Illeostomy and Cpap problems

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319
Nordakotan

Any solutions to Cpap causing belly bloating and gas/air filled pouches?  I can’t wear one for over a couple hours and my gut fills up with air.Belly distends to where I look like I’m 3-4 months pregnant (not good as I’m a male!) and it is very painful.  Then I’m up for a hour or more as the air moves through.  I have literally given up using one (and the last sleep test I woke up 51 times in a hour). My primary dr isn’t very aggressive at getting me back in for another sleep study so I can find out if I qualify for one a person wears internally. I’m on Medicare and am 66.75 years young and have had my illeostomy since 1986.

Any help will be greatly appreciated on how to maneuver around this problem.

AlexT

They make a mouthpiece that you wear at night that can help a lot. Kind of expensive cause they are custom made for each individual but might be something to look at. 

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Bill

Hello Nordakoton.

When I first started with a CPAP machine I had similar problems with air entering the digestive system and bloating me to the point where I thought I was going to burst.
I reasoned that it was probably due to the (full) mask I was given, which covered both the nose and the mouth. Hence, I made a device (out of copper piping) that only allowed air through my nose, and I also made a chin strap to stop my mouth opening whilst asleep. This worked well, so I shared the experience and the devices with the consultant on my follow-up appointment.
He was impressed and amused at what I had made and told me that they already had such devices, which are called 'nose pillows'. Apparently, the nurses don't give them out because they are a little more expensive than the full face masks. (they also do chin straps!)
After some discussion, he agreed to prescribe these alternative devices, and since that time I have had none of the problems you describe.

I don't know if what worked for me might also work for you, but it might be worth a try.
Note: Sometimes it's worth discussing these sorts of problems with the manufacturers as well as consultants.

Best wishes

Bill 

PS: I have tried several different nasal pillows from different companies which have all worked reasonably well. The one I'm using at present is: ResMed Swift FX nasal pillow system REF:61501. which has three sizes of pillows in the pack.  www.resmed.com 

Bill
Reply to AlexT

Hello Alex.
Do you have a contact for these mouthpieces? I have tried making my own, but so far they have been unsatisfactory!

Best wishes

Bill

Beachboy

Hello all,

My lifelong best friend, now 65, has suffered irreversible brain damage from oxygen deprivation.  Doctors believe CPAP was primary cause.  Somehow while sleeping, not enough oxygen was in his CPAP air flow.  

First clue something was wrong.... he gained 150+ pounds in a couple of months.  His family couldn't figure out what was going on.  So his wife stayed up one night to watch him.  Turns out he was waking up more than 8 times, driving to fast food places and gorging on food.

He would forget he ate, and his brain didn't send the signals his stomach was full.  My friend now weighs 300+ pounds, after never weighing more than 160, so quite a dramatic change.  Currently he's bedridden, no longer talks much, and doesn't recognize most family members.  He was extensively checked for stroke and Alzhemiers, but has neither.

Of course his is an isolated case, but I wanted to post it.  Be very careful with any device that regulates air flow.  Especially while sleeping.

I can't chew gum or drink through a straw..  Doing so introduces excess air into my body resulting in a bloated bag. 

I hope a safe and effective CPAP solution is found for you.

 

 
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AlexT
Reply to Bill

You can look at PureSleep or SleepApnea.Org . You can see the mouthpieces on there. I’m sure dental places can make custom ones also. 

Bill
Reply to AlexT

Thanks , I'll do that!

Handy

As a nurse I recommend you work with your provider to find a good solution for your needs. Stopping the Cpap is the worst thing you can do. Cpap prevents serious lifelong complications like high bp and diabetes. Please talk to your provider asap!

Justbreathe

My hubby wears a nose pillow but he must also wear a strap to keep his mouth shut (yes, yes, I know there is a joke there somewhere).  I purchased one on Amazon  

AlexT
Reply to Justbreathe

JB, I’ve never heard anyone call suffocating someone with a pillow a “nose pillow”. 🤭😉 

Beachboy

This post was deemed incompatible with common sense.  Thus it has been edited out of existence and was last seen rolling around the bottom of a recycle bin.

Bill
Reply to Beachboy

Is that the joke?

Justbreathe
Reply to AlexT

Ha !  If I wanted to suffocate him it would take more than a nose pillow - prolly a mattress 😝

Justbreathe
Reply to Beachboy

Of course silly - - - try Amazon, they have everything …tell your friend…..mike drop and exit….jb

Beachboy

Actually noticed my reply needed more detail.  JB said her hubby wore a strap to keep mouth closed.  I was jokingly thinking of procuring one for my "better half."   So "me bad"  I had the full text of what my message should have said in my head... but only wrote half of it in my post.  

 

AlexT
Reply to Justbreathe

😁

Nordakotan
Reply to AlexT

Thank you Alex.  I will check into a mouthpiece. I have a friend who got one through his dentist but insurance didn’t cover it.

Nordakotan
Reply to Handy

I appreciate that advice.  I received my first cpap in 2010 and tried in vain to use it properly. It was a full face mask.  I even shaved my beard off to get a good seal.  Fought with the “air gut” and maxed out pouches, along with sore pressure points on my face.  I know it worked but the side affects were unbearable.  I switched to my st a nose cone and chin strap - same problems.  Switched to “air pillows” around 2018 and gave them up in 2019.  Even after adjusting the air glow down by the cpap provider. Now I don’t wear it at all and I know I should.

Sad part is 99% of the therapists, cpap providers AND drs have no clue  about how the body works - or doesn’t work with a illeostomy. For instant, I can’t count the number of times I’ve had to tell drs not to give me timed release medications orally.

i wish there was some one or some organization that could actually reach out and address this issue with solid information.

I've had my iliostomy since 1986 and have been very fortunate to not having any problems with skin or blockages.  I can eat most anything in moderation!  Yea!!  But this  situation has almost beaten me at 66 years young.  But I will continue to search for the solution.  Somewhere, someone has to have a answer for me.

By the way, I do appreciate the suggestions I have received so far about the pillows.  I will be looking into the mouth piece.

Beachboy
Reply to Bill

Nah.  My post lacked context.   Needed more words to make proper sense.  This is what I get for posting stuff at lunch time at work when I'm pressed for time. 

Justbreathe
Reply to Beachboy

Even tho it was “halfast” it made me laugh at last   jb

Beachboy

Just heard yesterday, my friend with the brain damage from lack of oxygen, has been put on hospice.  A sad end. 

 

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