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Unfortunately, I moved from a very sophisticated place (Long Island) to a place where you need to do heavy research to find a real doctor, so the things you describe in terms of the treatment you received do not exist here, I can almost guaranty that. There is a teaching hospital an hour away, I have two physicians there, and the director of Gastroenterology was highly recommended. When I'm done with this horrific colonoscopy nightmare end of October, I'm going to make an appointment with him to discuss the issues. Unfortunately, winter is coming and driving an hour in each direction on the Thruway is tricky because you never know when it will snow or be icy and the Thruway is notoriously filled with lunatics, especially the truck drivers. Apparently, the career truckers are more and more difficult to find and the drivers in their place are actually homicidal maniacs. Who knew this could happen.
I don't think there' sa PCP "integrative medicine provider" within a 3 hour ride of me. Downstate, we have NY Presbyterian extension and I think NYU Langone is somewhere in Westchester now. But basically, I left a place with state of the art medicine (NYU Langone has a huge facility on Long Island now, and there's North Shore University LIJ and a couple of others) for a place with corporate "doctors" who resemble AI robots but don't know as much.
I don't have SIBO. I have none of the signs. I have a slow bowel which is most likely related to insufficient water intake as I'm totally unable to drink lots of it. And age, of course. Also, can't take any supplements with fiber. Fiber is what caused the bowel inflammation last December, I started eating peas with dinner, lots of peas. Miralax helps that along. I know at least one person who has been taking Miralax for a very long time, but she's 94. I have 20 years to go, hopefully not, since my quality of life at this point is non existent. I wish I could take your recommendations. Honestly, the Nutrition Center across the river here is still stuck in a community hospital in a quaint rural Mid Hudson Valley town, i.e., medical care stinks. I really don't trust them. I've used Calm, did nothing. The problem here is that I can't stop the Miralax to experiment with magnesium citrate because I will get constipated as a reflex to withdrawal and then the hemorrhoid and anal rim discomfort will get worse and I'm more likely to go off the Rhinecliff Bridge.
Thanks for your comments, very educated, and very good ideas, but might be impossible to achieve where I live. I'll do some research.
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Ahh, I see. Believe it or not, although I live in a large metropolitan area, it has taken me years to amass the resources I mentioned.
I’ve had chronic pain for years at this point, and the default has been having to do research and advocacy on my own. It’s frustrating for sure.
There is a type of SIBO (methane dominant) that causes slowed motility and constipation, and it is harder to diagnose via breath test than the other one. But if you feel you’ve ruled it out, totally respect that.
Most of this I learned from various books and online resources if finding a provider is out of reach. They specifically focus on patient education and self management because it’s so difficult to get help for gut issues. For example, if you were interested in abdominal massage to help motility, there are YouTube videos by pelvic PTs available online.
I’m also thinking of one author who’s a GI dietician who structures her books as diagnostic quizzes similar to what she uses in the clinic—her books helped me. And many GI dietitians provide services virtually and across state lines, which insurance can cover unless you have Medicare. In that case, Medicare stupidly doesn’t cover a dietician except in highly specific cases. Cash pay adds up but someone who’s the right fit could be really helpful. Integrative or holistic doctors also tend to offer virtual visits, especially if you find someone in-state.
There’s even a GI dietician/psychologist team I follow who just put out a book and started a podcast focused on actionable tips. I’m happy to list some of them off in case you want to look into them for your research. I can send some along when I’m in a spot where I’m sitting still, but no obligation.
I’m not familiar with your condition where fiber causes inflammation, but Sunfiber specifically is IBS-friendly and has been shown to help both diarrhea and constipation, and improve the amount of good bacteria in the gut. It’s very well-tolerated (and I say this as someone who usually doesn’t tolerate things that are well-tolerated), but it sounds like you may have a different condition.
With hydration, I have POTS, which requires a lot of fluids but like you said paradoxically GI symptoms make it hard to take in fluids. So I rely on electrolyte supplements (Klaralyte is in capsule form) and electrolyte solutions—Skratch Labs and Tailwind make good low sugar (real sugar is required for electrolyte solutions to work properly) and sugar-free versions without fake sugars that don’t taste horrible. The electrolytes help your body absorb more water (as opposed to losing it through urine and sweat) so it’s especially helpful for me because I struggle to take as much in. I’d like to think it also helps the constipation.
It’s super frustrating, but there are options.