Gastroparesis or slow modility colon

Posted by teresabarton @teresabarton, May 19, 2023

I was diagnosed with gastroparesis with one doctor and he sent me to a bigger university for a pacemaker.
The next university said it was not gastroparesis. This doctor had me do a Sitz Marker Test and after 7 days, I still had 58 markers left in my upper colon. He diagnosed me with a slow modility colon.
For the past 9 months I have (and getting worse) severe abdomen bloating, cramps, pain, nausea, and now lower back pain. I have been on a gastroparesis diet for 6 months with no relief. I only eat frozen yogurt and cracker for lunch. I wait to eat a more bland diet when I get home from work, knowing the bloating and nausea will get worse.
I now can only wear dresses, no pants, due to the extreme bloating and then discomfort of anything tight around my abdomen. Now I have gained 5 pounds in the last week with the same diet I have been on for 9 months.
My doctor now has me on miralax and apple juice. (During the last 6 months I have been with him, I have developed constipation in the past 3 months. Something I have never had in my 60 years of age.) I can't drink apple juice or anything except water due to the fact it also makes me nauseas.
I have tried Reglan, which made me suicidal, and erythromycin, which did not help.
Anyone have these same symptoms or and suggestions of what to do next. The doctor said I may just have to live like this. I am a very upbeat, positive person, but I can't imagine there is not something wrong to start the symptoms just in the last 9 months. I will take any help! Thank you so much.

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@teresabarton

Thank you everyone! You all make me feel better. I have a phone appointment with Mayo early July and visit with them right after. So I'm praying to get answers there.
I do drink lots of water and do not take any fiber supplements. Also, I do take probiotics everyday.
My husband and I are very active. We have a mowing business, and love kayaking, etc. We don't sit inside much.
The low residue diet was interesting and I going to compare that to the gastroparesis diet that I am on.
I have no clue why this motility started, and no answers from doctors either. If I have missed something, please remind me. I'm open for any suggestions.
Thanks again for helping me out. It is nice to know I'm not in this alone. This has definitely been a life changer for my husband and me. We have always been so active and healthy, but praying God will help us through.

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Hello @teresabarton,

As it has been a while since you last posted, I was wondering how you are doing. You were going to have a phone appointment with Mayo Clinic last summer. Did you get any helpful information from that appointment?

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How is gastroparesis or slow motility diagnosed? Is it based on a particular test or symptoms? If one is able to have multiple BMs daily with the aid of Metamucil and Miralax, could they still have these conditions? Do you always have pain with these conditions?

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@silver99

I think my methadone is the cause of my issues . I’m trying to get off & have gone down a lot & am only at 30 mg now but I’m struggling bad . My stomach constantly hurts & feel tight & full even when I haven’t ate anything .. idk what to do anymore the drs don’t care about me I’ve been to so many & they don’t even try to figure out what it is . Imma get some miralax today & I’m really hoping that helps .

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opiates and methadone, clearly, perhaps the only two things that could help, or three, walking, walking, walking, and/or a tense unit, gentle placement of the electrodes, and perhaps a vibrating pad under the small of the back, and get a massage of the tummy, if you can, or just gently massage your own tummy, not too hard, but not too soft, and kinda pull and squeeze and...stimulant suppositories, but not daily. but walking walking and walking, or a swimming pool, and maybe throw an online yoga class in there, at least your moving and stretching and your small and large bowels kinda like that kinda stuff.

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@dragonfly123

opiates and methadone, clearly, perhaps the only two things that could help, or three, walking, walking, walking, and/or a tense unit, gentle placement of the electrodes, and perhaps a vibrating pad under the small of the back, and get a massage of the tummy, if you can, or just gently massage your own tummy, not too hard, but not too soft, and kinda pull and squeeze and...stimulant suppositories, but not daily. but walking walking and walking, or a swimming pool, and maybe throw an online yoga class in there, at least your moving and stretching and your small and large bowels kinda like that kinda stuff.

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I do all that already besides the electrode thing . Maybe I should try that . Yoga too ig lol . I’ve been doing special massages to help constipation but I’m scared I have an impaction I can’t remove myself

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@dragonfly123

opiates and methadone, clearly, perhaps the only two things that could help, or three, walking, walking, walking, and/or a tense unit, gentle placement of the electrodes, and perhaps a vibrating pad under the small of the back, and get a massage of the tummy, if you can, or just gently massage your own tummy, not too hard, but not too soft, and kinda pull and squeeze and...stimulant suppositories, but not daily. but walking walking and walking, or a swimming pool, and maybe throw an online yoga class in there, at least your moving and stretching and your small and large bowels kinda like that kinda stuff.

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But what do you mean by it could help ? Opioids are the entire reason my stomach is like this lol

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I walk from 2-3 miles 6 days a week, plus stair stepper and elliptical. Plus, have a very fiber filled diet, plus Metamucil, plus Miralax, plus lots of water, plus fish oil, plus healthy fats….so, idk. It’s a mystery. It hit suddenly. Went from normal several times a day to nothing.

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@celia16

How is gastroparesis or slow motility diagnosed? Is it based on a particular test or symptoms? If one is able to have multiple BMs daily with the aid of Metamucil and Miralax, could they still have these conditions? Do you always have pain with these conditions?

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Hi there, I was diagnosed with slow transit constipation through Sitz Marker test. My symptoms were persistent constipatuon that got worse over time, bloating, early satiety, occasional nausea. I didn’t have much pain really except if badly constipated I’d get rectal pressure/pain. A gastric emptying scan is what’s typically done to accurately diagnose gastroparesis. I know with slow motility I’ve been advised to limit fiber intake. No Metamucil, Benefiber, etc. I used a combo of OTC lax like Senna+ , Bisacodyl, & if needed, liquid magnesium citrate. I tried increased hydration, increased exercise, chiropractor, multiple prescription meds including Linzess, Amitiza, & Motegrity. They had varying degrees of effectiveness, some, mainly Motegrity, for me had awful side effects that wouldn’t go away and was as bad as what I was trying to treat. It was unfortunate because that med was fairly effective but I couldn’t function. Last January after struggling for several years I had a loop ileostomy done keeping my colon intact. It’s been very helpful. It doesn’t resolve dysmotility but helps manage it considerably. Usually STC can be managed without surgery. I think my situation was more extreme and I have post viral Dysautonomia so that contributes to nerve dysfunction in my stomach my GI doc told me. I would caution using extra fiber until you know more and if you’re still having trouble ask your doctor about a Sitz Marker test. Also try to consult with a second doctor if possible. The biggest lesson I learned with GI health is how important it is to get more than one doctors insight, if possible from separate health care organizations.

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@northstar33

Hi there, I was diagnosed with slow transit constipation through Sitz Marker test. My symptoms were persistent constipatuon that got worse over time, bloating, early satiety, occasional nausea. I didn’t have much pain really except if badly constipated I’d get rectal pressure/pain. A gastric emptying scan is what’s typically done to accurately diagnose gastroparesis. I know with slow motility I’ve been advised to limit fiber intake. No Metamucil, Benefiber, etc. I used a combo of OTC lax like Senna+ , Bisacodyl, & if needed, liquid magnesium citrate. I tried increased hydration, increased exercise, chiropractor, multiple prescription meds including Linzess, Amitiza, & Motegrity. They had varying degrees of effectiveness, some, mainly Motegrity, for me had awful side effects that wouldn’t go away and was as bad as what I was trying to treat. It was unfortunate because that med was fairly effective but I couldn’t function. Last January after struggling for several years I had a loop ileostomy done keeping my colon intact. It’s been very helpful. It doesn’t resolve dysmotility but helps manage it considerably. Usually STC can be managed without surgery. I think my situation was more extreme and I have post viral Dysautonomia so that contributes to nerve dysfunction in my stomach my GI doc told me. I would caution using extra fiber until you know more and if you’re still having trouble ask your doctor about a Sitz Marker test. Also try to consult with a second doctor if possible. The biggest lesson I learned with GI health is how important it is to get more than one doctors insight, if possible from separate health care organizations.

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Ok. I’ll get a second opinion. Right now there are 3 gastroenterologists at Duke who are monitoring me, including the surgeon who was examining my hemorrhoid, regular gastroenterologist who I saw for constipation and the gastroenterologist who did my colonoscopy in 2020. They all have followed my care. I’ve been PMing them through the portal. They told me to take take the Metamucil and Miralax, as well as the Lubiprostone. I have stopped the Lubiprostone for now, since I had no rectal pain until I started taking it. Not sure if there’s a connection. But, if I don’t take the Metamucil and Miralax, I won’t go….and I fear that a lot, due to a thrombosed external hemorrhoid I got last year! It was HORRIFIC.

Thanks for your insight. I’ll see if my insurance will cover another opinion. Also, most gastroenterologists require a referral. Will my primary give me another referral? Idk. I also have health anxiety. I’m being treated for that too with talk therapy.

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@hopeful33250

Hello @teresabarton and welcome to Mayo Clinic Connect. I can understand your frustration. Having one doctor giving you a diagnosis of gastroparesis and then another doctor not agreeing with that must be confusing. As mentioned by @sallyw133, another opinion might be a good plan. Also, as @cpd54 mentioned diet, liquids and exercise are important things to add to your daily routine.

I have what's called, slow transit constipation. I have many (but not all) of the symptoms you mentioned. After reading many of the comments of others who have gastroparesis, I've discovered that a low residue diet has worked well for me. In addition to a low residue diet, I also have a probiotic daily, and take Miralax, twice daily and a Colace at night.

Slow motility can be caused by many factors such as neurological conditions, surgeries of the digestive tract, diabetes, etc. My problems resulted from several surgeries of the digestive tract. Do you know the cause of your motility problems?

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Teresa-I was about to post my situation here, but read your reply to this post and wanted to talk more with you. I have had many procedures done after I had my gallbladder removed 10 years ago. Sphincter of oddi dysfunction intially, with 8-9 ERCP's performed with stents. In '19 I had the major surgery performed due to excessive bile build up in my stomach-the bile duct was detached from the stomach and reattached to the small intestine. I now go through periods of stool build up in my system that mimic what this person describes...even the pain radiating into the back. Every CT scan I have when I have an episode shows stool build up even when the scan was done after taking Linzess. Colonic cleanses have helped me the most, but I just cycle through this way too often at age 60. Have you ever heard of success
with the implant that helps to contract the muscles in the GI tract to prevent this slow motility?

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@celia16

Ok. I’ll get a second opinion. Right now there are 3 gastroenterologists at Duke who are monitoring me, including the surgeon who was examining my hemorrhoid, regular gastroenterologist who I saw for constipation and the gastroenterologist who did my colonoscopy in 2020. They all have followed my care. I’ve been PMing them through the portal. They told me to take take the Metamucil and Miralax, as well as the Lubiprostone. I have stopped the Lubiprostone for now, since I had no rectal pain until I started taking it. Not sure if there’s a connection. But, if I don’t take the Metamucil and Miralax, I won’t go….and I fear that a lot, due to a thrombosed external hemorrhoid I got last year! It was HORRIFIC.

Thanks for your insight. I’ll see if my insurance will cover another opinion. Also, most gastroenterologists require a referral. Will my primary give me another referral? Idk. I also have health anxiety. I’m being treated for that too with talk therapy.

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I’m so sorry you’re going through all this! That sounds awful. I would maybe slightly decrease fiber, don’t stop altogether. It’s never good to stop anything completely without talking with your doctor. I want to make sure to add, this is just my experience and insight to share but it may not apply. It’s just a hunch.

You could try to call your Duke GI nurse to discuss things or set up a tele health or in person appointment w/current GI docs to discuss what’s going on, bring up slow transit-ask if they can rule it out (with Sitz Marker) Sometimes after awhile the messaging with a doctors office gets difficult and has to be done different because it’s a lot of info to piece together on both sides. Before calling the nurse or having an appointment make notes to mention as far as what’s going on, what helps, what triggers.

I would try to see if you can have a further conversation with Duke. If they’re not open to your concerns or your gut tells you to try somewhere else, I’d ask your primary doctors office for a referral. Duke is good no doubt, but I think it’s important to emphasize to your primary that if you’re not getting answers you would like to get fresh input if insurance allows. Sometimes that requires an out of network referral.

If you do pursue a second opinion, keep in mind it doesn’t mean you have to give up care at Duke/or where you’re established currently. I have gone outside my current digestive health organization for a second opinion appointment then continued care in my original organization. If I felt strongly I needed to switch I would have but I took the information I gathered and was able to communicate what I needed with my current organization which is closer to my home.

I know it’s all overwhelming. It’s like a job. We put a lot of time and effort into feeling better. I see a health psychologist now, I I think counseling of any kind is good along with self care. I’m glad you do therapy too and see the value in it.

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