Gas, ostomies and sleep issues

kristasplace
kristasplace Member Posts: 957 Member
edited March 2014 in Colorectal Cancer #1
Hello! I have a wonderful new (aromatic) topic to discuss. Mostly, i have questions. As some of you know, i've had my ileostomy for over a year now, and hate it. Albeit over the past few months, i've finally learned to tolerate it. I no longer burst into tears when i wake up with a messy bed, or freak out when the bag bursts in a public place. The main problem i have with it is gas. No matter what i eat, i get tons of gas in the bag. Particularly at night. I know i'm sleep deprived as a direct result of waking up two or three times every night to get up, and release the air. Sometimes i wake up and can barely move because the bag is extended about as far as it can go, and i can't bend my leg! I've had the gas pouches before and they don't help. Also, when i release the gas, sometimes i'll get backflow whether or not the bag is empty. It's like the stoma will release fluid at that exact moment. I'm wondering what others do to prevent these things?

Many hugs!
Krista

Comments

  • tiny one
    tiny one Member Posts: 465 Member
    #2
    ostomy
    Hi Krista! I had my ileostomy for 10 months. Once I had a small area come loose around the appliance and had some leakage, luckily I was home at that time. Another time the bag popped off when I was emptying it. I used the brand Convatec, these would puff up but would never bust open. This brand had the appliance that adhered to the skin and the bag snapped on and locked in place. The bottom had velcro bottom. I always flushed the bag everytime I emptied it also. I would take a water bottle in and use the water from that. Wonder if Beano would help you. Some days I have alot of soreness. But the days when I want to get out and go I take 2 lomotil and they usually kick in about 1 hour. They usually last for about 6 hours. This is my new normal. Next week I'm having a talk with my surgeon about how much trouble and pain I've had from the reversal. He doesn't realize how bad it's been. God bless.
  • PamPam2
    PamPam2 Member Posts: 370 Member
    #3
    Hi Krista
    Hi Krista.
    They do make a bag that has an automatic valve type thing built in that automatically releases the gas, I am not sure which company makes them, but this could be the solution for you, even if you just used one for night time so you could sleep. Mine was always full of air too, but I was lucky and got mine reversed after about a year. Hope you can get some relief, and find out about the special venting bags.
    Pam
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    #4
    PamPam2 said:

    Hi Krista
    Hi Krista.
    They do make a bag that has an automatic valve type thing built in that automatically releases the gas, I am not sure which company makes them, but this could be the solution for you, even if you just used one for night time so you could sleep. Mine was always full of air too, but I was lucky and got mine reversed after about a year. Hope you can get some relief, and find out about the special venting bags.
    Pam

    Bag
    Angels hospice nurse told us to stick a needle at the top of the bag to make a small hole and that should help with the gas I want to do that for angel but he is scared the bag will leak busrt you name it. and he also has to get up at nite to empty his bag can't sleep good because he is scared of lying in poop. good luck. Oh yeah the nurse also told us to get the extra slim tampons and stick the tampon in the stoma while your preparing to put a nwew bag on . It does work for us

    michelle
  • kristasplace
    kristasplace Member Posts: 957 Member
    #5
    angelsbaby said:

    Bag
    Angels hospice nurse told us to stick a needle at the top of the bag to make a small hole and that should help with the gas I want to do that for angel but he is scared the bag will leak busrt you name it. and he also has to get up at nite to empty his bag can't sleep good because he is scared of lying in poop. good luck. Oh yeah the nurse also told us to get the extra slim tampons and stick the tampon in the stoma while your preparing to put a nwew bag on . It does work for us

    michelle

    Thanks for the advise..
    Thank you for the advise! My nurse also told me about the tampon thing, and i just can't bring myself to even think about it! I never considered myself a squeamish person until my cancer experience, but now...everything creeps me out. I avoid my stoma at all costs. It creeps me out if one of my animals gets too close to it (i fear they may step on it), and my boyfriend is the one who cleans it (tough guy). I am so much like Angel when it comes to the fear of waking in a mess of poo. That's why the full bag wakes me.

    As far as the venting bags...i've tried them, and they just didn't seem to work at all. I will definitely try the beano. I remember the gas-x helped some before my diagnosis. I can't remember what the lomotil is for, but i still have some of those pills.

    many hugs!
    Krista
  • tiny one
    tiny one Member Posts: 465 Member
    #6
    kristasplace said:

    Thanks for the advise..
    Thank you for the advise! My nurse also told me about the tampon thing, and i just can't bring myself to even think about it! I never considered myself a squeamish person until my cancer experience, but now...everything creeps me out. I avoid my stoma at all costs. It creeps me out if one of my animals gets too close to it (i fear they may step on it), and my boyfriend is the one who cleans it (tough guy). I am so much like Angel when it comes to the fear of waking in a mess of poo. That's why the full bag wakes me.

    As far as the venting bags...i've tried them, and they just didn't seem to work at all. I will definitely try the beano. I remember the gas-x helped some before my diagnosis. I can't remember what the lomotil is for, but i still have some of those pills.

    many hugs!
    Krista

    stoma
    I was surprised to find that the stoma has no feeling. You just have to make sure that if bleeding does occur it stops fairly soon. I felt more vulnerable when I had mine also. Lomotil slows digestion. It's been a Godsend for me since my reversal. I used to get irritated when I was changing my appliance and my stoma became active. I had to change my appliance alot more in the summer, it wouldn't stay adhered to my skin because I sweated more. A good book to read is The Ostomy Book, I wish I would've known about it when I had my ostomy.
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    #7
    tiny one said:

    stoma
    I was surprised to find that the stoma has no feeling. You just have to make sure that if bleeding does occur it stops fairly soon. I felt more vulnerable when I had mine also. Lomotil slows digestion. It's been a Godsend for me since my reversal. I used to get irritated when I was changing my appliance and my stoma became active. I had to change my appliance alot more in the summer, it wouldn't stay adhered to my skin because I sweated more. A good book to read is The Ostomy Book, I wish I would've known about it when I had my ostomy.

    funny little story
    Angel is a chili eater has it on everything so for a while he thought something was wrong with his stoma because it hurt him And i said honey when you had been pooping the right way your butt hole ( sorry)always burned because of the chile now your stoma is your butt hole and thats why it hurts its from the chile I don't think he beleaved me, but since he has gotten sicker not eating much the stoma has gotten better so it was the chili.

    michelle
  • vinny3
    vinny3 Member Posts: 928 Member
    #8
    gas
    Hi Krista,

    I have a colostomy so it is a little different as I don'tusually have as much liquid. I use a pouch by Coloplast with an air release/filter at the top. Generally it works pretty well but can be plugged if the stools are too loose and my belt compresses the bag too close to the top. I would be careful about trying to punch any holes, however small, as they will surely leak. Have you gone to any of the ostomy websites (wocn.org, ccfa.org, caet.ca, uoaa.org and others) to see what they do?

    ****
  • kristasplace
    kristasplace Member Posts: 957 Member
    #9
    the burning stoma
    I had to laugh while reading your post, Michelle! It took me ages to figure out why my stoma would hurt sometimes. Finally i correlated it to diarrhea! You're right, the stoma is now the butthole!!

    Tiny, i don't know why i can't get used to my stoma? I know it won't hurt it to put a tampon in it, but the idea of that, or doing anything at all to it, freaks me out. After fifteen months with it, i've only learned to avoid it. I will definitely keep my lomotil pills around in anticipation.

    ****, i've been wondering about you? I haven't seen you on here in a long time. Maybe our paths just keep crossing. I know you have a permanent. I've been considering switching my temp ileostomy to a permanent colostomy, but i think i may give the reversal a try first. If the scarring is a major issue, i will go to permanent without much question. Nothing (even the stoma) is worse than blockage to me.

    I have my colonoscopy date, but still the surgeon has not committed to the takedown on that day. Maybe i'll have the ileostomy forever (don't think i mind)!

    Many hugs,
    Krista

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