Hi @eileenb1022, you sound like you're at the end of your rope. I know there are others here who can relate, like @lily21 @brendaharvey @mgeller604 @ken82 @brandywine8875 @1950 @snapdragon20 @donnacarp @mothermary1 who have shared in these related discussions:
- Gastroparesis: https://connect.mayoclinic.org/discussion/gastroparesis-9/
- Gastroparesis Diet – Questions, Suggestions, Tips: https://connect.mayoclinic.org/discussion/gastroparesis-any-body-have-any-suggestions-about-diet/

Like you, Eileen, I'm encouraged that you have a referral to a motility specialist. What questions are you preparing to ask the doctor?

The only good thing the Motility Clinic did for me was sending me to Physical Therapy and consult with a surgeon. Haven’t heard from them since!

i'm really sorry for how i sounded last night. i was in such a bad state from noone listening to me or believing me. i didnt even want to go to my pcp this morning but so glad i did. i had been seeing someone else so i hadnt seen him in several years. but he was always great. he really listened to me everything i went through. he said he could tell i lost weight and he thought i did have gastroparisis. thank god. he put me on reglan and wants me to try to eat and come back in 2 weeks to see if the reglan helped if it did he said he would call the motility dr im suppose to see although he said they dont usually like to hear from them(regular doctors) i was able to eat. i do have stomach cramps but that happens after i eat due to not having a gallbladder but yes so happy someone believed me. at this point im not even worried about the motility doctor!

my appointment with the motility doctor has been moved up to march 7. im excited but nervous he wont believe me even though my primary did and put me on reglan. its working where i can eat. before that i couldnt eat and the scale just kept dropping. my pcp said to tell him the reglan is working. hope your appt went well.

Hi, I also live in NH, Hudson. I’ve been through the ringer since June 2020 after ACDF 3 fusion surgery at Beth Israel. I started at Granite State Gastro and got absolutely no place after months. I even was sent to a doctor in Boston in error because PA misread results. I’m very forgiving. I retired from medical and everyone make mistakes. I ended up in March 2021 at Gastro in Brighams. After surgery my bowels completely shut down and I mean completely. Granite state did colonoscopy, sixth marker study which I failed completely and had a polyp removed during colonoscopy. Then I had mr defography. They tried one med after the other from prescription to OTC. I did decide to go to the Gastro dept at Brighams. Thinking bigger hospital and better than NH. I started with analrectal manometry, SIBO test, NM Gastro emptying and then Fl UGI series with small bowel. This entire time I was still taking massive doses of laxa and prescription drugs. I started pelvic floor PT as well because I had poor push in rectum. I’ve done that six months. I have no gallbladder, 15 years. I’m hypothyroid, taking meds. In the end September 2021 I was scheduled for total colectomy. I couldn’t do it so I canceled. I was and still am terrified it will just cause another issue. I decided to go natural, weekly colonics, mago7 supplements nightly, visceral massage and a naturopathic doctor. I’m off foods that I’m sensitive to also no sugar or dairy. I was great for few months but having trouble again. Diagnosis, severe colon motility, push issues, posterior peritoneocele. They say remove colon and I won’t be constipated or live this life. I’m living this life. Seeing a motility doctor now at Lahey for another opinion to see if she has her own thoughts. I have no reason why this just stopped. Keep in touch.. joanne

Sorry, joanne again. I’m at Lahey March 16th. I saw her once she said go 3 more months with my natural way and let’s do sitz marker study again and possibly repeat other tests done late 2020 to look for change. I have been told through seeing so many who take this natural approach to try Dr. Mark Detweiler in Londonderry NH. If Lahey still suggests surgery as my only option I will go see this Gastro doctor myself in Londonderry. I’m not removing my colon. In case your wondering I’ll be 67 in March, have also lost a lot of weight. During all these tests found pancreatic cysts that can be watched yearly. I’m being watched at MGH pancreatic cyst clinic. Joanne

i have gatroparesis with poor synchrony of muscle function. my gp also keeps telling me to take miralax but it takes 3 days for miralax to maybe work. i take reglan 3 times a day as well as senna and colace. (ok'd by gi doctor) but there are times when i did not have a bowel movement over a week. it gets scary as i don't want a blockage or a mega colon to develop. recently i added probiotics. i did some research and found one that was well recommended. it has helped me. less nausea and more bowel movements. i'm just tossing this idea in as it may be of some help. good luck!

Hi, I don’t get sick to my stomach if I stay away from OTC meds. I take mago7 which at least gives me diarrhea so I’m getting rid I think of something toxic in my colon. It does help with constipation but doesn’t sound for either of you that’s your main concern. I take a prescription probiotic called VSL#3 probiotic medical food. The company is Living Shield. This was given to me from the naturopathic doctor. I would think about researching a visceral massage person. In NH I see a woman in Merrimack. After every surgery we take care of a problem only to later down the rode get a lot of scar tissue. When this happens it creates another issue. I got sick from my gallbladder, never having stones. I had pancreatitis. The Hida Scan said non functioning . This was 15 plus years ago. I wish I had done more research in treating the pancreatitis and then see how my gallbladder was but back then it was remove the gallbladder. I have bile duct issues lately. The duct that stays even without your gall l for me is always on overfill because my “storage tank” the gallbladder isn’t there. That duck is constantly very wide. Recently MGH did an MRI and thought a Choledochal cyst. It was not and not a tumor just a backup of bile widening the duct.
I’ll never point a finger at anyone I just want an option other than remove my entire colon. I believe I’ll find one. I’ve gone from doc to doc, sent to other natural docs and get new ideas. I’ll keep searching. Also I do daily castor oil wraps with heat. All my suggestions you can google. Maybe something I’ve tried will help. Keep chatting…Joanne

Morning, I took mag calm for a long time. What I have learned, is mag calm is a form of carbonate which when added to water changes it and it’s absorbs very quickly in our body. I took it daily for a long time but it never caused a bowel movement or any diarrhea. I need something to keep my bowels constantly moving even if it’s diarrhea and it has to be three days a week or I need to do a cleanse as if prepping for a colonoscopy. Mag07 is oxygen based used as a cleanse, I believe mag oxide works better for use if you suffer constipation. It’s mag oxide per cap is 1,035 and it has potassium which helps for dehydration. I’ve learned their are quite a few mag supplements and powders on the market.
I think you need to research which works best for your situation. What other tests have you had for Gastro problem besides emptying test. Joanne

Eileen have you had the Smart Pill test. I did Sitz marker study but Smart Pill is something I’m asking for in March. I have heard it can get stuck but does not happen frequently. I think it could be an excellent test for you. Google it and see what it looks for. I do lots of research and go in with full knowledge to a doctor with things we might try. I go in being very informed so doctors understand I’ve been this way since June 2020 and all they can suggest is total colectomy. I feel more can be checked. I think it’s a nerve issue. Is vagus nerve anything you have had checked. It’s gag redux test. Pretty simple to get through. Our digestion starts in the cranium. I’ve learned so much in two years and have filled many journals. Good luck, Joanne