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stomie2016
(@stomie2016)
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November 5, 2018 1:09 am  

I've had Stomie for two years now.   Have struggled with getting a good night sleep, but it is getting better.  I've done several things. 

I've changed my eating habits so that I try not to have a big dinner, concentrate on eating bigger meals earlier in the day, and also try to eat dinner early so I'm not heavily pooping when I go to bed.  

I fall asleep mostly on my left side, generally wake up on my back.    I always wear underwear to help contain the bag somewhat and give me some security in case of a leak.   I've rarely had leaks at night, but when I have had one, I've always woken up before it got beyond  the edge of the wafer so no mess.

In the beginning, I was paranoid about having the bag get too full and was getting up in the middle of night to empty and then having trouble getting back to sleep.  I was too exhausted with that routine, so with eating less for dinner, and letting the bag get full, I now rarely have to empty the bag at night.  I still do get up at least once a night to pee, but that's not such a big deal cause you don't have to turn on the light.  Usually I wake up in the morning on my back with a bag full of poop resting on my stomach, yes, then run to the bathroom quick holding the bag


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sjlovestosing
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November 5, 2018 8:46 am  

Dear Susan,

I read your post and my heart and  a prayer goes out to you. I am a colostomate, so I don't have the issues you do, but the ileostomates that have responded have words of wisdom for you as they have had similar experiences. Wishing you all the best.

Stella


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Jattzl
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November 5, 2018 3:40 pm  
Posted by: Chris

My sleep problems center around just always being aware that I have a bag attached to my stomach as I move around. 

I totally relate to your struggles, Chris.  It is  a problem for me too.  I have additional medical issues that keep me awake as I wear an insulin pump with tubing and a CGM that alarms and monitors me all might.  I don't know if all of that keeps me in a light state of awareness so I notice the bag more but I constantly worry about leaks and am aware of the bag.  The first couple of night-time "blow-outs" (I hate that terminology but it is what it is) I think it was so traumatizing to me that I have lingering worries from it.  Cleaning myself, the shower, the carpet, the sheets all with a startled woken up mind. It is good to hear that for some they have overcome but it doesn't help.  I have learned more of the physical appliance fixes over time and am comfortable with my system but it has not helped the emotional and mental strain.  I guess I'm just saying I understand.

48 years Type 1 Diabetes, insulin pump, CGM, neurological complications, retinopathy, and autoimmune CIDP. Nerve damage led to ileostomy in 1/2015. Joanne


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Jattzl
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November 5, 2018 4:02 pm  
Posted by: Sydneychic

The one thing that really changed the way I see my stoma and bag is to use a bottle of water to rinse it out at every empty.  I feel clean and I hate when I haven't my bottle with me.  It has made such a difference to my confidence.  I also haven't had a leak since I changed to the sensura mio soft convex bags, one piece.  They mould around any bumps and lumps.  I also use a Brava semi circle elastic tape on the bottom half of my bag.  It adds a bit more seal.

 

I use the same appliance and elastic strips and also rinse my pouch every time.  These things have really helped me adjust to a lot of the original confidence problems.  I also dry my stoma with paper towels and then attach a very small stoma cap made for colostomies.  I have an ileostomy but this covers it while I dry off and I can relax after my shower.  It truly changed the way I feel about showers as this was one of my biggest struggles and reasons for depression after surgery. I guess this should be on a showering thread.

The one-piece, mini, security pouch system features the SenSura® double layer adhesive

1541451723-stoma-cap.jpg

48 years Type 1 Diabetes, insulin pump, CGM, neurological complications, retinopathy, and autoimmune CIDP. Nerve damage led to ileostomy in 1/2015. Joanne


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Chris
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November 6, 2018 9:22 pm  

Thanks Eric..  Ya, Im planning on going in to talk to my GP soon about some things, Ill ask for something to help.  So far a bottle of wine and a few gravol is the best I can find ;)

Im kidding... but not really.

I think the feeling I get re having the ostomy through the night isnt so much the bag..  but more of an internal feeling... like I just always KNOW that I have a hole in the front of my stomach..  I dont know.  Its like when you have a guilty conscious but you dont know why..  I just have a "feeling"that keeps me aware something isnt right.

I mean.. Im happy Im not lying on my bed - exhausted with a constant flare - watching my family live their lives.  But, you forget about all that... and now this annoyance is my reality.

 

 


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VeganOstomy
(@veganostomy)
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November 7, 2018 12:40 pm  
Posted by: Chris

I think the feeling I get re having the ostomy through the night isnt so much the bag..  but more of an internal feeling... like I just always KNOW that I have a hole in the front of my stomach..  I dont know.  Its like when you have a guilty conscious but you dont know why..  I just have a "feeling"that keeps me aware something isnt right.

When you speak with your GP, see if you can get a referral to speak with a therapist. You shouldn't have to live with that feeling, so if it's addressed, I think things will get easier for you!

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Chris
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November 7, 2018 5:49 pm  

Hopefully. :) Thanks 


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Susan
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Posts: 11
November 9, 2018 4:55 pm  

I sleep on my back. I am bad as I do not get hungry until later in the day. If I an out, I cannot eat a big meal as I do not always have the money to eat out and then it is the food I cannot eat. I am a late night eater. I try not to be. I am hoping that as time goes on, there is more healing. My output is liquid so I need Metamucil 2x a day and the Gel-X tablets each time I empty my pouch. I change the whole 2piece system every other day. I try to drink as much water as possible. 


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Susan
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November 9, 2018 5:21 pm  

Hi Sydneychic. Thank you for your information. Please if you could email me it would be easier to navigate the responses. I am not always on the Blog.  What company makes the Sensura Mio Soft Convex one piece pouch system?  I would like to try to get a sample to try it first. 

Whst compamy in the USA is compareable to CHUX that you use after coming out of the shower? Can you think of anything or any other kind of product I can put over my Stoma after I get out of the shower without my pouching system on? I perspire for at least an hour even with a cold rinse off shower and I would need to blow dry my hair so it makes this a real challenge. Do you have any advice? 

Also, I was told by Hollister, my Stoma Nurse, the Nurse at Hollister and Convatec to NEVER EVER put water in your pouch as the water could have bacteria and it could infect the Stoma. Once I need to use some water for extra thick output but it was zero water which is the same as Didtilled water and it was a mess but I use unscented baby wipes to clean out my pouch as best I can. I add M9 as a deodorant and I empty my pouch so often that it is no necessary to put water in and you change every day and that, no matter how gentle you are, could be harsh on your area around the Stoma and pouch area.  I am fat and my pouch is very close to the front of my stomach and I have troble bending over with 5 layers after I have all my clothes on and I am 65 and all my joints are degenerating. 

Thank you. 

Susan

 


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Sydneychic
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November 13, 2018 4:50 pm  

@susan Hi Susan.  I have emailed you directly.  The sensura mio convex is made by Coloplast.  I like their products.  I also use M9 drops.  I don't know what your water is like but here in Sydney we drink tap water so I think it is fine to put in your bag.  No one has ever told me not to, in fact, the stoma nurse when I suggested it thought it a great idea.  The shower has water and most everyone showers at some time with the bag off.  I find that advice bizarre.  My skin around the stoma is pretty good even with changing the bag daily.  I use a barrier wipe and make sure the skin is dry before putting the new bag on.  As for the chux wipes, you could just use tissues when  you get out of the shower while you are drying the rest of you.  Have you tried a fan?  My husband is always hot after a shower and he stands in front of the fan before he gets dressed.


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lilylifesaver
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November 15, 2018 6:20 pm  

When I do sleep, it is with 4 pillows, trying to keep from exploding. But I also have severe insomnia. I have slept maybe 2 hours in the last 48 hrs. My doctor has prescribed something to help me sleep but then I'm afraid I won't wake up in time to take care of Lily. Anyway, I started having severe prolasping and retraction about a month ago. I was using the wonderful Coloplast 2 peice product and then started having major leaks. I never thought I would like a 1-pc appliance but am trying samples of Hollister Premier slight convex with adapt CeraRings with success. The wafer is what is working but I HATE the quality of the Hollister bags. I was hoping to be able to get back to a working position by the end of December but don't see that happening. The stoma prolapse belt just made things worse for me. Love reading Eric's posts and watching his videos. You've provided a lot of good information for me. Keep up the good work!

Lucy


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