For those of you who don't know me my 17 year old daughter has JHD.Over the past few months she is going more frequently to the toilet.The doctor put her on Ditropan which is for people with an irritable bladder.However I have noticed this is more psychological though as she will then sit there for over an hour still insisting she needs to go,despite already doing her business.So far she has never 'wet' herself and is dry through the night.She also says she needs a poo alot,but the doctor assures me she is not constipated and she has regular wheat/bran for breakfast.I can say to her you have only just got off the toilet,but 15 minuets later she will say she wants to go again and have the smallest of tinkles and sit there for ages again.She can get aggressive if you try to get her off or become very emotional.I have even resorted to bribery if she won't move.Some days are worse than others.Does anyone know a solution that worked for them or do you think it is now time for nappies,or diapers I believe you guys call them?Any suggestions gratefully received!!!!!!!!!

My mom has had the same problems you mention about your daughter . But , mom is now further along in this part of the disease progresion .Mom is now incontinent much of the time . she does feel like she has to go , even when she doesn't need to . she can want to go back to the washroom , minutes after she was there . And of course she also has many times , no warning from either her bladder or bowels . She does wear incontinent products . Mom is on meds to see if we can help her bladder . Those meds have helped , maybe the smallest amount . And yes , similar to your dear daughter , Mom , would get upset if you try to mention , she had just been to the washroom 2 minutes ago . . my best. db

I think some people with HD aren't good recognizing the passage of time. Waiting two minutes or two hours to pee is somewhat similar. I never cared too much unless I wanted in there. I also wonder sometimes if they don't like the bathroom because stimulation is small.. low noise and movement. I kinda like it for the same reason now that I mention it... I sort of worried about hemorrhoids but she never complained about them. With my wife incontinence followed fairly shortly afterward. Adult diapers are now referred to as briefs around here... it does sound more grownup.

Having a similar problem here....especially if we are taking a car ride..we usually stop 3 times on our one hour ride to my moms. If we go somewhere local the first stop he makes is to the bathroom, be it min's from home or not. Eric the passage of time theory sounds logical it's like there is a memory that he had to go but no real memory of going recently so therefore GOtta Go!

gotta say though having Bill and two teens in the house leaves for very little bathroom time!

Is it possible she has a UTI that is undetected?

Edwina

Hi Blondie,reading your post brought back memories for me,Michael had exactly the same problem.We went down so many different paths trying to find a solution to this problem,he was tested for diabetes,IBS and lots of other things,all negative.I know how demanding it is,its also very frustrating,he would need to go literally 5 minutes after just being.He could need to go up to 40 or 50 times a day.In our case the problem was psychological,any slight 'twinge',resulted in a toilet visit,he could not differentiate between the slightest of twinges and the real thing.For us the problem resolved itself,it passed like a phase,though it was an annoying and tiring one.I hope that you find a solution to this problem soon.Take good care.Gordon

Hi Blondie,

It has just struck me that we had this trouble with Kieran and I had totally forgotten.

We had a toilet chair but we'd put him to bed, attach all the tubes needed to feed him overnight with his medication and the formula and he'd ask to go to the toilet. Then he'd sit there for ages doing nothing after we took all the tubes out, then put him back and he'd want to go again. If we said no he would cry - that brings back some awful memories. I'm sure he wore pullups so I don't know why he insisted on going to the toilet, maybe because he was toilet trained, but then again so was Bailey and we didn't have that trouble with him.


Buddybird

Hey--brand new newbie here, and I've got HD, (trying to catch typos too!) I love your forum, and did want to add to the toilet trouble discussion, since, well, I'm way dealing with that now too! Feels so odd, that's never been a problem for me in the past, I've just always know, okay, must go to the bathroom, not even really thought about in a conscious way, but for awhile now, I just haven't been able to really tell as well, like soon anough sometimes, and I'm racing there just in time, like, since time too, passes in a different way, like it's real real hard to sense that hours go by, I'm constantly having to look at the clock.. And my body kind of feels numb, like my usual ability to sense my body's needs are muffled? So, yeah, I find, sometimes I get up to head on in, but get distracted for awhile, and my memory is shot, then suddenly I'm like, oh, yeah, I better just go in to be safe, I do that a lot too, like, just afraid, I guess something disasterous will happen if I don;t keep doing this!

And I have pads and diapers, and lots of bathrooms right nearby, but I am constantly 'just checking', also had all the tests for diabetes, now I also think, for me, since food is hard to eat real well now, I cut things into tiny pieces and drink lots of water, juice and coffee with each meal, soooooo that makes it all worse.. Now I've been easing back on that, and just make sure I'm well hydrated and all, but I no longer drink gallons of those things, so that, not taking lots of fluids in, helps keep this in check! It is tiring tho, at least I have a real nice bathroom to spend all this time in.. LOL Now if I could just get a phone, TV and mini-fridge in there..

Vicki



Edited 2 time(s). Last edit at 03/24/2010 01:50AM by Ravchik.

Thankyou Vicki for your insight as to what maybe going on in my daughter's head!Welcome to the bored,although sorry you have to be here in the first place.

Hey! Not a problem at all, so glad I could help, it's just one of those things I happen to be going thru right now too, and did see several different specialists about! Thrilled all my tests for that came back negatve, but yeah, finally understood a bit more about my own personal 'cause and affect' action that just made it all worse.. And thanks too for the welcome, I truly wish you and your daughter all the best--take good care of yourself and have a great day..
Vicki

Vicki,you want to start a new thread as most people won't know your here.They even have a new here smiley!!There is a lot of nice people on here with lot's of support and advice.

Thanks, I'll do that, a bit later--nap time right now..
Vicki