Abdominal Bloating

[shelly2612]

Do any other pals find this to be a problem? My hubby looks like he is about 8 months pregnant. Is there a reason associated with ALS?

 

[rose]

I just saw a gastro doctor who works with my ALS clinic. What you are describing seems to go with gastroparesis, although there is a lot more to it than just the bloating. If your hubby has been eating a diet high in fiber content, especially raw veggies, that will cause bloating. See if eliminating them makes a difference. I was told that carbs are my friend, to avoid high fiber, the worst being raw brocoli and simlar, avoid high fat as well. In other words, keep up the caloric intake, but do it with mashed potatoes, rather than a hard to digest fatty food, and avoid insoluble fiber most of all.

Ask his doctor if he can take prilosec otc, it helps because the stomach acid can contribute to bloating....maybe start having him take miralax on a daily basis, this doctor told me it was the best one for keeping everything moving through.

good luck to you both

 

[Al]

Sorry I don't recall how far along your hubby is but if he's in a wheelchair, pretty well everything he eats is going straight to the waist and there it stays. Most people say I look healthy, not fat.

AL.

 

[agneta526]

Enough is Enough

Hi, I have read this forum on a pretty regular basis. My problem started 2006 and I was diagnosed in Nov o8. wiith ALS. It started with limb onset, dropped foot, and the last few months a bulbar onset. I am losing my independence and dignity. In spite of all devices, I cannot walk any more, cannot get in and out of bed by myself, or out of a chair. I have a supportive family, but the ALS is progressing quickly, breathing etc and I don't want this anymore. I still have my mind but that is about it.
I admire all the people here, living with this disease, but I cannot anymore. My nights are painful, cramps and pain in my legs etc. My days are empty, sitting in front of a computer, cannot take care o my house or help any one with anything, I don't think there is any cure for this in my life time and I have researched ths thoroughly,

I think my family and loved ones would be better off without me and not being a religious person I think I have had enough, I am sure I am depressed deep down, who isn't with this disease and I don' believe in taking pills ffor depression. What am I covering up? And for what?
I have tried the Positive outlook attitude and it is enough. I am not a "weak" person, I have come through quite a few things in life, an dprobably become stronger becaue of them. I don't however, see the point to this journey.
Just wanted to share some thoughts.

 

[Jennifer51]

Do any other pals find this to be a problem? My hubby looks like he is about 8 months pregnant. Is there a reason associated with ALS?

Apart from food and gas production, I also have a feeling that my stomach muscles have become very slack now...not that I had a flat stomach anyway, but it has certainly got bigger since I got this and I have had a lot of twitching all over my stomach muscles as well, so everything just hangs out now.

 

[Jennifer51]

agneta526.
I totally understand your feelings, I am sure most people on this forum have felt the same from time to time. I know I certainly have and it is not a nice place to be, I also wont take anti depressants having tried them twice.
BUT we must find courage to carry on...I am talking to myself as well as to you.
I know what I have but I continue, when I can to deny it and my biggest dream is that someone will tell me they got it wrong and that someone WILL find a cure VERY VERY SOON. Denial, hope and my family JUST keep me going. I know how hard it is but we MUST try...dont let the beast win.....thoughts are with you, just remeber you are not alone, we all understand.

 

[rose]

agneta526....

Please hang in there, as Jennifer said, most people have felt like this from time to time, I can't know the point in the journey for anyone, but I'm certain your family and loved ones won't be better off without you, so, it goes back to trying to make time count.

 

[Zaphoon]

Agneta526,

Anyone who knows anything about this disease can certainly understand where you've been, what you've gone through and where you are today. Your experience with the disease is not uncommon and like you said, it strips any dignity you've ever had clean away.

This whole thing is tough on you and tough on your caregivers who must stand by and observe your suffering. Having said that, you have family and friends that are pulling and praying for you on a daily basis. They would like you to know how much they love and care for you.

The bravest thing you could possibly do is hang in there for their sake. I know, easier said than done. To me, this is the really, really tough part - being as pleasant as possible for them. My depression can only add to their misery.

If it means anything, I'm pulling for you on this end!

Warm regards,

Zaphoon

 

[BethU]

Agneta ... you sound like a very strong person. This disease is probably the toughest challenge any of us will ever face.

I have had mood swings into anger and depression, and when I was in those moods, my thinking seemed to me absolutely logical and "right." But I found out that these negative moods were part of the disease; with ALS, especially when it reaches the bulbar area, our emotions are affected by the chemical changes going on in our brains. When the doctors started treating me for emotional lability, suddenly I was "myself" again, and the anger and depression went away.

I know you said you don't believe in taking meds for depression, but in ALS, depression is not a situational response ... "I'm sick therefore I'm really depressed" ... it's part of the actual disease process itself, along with weakness, atrophy, slurred speech, etc. And it's one of the few ALS symptoms doctors are able to treat.

Saying you don't believe in taking meds for depression is like saying you don't believe in taking aspirin for fever, or penicillin for pneumonia. Accepting medications is not a sign of weakness; these meds are a treatment to counteract chemical changes going on in your brain.

You sound like a fighter, and I hope you let your doctors use all the tools in their toolbox to manage your symptoms.

Hang in there.

 

[agneta526]

Enough is Enough

Thank you for trying to make me feel better. People's attitude on this forum is great.
I'll try again, it is just so discouraging and I was, like so many of you< used to such an active life. Working, driving, etc and now I just feel destructive and useless.

Guess things could be worse, and I'll give it one more try. Thanks for answering me

 

[brendapals]

agneta,
Yes, ALS is a crappy ole problem, isn't it? Like the others said before me, everyone is certainly entitled to be depressed. I sure hope your family lets you be depressed.

I was diagnosed in June 08, and, like you and so many others on here, it's weird to think back on my activity level, compared to now. But I managed to help my family clean up limbs all over our yard today-leftovers from an ice storm last week.

I'm sure I won't be able to move tomorrow, but I knew that going in,
please don't hesitate to ask questions on here, or if you have a good friend, neighbor, church member, rep from your local ALS Assn-please see if you could talk to them perhaps? A lot of times, it helps to talk to a non-family member,
take good care,
brenda

 

[Zaphoon]

Brenda,

Your suggestion of talking to non-family about the disease should not go unheeded. My immediate family is as clueless about ALS/PLS as I was a year ago. They don't realize how devistating this is because I not only feel and see things changing NOW but can also see how things are going to be down the road (and the road is looking kind of short, too!).

It helps to vent the frustration of it all to those who are not connected with you on a daily basis.

I might call on a few friends I've not spoken to in a while just to say, "Hey, ever heard of MND? I'm taking a poll!" Hey, not a bad way to spread ALS/MND awareness!

 

[swi71]

Do any other pals find this to be a problem? My hubby looks like he is about 8 months pregnant. Is there a reason associated with ALS?

Shelly--
This has happened to my husband as well--do ask a dr. Gerald was just in the hospital for 12 days. When we took him in they were concerned about the bloating (we had gone to the ER for breathing problems and vomiting). It turned out that his gall bladder was bad and they had to take it out. Also, he had bowel problems (since he is wheel chair-bound, the dr explained his bowel doesn't always clean itself out the way the bowel of those of us that are mobile does) and the dr cleaned him out completely. Gerald can't communicate, so we don't if all these problems had been going on for a while or if they were related. Can your hubby communicate?
Sharon

 

[angel4399]

Been there done that.

Hi, I have read this forum on a pretty regular basis. My problem started 2006 and I was diagnosed in Nov o8. wiith ALS. It started with limb onset, dropped foot, and the last few months a bulbar onset. I am losing my independence and dignity. In spite of all devices, I cannot walk any more, cannot get in and out of bed by myself, or out of a chair. I have a supportive family, but the ALS is progressing quickly, breathing etc and I don't want this anymore. I still have my mind but that is about it.
I admire all the people here, living with this disease, but I cannot anymore. My nights are painful, cramps and pain in my legs etc. My days are empty, sitting in front of a computer, cannot take care o my house or help any one with anything, I don't think there is any cure for this in my life time and I have researched ths thoroughly,

I think my family and loved ones would be better off without me and not being a religious person I think I have had enough, I am sure I am depressed deep down, who isn't with this disease and I don' believe in taking pills ffor depression. What am I covering up? And for what?
I have tried the Positive outlook attitude and it is enough. I am not a "weak" person, I have come through quite a few things in life, an dprobably become stronger becaue of them. I don't however, see the point to this journey.
Just wanted to share some thoughts.

It sounds like you have the same experience with this horrid disease as I have had. The same order of progression as myself. I just take it day by day and hold out hope that THERE IS A HIGHER POWER and we will all be out of pain some day. I know this is not much help but this is all I've got today

 

[kylisa]

My mother was having problems with bloating. We thought she was impacted but, when they xrayed her, she wasn't. The gastro toldus that she had a lot of gas in her system. He advised to change her laxative and put her on reglan to help her abdominal muscles work better. He could not officially say it was caused by ALS. What he did say was that her system is too weak to push the bowel movements out on its own. The reglan works the "food" through the system and the laxative keeps it really soft so it can be expelled. I hope you will reconsider your religious stand. If it wasn't for the Lord, we would not be dealing with this as well as we have. He has blessed us with the strength to perservere through this terrible time. God bless you and you will be in my prayers today.