Is it normal to battle chronic constipation in HD? My husband is at a point in his disease where he is requiring more help. Mentally he is having a harder time processing things. He is stumbling more, too. He has been battling severe constipation for several months. I'm thinking this is a part of the disease because of muscle control. Any input?

I am so sorry that your husband's disease is progressing. It is not written in any medical books, but yes, constipation is a problem in HD. Basically it has to do with muscle movements and the result is that the bowel movements are unusually wide, to the point where they often won't flush down the toilet. Someone asked this question on a discussion list years ago and quite a number of people chimed in that they or their loved ones with HD were having this problem.

Bowel incontinence can also be a problem, independent of urinary incontinence. The person doesn't get the appropriate signal - bodily feedback is impaired in HD. I recommend bowel training. Choose a recurring event such as a morning cup of coffee and then have the person try to go. Eventually the body will condition to having a bowel movement after the morning cup of coffee. This will reduce both constipation problems and incontinence problems.

Yup.

Definitely an uncomfortable and unpleasant issue a while ago. Folks at Baltimore HD Center recommended a mild laxative. We use MiraLax which is blended into Ms. America's daily protein laden milk shake. It works . As Marsha noted, routine helps. All concerned more happy and less bloated

Wouldn't it great if every HD side effect could be as easily addressed. "Take a pill, you will feel better."

from the south of Maryland,

Fred Lothrop

well....such an odd subject lol but one that is definatly an issue. for the past 2 weeks Donnie has been having a lot of trouble going to the bathroom. before this, he was like clock-work every morning after breakfast.
I didn't know if this was an issue due to HD or not because 2 weeks ago Donnie stopped dipping tobacco and he thinks that is the reason he is having trouble.
What do you'll think?
Also I have noticed for a VERY long time that Donnie has trouble peeing when he goes to the bathroom. He might stand there for up to a minute before he can go.
Is that also a issue for HD patients?

Liz

Liz,

My DH has made excuses, too, for his problems. He even blamed his Zoloft and took himself off. When he still couldn't poop, I convinced him that it wasn't the Zoloft and he just started back on it.

Yes, peeing is an issue, too. He tried every medicine out there and finally found Vesicare helps. The Urologist even did an ultrasound of his bladder. Vesicare is VERY expensive but it helps.

Kristen,

How long has your husband been diagnosed? My husband was diagnosed 3 yrs in aug. of this year. But he has been symptomatic for about 5 yrs. His CAG count was 45. He also suffers the most, mentally . His balance and coordination is also very off.

Does your husband freeze all the time. The last few months Donnie just can't get warm and before, he was always a very hot natured person.

Liz

Liz,

It sounds like we are living identical lives. My DH's cag score is 48. He was diagnosed 5 years ago and had recently started progressing quicker. Mostly mental with some balance and coordination issues. I just quit my job to stay home with him. He has panic attacks when left alone.

He is always cold now too. His hands are always freezing. He has been losing weight in the past 6 months. He was always a stout man, broad shoulder, very strong. That's not the case anymore. He is down to 178 lbs. His shoulders are bony now. He is losing muscle mass along with weight. And as I try to fatten him up, I only manage to fatten myself up. Haha!

Kristen,
I totally understand and yes it seems like our lives are so much alike. How old is your husband?
I am still trying to work but it seems like it is starting to get harder everyday for him to be without me. He will call several times a day and I have to come home for lunch at 12:00. not 12:05 because it makes him a nervous wreck and he is calling me. My sister ask me to go to Nville with her at the end of the month on a work trip for 2 days, well when I mentioned it to him he just broke down and started crying and said "I can't make it without you" he cried and cried all day about it even tho I re-assured him that It was okay and I was not going to go. If I go to the grocery store or church or run any errands, he is calling me to see when I am coming home. He won't hardly go anywhere anymore and if he does, he is ready to go back home very soon.
lol....I just had to stop typing and answer my phone. It was Donnie. He said " what are you doing?" I said "working a little. what are you doing" he said " I just called to talk to you" I know someday I will long for him to just be able to call me so I try to be patient with him.
Donnie is opposite on the weight. He has not lost any weight, he has probably gained some because he doesn't do anything. He has been off work since Oct. 28th of last year and the only exercise he gets is taking his little dog outside to the bathroom (which he does atleast 50 times a day).
He has got to where he doesent want to take a bath because he says it makes him too cold. He takes one on Sun. morning before church then it is usually Fri. or Sat. before he takes another one.
It is really helpful talking to you.

Liz



Edited 1 time(s). Last edit at 02/13/2015 10:14AM by eteeftaller.

Once again I have to say we are living parallel lives. I deal with the same. Our kids have a field trip at school in a couple months going to New Orleans. We live on the Alabama Gulf Coast. When I told Rob that I was thinking of going with them, he freaked out. Obviously I won't be going. I can do short trips in town to the store, but that's about it. He doesn't talk on the phone anymore because it's getting to hard for him, but he will text me.

Rob is 42. I am 41. He hasn't worked since 2009. Thankfully he gets Social Security Disability.

Where are ya'll from? How old?

Kristine,
We live in Waynesboro, Tennessee. just north of Florence, Alabama.
I am 42 and Donnie is 44.
How many children do you have? how old?
We have one son who is 22 and has tested negative for HD. Praise the Lord.

I have a pretty long blog on here called "my story" if you ever have time you can read it. It will give you some insight of how the last 2 years have been for us.

Donnie is drawing short-term disability from work and we have got to get him signed up on his long term asap.

Liz

Kristine

this is concerning your other post

I have not heard of that clinic but we were in the same boat. When Donnie was first diagnosed we were seeing a dr in Lawrenceburg, Tn. He was a neurologist but he had never had an HD patient. His famous words for me were always " unfortunately that is just part of it" I got soooo sick of hearing those words for a year.
We now go to an HD specialist clinic in Nashville, Tn. It is part of the Vanderbuilt Medical Center.
His name is Dr. Daniel Claaussen. and they are great!!!

Liz

Liz,

I'm glad you have a good clinic now. I'm so excited for our March 6 appt.

I just read through your other post. Wow! It's been tough couple of years for you. Thankfully Rob is pretty mellow. He gets stressed and can't handle changes, but he doesn't have outbursts.

We have 12 year old boy/girl twins. We don't have to worry about HD with them. We used donor sperm and IVF to have them. I thank God every day for that!

After reading your post, I wanted to say that Rob also suffers from severe headaches and sleep problems. Even on meds, he only sleeps about 4 hours a night.

Kristine,
I am also excited for your appt. I hope they help you and your husband. there is so many areas that are effected.
I am sooo happy about your children. Twins? wow!! We started fostering children before Donnie was diagnosed. right after Dalynn left for college. We had MAJOR empty nest, lol.
We have 2 foster sons right now that I am planning to adopt. (not Donnie because he is not mentally able to deal with all that involves) they have been with us for almost 3 years now and I love them dearly. They are 12 and 17.

Donnie also had severe headaches for the longest time but Dr. Clauussen has put him on a medication that has really helped.
and also his sleeping was terrible!!!! I was at the point that I had fixed me a pallet on the floor to sleep but he is also on a great medicine for that. Idk what it is right off, but I will find out for you

I feel like I have a new friend.

Liz

Yes, I'd love to know the medicine. He takes Ambien. His doctor prescribed Lenesta but insurance won't cover it.

Do you have a Facebook?

yes.

Elizabeth Teeftaller Waynesboro, Tn

and I will get you a list of his medicine

Liz

I am on my computer at work and I don't usually get on this site on the weekends and I'm off Mon. and Tues of next week.
Friend me on FB and we can private message.

I already sent you the request. At least I hope it was you. LOL

Kristine,
Yes I got it and I accepted it. You have a beautiful family.
I hope you had a good weekend.
Liz

Kristine,

here is a list of Donnie's medacines:
Morning:
Lexipro, Risperidone, Gabapentine (also known as Neurontin) (that is for his headaches. it has really helped), Donepezil (this one is new that they gave him at his last appt. it is suppose to help with his memory)

Night:
Risperidone, Gabapentine, Colnazepam


Liz

Yes it is, my daughter also has had it for 3 years or so. It is the side effect mostly from her medications. I now givr her Nature's Sunshine LBS 11 Lower Bowel Stimulant , it is a Herbal laxative, at first I gave her 4 capsules and that was to much, so now I gave her 1 or 2 everyday as the nurse said she only needs to have a bowel movement 2 times a week. but my daughter a lot of times won't take them as she's afraid she'll have an accident. Hope this helps! marnagay