GOOD gastroenterologist that you trust (I found mine after asking close friends who they saw, and got several really good recommendations from their experiences, so I trusted him going in, and he's proven time & time again that he's really good). Make sure you find out if they are trained and experienced in esophageal & motility disorders. Two things that have changed my life in the last 15 months is the severe Dysphagia and the resulting dietary changes I've had to make. I've had to give up most of my favorite foods (like Jimmy John's sandwiches, pizza, etc.), all spicey foods, etc. Being a lifelong lover of all foods & ethnicities, it's a major life change to be sure. But over time you learn to adjust. It's just not worth attempting to swallow foods that I know will stick & come back up. At first I relied on ice cream, cream of chicken soup, and chocolate pudding cups. Obviously not a healthy diet, and didn't help with weight loss either. Now I just have to be very careful... example, I recently tried Madras lentils that had smashed and whole beans...I could eat the smashed parts, but not the beans because of their skins. So now I'm trying to learn how to de-skin beans so I can eat them as protein substitutes for the red meats, pork, chicken, etc. that won't go down. I'm sorry this is so long, but I want to give you what I hope are helpful ideas in how to manage your symptoms. Please, seek help from a good gastroenterologist! It makes all the difference. No doctor should ever tell you that you just have to "live with it". To me, that's insanely arrogant and borders on malpractice. I had all the manometry & barium tests in 2020 when I first started experiencing issues, but with Omeprazole they mostly subsides until last Fall. If you haven't yet had an EGD (different from an upper endoscopy), please get one as soon as you can (again, from a well-trained knowledgeable gastro), and see what it shows. Sounds you will need the dilation as well with it...and ask them to do biopsies at the time. That way you'll know definitively if something serious is going on. It could be Eosinophilic Esophagitis, or like me, the much rarer Lymphocytic Esophagitis. Scientific research thinks it may be a subset of EoE, but aren't sure. It's also considered an autoimmune disease. I've had the autoimmune disease Pulmonary Sarcoidosis since 1996, but there's no research yet that the two are related. Both are rare. LE is present in 0.01% of the population, so unless you have a knowledgeable gastroenterologist, they may not know about it. I know I keep harping about finding a good gastro, but it is unbelievably important to be treated by someone who knows about rare diseases and how to treat them. I wish you all the best in finding a good doc, getting the appropriate tests, and figuring out the root cause of your problems. It's hell, believe me! I don't want anyone suffering what I have for so long. I'm grateful that I don't have a life-threatening disease like cancer, etc., but it's no fun managing these diseases either. They are life-altering. My prayers are with you.

Hi @nascar4433
What is the difference between an EGD and upper endoscopy?