Gastroparesis or slow modility colon

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.

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.

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?

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.

@celia16
I just read your Gastro is on the Duke system. So is mine - as well as my Rheumatologist and my Primary care. I access Duke in Burlington through Kernodle clinic. Where are you plugging into Duke Health?

Alright! I think I’ve seen all Duke Gastro at big Duke clinic in Durham, except my colonoscopy, which I had at Duke Raleigh hospital in Raleigh.

I see Duke Dermatology at Patterson Place, Durham, including Moh’s surgery at Dr. Cook’s office. ENT at big Duke, Endocrinology big Duke, as well as Duke Ophthalmology. I can’t recall where Ivsaw Duke Orthopedic. I’ve been busy. Lol

My first appointment with Rheumatology isn’t until August, but I think it’s at big Duke.

My primary is not Duke affiliated.

Here in Burlington some are Duke affiliated and some are Moses Cone - a Greensboro organization.

I am hoping you are still monitoring this site and can tell me if you were ever able to find answers and relief? I too am suffering in the same way you are with specialist and the ER doctors telling me there is nothing wrong. Waking up every day with the stomachache and having it all day long says something different. I am truly hoping you are well and were able to get manageable help. It is a miserable way to live.