depression/frustration

[AfraidButNotAlone]

I can barely speak these days. I can't get enough breath to get out the words.

Constipated so bad had to have a nurse dig the "sandpaper" consistency poop out of me.

I can barely move these days. Can't move at all if I am in my bed.

I haven't eaten in two days. My stomach has been so distended due to the bowel back-up. Tube feedings won't empty to my belly. I can barerly swallow my spit.

Can't cough or blow my nose.

This sucks.

 

[krnNdug]

Sorry afraid. I met a pals this weekend who is in a similar state. Something I get to look forward to I guess. I hope the constipation gets better, that is a huge issue with me and my pain meds. I grew up in Atlanta and was able to bring my wife there to show her my childhood area (60's and 70's). Great city but to big for me now.

My wife and I will pray for you and the depression too.

Doug

 

[bigmark1954]

Mannn....it hurts to hear what you are going through. I thought I had it rough until you gave some perspective on what could be worse.
I don't know what you are on for depression, but my doc switched me from prozak to wellbutrin and it has been a little better...when it kicks in you don't really seem to give a
sh!t. You might try some and see if it can do the same for you.
Hang in there!

 

[azgirl]

>..when it kicks in you don't really seem to give a
sh!t. You might try some and see if it can do the same for you.

Mark, but I think he Does want to give a sh!t

Afraid- so sorry. It's all just so hard. Als and every thing about it sucks.

 

[Janie H]

Try warm prune juice if you can get it in your tube, helps me when stool softeners don't work.

Janie

 

[dalvin]

My doc prescribed suppositories, says it's better for pals. So far I've been lucky haven't needed them but got them on hand just in case

 

[slopokahontas]

When I was a CNA, if a patient had this same problem, I would take warm lotion, and rub intestines clockwise firmly. It is uncomfortable at first, but really gets the intestines moving as well a moving gas trapped that can cause more pain. Worth a try if you have someone willing! Hugs sent your way!

 

[LaurieCALS]

This too shall pass! (Sorry-- I just couldn't resist, lol.) just trying to lighten the mood.

Please don't feel bad about needing help from the nurse. They do it all the time. That's what they're there for. It doesn't bother them one bit.

Hope you're feeling better soon. Come back and let us know, okay?

*hugs*

 

[Barbie]

Rob, it sucks so much and I am sorry. hope you are getting massages or rub downs. The constipation--man, what a problem so many have. I hope they are trying everything possible. we had it at our house, our solution was daily dose of miralax and daily enema.


Thinking of you!

 

[Atsugi]

AfraidButNotAlone:

Cannot your primary doctor get you a suppository?

Also, Slopokahontas gives good advice with the rubbing. It works.

 

[SMP51]

a good old fashion Fleet enema and then miralax or clearlax twice a day. Not being able to poo will surely cause depression!
being as comfortable as possible is important so you can deal with this nasty als!

 

[affected]

Oh Rob, I so hate this monster!

Once they get this lot passed you need to take something every day.

For Chris I would start first thing in the morning, before I got him out of bed by giving him 250 ml of water with Movicol in it, and a further 200 ml of water between the flush before and after.

My theory is that getting a good hit of fluid into the system to start the day, with the movicol really ensured that it got his system moving well.

Has the nurse cleared it all?

Prune juice is a great additive that you can have put in the peg after a meal during the day too. Stomach massaging does help a lot too. As many strategies as can be used are well worth it.

This disease sucks indeed, I can see my Chris as I read your words. I wouldn't wish this on my worst enemy and am constantly dismayed at the fact that it seems to hit the most wonderful people who were so full of life.

Please get your wife to get talking to your doctor about a good regime to PREVENT this happening again. It is a constant threat to PALS, but with thought put into the prevention it can be minimised greatly.

Glad you can still type, sucks that talking is so hard.

 

[NeedCourage]

OMG - My heart just aches for your suffering; I got all teary. It's so darn awful !
I'm still new at all of this but I did have a thought - sometimes when I have been depressed or in pain,
I would put on headphones and listen to beautiful music - favorite soundtracks from movies, or the classics.
You can almost transport yourself to another world for a little break.
My heart goes out to you and I will visualize you turning a corner today and finding some comfort.
I wish I had more to offer, and maybe this sounds silly, but might be worth a try.

 

[nebrhahe53]

Sorry for your pain, have you tried coconut oil? Sounds strange but it acted like a laxative for me. About 3 tbsp. hear it also has some antibacterial properties

 

[AfraidButNotAlone]

I want to thank everyone for their support and input.

You guys are fantastic.