rmlyonsfamily Posted July 30, 2011 Report Share Posted July 30, 2011 I know a lot of you have loose stool issues with your POTS and Dysautonomia. K has the opposite - she struggles with constipation and it's only gotten worse since her hospitalization. Currently she is taking Miralax 3x a day as well as Senekot... you'd think she'd be all cleared out, but NOPE! Poor kid! Her Gastric Emptying study was normal and they really didn't look any further into it. Even sent her home knowing it had been 4 days since her last BM.Anyone else have this? What helps you? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 30, 2011 Report Share Posted July 30, 2011 I have tried them all, and the ONLY thing that keeps things moving through the intestines for me is Milk of Magnesia. Believe me, I tried them all. Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted July 30, 2011 Author Report Share Posted July 30, 2011 How often do you take it, Sue? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 30, 2011 Report Share Posted July 30, 2011 Almost every night, on average, 6 nights a week. Quote Link to comment Share on other sites More sharing options...
kclynn Posted July 30, 2011 Report Share Posted July 30, 2011 How long was her test? Some do only 2 hours but some do 4 or more. Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted July 30, 2011 Author Report Share Posted July 30, 2011 It was a total of 4 hours. They gave her the yummy radioactive flourescent yellow eggs at 7:45am and scanned her at 8am, 9am, 10am, and 12 noon. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted July 30, 2011 Report Share Posted July 30, 2011 Hi, has she been checked yet for small fiber neuropathy? Skin biopsy is gold standard. Those nerves control all autonomic function, including gi, cardiac and blood vessels nerves. Does she sweat? I have similar issues too. Fiber actually slows me down more, I also get bouts of loose watery. I've noticed that when I drink Ice tea, or drink "100% black cherry juice" things will move. Also black cherries are in season right now, try to get her to eat a bunch of them, think they work better then prunes and test better. Ya kinda gotta wonder how good a test using eggs is. They are pretty easy to digest, so I would think would move through easier. I know there is one they do with meat, which is harder to digest. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted July 30, 2011 Report Share Posted July 30, 2011 Sorry to hear you're having such problems, but I think more of us with dysautonomia have slow transit times (IBS-C) rather than the standard IBS most GI's know about. It took me two years to find a good GI doctor that ran transit time tests, this test tracks the amount of time food takes from the time you swallow it untill it comes out the other end. It will show any strictures or malforamtions of small intestin and colon, and any rotation problems with your stomach. The gastric emptying test only checks for such a small part of our GI tract problems. You need to find a GI doc that runs transit time tests and esophageal and gastric monomitry. Remember your autonomic nervous system controls all the smooth muscles of our GI tract, so it's only natural those of us with dysautonomia have major GI problems. The sad part is 90% of GI doctors only know about basic testing and they pass us off when these tests or normal. What I've found helps me best is 1,000mg of magnesium with 12oz of pruine juice each morning, keep trying different things, we're all so different what works for one won't work for others. Good luck and I hope you find some ideas that help. Quote Link to comment Share on other sites More sharing options...
Meg.Limbach Posted July 30, 2011 Report Share Posted July 30, 2011 Hi, has she been checked yet for small fiber neuropathy? Skin biopsy is gold standard. Those nerves control all autonomic function, including gi, cardiac and blood vessels nerves. Does she sweat? I have similar issues too. Fiber actually slows me down more, I also get bouts of loose watery. I've noticed that when I drink Ice tea, or drink "100% black cherry juice" things will move. Also black cherries are in season right now, try to get her to eat a bunch of them, think they work better then prunes and test better. Ya kinda gotta wonder how good a test using eggs is. They are pretty easy to digest, so I would think would move through easier. I know there is one they do with meat, which is harder to digest.tea does the same for me. how weird. I love love love sweet tea but will only drink it if I know I am going to be at home lol. as for the original post.. I have been in the ER twice for severe abdominal pain (and for me to say its severe its comparable to kidney stones or childbirth) both times I was just "stopped up" .. they didnt do anything for me but to let me "pass it naturally" .. it took days and it was pure ****. I hope yall find some relief. It truely is a miserable thing. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted July 30, 2011 Report Share Posted July 30, 2011 This has always been an issue with my son. If he doesn't take Miralax daily, sometimes he doesn't have a BM for 2 weeks. Miralax is a must, and even when taking it daily his BM is every 3 to 4 days. He literally clogs the toilet everytime he goes.His first gastric emptying test came back positive in November 09, but they retested him in March and it was fine. Constipation has been an issue with him since he was 3 years old. The doctors aren't that concerned, we just keep giving him 2 capfuls of Miralax a day.Christy Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted July 30, 2011 Report Share Posted July 30, 2011 This has always been an issue with my son. If he doesn't take Miralax daily, sometimes he doesn't have a BM for 2 weeks. Miralax is a must, and even when taking it daily his BM is every 3 to 4 days. He literally clogs the toilet everytime he goes.His first gastric emptying test came back positive in November 09, but they retested him in March and it was fine. Constipation has been an issue with him since he was 3 years old. The doctors aren't that concerned, we just keep giving him 2 capfuls of Miralax a day.ChristyYou should ask the doctor if we could plug him up for two weeks, tell him it's nothing to be concerned about. It's so sad how the medical community treats things they know nothing about. My second Gi doc told me the same thing, "your gastric emptying test is only on the slow side, nothing to worry about" Fire these do nothing docs, keep looking until you find someone that can help.Sorry for the rant but until I took control of my medical care nothing got done. The minute I got "I don't know" or "nothing to worry about" or "it's all in your head" I fired them right in the exam room and moved on. I took 5 years but I did end up finding doctors that helped. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted July 30, 2011 Report Share Posted July 30, 2011 Toddm1960,Trust me, we are still looking for help. We have an appointment at the Mayo clinic in October. We haven't given up looking to get him the help he needs. We are scheduled to be there for 4 days for doctors appointment and tests. We have already had a lot of tests done in Cleveland, so I'm not sure what other tests might be needed.And I agree, if the doctor had to have the pain associated with not going to the bathroom for 2 weeks, he'd figure out something real quick.Christy Quote Link to comment Share on other sites More sharing options...
Olive Posted July 30, 2011 Report Share Posted July 30, 2011 prunes or prune juice/coffee/milk of mag. We consider that the GI cocktail for post open heart surgery that have not gone yet. After that and we got them up to walk we would sometime follow down the hall with towel because you couldn't get back to the room quick enough. lol. I have also heard of mag citrate to get the bowel cleared, not the whole bottle like with preping for a gi test. good luck with it. I keep prunes around for me.Good luckTrudy Quote Link to comment Share on other sites More sharing options...
issie Posted July 30, 2011 Report Share Posted July 30, 2011 After so many abdominal surgeries and having issues with moving afterwards - believe it or not one of the best things to help is mineral oil. Especially, when it's been awhile. Not something you want to take all the time however. I've also found that orange juice helps. Another thing is a muscle relaxer. Sometimes the colon stays in a contracted state and won't relax enough to let things pass. The one I use is Bentyl - it's an oldie but a goodie. The GI doc that I recently saw said he prescribes that one to people at least twice a day for this issue. You can use it up to 4 times a day. My egg - gastric emptying study was fine too as was my swallow test. But, I swear sometimes things sit in my stomach - especially meat and don't digest. I also have issues with feeling like something is stuck in my throat - but swallowing test was okay. Not sure what that sensation is. Will have follow up appt. next week. Quote Link to comment Share on other sites More sharing options...
gertie Posted July 30, 2011 Report Share Posted July 30, 2011 If I have a bad colon cramp I pass out so I've tried about everything to avoid that. The GI dr told me to drink 1 tsp Metamucil (psyllium) in 12 oz (not 8 oz) of water a.m. & p.m. Instead of MM I use organic psyllium. I still only go maybe 3 or 4 x's a week but it's more normal than a reg laxative. I use warm prune juice for a backup if needed. I also read on "ask Dr Stoll" forum to add mineral oil to the psyllium but I don't remember how much. Dr also gave me Miralax but I had an issue with the ingredients in it. It caused me bad headaches. Hope you find something that helps. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted July 30, 2011 Report Share Posted July 30, 2011 CHRISTYD I didn't want you to think my rant was directed at you at all, it was all towards doctors that just dump us off when their only tests come back ok. Good luck at Mayo I'm sure you'll better testing there........ Quote Link to comment Share on other sites More sharing options...
janiedelite Posted July 30, 2011 Report Share Posted July 30, 2011 It may have been best if K could have had her entire GI tract tested for motility (stomach to rectum). I have the same constipation issues she describes but it was my small intestine that wasn't moving well, not my stomach. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted July 30, 2011 Report Share Posted July 30, 2011 CHRISTYD I didn't want you to think my rant was directed at you at all, it was all towards doctors that just dump us off when their only tests come back ok. Good luck at Mayo I'm sure you'll better testing there........ No offense was taken. I understood it was for the doctors.Christy Quote Link to comment Share on other sites More sharing options...
Rachel Posted July 31, 2011 Report Share Posted July 31, 2011 For me Senokot actually makes things much worse. My intestines can't handle that much fiber. Several years ago I was using Senokot, and because it wasn't helping enough I added in Miralax. The Miralax didn't help at all at that time because I was still taking the Senokot. Eventually I discovered that I do best with just Miralax. If it has been a few days and I still haven't gone then I use a glycerine suppository. That usually fixes the problem right away.For a couple of years I used Amitiza. It works neurologically to tell your intestines to move. Even that wasn't all that helpful for me, though. I had to stop Amitiza when I got pregnant, and that is when I discovered that just plain Miralax worked best for me.I hope you can find something that helps K soon.Rachel Quote Link to comment Share on other sites More sharing options...
shoegal Posted September 5, 2011 Report Share Posted September 5, 2011 I just posted about GI issues myself. I hadn't seen this thread. I need to see a GI but doubt I'll get tests done given I have no insurance. I'm already on daily miralax and still not going (suppositories aren't much help, only enemas and don't work every time) Everything is soft, it just isn't being pushed out it seems. Any ideas? Quote Link to comment Share on other sites More sharing options...
brethor9 Posted September 5, 2011 Report Share Posted September 5, 2011 lots of magnesium works great for me! I take 200 grams before bed and when I wake up I take 2 tablespoons of maalox....couple of hours later everything is moving.....I have tried every OTC treatment out there plus everything else under the sun for my very slow bowels. Magnesium is the only thing that helps in the slightest for meBren Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.