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Marcie
(@shulmjs)
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21/10/2017 8:23 pm  

Sarah, 2 glass's of squash? What is squash? I live in the U.S. maybe a different type of wording/language here? I am dehydrated very much so--looking for different ways to end/help with this instead of going to infusions 3 X  week-getting old. I want to go and PLAY!! 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Marcie
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21/10/2017 8:27 pm  

Illona, how did that go?  Get a leak?? Pancaking? Sleep well.. If things don't work out? We all know the routine-- shower, re-dress, change the bedding.. then sleep. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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FelicityG
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21/10/2017 8:49 pm  

Squash is a flavored fruit drink/ punch made from syrup concentrate. I want to say common in the UK? 

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


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mykirbyroo
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21/10/2017 8:55 pm  

Thanks for the advice about OstoBuddy, Bago.  I saw that app somewhere and meant to install it on my phone, but, of course, my lame brain forgot -- but I have it now!!!  Thank you so much!  Also, love the picture from your surgery.  I rather imagine the bucket of my discarded parts looked very, very similar as I had my entire rectal structure removed and part of my colon due to Stage 3-C Rectal Cancer.  But, my CEA blood test number always comes back really, really GOOD so I'm glad to be rid of the foul parts!!!!  Best wishes to  you!


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Marcie
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21/10/2017 9:54 pm  

OHHHHHH. the U.K. huh?  I feel there is much sugar in this also-that I cant have.. Sugar goes right through my "Nellie" To bad tho, I could use a good 20 pounds. Thanks!! 

I see that you all are expecting a new prince or princess huh?  April I see. I eat saltinens crackers before I go to bed, helps with the liquid out put at night or, dry Cheerios.. Be well my Friend! 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Marcie
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21/10/2017 9:59 pm  

Illona, you look so sweet !! How can someone think that your dangerous? 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Marcie
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21/10/2017 10:13 pm  

Illona, Try a weekend without changing.. I was scared at first. but, I believe that you have a handle on changing your pouch very fast-Just carry 2 pouches, and the rest of you needs everywhere u go. IF u get a leak? Join the club!! I find walking around a bit every now and then to help my out put go down instead of hanging in there by the stoma. Hanging in there causes many leaks.. And yes, u will be like the rest of us, feeling around... But get o ut and about going a good 2 days-  I change every 3rd. day-if it needs it or not..  Feel itching, burning?  Time for a change.. On that day, I get everything put together and ready, give yourself a facial, get into a nice hot bath, have a glass of wine or tea, and enjoy!!  Then dress your stoma (what ever name u gave it-mine is Nellie-) and it is bed time for a reading or t.v. 

I look forward to the 3rd. day.. But, there are days............ :-( .....  we all have those.. Some things are not planned well are they? But there is HOPE!! Get brave and try this!! 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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mykirbyroo
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21/10/2017 10:16 pm  

Hi, Ilona!!!!  I'm a colostomate and I haul my bottle of water EVERYWHERE I go!!!  It's been to the doctor's, the hospital, the grocery store, the pet store, out to eat - everywhere!  I never ever feel ashamed or bashful or shy about carrying it with me.  I use an empty water bottle and just keep filling it up at home or wherever I am, so I always ALWAYS have it with me.  Please, PLEASE, never feel ashamed.  You have absolutely nothing to be ashamed of.  You have a MEDICAL condition -- and don't need to explain to anyone.   I'm quirky, so I don't even give it a second thought.  You're doing well!!!  Bless your heart!!!!


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VeganOstomy
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22/10/2017 1:39 am  
Posted by: mykirbyroo

Thanks for the advice about OstoBuddy, Bago.  I saw that app somewhere and meant to install it on my phone, but, of course, my lame brain forgot -- but I have it now!!!  Thank you so much!  

I reviewed the app =) And use it with every appliance change (have for the last few years!). It's a great app!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Bill Bell
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22/10/2017 9:30 am  
Posted by: VeganOstomy

I reviewed the app =) And use it with every appliance change (have for the last few years!). It's a great app!

I'm sure that is where I learned about OstoBuddy.  I've been following Eric for quite a while.

Thanks Eric.

Bill
Ulcerative Colitis... Ileostomy June 2016


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Jattzl
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22/10/2017 12:42 pm  

Hi Dona. I wake up with crampy nausea during the night too. I have not put it together with gas but I will pay attention. I too have gas build up at night and use ez-vents. 

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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Marcie
(@shulmjs)
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22/10/2017 12:52 pm  

Jattzl, eat crackers just before bed time. I eat about 7-8.  NOT wheat but in here in U.S.A. we have saltines crackers.. simple-little salt (which we need) not heavy crackers!! I eat these during the day also, helps to keep the tummy a little full-NEVER let your tummy get totally EMPTY!!! Or u will feel sick.. Remember the stoma Ilestomcy is ALWAYS putting out and taking major nutrition's ( FROM you - I have high out pout mostly-and had issues with feeling sick--this helps!! Enjoy your nite snack!! M.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Dona
 Dona
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22/10/2017 12:54 pm  

Hi Jattzi,

I do find letting the gas out through the EZ- vent makes the nausea go away after about a half an hour. Or just get up and empty it.   I never let it build up to that level when I am awake.

( note this is not the same level of nausea I experienced with the hernia & the escaped illium.... that was much more severe and also had a lot of pain associated with it near my stoma)).

But always pay attention to nausea.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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mykirbyroo
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22/10/2017 12:54 pm  

Am sorry I didn't see your review of OstoBuddy, Eric.  Or I would have been using the app much, much sooner.  Guess I'll have to visit VeganOstomy.ca more often so I don't miss these things!  I do receive your e-mails and I sure do enjoy them!  Thanks for being our "guinea pig" and trying out all the new stuff for us.  Your advice and wise counsel means a lot!  I have learned a lot from VeganOstomy and it has helped me tremendously.  Thank you.


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Marcie
(@shulmjs)
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22/10/2017 1:01 pm  

I empty maybe 2 times/night-I turn when I sleep and I always end up feeling my pouch-then I just go off and do my thing.. Would rather dream away, and keep warm, but??????? Better than the routine of a leak in bed... 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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FelicityG
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22/10/2017 2:13 pm  

I'm in the US but have a local international market where I get something similar to squash, a cordial. The nice thing is that you can make it as strong or as weak as you like. Cordials are apparently a bit thicker than a squash but the squash has more fruit juice in it.

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


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Jattzl
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22/10/2017 3:55 pm  

I am happy for all of you who have found a partner in life who is there for you.  They deserve a medal!!  I am alone and also have very volatile type 1 diabetes.  So between my bag, my insulin pump and my glucose monitor I'm afraid full nights of sleep are in the past.  There are times when I have woken with low blood sugar AND an "explosion" and had to sit with the mess until my blood sugar rose enough to be able to function and clean myself and everything else up.  Ugh.  It would be nice during times like this to have help and support.  Enough of that though!  One step at a time.

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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Marcie
(@shulmjs)
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22/10/2017 9:23 pm  

Jattzl, How r u doing with everything?? So sorry that your alone with all this new stuff added on to your other issues. I know the LOW feeling (I don't have diabetes) but I know that "low" feeling when the blood rushes to my head and I have a sizure (sp)  the weakness seems to take way to long to over come huh?  Kinda shaky-- crawling on the floor.. Must be scary..  (I have sizures sometimes with mu server dehydration-) I hope that you have found a way to proceed and adjust with all of this..  YES, one step at a time honey!! There is a blind woman in my support group-alone-don't know how she does it! We all do try to help her out and include her with outside things.  It is time consuming with her-but I can ease my way to her way and trust me she will let u know if u did bad!!  But, seeing her enjoy is a reward.. She has been blind for 50 years, and has a stoma for 40 years. You should hear her stories of the old products! She is a sweet heart. Do u have a support group with your ostomy?  I have a book for the U.S.A. I can give u info. if needed.  Sweet dreams............ M.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Jattzl
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22/10/2017 9:49 pm  

Thank you, for your encouragement and support Marcie. If I look at the big picture it is overwhelming but I take one step at a time.   There aren’t many support groups near me. I tried one and it was really large but still informative especially in the beginning. 

 

Again thank you. And thank goodness for groups like this. I learn so much. All the best to you. 

J

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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Bubbles
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02/11/2017 2:24 pm  

I set my cell phone for wake up  at three hours when I go to bed  get up and empty then set for 4 hours . This gets me to the morning yet makes sure I don't over sleep. I am still at a  high output with my newer stoma . My doc says it will slow down eventually. 

How long before your stoma normalized out put ? 


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