Old 09-18-2015, 06:45 PM #1 (permalink)
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Default Bowels Affected?

Hi everyone. Things are gong down hill at a rapid pace. Today hospice had the SW come in for the "talk". My father's bowels appear to not be working and he is constantly constipated. Nothing they have done has resolved the issue and they won't do anything more "aggressive" than an enema, suppositories and manual 'excavation' because his breathing gets out of control.

By making the choice to not go off hospice and pursue something more aggressive, including diagnostic tests that he can't handle, we are at the end as far as things that can be done. They said that he could actually pass from this issue before respiratory failure.

Has anyone else ever experienced this problem at the end stage? I am still in shock.
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Old 09-18-2015, 06:53 PM #2 (permalink)
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Default Re: Bowels Affected?

It is a common issue because of weakened muscles, immobility, diet and hydration issues. I can think of 2 of our members who had a very difficult time with this. One died not exactly from it but indirectly as the stress on her body hastened the end. The other person( Janie) was hospitalized and fortunately survived

I am sorry your dad is dealing with this on top of everything else
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Old 09-18-2015, 08:03 PM #3 (permalink)
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Default Re: Bowels Affected?

Sorry to hear that and wish I had something to offer other than my sympathies...

Take care,
Brad
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Old 09-18-2015, 08:10 PM #4 (permalink)
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Default Re: Bowels Affected?

I've been wondering how things were going. You are there with them now?

Sadly, yes it can be quite common towards the end and can be life threatening, or can mean manual evacuations/enemas routinely.

This disease just takes and takes, I'm so sorry.
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Old 09-18-2015, 08:41 PM #5 (permalink)
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Default Re: Bowels Affected?

I am Tillie. Got here last Saturday. We're in a bad place right now.
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Old 09-18-2015, 10:33 PM #6 (permalink)
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Default Re: Bowels Affected?

We dealt with this for quite a while as well. I added psyllium fiber to her diet as a stool softener and to try to keep her bowel motility active. I think it helped, but from time to time I had to resort to manual evacuations. It was in the category of the routine inconveniences we got used to, but for Annie it wasn't life threatening. We just tried to stay on top of it so it didn't develop into an emergency. I chose to perform the evacuations myself so the situation didn't worsen waiting until a hospice nurse could do it. We just proceeded matter-of-factly: slowly and gently. Annie was a real trooper and tolerated the procedure without complaint.

In keeping with Nikki's comment about the weakened muscles, I also used to massage her abdomen to try to replace to at least some degree the ability to "push" that her abdominal muscles could no longer do. This definitely helped when she had the urge but not the ability.

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Old 09-18-2015, 11:13 PM #7 (permalink)
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Default Re: Bowels Affected?

Larry required manual intervention for months, way before end stage, as have other people here. But he also did fairly well on a much reduced frequency, not uncommonly as much as a week (not that this necessarily works for all; he had a pre-ALS aortic dissection that changed things). And hot coffee when the time came. It is not the colon "not working" as it is still processing waste; it is the muscles that push its contents out. We didn't do enemas or suppositories (we tried the latter a couple of times but they were not helpful). I can't think of how or why you would want intervention to be more aggressive, though, so don't sweat that.

Hydration and dietary balance -- not remembering if your dad has a tube -- were the keys to Larry's comfort and longevity under those circumstances. But at this stage, Star, it's about comfort, not longevity, no? Don't worry too much about fixing things or what will spell the end (it's kind of everything). Think comfort. As Phil said, you could also try massage, though that was not possible in our case. Maybe mild heat to relax what muscles there are.
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Old 09-22-2015, 01:42 PM #8 (permalink)
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Default Re: Bowels Affected?

Constipation is definitely a side effect of opiates as well as because ALS muscles just shutting down. My PALS has been on Lactulose for months (draws fluids to the colon to prevent impaction, dry stools - hope I said that right.)

I now supplement weekly with a suppository and his movements are pure liquid.

Hope this helps.

Sherry
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Old 09-22-2015, 02:30 PM #9 (permalink)
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Default Re: Bowels Affected?

it requires constant vigilance to keep the plumbing working. I have done it all also; and daily enemas are a way of life. my husband has started using the bipap while he poops because it gives him more energy to push
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