Having motility issues, may be gastroparesis: Any thoughts?

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

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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

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Hi Joanne,
I am so sorry for everything you are going through. i know it is not easy. i started getting sick at the end of june 2021. i was inthe ER 3 times in less than a week. the did do a ct scan it showed i had inflammation in my stomach near my colon. doc didnt help just told me to go buy miralax. primary dr at the time wouldnt help. i spent most of my time in the ER. i was told by two surgeons after my hida scan i had something else going on besides my gallbladder. gallbladder came out jan 17 but i only had trouble being able to eat more after that i was literally losing almost a pound a day. i went back this past monday to the NP i saw a few yrs ago and he is better than even some of the MD's. he listened to me, like noone else has. he said he thought i had gastroparisis and prescribed reglan. i started being able to eat again. my local GI a few weeks ago was clueless. he wanted to put me on a antidepressent i said no. i will never go back to him or that hospital. i do have a appt coming up with a motility doctor at dartmouth. my NP said to make sure i tell him the reglan is working. im so nervous though. what if he dont believe me or help me? i should add my stomach emptying at this horrible hospital was a joke. they gave me half a tuna sandwich and i know your suppose to have eggs and toast. so of course they said it was "normal" even though i didnt empty one hour out of four. what hospital did you have luck with in boston? i am in whitefield, up north. but i am originally from mass. keep in touch Eileen

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I see now Dr. Hanley Williams, Lahey. She is a motility Gastro doc. March 16 th she gave me but that’s her deadline, not mine. Are you constipated? Every OTC med made me very sick with vomiting. Mag07 is magnesium and potassium and every three days gives me enough diarrhea to feel safe. I get colonic hydrotherapy in Bedford NH and she recommended it. I have not passed a form stool since June 2020. It just makes no sense.

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hi JoAnne, when i first got sick i was extremely constipated and i mean real bad. never experienced anything like it in my life. not so much now. especially with my gallbladder out. i see dr. curley virtually on march 7. i was moved up from april 18 but still have no idea how he will treat or respond to me. iit is a relief that my pcp believed me. the reglan for the most part has been working. i get extremely sleepy feel like sometimes i sleep half the day away as well as sleeping early PM. i dont know if thats part of it. i wish you good luck. its no fun being sick even less when noone believes you.

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I agree. I’ve tried every drug out there. I hope on March 16th Dr. Hanley has new thoughts. I think a nerve or anesthesia is what caused my bowels to completely shut dow. I don’t even care why anymore just want help to fix it and keep my colon.
I never suffered much after gallbladder especially bowels. I did adjust my diet for the first year but slowly added foods to see how they worked. As years went by my food sensitivities got better but I ended with a sensitive stomach to many foods. That is easy to live with for me. Keeping our gallbladder if possible always better. Going through all this with my large colon I have learned a lot and our gallbladders had an important roll in digestion. It was sort of like our storage tank for bile. Now we don’t have that so digestion changes more than I ever understood. I just hope that from one doctor to the next and the next someone will figure me out. Keep posting, blessings Joanne

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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

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