Guest guest Posted December 25, 2003 Report Share Posted December 25, 2003 My mother has the same problem and that is one of the reasons that she is in a nursing home, although she is also very weak and needs assistance with daily living skills. They started giving her a med used for lowering triglycerides and it has really helped. , can you remember what it is. I will think on it and if I remember, I will let you know. My mother has gained some strength and no longer sleeps all the time. Laurie > From: swimdel1@... > Reply-To: > Date: Thu, 25 Dec 2003 22:21:31 EST > To: > Subject: Strange Digestion > > I am aware that mito causes gastroparesis and constipation....but what about > the opposite? Since October I have had non-stop chronic diarrhea...what goes > in comes out quickly and usually in much the same consistency as it went in. I > tried the imodium stuff...it did not do anything for " formation, but rather > just stopped the liquid and flakey pieces for a period of time...then the > " floodgates " opened! My primary doctor has done numerous tests, we have > stopped > supplements (CoQ, carnitine, Creatine, selenium, C, B, E, etc) and then > gradually reintroduced them...no change. The only " new " medication is the > topomax > which is supposed to cause constipation. We are currently doing half-dose > (50mg) > for the past 3 days and still no change. As long as I am on liquids, > (gatorade) it's not too bad, but as soon as I eat anything solid (even a > cookie!) > within 5 minutes, my intestines start rumbling and I need to make a > run...nothing > much, just clear liquid and mucousy flakes. > My primary is at a loss as to what to do next. She suggests a GI doctor, but > the GI doctor I saw in October for the EGD stated that he had never in his 30 > years of practice heard of Mitochondrial disease. After the EGD turned up no > abnormalities, he said that whatever swallowing and digestive problems I was > having were probably related to " that strange disease you have! " > Question.....Is this chronic diarrhea related to " this strange disease " ? I > know that the GERD is related to mito. Also, the swallowing problems, > vision/hearing problems, muscle fatigue and cramping, headaches, air hunger, > numbness > etc. are related to mito. But is the diarrhea also? > > What is to done? Am I ever going to be able to go someplace without 2-3 > changes of underwear and pants? I get little to no warning. I am so > " drained " of > energy and think that if I never put anything solid in my mouth, then I will > never have to deal with the results! Changing position -Lying to standing, > sitting to standing, etc is an immediate rush to the porcelain portal! So far > I > have had no " quick runs " from the swimming pool to the locker room! It's > just a matter of time (or timing) though! > > The brat diet didn't work....bananas went in hard, solid and almost > ripe....about 20 minutes later were rotten mush...but still bananas! > > I look forward to some constipation! > > -The swim Lady > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Laurie, Wasn't it one of these? Colestid (colestipol HCI) Questran (cholestyramine) Laureta Fitzgerald wrote: My mother has the same problem and that is one of the reasons that she is in a nursing home, although she is also very weak and needs assistance with daily living skills. They started giving her a med used for lowering triglycerides and it has really helped. , can you remember what it is. I will think on it and if I remember, I will let you know. My mother has gained some strength and no longer sleeps all the time. Laurie From: swimdel1@... Reply-To: Date: Thu, 25 Dec 2003 22:21:31 EST To: Subject: Strange Digestion I am aware that mito causes gastroparesis and constipation....but what about the opposite? Since October I have had non-stop chronic diarrhea...what goes in comes out quickly and usually in much the same consistency as it went in. I tried the imodium stuff...it did not do anything for "formation, but rather just stopped the liquid and flakey pieces for a period of time...then the "floodgates" opened! My primary doctor has done numerous tests, we have stopped supplements (CoQ, carnitine, Creatine, selenium, C, B, E, etc) and then gradually reintroduced them...no change. The only "new" medication is the topomax which is supposed to cause constipation. We are currently doing half-dose (50mg) for the past 3 days and still no change. As long as I am on liquids, (gatorade) it's not too bad, but as soon as I eat anything solid (even a cookie!) within 5 minutes, my intestines start rumbling and I need to make a run...nothing much, just clear liquid and mucousy flakes. My primary is at a loss as to what to do next. She suggests a GI doctor, but the GI doctor I saw in October for the EGD stated that he had never in his 30 years of practice heard of Mitochondrial disease. After the EGD turned up no abnormalities, he said that whatever swallowing and digestive problems I was having were probably related to "that strange disease you have!" Question.....Is this chronic diarrhea related to "this strange disease"? I know that the GERD is related to mito. Also, the swallowing problems, vision/hearing problems, muscle fatigue and cramping, headaches, air hunger, numbness etc. are related to mito. But is the diarrhea also? What is to done? Am I ever going to be able to go someplace without 2-3 changes of underwear and pants? I get little to no warning. I am so "drained" of energy and think that if I never put anything solid in my mouth, then I will never have to deal with the results! Changing position -Lying to standing, sitting to standing, etc is an immediate rush to the porcelain portal! So far I have had no "quick runs" from the swimming pool to the locker room! It's just a matter of time (or timing) though! The brat diet didn't work....bananas went in hard, solid and almost ripe....about 20 minutes later were rotten mush...but still bananas! I look forward to some constipation! -The swim Lady Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 and It was Questran. Thanks . laurie > > Reply-To: > Date: Fri, 26 Dec 2003 06:00:34 -0800 > To: > Subject: Re: Strange Digestion > > Laurie, > > Wasn't it one of these? > > * Colestid (colestipol HCI) > * Questran (cholestyramine) > > > > Laureta Fitzgerald wrote: > >> >> >> My mother has the same problem and that is one of the reasons that she is in >> a nursing home, although she is also very weak and needs assistance with >> daily living skills. They started giving her a med used for lowering >> triglycerides and it has really helped. , can you remember what it is. >> I will think on it and if I remember, I will let you know. My mother has >> gained some strength and no longer sleeps all the time. >> >> Laurie >> >> >> >>> From: swimdel1@... >>> Reply-To: >>> Date: Thu, 25 Dec 2003 22:21:31 EST >>> To: >>> Subject: Strange Digestion >>> >>> I am aware that mito causes gastroparesis and constipation....but what about >>> the opposite? Since October I have had non-stop chronic diarrhea...what >>> goes >>> in comes out quickly and usually in much the same consistency as it went in. >>> I >>> tried the imodium stuff...it did not do anything for " formation, but rather >>> just stopped the liquid and flakey pieces for a period of time...then the >>> " floodgates " opened! My primary doctor has done numerous tests, we have >>> stopped >>> supplements (CoQ, carnitine, Creatine, selenium, C, B, E, etc) and then >>> gradually reintroduced them...no change. The only " new " medication is the >>> topomax >>> which is supposed to cause constipation. We are currently doing half-dose >>> (50mg) >>> for the past 3 days and still no change. As long as I am on liquids, >>> (gatorade) it's not too bad, but as soon as I eat anything solid (even a >>> cookie!) >>> within 5 minutes, my intestines start rumbling and I need to make a >>> run...nothing >>> much, just clear liquid and mucousy flakes. >>> My primary is at a loss as to what to do next. She suggests a GI doctor, >>> but >>> the GI doctor I saw in October for the EGD stated that he had never in his >>> 30 >>> years of practice heard of Mitochondrial disease. After the EGD turned up >>> no >>> abnormalities, he said that whatever swallowing and digestive problems I was >>> having were probably related to " that strange disease you have! " >>> Question.....Is this chronic diarrhea related to " this strange disease " ? I >>> know that the GERD is related to mito. Also, the swallowing problems, >>> vision/hearing problems, muscle fatigue and cramping, headaches, air hunger, >>> numbness >>> etc. are related to mito. But is the diarrhea also? >>> >>> What is to done? Am I ever going to be able to go someplace without 2-3 >>> changes of underwear and pants? I get little to no warning. I am so >>> " drained " of >>> energy and think that if I never put anything solid in my mouth, then I will >>> never have to deal with the results! Changing position -Lying to standing, >>> sitting to standing, etc is an immediate rush to the porcelain portal! So >>> far >>> I >>> have had no " quick runs " from the swimming pool to the locker room! It's >>> just a matter of time (or timing) though! >>> >>> The brat diet didn't work....bananas went in hard, solid and almost >>> ripe....about 20 minutes later were rotten mush...but still bananas! >>> >>> I look forward to some constipation! >>> >>> -The swim Lady >>> >>> >>> >> >> >> Medical advice, information, opinions, data and statements contained herein >> are not necessarily those of the list moderators. The author of this e mail >> is entirely responsible for its content. List members are reminded of their >> responsibility to evaluate the content of the postings and consult with their >> physicians regarding changes in their own treatment. >> >> Personal attacks are not permitted on the list and anyone who sends one is >> automatically moderated or removed depending on the severity of the attack. >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 , I was very interested in this post, as the same has happened to me since October. I don't think mine is quite as bad, as I can eat sometimes and have nothing happen, but I am not constipated anymore, it is chronic diarrhea. But, the same "new" medication change has been made for me. I went on Topamax on October for preventative migraines. I know it is to cause nausea and constipation and supposedly loss of appetite, well, I am nauseas, but hungrier, than ever (I eat when I am nauseous, to try to control it, and I am certainly not constipated)! When my sister was on it, she had the "right" side effects, although she does not have diagnosed mito, only suspected mito from me. I use Poise pads a lot, but I am able to control the diarrhea at times, thankfully. Know that I am thinking of you and if I find out anything that helps me, I will let you know. The topamax may not be involved, but I will still let you know if I find anything that helps! Smiles, a I am aware that mito causes gastroparesis and constipation....but what about the opposite? Since October I have had non-stop chronic diarrhea...what goes in comes out quickly and usually in much the same consistency as it went in. I tried the imodium stuff...it did not do anything for "formation, but rather just stopped the liquid and flakey pieces for a period of time...then the "floodgates" opened! My primary doctor has done numerous tests, we have stopped supplements (CoQ, carnitine, Creatine, selenium, C, B, E, etc) and then gradually reintroduced them...no change. The only "new" medication is the topomax which is supposed to cause constipation. We are currently doing half-dose (50mg) for the past 3 days and still no change. As long as I am on liquids, (gatorade) it's not too bad, but as soon as I eat anything solid (even a cookie!) within 5 minutes, my intestines start rumbling and I need to make a run...nothing much, just clear liquid and mucousy flakes. My primary is at a loss as to what to do next. She suggests a GI doctor, but the GI doctor I saw in October for the EGD stated that he had never in his 30 years of practice heard of Mitochondrial disease. After the EGD turned up no abnormalities, he said that whatever swallowing and digestive problems I was having were probably related to "that strange disease you have!"Question.....Is this chronic diarrhea related to "this strange disease"? I know that the GERD is related to mito. Also, the swallowing problems, vision/hearing problems, muscle fatigue and cramping, headaches, air hunger, numbness etc. are related to mito. But is the diarrhea also? What is to done? Am I ever going to be able to go someplace without 2-3 changes of underwear and pants? I get little to no warning. I am so "drained" of energy and think that if I never put anything solid in my mouth, then I will never have to deal with the results! Changing position -Lying to standing, sitting to standing, etc is an immediate rush to the porcelain portal! So far I have had no "quick runs" from the swimming pool to the locker room! It's just a matter of time (or timing) though!The brat diet didn't work....bananas went in hard, solid and almost ripe....about 20 minutes later were rotten mush...but still bananas! I look forward to some constipation! -The swim Lady Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Hi My 17 year old sons' symptoms started two years ago with chronic diarrhea and terrible foul smelling gas. It got to the point where we took him out of school so that he wouldn't have episodes of diarrhea and be embarrsed. Depending on the day, he has diarrhea or he doesn't. Needless to say, when we go out we take extra underwear in case he doesn't get to the bathroom in time. Then the muscle pain and chronic fatigue set in last year. He was getting headaches and shortness of breath. Concentration was a problem. So we finally had the dx of mito disorder. That explains the muscle pain but the diarrhea still continues. It is interesting to note that he had the diarrhea prior to taking Co Q- 10 and Vit C and E. Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Jim One of my mito docs told my mother to increase her CoQ to improve the loose stool problem. We don't know if it would have helped her as it wasn't done. I glad the CoQ has helped your son. laurie > > Reply-To: > Date: Fri, 26 Dec 2003 15:22:39 -0000 > To: > Subject: Re: Strange Digestion > > Hi > > My 17 year old sons' symptoms started two years ago with chronic > diarrhea and terrible foul smelling gas. It got to the point where > we took him out of school so that he wouldn't have episodes of > diarrhea and be embarrsed. Depending on the day, he has diarrhea or > he doesn't. Needless to say, when we go out we take extra underwear > in case he doesn't get to the bathroom in time. > > Then the muscle pain and chronic fatigue set in last year. He was > getting headaches and shortness of breath. Concentration was a > problem. So we finally had the dx of mito disorder. > > That explains the muscle pain but the diarrhea still continues. It > is interesting to note that he had the diarrhea prior to taking Co Q- > 10 and Vit C and E. > > Jim > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > ---------------------------------------------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 a and My son (with mito, but doing well for the most part) was put on Topamax for his migraines. The only side effect was not being hungry and not liking the taste of Coke. laurie > > Reply-To: > Date: Fri, 26 Dec 2003 09:12:25 -0600 > To: > Subject: Re: Strange Digestion > > , > I was very interested in this post, as the same has happened to > me since October. I don't think mine is quite as bad, as I can eat > sometimes and have nothing happen, but I am not constipated anymore, it > is chronic diarrhea. But, the same " new " medication change has been made > for me. I went on Topamax on October for preventative migraines. I know > it is to cause nausea and constipation and supposedly loss of appetite, > well, I am nauseas, but hungrier, than ever (I eat when I am nauseous, to > try to control it, and I am certainly not constipated)! When my sister > was on it, she had the " right " side effects, although she does not have > diagnosed mito, only suspected mito from me. I use Poise pads a lot, but > I am able to control the diarrhea at times, thankfully. Know that I am > thinking of you and if I find out anything that helps me, I will let you > know. The topamax may not be involved, but I will still let you know if > I find anything that helps! > Smiles, > a > > > I am aware that mito causes gastroparesis and constipation....but what > about the opposite? Since October I have had non-stop chronic > diarrhea...what goes in comes out quickly and usually in much the same > consistency as it went in. I tried the imodium stuff...it did not do > anything for " formation, but rather just stopped the liquid and flakey > pieces for a period of time...then the " floodgates " opened! My primary > doctor has done numerous tests, we have stopped supplements (CoQ, > carnitine, Creatine, selenium, C, B, E, etc) and then gradually > reintroduced them...no change. The only " new " medication is the topomax > which is supposed to cause constipation. We are currently doing > half-dose (50mg) for the past 3 days and still no change. As long as I > am on liquids, (gatorade) it's not too bad, but as soon as I eat anything > solid (even a cookie!) within 5 minutes, my intestines start rumbling and > I need to make a run...nothing much, just clear liquid and mucousy > flakes. > My primary is at a loss as to what to do next. She suggests a GI doctor, > but the GI doctor I saw in October for the EGD stated that he had never > in his 30 years of practice heard of Mitochondrial disease. After the > EGD turned up no abnormalities, he said that whatever swallowing and > digestive problems I was having were probably related to " that strange > disease you have! " > Question.....Is this chronic diarrhea related to " this strange disease " ? > I know that the GERD is related to mito. Also, the swallowing problems, > vision/hearing problems, muscle fatigue and cramping, headaches, air > hunger, numbness etc. are related to mito. But is the diarrhea also? > > What is to done? Am I ever going to be able to go someplace without 2-3 > changes of underwear and pants? I get little to no warning. I am so > " drained " of energy and think that if I never put anything solid in my > mouth, then I will never have to deal with the results! Changing > position -Lying to standing, sitting to standing, etc is an immediate > rush to the porcelain portal! So far I have had no " quick runs " from the > swimming pool to the locker room! It's just a matter of time (or timing) > though! > > The brat diet didn't work....bananas went in hard, solid and almost > ripe....about 20 minutes later were rotten mush...but still bananas! > > I look forward to some constipation! > > -The swim Lady Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Question.....Is this chronic diarrhea related to "this strange disease"? I know that the GERD is related to mito. Also, the swallowing problems, vision/hearing problems, muscle fatigue and cramping, headaches, air hunger, numbness etc. are related to mito. But is the diarrhea also? HI , I don't know how to help you, but I wanted you to know that I have the same problem with diarrhea b/c of my motility disorder. I get bacterial overgrowth b/c things don't move through very well and the bacteria just sit and sit. Then because of the bacterial overgrowth I end up not absorbing and get diarrhea. I have heard of others with mito who get diarrhea also b/c of autonomic dysfunction. ANS dysfunction could probably make the gut move too fast or too slow, depending on the individual. I wish I had more answers for you. I do see a GI at Univ. of Pennsylvania if you need a GI doc. Malisa "Wherever life takes us, there are always moments of wonder."President Jimmy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 I can totally relate because I'm in this diarrhea phase as well. For almost a year I have had mostly severe constipation. Sometimes I can go for a month with only diarrhea. My diet is consistant, no junk food and I only drink water. In addition I have swallowing problems, Irritable Bowel Syndrome, GERD and side-effects from chemo that I take for Lupus. I never know what symptoms go with which disease or medication. It seems as though the diarrhea started when I upped my CoQ10. I've decided to stop the Q10, L-Carnitor and Creatine this week since I think one of them may be the culpret as to why I've been very sick recently. Oddly enough, I'm already showing improvement with the diarrhea and extreme malaise / weakness and this is only the second day without the full mito cocktail. I'm reserving judgment for a few weeks though. Gotta figure out if I can tie it to one specific supplement. Thankfully, my diarrhea is not quite as severe as yours sounds. I'm so sorry to hear that you're not able to get out and about very well. Mostly my food goes right through and then I'm fine within about an hour of eating to go do whatever. Best of luck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Hi, The only time I've ever had anything close to this problem was when I went from hypothyroid to hyper; it really speeds up the metabolism. Malisa mentioned bacteria buildup. I'm wondering if that may be a problem, or some sort of parasite. Do you take acidophilus or a probiotic to replace good bacteria? Or if you use dairy products, you may be having an allergic reaction. Here's an article I found that talks about the med Laurie mentioned (Questran). It's for gallbladder problems, but they found that it's a big help for stopping diarrhea. http://my.webmd.com/content/article/27/1728_60456.htm?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348} Whatever it is, I sure hope you get answers soon. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2003 Report Share Posted December 27, 2003 Oh yeah, I see Dr. Terry Heiman- in Philly as well as a Neurologist here in Wilmington. Hopefully I will get a GI doctor who knows or is willing to find-out about mitochondrial diseases. .... Quote Link to comment Share on other sites More sharing options...
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