Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 Sharon, Here's another message for you! You are so helpful I just want to send a big hug! Your situation and my mom's sound somewhat similar. And yes, I do understand these are your personal experiences. The input and feedback is very reassuring, however! I am guessing my mom has some blockage which contributes to the constipation. The GI doc doesn't want to do a colonoscopy: thinks we'll never get her cleaned out sufficiently. But since thisis getting worse after nearly a year on antibiotics for the UTIs, I am beginning to suspect an internal problem. And since she is nearly always on antibiotics, naturally it's worse. She is on Miralax 2X/day and Citrucel 1X/day - and still constipated. We give her suppositories, and then we have the opposite problem. So complicated. Then there's the fungal infection - a yeast which won't go away. We tried Diflucan, but it didn't work. She's now on a " third-line " (extremely strong for when nothing else works) med called V-Fend. It makes her very tired, increases confusion and tremors. Poor lady. Her UTIs include the oddest assortment the MD has encountered in one person. Again, althoug h I'm not a clinician, I suspect a structural problem. With her dementia and suspicion of MDs, getting her checked out is a near-constant problem. Becuase of some psychiatric issues, she takes Seroquel, and cannot then take macrodantin or nitrofurantoin. They mix badly with the Seroquel. What a mess! But i still say thank you to you - and everyone here - because hearing from you is close to the only thing giving me strength to continue. Sharon, you and my new friends here are in my thoughts and prayers. Lin LadySmilingAtU2@... wrote: lin, there are some over the counter things like benfiber that you can mix with food or drink to help keep her regulated. they had me on that in the hosp when i had a severe intestinal block. i also take prescriptoin zelnorm to regulate but i have chronic bowel issues due to my medicines. benefiber and other like products can be used to help make a person normal. benefiber is mostly tasteless and can be mixed with food or drink *i dont recommend mixing with soda gives it a flat taste* and the dosage can be adapted to each patient. as for chronic utis, i can speak again from personal experience but i do not know how these medicines affect lbders. macrobid or macrodanton can be taken long term as a preventative for someone with chronic utis. dosage is usally 100mg once a day maybe twice but not often. methenamine 400mg is also another medicine to help control chronic utis but they are horse pills. and need to take them 4 times a day. i would start with the macrobid or macrodanton first. also for chronic yeast infections, there is a tablet called diflucan taht can be taken to prevent or heal yeast infections. and i take one or two monthly to keep the yeast infections in check as i take antibiotics on a regular basis. i want you to understand tho, that this is all my personal experience and as of yet i havent been diagnosed with lbd although we are watching for signs and symptoms of it. and i am like you a non medical professional, i am a professional patient. all i can do is tell you what helped me, personally. and for the uti's and yeast infection what always helped me in the past wasnt very lady like but very very comforting was keeping cold (from the refrigerator ) and wet but well wrung, 100% cotton washcloth and put it across my privates. it was cooling and comforting as my utis' burn burn burn. also cornstarch from the grocery store and use very very freely as a powder as it draws the yeast out. i hope this info helps, good luck and hugs, sharon ---- l pratt wrote: Dear Sharon, again! I must not be reading postings in order. Sorry for multiple messages. Here I could use some help re UTIs and constipation. What you describe is my Mom's situation. Constipation really bad - once we get her on a decnt amount of laxatives, then the opposite effedt sets in and she's miserable but for opposite reasons. Also she hs nerly chronic UTIs, and all the antibiotics have now led to a fungal infection. The mix of meds to treat the infections seem to be worsening her confusion, depression, frustration, tremors and sleep. The MD's response is that we have to treat these infections, which I do understand. And I know folkswith LBD are generally limited in meds to counter the anxiety, etc. So we are adding to her Seroquel, which ALSO increases tremors and makes her very groggy. Any ideas, anyone, about any of this? Thank you all for being here. Lin LadySmilingAtU2@... wrote: oh my, does the comment dr jekyll mr hyde bring back memories, that is exactly waht my dad did. and it was soooo bad on sinemet even only 2 doses of 1/2 tablet of the lowest dose did he do that and then as we had to take him off of exelon and namenda it got even worse. daddy would be so evil esp to me and usually only me, and the nurses had to remind me that people tend to hurt the most teh ones they love and trust the most so that in a a very weird sort of way that his outbreaks to me were showing me how much he loved and trusted me. but boy were they ugly, too the point that dad tried to pimp me out to his best friend, quoted him a price and was very specific as to what i would do to /for him. it was awful. on his better days dad would complain that the 'little man in his head'*what he called lbd was being bad again wanting him to say/do bad things. it was very very difficult to convince myself that the disease was talking not my daddy. but you have to do that, you have to separate the perosn and the disease. or you will go crazy in frustration, i like your doctors thinking about what matters is how the patient feels, great doctor, i like comments like that. your bro sil, and director are going to have to learn how to work with your mom, giving her chioces like i did with dad, dad do you want to shower before or after you eat. let him choose and then we did it in that order. dad do you want milk or coke with your medicine. not giving him the option to take his medicines but waht to drink so he felt in control still, all that makes a difference. also fyi, urinary tract infections and constipation can cause severe aggression. i would have your mom checked for both. our lo's cant explain to us what is wrong so we have to treat them like children and figure out what is wrong, for some reason our lo's are prone to uti's. they cannot complain that the pee is burning or itchy feeling and it hurts in the bladder, they just get agitated, same with constipation, anyways just a few thoughts, good luck and hugs, sharon m ---- el62671 wrote: My mothers doctor who is a Geriatric Specialist, has told us that the Parkinson's drugs, like Sinimet, do make the person more mobile, but will eventually have an adverse effect on the dementia. At the time he put our mother on Sinimet 2 years ago, her dementia had stabilized, but she was very depressed about her mobility. It has worked very well, but unfortunately the dementia has reared it's ugly head again-big time! Hallucinations, aggression, paranoia and incontinence. So bad that she was very close to being asked to leave the Adult Care Home, where she has lived for almost 5 years. He said with this disease, you sometimes have to pick your battles and choose what is best for the patient. At every visit, which were many all summer, he said it didn't matter if she was driving everybody crazy. What mattered is how she was feeling, and she was still able to get out of the house with family and friends. She always seemed to be just a sweet old lady at the appointments, until 2 weeks ago. Things had gotten so bad that my brother, sister and the director of the home showed up with mom at the appointment. This was after he had received many call in that 2 weeks. She was in rare form and even he acted very sad about some of her behavior. She told him she feels like Dr. Jeckyl and Mr. Hyde, and never knows who she will be. He finally decided to reduce the Sinimet. He said it would take awhile to see results, and I think some of the behaviors have abated a bit, but she can hardly walk now. -- Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration pneumonia and uti 8/05, died of blood pressure drop on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2006 Report Share Posted September 19, 2006 lin i am so glad i could be of some help, wish i had more to offer, but i would still consider teh benefiber, as i was on all you mentioned while i was in hosp plus benefiber, instead of teh suppostiories to help keep her on a normal track for bowel movements. apple juice on a regualr basis will help too esp the natural apple juice, tastes better tjan prune juiice and i am wondering if the new plum juice mighthel[p too. i love plums so i want to try that. good luck and hugs, sharon m ---- l pratt wrote: Sharon, Here's another message for you! You are so helpful I just want to send a big hug! Your situation and my mom's sound somewhat similar. And yes, I do understand these are your personal experiences. The input and feedback is very reassuring, however! I am guessing my mom has some blockage which contributes to the constipation. The GI doc doesn't want to do a colonoscopy: thinks we'll never get her cleaned out sufficiently. But since thisis getting worse after nearly a year on antibiotics for the UTIs, I am beginning to suspect an internal problem. And since she is nearly always on antibiotics, naturally it's worse. She is on Miralax 2X/day and Citrucel 1X/day - and still constipated. We give her suppositories, and then we have the opposite problem. So complicated. Then there's the fungal infection - a yeast which won't go away. We tried Diflucan, but it didn't work. She's now on a " third-line " (extremely strong for when nothing else works) med called V-Fend. It makes her very tired, increases confusion and tremors. Poor lady. Her UTIs include the oddest assortment the MD has encountered in one person. Again, althoug h I'm not a clinician, I suspect a structural problem. With her dementia and suspicion of MDs, getting her checked out is a near-constant problem. Becuase of some psychiatric issues, she takes Seroquel, and cannot then take macrodantin or nitrofurantoin. They mix badly with the Seroquel. What a mess! But i still say thank you to you - and everyone here - because hearing from you is close to the only thing giving me strength to continue. Sharon, you and my new friends here are in my thoughts and prayers. Lin LadySmilingAtU2@... wrote: lin, there are some over the counter things like benfiber that you can mix with food or drink to help keep her regulated. they had me on that in the hosp when i had a severe intestinal block. i also take prescriptoin zelnorm to regulate but i have chronic bowel issues due to my medicines. benefiber and other like products can be used to help make a person normal. benefiber is mostly tasteless and can be mixed with food or drink *i dont recommend mixing with soda gives it a flat taste* and the dosage can be adapted to each patient. as for chronic utis, i can speak again from personal experience but i do not know how these medicines affect lbders. macrobid or macrodanton can be taken long term as a preventative for someone with chronic utis. dosage is usally 100mg once a day maybe twice but not often. methenamine 400mg is also another medicine to help control chronic utis but they are horse pills. and need to take them 4 times a day. i would start with the macrobid or macrodanton first. also for chronic yeast infections, there is a tablet called diflucan taht can be taken to prevent or heal yeast infections. and i take one or two monthly to keep the yeast infections in check as i take antibiotics on a regular basis. i want you to understand tho, that this is all my personal experience and as of yet i havent been diagnosed with lbd although we are watching for signs and symptoms of it. and i am like you a non medical professional, i am a professional patient. all i can do is tell you what helped me, personally. and for the uti's and yeast infection what always helped me in the past wasnt very lady like but very very comforting was keeping cold (from the refrigerator ) and wet but well wrung, 100% cotton washcloth and put it across my privates. it was cooling and comforting as my utis' burn burn burn. also cornstarch from the grocery store and use very very freely as a powder as it draws the yeast out. i hope this info helps, good luck and hugs, sharon ---- l pratt wrote: Dear Sharon, again! I must not be reading postings in order. Sorry for multiple messages. Here I could use some help re UTIs and constipation. What you describe is my Mom's situation. Constipation really bad - once we get her on a decnt amount of laxatives, then the opposite effedt sets in and she's miserable but for opposite reasons. Also she hs nerly chronic UTIs, and all the antibiotics have now led to a fungal infection. The mix of meds to treat the infections seem to be worsening her confusion, depression, frustration, tremors and sleep. The MD's response is that we have to treat these infections, which I do understand. And I know folkswith LBD are generally limited in meds to counter the anxiety, etc. So we are adding to her Seroquel, which ALSO increases tremors and makes her very groggy. Any ideas, anyone, about any of this? Thank you all for being here. Lin LadySmilingAtU2@... wrote: oh my, does the comment dr jekyll mr hyde bring back memories, that is exactly waht my dad did. and it was soooo bad on sinemet even only 2 doses of 1/2 tablet of the lowest dose did he do that and then as we had to take him off of exelon and namenda it got even worse. daddy would be so evil esp to me and usually only me, and the nurses had to remind me that people tend to hurt the most teh ones they love and trust the most so that in a a very weird sort of way that his outbreaks to me were showing me how much he loved and trusted me. but boy were they ugly, too the point that dad tried to pimp me out to his best friend, quoted him a price and was very specific as to what i would do to /for him. it was awful. on his better days dad would complain that the 'little man in his head'*what he called lbd was being bad again wanting him to say/do bad things. it was very very difficult to convince myself that the disease was talking not my daddy. but you have to do that, you have to separate the perosn and the disease. or you will go crazy in frustration, i like your doctors thinking about what matters is how the patient feels, great doctor, i like comments like that. your bro sil, and director are going to have to learn how to work with your mom, giving her chioces like i did with dad, dad do you want to shower before or after you eat. let him choose and then we did it in that order. dad do you want milk or coke with your medicine. not giving him the option to take his medicines but waht to drink so he felt in control still, all that makes a difference. also fyi, urinary tract infections and constipation can cause severe aggression. i would have your mom checked for both. our lo's cant explain to us what is wrong so we have to treat them like children and figure out what is wrong, for some reason our lo's are prone to uti's. they cannot complain that the pee is burning or itchy feeling and it hurts in the bladder, they just get agitated, same with constipation, anyways just a few thoughts, good luck and hugs, sharon m ---- el62671 wrote: My mothers doctor who is a Geriatric Specialist, has told us that the Parkinson's drugs, like Sinimet, do make the person more mobile, but will eventually have an adverse effect on the dementia. At the time he put our mother on Sinimet 2 years ago, her dementia had stabilized, but she was very depressed about her mobility. It has worked very well, but unfortunately the dementia has reared it's ugly head again-big time! Hallucinations, aggression, paranoia and incontinence. So bad that she was very close to being asked to leave the Adult Care Home, where she has lived for almost 5 years. He said with this disease, you sometimes have to pick your battles and choose what is best for the patient. At every visit, which were many all summer, he said it didn't matter if she was driving everybody crazy. What mattered is how she was feeling, and she was still able to get out of the house with family and friends. She always seemed to be just a sweet old lady at the appointments, until 2 weeks ago. Things had gotten so bad that my brother, sister and the director of the home showed up with mom at the appointment. This was after he had received many call in that 2 weeks. She was in rare form and even he acted very sad about some of her behavior. She told him she feels like Dr. Jeckyl and Mr. Hyde, and never knows who she will be. He finally decided to reduce the Sinimet. He said it would take awhile to see results, and I think some of the behaviors have abated a bit, but she can hardly walk now. -- Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration pneumonia and uti 8/05, died of blood pressure drop on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 I am beginning to suspect an internal problem. And since she is nearly always on antibiotics, naturally it's worse. She is on Miralax 2X/day and Citrucel 1X/day - nitrofurantoin. They mix badly with the Seroquel. What a mess! But i still say thank you to you - and everyone here - because hearing from you is close to the only thing giving me strength to continue. Sharon, you and my new friends here are in my thoughts and prayers. Lin To Lin and all those who have loved ones on antibiotics. Please use probiotics to help the gut. Quite often older people with trashed immune systems get yeasty and full of fungus. Most of the time drs do not order probiotics because they are food supplements. I had my dad on Culturelle X3 a day. He had c-diff and that's a very nasty bowel disease. It did help some before his death. Since it is a food, it shouldn't react with any drugs...it should help. Sara, new to group. Quote Link to comment Share on other sites More sharing options...
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