ChiariMSwithPOTS Posted November 4, 2010 Report Posted November 4, 2010 OK, so I finally figured out what's going on with me, why my POTS has returned. I have been having trouble with swallowing, getting too full fast, reflux, etc. These are the same symptoms I had before I had my brain injury surgery so I equated it with my brain injury. After surgery I was able to eat so much better. Now, after 6 years, I'm having my stomach issues back, as well as the POTS. So, my gastro doctor recommended that I get a stomach emptying test. It showed that I still had 64% of my food in my stomach at that point. So, after looking up the gastroparesis diet, and them mentioning softer pureed foods, etc. I did that so a week, and for a whole week, I was constipated. Ugh! However, I did have a respite from my tachycardia. Tonight, I couldn't stand the constipation any longer, so I took 2 cans of prune juice, it did the trick, I cleaned out, but I also noticed my tachycardia returned and dizziness (that had been gone too). It's so frustrating and not sure what to do, because softer foods helped me feel better, not feeling as full, helped the tachycardia, etc. But it made me constipated, but if I eat the more normal foods, I feel full, feel tachy after I eat. Most likely the constipation was from the liquid diet and lack of fiber. There has to be a happy medium in there somewhere. If anyone knows, please share it with me. Thanks. Quote
juliegee Posted November 5, 2010 Report Posted November 5, 2010 OK, so I finally figured out what's going on with me, why my POTS has returned. I have been having trouble with swallowing, getting too full fast, reflux, etc. These are the same symptoms I had before I had my brain injury surgery so I equated it with my brain injury. After surgery I was able to eat so much better. Now, after 6 years, I'm having my stomach issues back, as well as the POTS. So, my gastro doctor recommended that I get a stomach emptying test. It showed that I still had 64% of my food in my stomach at that point. So, after looking up the gastroparesis diet, and them mentioning softer pureed foods, etc. I did that so a week, and for a whole week, I was constipated. Ugh! However, I did have a respite from my tachycardia. Tonight, I couldn't stand the constipation any longer, so I took 2 cans of prune juice, it did the trick, I cleaned out, but I also noticed my tachycardia returned and dizziness (that had been gone too). It's so frustrating and not sure what to do, because softer foods helped me feel better, not feeling as full, helped the tachycardia, etc. But it made me constipated, but if I eat the more normal foods, I feel full, feel tachy after I eat. Most likely the constipation was from the liquid diet and lack of fiber. There has to be a happy medium in there somewhere. If anyone knows, please share it with me. Thanks.Constipation with gastroparesis is common (as are both with autonomic dysfunction.) I think you're right that yours is exacerbated by the change (albeit beneficial) in diet. I would recommend a daily dose of Miralax to regulate your bowels with your new diet. I have to take 2 full doses+ every night for regularity. Start with one dose and move up as you need to. Miralax can be safely taken long term. I just mix it in col water with a splash of lemon to erase the slight taste. Kudos for figuring out your tummy issues!Julie Quote
issie Posted November 5, 2010 Report Posted November 5, 2010 I was going to suggest Benefiber. It has no taste and doesn't bulk up like some other fibers but does it's job. You can even put it in your coffee in the morning. A doctor at Mayo said that everyone should use fiber on a daily basis. He suggested Konsil - but that bloated me and caused gas. I like the Benefiber the best of any one I've used. It is supposed to help cleanse the colon and helps with parasites or bacteria issues, bulk up the colon if there is the "runs", and should also help with mobility. The only thing you must do is drink enough liquids with it or else you will get clogged up. I know this is a messy subject, but how else do you talk about these things. Hope this helps.Issie Quote
juliegee Posted November 5, 2010 Report Posted November 5, 2010 Just as a warning, the gastroparesis diet is a LOW fiber diet. I'm worried that the Benefiber might worsen GI symptoms overall. Folks with slow GI tracts, most likely due to nerve damage, are warned against fiber. It just doesn't work for us & can dangerously worsen things. Quote
toddm1960 Posted November 6, 2010 Report Posted November 6, 2010 You hit the nail on the head Julie, I can't use or eat fiber. It just bloats me way worse, it doesn't move. One test to ask for now is a transit time study, this will show you if your esophagus, stomach, or intestines are slow. If you're like me all of them are slow. Whats works best for me is 12oz of prune juice along with 800mg of magnesium, we're all so different though you're going to need to try different things to find what works best for you. I hope you find somethings that help you feel better. Quote
juliegee Posted November 6, 2010 Report Posted November 6, 2010 I ended up hospitalized with an impaction after I tried FiberCon Capsules. They swelled up and acted like corks in my small bowel. Many of us are missing the normal GI contraction patterns (that move food along) because we have some nerve damage. Be cautious with fiber supplements! Quote
issie Posted November 7, 2010 Report Posted November 7, 2010 You hit the nail on the head Julie, I can't use or eat fiber. It just bloats me way worse, it doesn't move. One test to ask for now is a transit time study, this will show you if your esophagus, stomach, or intestines are slow. If you're like me all of them are slow. Whats works best for me is 12oz of prune juice along with 800mg of magnesium, we're all so different though you're going to need to try different things to find what works best for you. I hope you find somethings that help you feel better.When I have the slowness happening, I take a muscle relaxer and it relaxes the muscle so that things move on through. I've had IBS and ulcerative colitis for years and using the fiber, muscle relaxers and a good probiotic and using kefir has just about eliminated the issues. The fiber helps to get the bad bateria out of the colon and then you can replace it with the good. I don't use the fiber all the time, even though I was told to by a Mayo doctor. But, if I have issues with my food switch not working - being extremely hungry - this will work if you use it 30 minutes before a meal. The only fiber I've found that doesn't consitpate or bloat me is the Benefiber - it's way different than any of the others I've tried. But, as I said before, you must drink enough liquid to help it move on through. The doc told me to start out with just 1/4 tea and gradually work up as the intestines start to heal and it would help with regularity and help to heal things up. So, for me - it is beneficial and has helped allot. But, I do rely on the Bentyl if things start to slow down and they do that about every two weeks now - not every day. I used to use the magnesium and that does help, but it lowers my bp a little too much if I take it at night and it makes me too sleepy if I take it in the a.m. Someone told me about a slow release magnesium that I intend to try and see if that will work better for me. Also, I HAVE to use enzymes. If I don't nothing works right. We need enough enzymes to digest properly and also enough stomach acid. If there isn't enough of either of these two things the whole system is thrown off. I was having real bad reflux and discovered that instead of too much acid, I didn't have enough acid to digest and that's what was causing the reflux. When I added the enzymes and Hydrocloric Acid with pepsin - things got better. I'm still not completely healed, but things are soooooo much better now from a GI standpoint. Quote
ChiariMSwithPOTS Posted November 10, 2010 Author Report Posted November 10, 2010 Hi all,Thank you for the replies. Magnesium is something to look into. I know that 2 cans (10oz) of Prune Juice just gives me strong diarrhea, so maybe cutting that to one can, every other day might help me. Along with making sure I drink enough water. I got frustrated and went back to eating beans, and such, now I'm having cramps, softer stools (at least I'm going though), urgency, etc. And my tachycardia is back. Maybe I'm tachy from eating the fiberous foods because it's working harder to digest, eh? I can have the Benefiber because I also have Celiac disease and trouble swallowing. Might look into the Miralax. I'm just a little reluctant because I have MS and whenever I've been on stool softening meds it was pasty and I would have some incontience. It just got too messy. I know I'll find out what works for me. It's a matter of experimenting and time (and patience). Thanks again. Quote
golden girl Posted December 11, 2010 Report Posted December 11, 2010 I have gastroparesis with my autonomic nervous system disorder and it causes slow movement in stomach emptying foods digested. When John Wayne died and Elvis they had 50 up lbs of waste in their stomachs where it was just lingering there for days. I did some google on this and found a lot of vegetables causes bezoars which causes cement in the stomach and causes impactions. I use to do the Benefiber and was in hospital with another impaction so I am on a LOW fiber diet and try to stick to it. If you google about bezoars it tells you the vegetables NOT to eat ---- fiber supplements are one. I learned a lot and glad I did Quote
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