Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 Hi , Lamar, and all those posting about bowel problems.Two years ago, I went to my Gyn. about loss of bladder function. Was told I had a cystocele and rectocele, and that the muscles in that area were VERY RELAXED! I had had constipation for years, and he felt surgery would help both. This past May it was 2 years since the surgery, and the constipation problem has disappeared!! The bladder control is taking a bit longer, but slowly it seems to get better and better. I have no problem now during the day,since I relieve myself every 2 hours or so, but night time is a different matter. Anyway, that's my report on this subject. P.S. My father, from whom I inherited CMT, had the same bowel problems,and every morning would eat three steamed prunes and a spoonfull of mineral oil--ugh. Apparently that worked for him--obviously, he never wanted to talk about it. When I was dx with CMT1A, I gathered all the info I could and wrote to him, saying at last we knew what we had. He denied it, saying he had a peripheral neuropathy! and would not accept that it was the same thing. I believe he did realize that that was what he had, but could not accept the fact that 4 of his 7 children had inherited it. He should not have felt guilty, since he had no idea of the inheritance factor. Theresa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 HI JENNY. THANKS TO YOU AND TO ALL WHO ARE REPLYING. Funny how some of us have these problems , my mother, uncle, cousin and myself all have the same problems with our bowels! My mother has to have flushes often! I wonder if there is an association with the disease and constipation or IBS ( Irritable Bowel Syndrome )? I DO NOT KNOW: POOR PERYSTALSIS MIGHT RESULT FROM WEAK OR NOT USED ABDOMINAL MUSCLES OR, IN SOME CASES, FROM AUTONOMIC IMPAIRMENT. CIAO - PAOLO Would love to here some other finding to relate this to the disease! Very very interesting? ----- Original Message ----- From: Lamar son Sent: Thursday, August 09, 2001 7:44 PM Subject: Re: [] Hello everybody Paolo, Lamar here, I have occasional problems with constipation. My mother, grandmother, one aunt, and two great aunts with CMT appeared to loose all peristalsis in their colon and required repeated enemas to literally " wash " the stool out, having frequent fecal impactions. All of them also became unable to urinate and required indwelling catheters for several years. All of their physicians said that they felt there was a connection with their CMT. I will add that the physicians all said that independently of each other and were located in different areas. I do notice a decrease in tactile sensation to my genital area and have some urinary urgency. ----- Original Message ----- From: Paolo Vinci Sent: Wednesday, August 08, 2001 07:35 PM Subject: Re: [] Hello everybody Hello, Rose-. Very good description of " clinical variability " which is typical of CMT 1A. You say that your son takes a medication for lazy bowels. It is not frequent for a 10 year old child. I have started with the same problem at 25 and some other CMTers told me they have too. I have always thought that it might be due to the neuropathy, but since it is a frequent problem in the general population especially if leading a sedentary life, I gave up considering it as CMT related. It would be interesting to see how many of us have prolonged digestion and constipation. To conclude, I'd like to join Rose- in congratulating Gretchen for this list, always full of interesting messages. Ciao. Paolo - Italy ----- Original Message ----- From: <dhrtlan@...> < > Sent: Wednesday, August 08, 2001 1:04 AM Subject: [] Hello everybody Hej! (=Hello in Swedish) For a couple of years ago I was a member of this wonderful mailgroup. For some months now I have read your messages now and then but not taken me the time to introduce myself, but probably some of you remember me. Anyway my name is Rose-Marie, I`m 41 years old now and live in Sweden. I'm a single mother with two boys; 10 and 14 years old. We all have CMT 1A which partly effects us the same ways (we all get quite easily tired and need orthotics) but we are also effected in different ways. My oldest boy Pierre is the only one in our family whos feet have ben operated (twice), my youngest son Patric must on the other hand for example take the med. Prepulsid before every meal because of his stomachproblams. Probably are his intestines effected by CMT; they work too slow. The med. helps him though very much so he doesn't suffer from pain and illness so much as he used to. Since I was on the list last time I have taken contact with different relatives of mine I didn´t know before who also have CMT, I guess we are quite a big " CMTfamily " . We are all different effected in many ways. Some can't work at all and use scooters. Some of us have pain, others don't. And one old man for example - he is over 80 years - just have typical CMT feet with high arches but no other symptoms at all. He is stronger than most men his age and takes care of his sick wife, the house and everything. And then there are several cousins who are like me; we walk mostly without sticks or anything (sometimes when my legs don´t want to move and feels like dead stocks I use a crutch) even if a little unsteady, we work part-time, experiences pain and light depressions now and then. I must congratulate you to this list, it has really developed with the bookmarks and everything. Grate when you want to search for specific topics. Many warm regards to old and new members from Rose-Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2001 Report Share Posted August 11, 2001 Hello the House, It seems as usual I have the opposite problem. My bowel muscles do not close in the usual fashion at the end of the movement. It takes a few minutes before they return to normal. Doctor said the muscles sometime weaken, he did not mention CMT. E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2001 Report Share Posted August 11, 2001 Hello, I've have IBS for years. My last colonoscopy revealed some spasms, but no other abnormalities. Cordy --- <sharpei@...> wrote: > Hi ! > > Funny how some of us have these problems , my > mother, uncle, cousin and myself all have the same > problems with our bowels! My mother has to have > flushes often! I wonder if there is an association > with the disease and constipation or IBS ( Irritable > Bowel Syndrome )? > > Would love to here some other finding to relate this > to the disease! Very very interesting? > > > > ----- Original Message ----- > From: Lamar son > > Sent: Thursday, August 09, 2001 7:44 PM > Subject: Re: [] Hello everybody > > > Paolo, > Lamar here, > > I have occasional problems with constipation. My > mother, grandmother, one > aunt, and two great aunts with CMT appeared to > loose all peristalsis in > their colon and required repeated enemas to > literally " wash " the stool out, > having frequent fecal impactions. All of them > also became unable to urinate > and required indwelling catheters for several > years. All of their > physicians said that they felt there was a > connection with their CMT. I > will add that the physicians all said that > independently of each other and > were located in different areas. I do notice a > decrease in tactile > sensation to my genital area and have some urinary > urgency. > ----- Original Message ----- > From: Paolo Vinci > > Sent: Wednesday, August 08, 2001 07:35 PM > Subject: Re: [] Hello everybody > > > Hello, Rose-. Very good description of > " clinical variability " which is > typical of CMT 1A. > You say that your son takes a medication for > lazy bowels. It is not > frequent > for a 10 year old child. I have started with the > same problem at 25 and > some > other CMTers told me they have too. I have > always thought that it might be > due to the neuropathy, but since it is a > frequent problem in the general > population especially if leading a sedentary > life, I gave up considering > it > as CMT related. > It would be interesting to see how many of us > have prolonged digestion and > constipation. > To conclude, I'd like to join Rose- in > congratulating Gretchen for > this > list, always full of interesting messages. > Ciao. > Paolo - Italy > > ----- Original Message ----- > From: <dhrtlan@...> > < > > Sent: Wednesday, August 08, 2001 1:04 AM > Subject: [] Hello everybody > > > Hej! (=Hello in Swedish) > > For a couple of years ago I was a member of this > wonderful mailgroup. > For some months now I have read your messages > now and then but not > taken me the time to introduce myself, but > probably some of you > remember me. Anyway my name is Rose-Marie, I`m > 41 years old now and > live in Sweden. I'm a single mother with two > boys; 10 and 14 years > old. We all have CMT 1A which partly effects us > the same ways (we all > get quite easily tired and need orthotics) but > we are also effected > in different ways. My oldest boy Pierre is the > only one in our family > whos feet have ben operated (twice), my youngest > son Patric must on > the other hand for example take the med. > Prepulsid before every meal > because of his stomachproblams. Probably are his > intestines effected > by CMT; they work too slow. The med. helps him > though very much so he > doesn't suffer from pain and illness so much as > he used to. > Since I was on the list last time I have taken > contact with different > relatives of mine I didn´t know before who also > have CMT, I guess we > are quite a big " CMTfamily " . We are all > different effected in many > ways. Some can't work at all and use scooters. > Some of us have pain, > others don't. And one old man for example - he > is over 80 years - > just have typical CMT feet with high arches but > no other symptoms at > all. He is stronger than most men his age and > takes care of his sick > wife, the house and everything. And then there > are several cousins > who are like me; we walk mostly without sticks > or anything (sometimes > when my legs don´t want to move and feels like > dead stocks I use a > crutch) even if a little unsteady, we work > part-time, experiences > pain and light depressions now and then. > > I must congratulate you to this list, it has > really developed with > the bookmarks and everything. Grate when you > want to search for > specific topics. > > Many warm regards to old and new members from > Rose-Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Hi all, I had a colonoscopy about 3 years ago due to a 3 week bout with constipation. I was very worried about it since my mother had colon cancer and had a colostomy. However, the test came out clean. Will have another at the 5 yr anniv, then 10 years after that if all is okay. I need to eat more fruit, I know. My father had always had bowel problems since his 40's when he became overweight. We all ate fresh garden food, homemade canned fruits/veggys, and a lot of white bread - no grains whatsoever. I am working on losing weight - eating balanced meals, but as little as possible. I have 2 male snack-hounds in the house so it takes extra willpower :-) Melody > > Hi ! > > > > Funny how some of us have these problems , my > > mother, uncle, cousin and myself all have the same > > problems with our bowels! My mother has to have > > flushes often! I wonder if there is an association > > with the disease and constipation or IBS ( Irritable > > Bowel Syndrome )? > > > > Would love to here some other finding to relate this > > to the disease! Very very interesting? > > > > > > > > ----- Original Message ----- > > From: Lamar son > > @y... > > Sent: Thursday, August 09, 2001 7:44 PM > > Subject: Re: [] Hello everybody > > > > > > Paolo, > > Lamar here, > > > > I have occasional problems with constipation. My > > mother, grandmother, one > > aunt, and two great aunts with CMT appeared to > > loose all peristalsis in > > their colon and required repeated enemas to > > literally " wash " the stool out, > > having frequent fecal impactions. All of them > > also became unable to urinate > > and required indwelling catheters for several > > years. All of their > > physicians said that they felt there was a > > connection with their CMT. I > > will add that the physicians all said that > > independently of each other and > > were located in different areas. I do notice a > > decrease in tactile > > sensation to my genital area and have some urinary > > urgency. > > ----- Original Message ----- > > From: Paolo Vinci > > @y... > > Sent: Wednesday, August 08, 2001 07:35 PM > > Subject: Re: [] Hello everybody > > > > > > Hello, Rose-. Very good description of > > " clinical variability " which is > > typical of CMT 1A. > > You say that your son takes a medication for > > lazy bowels. It is not > > frequent > > for a 10 year old child. I have started with the > > same problem at 25 and > > some > > other CMTers told me they have too. I have > > always thought that it might be > > due to the neuropathy, but since it is a > > frequent problem in the general > > population especially if leading a sedentary > > life, I gave up considering > > it > > as CMT related. > > It would be interesting to see how many of us > > have prolonged digestion and > > constipation. > > To conclude, I'd like to join Rose- in > > congratulating Gretchen for > > this > > list, always full of interesting messages. > > Ciao. > > Paolo - Italy > > > > ----- Original Message ----- > > From: <dhrtlan@t...> > > <@y...> > > Sent: Wednesday, August 08, 2001 1:04 AM > > Subject: [] Hello everybody > > > > > > Hej! (=Hello in Swedish) > > > > For a couple of years ago I was a member of this > > wonderful mailgroup. > > For some months now I have read your messages > > now and then but not > > taken me the time to introduce myself, but > > probably some of you > > remember me. Anyway my name is Rose-Marie, I`m > > 41 years old now and > > live in Sweden. I'm a single mother with two > > boys; 10 and 14 years > > old. We all have CMT 1A which partly effects us > > the same ways (we all > > get quite easily tired and need orthotics) but > > we are also effected > > in different ways. My oldest boy Pierre is the > > only one in our family > > whos feet have ben operated (twice), my youngest > > son Patric must on > > the other hand for example take the med. > > Prepulsid before every meal > > because of his stomachproblams. Probably are his > > intestines effected > > by CMT; they work too slow. The med. helps him > > though very much so he > > doesn't suffer from pain and illness so much as > > he used to. > > Since I was on the list last time I have taken > > contact with different > > relatives of mine I didn´t know before who also > > have CMT, I guess we > > are quite a big " CMTfamily " . We are all > > different effected in many > > ways. Some can't work at all and use scooters. > > Some of us have pain, > > others don't. And one old man for example - he > > is over 80 years - > > just have typical CMT feet with high arches but > > no other symptoms at > > all. He is stronger than most men his age and > > takes care of his sick > > wife, the house and everything. And then there > > are several cousins > > who are like me; we walk mostly without sticks > > or anything (sometimes > > when my legs don´t want to move and feels like > > dead stocks I use a > > crutch) even if a little unsteady, we work > > part-time, experiences > > pain and light depressions now and then. > > > > I must congratulate you to this list, it has > > really developed with > > the bookmarks and everything. Grate when you > > want to search for > > specific topics. > > > > Many warm regards to old and new members from > > Rose-Marie > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2001 Report Share Posted August 15, 2001 Hello again! Thanks for your warm welcome-mails! Here we have had a busy time, my sons have today returned to school after there summer vacations and I have started to work again. Back to the routine. But I think this time of the year are one of our best as we have had a chance to rest and feel rehabilitated. And than we we had a wonderful warm summer this year. The medicine my 10 year old son Patric takes before every meal is called Prepulsid. It helps his " lazy " bowels to work better. He has tested to stop using that med. for a while but after a few days he then became as bad as he was before he began taken it (pain, vomiting, illness etc. )I have read that these kind of stomachproblems can appear together with many neuropathic diseases and even among people with diabetics. Patric has an aunt that also has very big problems with her stomach; sometimes she has constipation, sometimes diarrhoea (she has also CMT, most likely, but has not got the diagnose). But what I have understand are these stomachproblems among some CMT:ers not scientifically verified in a proper way, that's why it is so hard to find understandings for the problems among many doctors and a chance to get a proper help. These thoughts are at least my experience and opinion. Warm regards from Rose-Marie --- In @y..., " Paolo Vinci " <p.vinci@l...> wrote: > HI JENNY. THANKS TO YOU AND TO ALL WHO ARE REPLYING. > Funny how some of us have these problems , my mother, uncle, cousin and > myself all have the same problems with our bowels! My mother has to have > flushes often! I wonder if there is an association with the disease and > constipation or IBS ( Irritable Bowel Syndrome )? > I DO NOT KNOW: POOR PERYSTALSIS MIGHT RESULT FROM WEAK OR NOT USED ABDOMINAL > MUSCLES OR, IN SOME CASES, FROM AUTONOMIC IMPAIRMENT. > CIAO - PAOLO > > Would love to here some other finding to relate this to the disease! Very > very interesting? > > > > ----- Original Message ----- > From: Lamar son > @y... > Sent: Thursday, August 09, 2001 7:44 PM > Subject: Re: [] Hello everybody > > > Paolo, > Lamar here, > > I have occasional problems with constipation. My mother, grandmother, one > aunt, and two great aunts with CMT appeared to loose all peristalsis in > their colon and required repeated enemas to literally " wash " the stool > out, > having frequent fecal impactions. All of them also became unable to > urinate > and required indwelling catheters for several years. All of their > physicians said that they felt there was a connection with their CMT. I > will add that the physicians all said that independently of each other and > were located in different areas. I do notice a decrease in tactile > sensation to my genital area and have some urinary urgency. > ----- Original Message ----- > From: Paolo Vinci > @y... > Sent: Wednesday, August 08, 2001 07:35 PM > Subject: Re: [] Hello everybody > > > Hello, Rose-. Very good description of " clinical variability " which > is > typical of CMT 1A. > You say that your son takes a medication for lazy bowels. It is not > frequent > for a 10 year old child. I have started with the same problem at 25 and > some > other CMTers told me they have too. I have always thought that it might > be > due to the neuropathy, but since it is a frequent problem in the general > population especially if leading a sedentary life, I gave up considering > it > as CMT related. > It would be interesting to see how many of us have prolonged digestion > and > constipation. > To conclude, I'd like to join Rose- in congratulating Gretchen for > this > list, always full of interesting messages. > Ciao. > Paolo - Italy > > ----- Original Message ----- > From: <dhrtlan@t...> > <@y...> > Sent: Wednesday, August 08, 2001 1:04 AM > Subject: [] Hello everybody > > > Hej! (=Hello in Swedish) > > For a couple of years ago I was a member of this wonderful mailgroup. > For some months now I have read your messages now and then but not > taken me the time to introduce myself, but probably some of you > remember me. Anyway my name is Rose-Marie, I`m 41 years old now and > live in Sweden. I'm a single mother with two boys; 10 and 14 years > old. We all have CMT 1A which partly effects us the same ways (we all > get quite easily tired and need orthotics) but we are also effected > in different ways. My oldest boy Pierre is the only one in our family > whos feet have ben operated (twice), my youngest son Patric must on > the other hand for example take the med. Prepulsid before every meal > because of his stomachproblams. Probably are his intestines effected > by CMT; they work too slow. The med. helps him though very much so he > doesn't suffer from pain and illness so much as he used to. > Since I was on the list last time I have taken contact with different > relatives of mine I didn´t know before who also have CMT, I guess we > are quite a big " CMTfamily " . We are all different effected in many > ways. Some can't work at all and use scooters. Some of us have pain, > others don't. And one old man for example - he is over 80 years - > just have typical CMT feet with high arches but no other symptoms at > all. He is stronger than most men his age and takes care of his sick > wife, the house and everything. And then there are several cousins > who are like me; we walk mostly without sticks or anything (sometimes > when my legs don´t want to move and feels like dead stocks I use a > crutch) even if a little unsteady, we work part-time, experiences > pain and light depressions now and then. > > I must congratulate you to this list, it has really developed with > the bookmarks and everything. Grate when you want to search for > specific topics. > > Many warm regards to old and new members from Rose-Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2001 Report Share Posted August 15, 2001 Hello Rose-Marie and welcome, I am curious if you got more than one opinion for your son's " lazy bowel " diagnosis and treatment? Prepulsid is a drug designed to combat " GERD " which is gastro esophogeal reflux disease. In laymen's terms, extreme heartburn. This is a problem with the stomach and above, not the bowels. Prepulsid is also a drug that I beleive has been pulled from distribution in many countries because of cases of heart problems. I do know that there are class action lawsuits in the US for people who have had heart related problems who were taking Prepulsid. I am not a doctor but I researched Prepulsid quite thoroughly several years ago when the doctor tried to put my mother on it for occasional severe heartburn. Thankfully she got a second opinion and never went on the Prepulsid. She did cut out the foods that gave her problems and the heartburn went away. Regards, BC ----- Original Message ----- From: <dhrtlan@...> < > Sent: Wednesday, August 15, 2001 10:24 AM Subject: [] Re: Bowel Problems ( CMT) Hello again! Thanks for your warm welcome-mails! Here we have had a busy time, my sons have today returned to school after there summer vacations and I have started to work again. Back to the routine. But I think this time of the year are one of our best as we have had a chance to rest and feel rehabilitated. And than we we had a wonderful warm summer this year. The medicine my 10 year old son Patric takes before every meal is called Prepulsid. It helps his " lazy " bowels to work better. He has tested to stop using that med. for a while but after a few days he then became as bad as he was before he began taken it (pain, vomiting, illness etc. )I have read that these kind of stomachproblems can appear together with many neuropathic diseases and even among people with diabetics. Patric has an aunt that also has very big problems with her stomach; sometimes she has constipation, sometimes diarrhoea (she has also CMT, most likely, but has not got the diagnose). But what I have understand are these stomachproblems among some CMT:ers not scientifically verified in a proper way, that's why it is so hard to find understandings for the problems among many doctors and a chance to get a proper help. These thoughts are at least my experience and opinion. Warm regards from Rose-Marie --- In @y..., " Paolo Vinci " <p.vinci@l...> wrote: > HI JENNY. THANKS TO YOU AND TO ALL WHO ARE REPLYING. > Funny how some of us have these problems , my mother, uncle, cousin and > myself all have the same problems with our bowels! My mother has to have > flushes often! I wonder if there is an association with the disease and > constipation or IBS ( Irritable Bowel Syndrome )? > I DO NOT KNOW: POOR PERYSTALSIS MIGHT RESULT FROM WEAK OR NOT USED ABDOMINAL > MUSCLES OR, IN SOME CASES, FROM AUTONOMIC IMPAIRMENT. > CIAO - PAOLO > > Would love to here some other finding to relate this to the disease! Very > very interesting? > > > > ----- Original Message ----- > From: Lamar son > @y... > Sent: Thursday, August 09, 2001 7:44 PM > Subject: Re: [] Hello everybody > > > Paolo, > Lamar here, > > I have occasional problems with constipation. My mother, grandmother, one > aunt, and two great aunts with CMT appeared to loose all peristalsis in > their colon and required repeated enemas to literally " wash " the stool > out, > having frequent fecal impactions. All of them also became unable to > urinate > and required indwelling catheters for several years. All of their > physicians said that they felt there was a connection with their CMT. I > will add that the physicians all said that independently of each other and > were located in different areas. I do notice a decrease in tactile > sensation to my genital area and have some urinary urgency. > ----- Original Message ----- > From: Paolo Vinci > @y... > Sent: Wednesday, August 08, 2001 07:35 PM > Subject: Re: [] Hello everybody > > > Hello, Rose-. Very good description of " clinical variability " which > is > typical of CMT 1A. > You say that your son takes a medication for lazy bowels. It is not > frequent > for a 10 year old child. I have started with the same problem at 25 and > some > other CMTers told me they have too. I have always thought that it might > be > due to the neuropathy, but since it is a frequent problem in the general > population especially if leading a sedentary life, I gave up considering > it > as CMT related. > It would be interesting to see how many of us have prolonged digestion > and > constipation. > To conclude, I'd like to join Rose- in congratulating Gretchen for > this > list, always full of interesting messages. > Ciao. > Paolo - Italy > > ----- Original Message ----- > From: <dhrtlan@t...> > <@y...> > Sent: Wednesday, August 08, 2001 1:04 AM > Subject: [] Hello everybody > > > Hej! (=Hello in Swedish) > > For a couple of years ago I was a member of this wonderful mailgroup. > For some months now I have read your messages now and then but not > taken me the time to introduce myself, but probably some of you > remember me. Anyway my name is Rose-Marie, I`m 41 years old now and > live in Sweden. I'm a single mother with two boys; 10 and 14 years > old. We all have CMT 1A which partly effects us the same ways (we all > get quite easily tired and need orthotics) but we are also effected > in different ways. My oldest boy Pierre is the only one in our family > whos feet have ben operated (twice), my youngest son Patric must on > the other hand for example take the med. Prepulsid before every meal > because of his stomachproblams. Probably are his intestines effected > by CMT; they work too slow. The med. helps him though very much so he > doesn't suffer from pain and illness so much as he used to. > Since I was on the list last time I have taken contact with different > relatives of mine I didn´t know before who also have CMT, I guess we > are quite a big " CMTfamily " . We are all different effected in many > ways. Some can't work at all and use scooters. Some of us have pain, > others don't. And one old man for example - he is over 80 years - > just have typical CMT feet with high arches but no other symptoms at > all. He is stronger than most men his age and takes care of his sick > wife, the house and everything. And then there are several cousins > who are like me; we walk mostly without sticks or anything (sometimes > when my legs don´t want to move and feels like dead stocks I use a > crutch) even if a little unsteady, we work part-time, experiences > pain and light depressions now and then. > > I must congratulate you to this list, it has really developed with > the bookmarks and everything. Grate when you want to search for > specific topics. > > Many warm regards to old and new members from Rose-Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
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