To poo or not to poo..

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poppy62

Distinguished member
Joined
Jul 3, 2012
Messages
132
Reason
Lost a loved one
Diagnosis
05/2012
Country
uk
State
mid glamorgan
City
caerphilly
If it feels like there is no 'pushing power', does this mean the muscles inside are being affected now? Hubby says its not just arms and legs anymore...is this an advanced symptom? and does the diaphragm get it? How would that affect him?
Just trying to work out what to expect...
 
Hi poppy, try searching the forums for different options from people who have gone through this already (some of them aren't here anymore but have great tips and advice)... look for JoelC, Al, Abbaschild, RCharlton, and Trfogey... I'm missing a few, but these guys wil give you a good start.

I would imagine that as the core muscles are more affected, it would also affect that. Try leaning him more forward and try that pressure to help out.
 
Yes, pushing gets harder... as the muscles go, you can't bear down! Start some Miralax before he gets a bowel impaction! My clinic dietician recommends using Miralax daily... start with the full dose until good result (it's one capfull in 4-8 ounces of water every day), then taper down the dose until going comfortably and consistently every day. It mixes just fine in water, is clear, and barely has any taste at all. It doesn't cause stomach cramps or any other side effects. Was reluctant to try it at first, but the dietician was spot on! Can't recommend it enough!
 
Hello,
Thank you both HelenL and Sarah. Things are difficult enough sometimes without the plumbing playing up!
I am new to the forums but am already realising what a wealth of information is to be had, and I am so grateful for somewhere to turn, and friendly voices.
I will follow up links suggested, I welcome any advice at all to help me help my hubby through this rotten time he's having.
Best wishes all.
Poppy
 
don't forget to go to the fun threads as well! We can't always be talking about ALS crap here. :)
 
poppy,

In response to your question:[quote and does the diaphragm get it?][/quote]

Unfortunately, yes. The diaphragm muscles make the lungs work and sadly when those muscles go so does breathing. The only way around that is to be trached and vented. In the meantime, he should be on a BiPap to help with breathing.

Good luck to you both.
 
Poppy,
Feeding tube and formula will take care of that problem... But Sarah, Helen and CJ are right.

Jen
 
Hi everybody, thanks for your replies.
We are off to feed the ducks round Caerphilly Castle, inbetween the showers.
What a difference it has made to talk to people who know what they are talking about.
I feel so much lighter today for some reason.
Thank you all...
 
Hi Poppy,
Sarah's reply is spot on. Make sure hubby stays well hydrated and try to get a routine going for the poo(same time every day. Sometimes a stool placed under the feet is good to get a good squatting position and something for him to lean forward onto. University of Miami has a bowel protocol and in the UK there is a bowel and bladder society site that has some good info. Good luck.
 
To address your diaphragm question. Not all patients get respiratory failure at the onset at least... maybe later.... but
my PALS definately has depletion of his diaphragm. It has taken years to progress, but now it is about only 30% function.
He doesn't notice the shortness of breath and doesn't have any discomfort at all. (Thank God.) I notice the repeated
yawning, the open mouth breathing, and the need to nap on the bipap. I understand that if the shortness of breath causes
a panic, then a mild tranqualizer is prescribed. We are delaying that as long as possible because that would relax all
other muscles also.... and not a real advantage when the muscles are getting weak. We take the stand that no meds
are better than meds..... because the med may help one symptom and cause trouble in other parts of the body. You
have to weigh the pros and cons of every situation. My PALS is doing fine and has a wonderful attitude. He ignores the
whole list of symptoms and keeps on going as best he can. Don't anticipate trouble... enjoy today and what you still have
now. Plan ahead only tentatively and make the best of things.
 
Hello Marjorie, and thanks for the info re the diaphragm. Why do the big racking yawns happen, four or five times in a row sometimes? Is this just related to Bulbar? Hubby has been yawning like this for a few months now. We are still waiting to see the respiratory physician, he gets a bit short of puff now and then, nothing major, but I have noticed him doing some odd bits of breathing when he is asleep, kind of harsh and short, loud and as if it is forced out of him?
Clive is not one to take meds if he can do without, and we are continuing with daily life as normally as is possible, just at a much slower pace. Still loving and laughin...even though he's got the emotional thing going on too, we are finding ways to cope with it. I actually don't mind getting up later each day now, lie-ins and love-ins...tv in bed and brunch on a tray!
 
In addition to what others have advised, try suppositories and make sure he goes! Nobody likes enemas either but that might be an option. Being on formula didn't resolve this issue for my husband. Yasmin.
 
poppy62.... Hi. The yawning is bringing more exchange of air. He could be lacking in oxygen, or building up with CO2. A sleep study is required to find out just what the
need is, and then he would be set up with either a Cpap or Bipap machine for sleep.
These are simple machines that just blow air, and they greatly help the energy level
of the patient and the quality of sleep so that he can have the best life possible. Cpap
is used for sleep apnea by millions of people without ALS. I recommend not using humidity in a Bipap and just adding it to the air if necessary. Humidity sent through the
machine causes fungus and rashes. My PALS has used one for a few years with no rashes or fungus. (We very infrequently wash the mask and hose either.) Youand your partner will get used to the sounds of the machine, and you will both just be thankful for the benefits it gives the patient.
Sleep apnea often accompanies ALS. You don't want your PALS to be skipping breaths
or slowing down in breathing while asleep. Sleeping partially sitting up helps NOW and
from now on.
 
Marjorie is correct in her first few sentences, but be careful... CPAP is not appropriate for PALS. It is too much work for a weakening or weak diaphragm. BiPAP is prefered for PALS because you do not have to exhale against a positive flow of air. Also, the newest BiPAPs with humidifiers are designed in a way to provide beneficial moisture without the mold and fungus problems. I know I can't use mine for any length of time without the humidifier on! I get dried out rapidly and that just plain hurts!
 
Hello, and again, warm thanks for all the information and advice from everybody.
I read out to him messages re help to poo...the suppositries were well received...and we are reviewing dietary/fluid intakes too.
I have one stubborn hubby, and like the resistance to peg/tube feed, he also doesn't want any kind of artificial help to help him breathe...
He has long-term anxiety issues, and fears everything new. We dont know enough about the Cpap and Bipap and part of me doesn't want to know but a bigger part does, it's reassuring to read about the benefits of the machines but how do I get him to even think about it?
Any words of advice I can share with him are very welcome.
He sat with me and read the posts, he doesn't mind what I ask, he is glad we have found a new source of support, especially for me.
Hope you are all keeping as well as you can be...

PS How do I access archived information please?
 
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