Need to get off miralax

@user_ch783e933 I’ve read your various comments as well as your post and I’m sorry you feel so very poorly in many ways stemming from your digestive system being out of whack. Awful.

I can only speak from my own experience having had a huge amount of antibiotics after HIPEC and a colon resection as part of the cytoreductive surgery. Messed up my digestive system big time. I also was given miralax to help get my system working, but I wanted to try and get my system back to normality without relying on anything but food and miralax only helped with motility but not the general feeling of being unwell.

It didn’t take as long as I thought it would. I still have to be very careful not to have too much fibre nor too little. My go to diet includes fish, seafood, scrambled eggs on toast, spinach, broccoli, peas, cauliflower, mushrooms, sauerkraut, quinoa, black pepper and other spices, blueberries, apple, carrots, hummus, Greek yoghurt etc. Mainly pretty bland but so high in nutrients and prebiotics as well as probiotics.

What was the final bit of the puzzle in getting back to normal was natural steel oats porridge! Done in the microwave with mainly water plus a bit of milk, a dash of Himalayan salt and stevia. Then when cooked, a dash of butter stirred through just before serving. Heavenly and its soluble fibre is magic for my system.

I rarely need to use a laxative of any sort now. Drinking heaps of water during the day has been vital.

All the best and I hope you can experiment with the various suggestions people have given you and see what works for you 🙏

I really can't mess around with probiotic and prebiotic stuff, it just doesn't work for me. That acidophilus I was taking is still affecting me, it takes a week or two for the body to stabilize after that, big mistake. And fiber is a problem for me as well, too much is a cause of gas and thin stool. So I have it down to a science but I've eliminated so much from my diet that I have lost weight and don't really care if I eat or not. Now it's starting to affect my balance, I'm feeling a little dizzy and I know it's probably insufficient nutrients.

I'd be interested in the YT channels you mentioned. I know about abdominal massage, I've been using it a while, it's very intuitive actually. But the book you mentioned also, where it's a diagnostic question platform, I'd like to read that as well. The Nutrition Center in my area would take my insurance, and I'm on Medicare/Medicaid. I just don't trust them. I don't want to start relying on supplements and senna and all that stuff, it might mess with my digestion and make everything even worse. I honestly don't know what to do with that colonoscopy prep, it's going to kill my rear end and then it's going to throw off my normal bowel performance for at least days. It's getting to the point where I have to remind myself that dying from colon cancer is worse than living as I am now but that argument is getting weak.

Thanks.

That’s why I found it more helpful to search specifically for a GI dietician. People don’t talk about this often enough but it’s a known risk that people with GI conditions can develop dangerously restrictive eating patterns and even eating disorders (which makes sense because of symptoms and fear). There’s a term for it: ARFID, associated with chronic illness. For example, any kind of fiber affects the gut microbiome. We couldn’t survive if we completely eliminated any kind of probiotic or prebiotic fiber. Or one could, but not without problems. But it’s hard to get out of the cycle.

I had problems because I heard so many things from many providers some more informed than others though most were well-intentioned, that it gave me food anxiety. My GI dietician was able to help me
navigate my food choices and re-introduce foods in a safe way because I was restricting things that didn’t need to be restricted. And the more you restrict the harder it is to get things back into your diet; it’s like getting stuck in a cycle. You almost have to retrain your body, so there will be a little discomfort while doing it until things get better, and my dietician taught me to manage it, but sometimes it takes some time to feel ready and open to doing that, and also guidance is helpful.

I used this website to find mine; you can just do a search: https://www.healthprofs.com/us/nutritionists-dietitians/ny/new-york?category=digestive-issues

That would be great if the place near you accepts your insurance. I know from helping my mom and dad that traditional Medicare does not cover dieticians except in very specific circumstances. He’s on a feeding tube and they still won’t cover it even though a dietician is the only provider that has knowledge to be able to recommend adjustments to his regimen. Most dieticians in private practice now offer telehealth if as you said, you don’t feel good about those nearest to you.

And sure, I can share the resources I mentioned.

I look forward to speaking with the nutritionist. I stopped salads, but still eat some cooked vegetables. I have just discovered that I now either don’t go at all OR take a little something and it’s like water. Unacceptable.

I have also dealt with a moron in urgent care. This pinhead helped to ruin my gut biome, and I have not been able to recover from it since. You sound like you are in the same age category as I am… the one where people drop dead. Because of my stomach pain and problems, sometimes I wish I would! Wondering with all your knowledge if you have ever used probiotics? I am being heartily encouraged to take them-specifically Align. I had a bad experience a few years ago when I first tried them and stopped very quickly. I was healthy at the time, but it was all the rage so I jumped on the bandwagon. They made my stomach hurt really badly and gave me horrible diarrhea so I stopped them. I feel like I’m kind of in that place a lot of days anyway so why worry about it? Doctors haven’t been able to help me other than suggesting I start them. Do you have any experience in this area? Or does anyone else reading this thread have any help for me?

Yes I certainly do. During that episode of bowel inflammation which would have healed by itself instead of being murdered by augmentin, !!!!! , I was told to try a probiotic so I bought Florastor. It's outrageously expensive, the Pope makes it at night so that's probably the reason. Forget it. Of course, my bowels were already missing its colony of bacteria so whatever the Florastor introduced cause GAS PAIN that sent me BACK to the ER and there was no infection or anyting, and DIARRHEA for DAYS. Recently, because my gastroenterologist doesn't seem to know much about anything, I tried acipophlus. They make these tiny little pearls very easy to swallow and I started taking one three days a week, went to four days a week, then every day a week. Mind you, this is the most benign probiotic on the planet. Well, it gave me copious amounts of BM and THEN it turned the BM into sausage shapes and darker brown and THEN it pretty much gave me such bad dry mouth (I looked it up, it's a side effect) in the middle of the night I had to get up and get a hard candy. SO I stopped it BUT it takes a couple of weeks to really get back to normal. My BM finally did get back to normal yesterday, a full week, but it did something to my sense of balance too because now in the morning suddenly I'm getting weird feeling of dizziness, that's a rare side effect. DON'T DO IT. And yes, I'm in the age category where you just drop dead and I wish I could.

Diarrhea can actually be part of constipation. I have to assume you've had a colonoscopy to be certain there's no obstruction?

I finally found a gastroenterologist in February of this year, which, for some reason is next to impossible. Maybe they’re ALL off making medications with the Pope?? Post procedure, returning phone calls or providing any follow up for the tests done seemed totally unreasonable for his office. Finally, I got an appointment two weeks ago and during our five minute conversation, he decided I had IBS and said “take Align, I’ve sent a medication to your pharmacy and goodbye, because I’m also closing my office here at the end of September”🤦‍♀️ I guess my process will begin again because the medication he prescribed is for IBS-D which is not my problem. I digress… So, you landed on no probiotics and your gut went back to normal? I’m pestering you because it would appear at this point that I could be on my own for a while in trying to heal my problem. Constant stomach pain and bowel problems are keeping me glued to a couch and pretty hateful. Thanks for all the help (And the great sarcasm! It’s my favorite😂)!!

It’s scheduled for the end of Oct. I had a good screening colonoscopy in 2020 and wasn’t due for another one for ten years, until I got this issue. What’s so confusing is that I had normal BMs for a couple of months….regular, normal….thought I was back on track….then a couple of weeks ago this . So disappointing.

Hello @user_ch783e933. I am sorry you are going through such an ordeal. I can certainly relate as I'm dealing with a similar situation. If possible, you might want to consider waiting on the colonoscopy while you try to settle down your hemorrhoid. I only say this b/c I wish I had delayed my own for what was, seemingly, the same issue. As it turned out I had been misdiagnosed with hemorrhoids when what I really had was a chronic fissure. The colonoscopy flared up my symptoms to the point that I finally got in to see a colorectal surgeon and they correctly diagnosed me without an overly invasive exam. I'm now being treated with conservative measures to heal the fissure and so far, so good. I am very grateful.

You might want to look into the following less invasive alternatives to get you to the next step with treatment. This is not to say that they replace a colonoscopy, but they might allow you to delay it. If you are interested, there are three tests that you may want to check on. They are: Cologuard (a stool test), Galleri (DNA blood test), and the newest test is Sheild (by Guardant Health) - also a blood test.

I've done both the Cologuard and Galleri in the past (2 plus years ago). My primary care physician worked with me to get them. Unfortunately, too much time had gone by to count on those results when my current bottom end issue started. I should have taken the time to ask to repeat them, but got too impatient.

I realize everyone's situation is unique but wanted to share in case it helps you/others.

Lastly, regarding Miralax, I too am trying to wean myself off of it in favor of a natural alternative. I'm not there yet but am making incremental progress. I too welcome all suggestions!