Out of the Bag: Sleeping

stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colonWhen you have an ostomy, going to bed isn’t quite as simple as it is for most people. There are a number of factors that you have to consider: What way should I lay? Is sleeping like this going to cause my bag to leak? Will I wake up if my bag gets full? Even a year out from surgery, these thoughts still go through my head fairly often.

And the truth is, I have leaks more often while I am sleeping then when I am awake, so I know it can be an issue for ostomates. In my experience, these are the things to take into account before hitting the sheets:

When you eat your last meal of the day. I try to be completely done eating by 7:30 on normal weekdays when I’m in bed earlier. I would actually prefer to be done by 6:30, but that doesn’t always happen. If you eat too close to bedtime, you will find a very full bag in the morning or sometime in the middle of the night. Something I have realized recently is that, for me, it actually helps if I eat something very small about a half-hour before I go to bed. When you eat, it triggers your digestive system to continue moving things through, so eating a little something will help move some things out of your system before going to bed.

bed sleep awake tired exhausted crohns colitis ostomy blog stephanie hughes stolen colonWhat you eat before bed. I realize this is going to be very different for different people, but I can tell you about my experience. I have issues with anything that will significantly thicken my output. For me, thick output + laying down = leak. Rice and nuts are the most difficult for me. I’m fine in small quantities, but eating a lot before bed usually doesn’t end well. Alcohol can also cause issues. Now, if I’m have a few drinks, I make sure that I drink at least the same amount of water as other drinks. Just a few weeks ago, I had two glasses of wine, but didn’t follow it up with water. My output was so thick that night that I ended up with a pretty bad leak. And waking up in the middle of the night to change your bag after drinking the night before is not fun.

How you lay when you’re sleeping. I am a stomach sleeper. Actually, I’m one of those weird mostly-on-your-stomach-but-one-leg-bent sleepers. I learned to get used to sleeping on my back because when I was dealing with active Crohn’s symptoms, it would hurt my stomach to lay any other way and I figured it would be more of the same with an ileostomy. Personally, I haven’t had a problem laying any way I want. I sometimes lay on my stomach or side or the other side or back. There are times when I pay more attention, such as when I know I’ve eaten some things that I shouldn’t have, as I’ve listed above. In those times, I don’t lay on my stomach.

What you wear to bed. This one for me has been a non-issue. I don’t wear anything differently now than I did prior to surgery. I’ve always been a just-a-T-shirt kind of girl and that hasn’t changed. I have heard of other ostomates wearing some sort of belt or band (similar to the one I have) to bed to help keep the bag in place and to catch leaks. Personally, I haven’t found it necessary, but if it’s a concern and you don’t mind the band, that’s an option for you.

Your bag filling in the middle of the night. Regardless of what or when you eat or how you sleep, your bag will fill up during the night. Especially those first few weeks after surgery, you have to keep an eye on it because it will fill up with a lot of gas. I would say that more often that not, I get up in the middle of the night to empty the bag. Thankfully, I’ve never had to deal with a bag explosion from getting too full, but I’ve definitely been close. I have, however, had times when it has gotten so full that it starts pulling away from the skin and causes a leak. But my body usually wakes me up when it gets pretty full. Like I said, most nights I wake up and empty it and go back to bed.

I realize that this is not how it goes for all ostomates, but this has been my experience. And while I haven’t had to change too much in my sleep habits, I am more aware of how I’m laying and what I’m eating. I would encourage you to take note of when and what you eat and how that affects you overnight and the same thing with how you sleep.

What about you? Any other ostomates had a difference experience when sleeping?

89 thoughts on “Out of the Bag: Sleeping

    1. Stephanie Hughes Post author

      I do that on nights when I know I’ve eaten something I shouldn’t have or have eaten too close to going to bed.

      Reply
        1. Todd Weiner

          Shannon, what is an overnight bag? I currently wear a high output bag all the time and still have problems with leaks/blowouts. I have short gut syndrome and only have approximately 3′ of my small bowel left so my daily outputs on average are >10,000ml/day.

          Reply
          1. Sarah Elizabeth Hart

            An overnight bag is a super capacity bag that you switch out your regular bag for at night time. It helps eliminate leaks overnight.

          2. Ben Bieker

            Coloplast makes a night time bag that holds over 2 liters. Look up front butt you tuber on YouTube she has a video where she reviews the bag so you can see it and all its features

  1. Barbara A. León

    I have had my ostomy for 10 years this August 18th, not many leaks thru the years at night, I usually wake up at least once to empty it. It seems like my head knows to wake up, it has just become my routine.

    Reply
    1. Stephanie Hughes Post author

      My head is the same way. And it’s usually always around the same time – 3:30 or 4:00 for me.
      PS Happy (almost) 10-year Stomaversary!

      Reply
  2. Amanda

    I always have empty at least once. But thicker output is not my problem…the very liquidy stuff seems to eat through my barrier faster and cause more leaks. Alcohol makes my output liquidy so it’s bad for me. And yes, my leaks are usually while sleeping too. I’m luckily a natural back and side sleeper. Sleeping on my side is best as the output falls into the beg rather than lying on the barrier. Most of my leaks are when I am on my back.

    Reply
    1. Stephanie Hughes Post author

      That’s so interesting how different it can be for each person. Rather than eating through my barrier, as sometimes happens to you, the thicker output builds up at the stoma, rather than falling into the bag. Once it gets under the barrier at all, it’s over. And I think you’re right, on the side is the safest position.

      Reply
  3. Steven Muster

    Thanks so much, lovely article Stephanie. I always awake around 3 hours after sleeping to empty the bag, which is usually only a third full anyway. The tip on eating a small amount an hour or so before bed time, works for me, been doing that for a while now, as you say it helps get the gut going.

    Reply
    1. Stephanie Hughes Post author

      Thank you, Steven. I just figured that out recently. I would get frustrated when I’d purposely eat several hours before going to bed and I would still end up with a very full bag. I actually figured it out on accident when I had a small snack within an hour of going to sleep a few weeks ago, but it definitely seems to help.

      Reply
  4. Joyce Haddix

    I am one of the fortunate ones who changes nothing. I sleep,eat and drink the same as I always have. I have never had a pouch burst. Two accidents in the first two years, none since. Thank the Lord I was home. I am also very fortunate in that I have never had an irritation or seen a Doctor in relation to my colostomy,I shower daily, without a pouch and use barrier strips when applying the pouch, the two accidents I had years ago were before I wore the barrier strips.I am a five year stage 3 colorectal cancer survivor..

    Reply
    1. Stephanie Hughes Post author

      Joyce, that is really amazing. You definitely are fortunate and a great example of how having an ostomy doesn’t have to flip your world upside-down.

      Reply
    2. Staci lassig

      Also colorectal CA survivor x 4 yrs… radiation proctitis has brought on another year of struggles and now have temporary loop illeostomy. So encouraging to hear your input. So far it’s ok! No catastrophes and think I hv the hang of it. Not that any of us wanted this baggage but thankful for everything. Thanks for sharing

      Reply
  5. Lori M. Carlson

    I’ve had an ileostomy 3 different times in my life, and in the beginning they all pretty much behaved the same with leaks at night, etc. It wasn’t until I had my 3rd and permanent ileo long-term that I began to have regularity–long-term meaning well beyond 2 years. One thing that helped the most was for me to figure out how to get a good seal with my wafer, which was a trial and error process. I have liquid output–seldom do I have thick–so leaks were an issue all the time before I got a good seal. My is a combination of brand, light convex wafer with a nice thick ring made from paste strips. (It’s interesting to me that the brand can make a difference–but it really does in my case.)

    I do awake sometimes during the night to empty my bag and it may or may not have anything to do with the last time I ate, or what I ate. It can go in cycles, too. Right now I’ve been enjoying sleep without waking up to empty.

    I’m a side sleeper so I used a king-sized pillow to support my legs and bag. I also find that if I wear underwear I get a little extra support for my bag. I prefer to wear loose fitting shorts to bed but they just don’t give that extra bit of snugness.

    We have cats that sleep with us and I’ve learned to guard my bag when they come snuggling. Thankfully I’ve not had them walk on a very full bag!

    Reply
    1. Stephanie Hughes Post author

      It is amazing what a difference the brand can make. When I first had my surgery, I got so many different samples to try. The ones I ended up using I can often keep on for a week, but most of the others will leak within a couple of days.
      That’s a great idea with the pillow to support the bag. I worry sometimes if I’m on my left side that the weight from a full bag will start pulling it away from the skin.
      (Oh, and it’s always a great feeling when I wake up to my alarm in the morning rather than in the middle of the night.)

      Reply
      1. Lynn Clark

        Hi Stephanie,
        Thank you so much for such a wonderful site. You truly have such a great attitude especially for people new to dealing with an ileostomy. I found that in the first few months I would leak all the time it was so hard to deal with as it happened so many times when I was out and about or at work. At that time I used the strip paste as it was so easy to use.
        My stoma nurse suggested using the paste in a tube and a barrier or eakin and WOW what a difference. I use coloplast as I find for me they are the best products and the company is always developing great products to make our lives easier.
        Keep up the great work your amazing!!!

        Reply
      2. Brenda

        I’m 6 weeks post op I have a permanent ileostomy I have to change my bag about every other day as it leaks around stoma. Can I ask what products you found that lasts so long?

        Reply
        1. Kimberlie Mikos

          I’m a 8 yr ileostomy intact due to completions for reversal had rectum removed two years ago as well
          Best brand I discovered is Hollister W adapt ringconvex flange I cut to my size clear pouch because I don’t seem to get as many leakages
          I trained my body to wake up every 2 hrs it’s worked for me the most sleep I can ever get it 4 maximum Because too full

          Reply
    2. Pauline

      I have a cat who loves to sleep with me. I have been told it is not sanitary to have the cat with me. Do you find it a problem?
      Pauline
      PS I am still in rehab now.

      Reply
      1. Sarah Elizabeth Hart

        It is purrfectly fine to have your feline friend sleep with you. I make sure that I let her see the bag and see that it was the source of all of those strange rustling sounds and that is was NOT ALIVE before I laid down. We have done great, she pawed at it once when I was awake, but nothing more she snuggles right up to my belly everynight!

        Reply
      1. cmdcwc

        Ditto. I was a stomach sleeper all of my life. That changed 6.5-years ago. I truly haven’t had a good, restful night’s sleep since. I dread going to bed.

        Reply
  6. Marisa Lauren

    I love this post! I have huge sleeping issues for a lot of reasons but partly because I have always been a stomach sleeper and unless I eat the bare minimum, I have to adjust. I also find it really difficult to eat during the day so I get all my calories at night which as you said, isn’t awesome in terms of the bag filling up. I had an ileostomy for 3 yrs as a teenager and this one for two and I really think it is all just a learning experience for all of us. I wrote a post a little while ago about how I was noticing that there were certain topics that were too difficult for me to talk about about on my blog and how I was very open about other things that I know is hard for other people to own up to. I called it “When you can’t, someone else can.” Thank you for sharing this. I am just starting to be able to talk about my ostomy on my blog but only very generally. I can’t yet go into the specifics like you do. It is nice to read and know I am not alone though. Thank you for everything you do! xo

    Reply
    1. Stephanie Hughes Post author

      Thank you, Marisa. And I think you’re right about what each of us write about. There are certain things that I wouldn’t be comfortable talking about, but I’m glad to see that there are others who are. That’s what is so great about having a community to all share our own portion of things! I appreciate many of the topics that you’ve spoken about on your blog, too. I look forward to reading more!

      Reply
  7. Amanda Heath

    I am a 31 year old mother of 2 little boys and after 12 years of active colitis I am facing surgery to remove my colon. I believe I will have a bag for 6 months while we create the J pouch in 3 separate surgeries. Im in the early stages of meeting with the surgeons and due to my severe fear of all of this I havent been able to absorb a lot of the info they are telling me when I go. I seem to just zone out. I am scared and worried and unsure of how life will be (even if its only for a short time) with the bag. I googled it and that was probably a terrible idea. Maybe it looks worse than it is or maybe Im just a big weenie……..nevertheless, I need advise and support that my husband cannot provide although he is trying so very hard to be everything I need. Anything anyone is willing to share I would appreciate to very much. I cry daily out of just pure fear of what the next 6 months will be like……..

    Reply
    1. Stephanie Hughes Post author

      Amanda, I totally understand the feeling. I spent a lot of time crying and worrying about what having a bag would mean. At least in my situation, I found that having a bag was so much better than having Crohn’s/colitis that it really doesn’t bother me as much as I thought it would. And especially in your situation that it’s just a step along the way and not a permanent solution. Yes, googling it is much worse than reality. Most of the pictures on there are of transparent bags that are not attractive. But in reality, there are many more discreet options, there are fun covers and wraps that also provide some more privacy. That was a big thing for me. When I left the hospital, they had a clear bag and felt very self-conscious. Once I was able to find the right bag for me, I felt much more comfortable with it. Now, people don’t know I have it unless I want them to know I have it.

      Reply
    2. Heather Martin

      Amanda, it is a very big adjustment, but as you can see, we all are here, living life, and supporting each other. Living with a bag is way better than living in pain. I’ve done more in the last 4 years than I could do from the age of 26 to 50 when I got my surgery. I am training to do a triathlon this year. I run, I swim (yes), I bike, hike. Life is too short for pain. You’ll be supported.

      Reply
      1. cmdcwc

        Heather – what do you use to protect your barrier when swimming? I found a shrink wrap product but if even a tiny section is exposed, water gets under the barrier and very quickly it lifts from my skin causing a breach.

        Reply
    3. Joe Prince

      My name is Joe. I had my colon removed August 2nd of this year. I had severe ulcerative colitis and gave up on biologics. I too was scared. In the end having my colon removed was a no brainer compared to the pain and other issues surrounding U.C. I had to spend 8 weeks in the hospital just to get healthy enough for surgery.Please don’t wait that long. It was the best choice to have surgery. I was also scared. Good luck to you.

      Reply
  8. VeganOstomy

    I’m a new ostomate (7 weeks out from surgery) and I find that it doesn’t matter how soon to bedtime I have my last meal, my nighttime emptying stays about the same… I’ve eaten as late as 1am or as early as 6pm and I’ll still empty my bag one (sometimes two) times a night depending how how early I go to bed and what time I decide to get up at.

    And I’m not talking light snacks either… I can eat very large meals at 10pm or 11pm and I’ll almost always have to empty at about 4-5:30am.

    I’ll consider myself lucky. After not really being able to eat for five years and waking up because of Crohn’s issues MANY times a night, I’ll take this as a huge win 🙂

    Reply
  9. LouG

    I find myself waking up 3/4 times to empty & can’t seem to find a way around it, but if anything I’m glad to know I’m not alone with it, as I find it so frustrating & because I work shifts I get even more tired so broken sleep with this is hard! I’m relatively new to the ostomy too, so I guess it’s a period of adjustment. Thank you for your blogs Stephanie 🙂

    Reply
  10. Jim Shearer

    If there’s one thing I learned in the 28 years of having an ileostomy is do not let the air out so you can go back to sleep. Pascal’s law also goes for ostomy bag’s. Fluid is not compressible and will push til it leaks. Gotta leave some air in there. Class dismissed. 🙂

    Reply
  11. Tom Quinlivan

    After 5 years of waking up every 2 hours to let air out or empty bag I finally found a new system! I was using ConvaTec 401512 pouch open end. I was not getting rem sleep, so I was always tired. Now I use ConvaTec High output with plastic end with cap.#401557. When I do need to empty pouch ,I have a 1 gal. strong empty water bottle with large opening by my bed. It’s easy to uncap pouch,empty content and recap. also for men you can urinate if needed. Also it has gas release on top of pouch. don’t be afraid to flush inside of pouch every day it makes replacement time a couple of days longer

    Reply
  12. mousepotato1975

    Almost 40 years out (I’ll be 40 in Jan, got my colostomy “Rosebud” when I was 11 weeks old) I have slow bowels. I may wake up to gas but rarely a full bag (thank God).
    For me a glass of 2% with Benefiber keeps me regular (for me) and generally poop free at night.

    Thanks for this blog. I run a group on FB if you’re ever interested.

    Reply
    1. Kim

      What is your group on Facebook? My dad ended up with ileostomy after Colin cancer surgery went bad! We’re having a terrible time with leaks! We need all the help & advice we can get! Thanks!

      Reply
  13. Leslie

    I’m going on 15 years with my ostomy. AKA “rosebud” :-). The first several years, I experienced leaks in the middle of the night frequently. It was horrible… Nothing worse than waking to the feel of leakage, the panic… These days, I do not have that many leaks and the ones I do are minimal and caught at the first tingle of something is not right. You know that feeling of…. Oh no, time to change this thing…. and for me they happen both with firm and liquidy outputs. There does not seem to be a rhyme or reason, although the more liquid output seems to eat away at the barrier faster equally more frequent changes. I know that is just due to the acidity of the output and my skin doesn’t’ like it, at all. Even after all these years, I have the most sensitive skin and can feel the tingle of burning almost instantly. Thanks for sharing your stories.

    Reply
  14. Yolanda Callaway

    I had to learn to sleep on my back after my surgery. I’ve always been a side sleeper, so this has been difficult for me. I rarely have to empty at night when I’m asleep. I have a colostomy and it’s most active between 5:00 pm to 10:00 pm. I’m 1 year out since my surgery.

    Reply
    1. Lisa

      I’ve had my colonostomy two months and my output is normally 1:00 pm- 10:00 p.m never overnight… just trying to sleep on my sice but scared

      Reply
  15. Kishor Badhe

    In last 12 years there had been night mares of leak. I do not know how brain anticipates it and I get up at the initial stage of the leak. it is definitely more disturbing. But no choice. Keeping eating schedule every time is not possible. I have to get up once around 3 a.m. to empty the bag. I was stomach sleeper but now I don’t.

    Reply
  16. A.Marie

    I have had an ostomy since 1996. Two products that have saved my sanity: Coloplast Lubricating Deodorant and Ile-Sorb Absorbent Gel Packets. The lubricant kind of coats the inside of the pouch to avoid that whole “pancaking effect” and the gel packets absorb the fluid and evenly distribute the weight. I also eat my larger meal at lunch time and have a very, very small supper. I am usually finished eating food by 5ish. I learned the hard way not to eat in the evening. I also never sleep on my stomach….EVER! I tried that one time. And once was definitely enough! haha.

    Reply
  17. Cleopatra

    Hey guys!
    My name is Cleopatra,,,,,in October I was robbed n shot 5 times for refusing to give over my money. Pretty stupid I see now….but 3 of those bullets went in or thru my stomach area. I currently have a temparay ileostomy…..suppose to be for a year until I’m fully healed. I still tryna get used to this bag situation. I’ve had leak while sleep. Just had one the other day I woke up n bag was so tight n full n it mess my shirt a lil bit. It’s embaressing! I’m scared for people to know I have a bag, it’s not easy adjusting to this. Anyone have any advice for me? I know u have people on here who has a bag for years or for life. But please can anyone give advice? I’m suppose to change bag every 4-5 days, but I leave it on til it starts to peel up…..I think this is better on my sensitive skin. Is this good to do?

    Reply
  18. mike

    I have had my bag for about 2 months and had found that I have the same sleeping problems as you guys. I haven’t named it yet but have same names in mind that I can’t post here. I have had some leaks at night and have learned to deal with them. I will say that I have had an “accident” in public. I have not shared this with many people but I am willing to do so if it will help others know that they are not alone and yes, life does go on.
    Welll here we go, I was at the hospital about 3 weeks ago for a CT scan because I had not had a movement in about a week. When I got there they asked to drink the contrast for the CT but did not inform me that the contrast can act a laxative for some people. After the scan they made wait in the waiting area, during this time I must have emtied that bag about 10 times. Well on the last trip to the bathroom after emptying the bag everything decided to make a run for the border at the same time, no bag in place. For those of you that are not aware of this, you CANNOT aim an angry stoma and nothing is safe from it’s wrath. I got walls, floor, sink, my shoes, pants and the last little bit of dignity that I had left. When all was done I just stood there with my jaw hanging open praying for swift death that never came. In case you were wondering the most degrading part of the whole experience was having to find someone that worked for the hospital to help clean up the mess.
    I tip my hat and give my heart felt thanks to the staff of Pheobe Putney in Albany, Ga. for their help that day.

    Reply
    1. cmdcwc

      Mike – I was laughing as I read your story, but not at you. I have had a couple similar situations. IMO, the hospital should have made some type of accommodation for your bagless stoma.//Non-ostimates take for granted eliminating their bowels regularly and with no issues.

      Reply
  19. Marisa Claire

    Hi Everyone, I have read ALL your posts and what a little pocket of positivity it turned out to be. I have FAP (familial adenomatous polyposis) & had an ileorectal anastomosis (collectomy) 19yrs ago. I have 6 monthly colonoscopies of my rectum to take out polyps but at yesterdays check there were btwn 80-100 of which he took 20 to send for testing, so looks like a permanent ileostomy is on the way.

    I have been MOST concerned about sleeping because I flip flop on my sides and stomach and usually kick off my clothes through the night. All I could think was “how will I sleep…will it leak…how many times will I need to empty…what will I need to wear… will it be uncomfortable…etc etc” so it’s like you read my mind!!

    I already go to the toilet multiple times a day with my current collectomy so emptying the bag in the day doesn’t bother me. I’ve also had a rectal prolapse for many years which affects my continence & is unpredictable. Hence it may not be great function if I opted for the J-pouch surgery so I was trying to weigh up the quality of life question with a permanent ileostomy…

    Thankyou all soooo much for your openness and encouragement. Shared experience is such a gift and Thankyou Stephanie for your courage in opening the conversation.

    It’s all a bit confronting as I inherited this condition from my dad & his rectal polyps turned cancerous at exactly my age now so i really need to prepare myself and consider all information and options as I want any surgery & timing to be on my terms, not off the back of a bad/cancerous colonoscopy result.

    It’s nice to know I’m not alone.

    Given I have a window of time before surgery needs to be sceduled, is there anything you would recommend I do, that you did or wished you’d done BEFORE getting your ileostomy ( apart from sleeping on my stomach)?

    Reply
    1. Geriann

      I miss sleeping on my stomach…for whatever reason I get pain around my stoma…thus many a sleepless night…anyone have any ideas? Also…why does my bag only fill up with air while sleeping? I use bags with vents and filters…and usually sleep only on my back or left side…new to all this…I am trying to be thankful…but a very emotional ride…not even a month out yet…I envy all you who are grateful for your ileostomy positive outlooks…I am not quite there…

      Reply
    2. cmdcwc

      2-years after my permanent ileostomy (which was done 7-years after a total colon colectomy,) I had my rectum and anus removed due to a recital prolapse. For some reason, even with an ileostomy, I still had fecal material coming from my rectum. So many tests were run and they couldn’t determine why bowel was bypassing my bag. Having the rectum and anus removed was the easiest decision of the entire process. It was less painful (totally healed in 3-weeks and only required infrequent pain meds for a day or so) than the four episiotomies I had after childbirth and has totally eliminated leakage from that part of my body. Would do it again in a heartbeat.

      Reply
  20. Marisa Claire

    Geriann, I am sure this time next year I will be saying the same thing, asking the same questions and wondering… Is this is good as it gets? Will this be my new normal? and YOU will be the one assuring me that it gets better.

    Sleep deprivation will undermine the most optimistic person’s emotional stability on any given day. An Ileostomy is alot to take in and adjust to, you are navigating new territory and having those ahead of you on the path with positive outlooks does not nullify the anxiety of the unknown… or the sense of loss. What it does give is a little bubble hope to breathe into as you ride it out. The gift of where you are now is in the empathy and reassurance you will soon be sharing with new illeostomates.

    Thankyou for your openess… I will remember you as I find myself on the emotional rollercoaster. Some days I can take on the world and power through and sometimes there’s sadness of slow set cement in the pit of my tummy.

    Much love to you… be kind to yourself & take notes for me now… I will be relying on your trouble shooting experience in the near future…

    Reply
  21. Sarah Elizabeth Hart

    Has anyone else noticed that they fidget with/pick at their bags? I really do this a lot in my sleep. My sister informed me of this in the hospital. I have had 2 leaks because of me picking the tape border off of my pouch. I don’t know how I do it because it is so painful to remove without adhesive remover when I am awake.

    Reply
    1. Tiffy-poo

      I have a bad phobia of my bag. I can’t stop fidgeting with it even when I’m awake. It’s like my stress ball or something. I feel so disconnected from my body. I had my first bag when I was 11, and it was extremely traumatic as I nearly died. I had an ileo anal pull through, then a j pouch for years. When I was 29 I opted for a k pouch due to incontince. I had so many bowel obstructions and wound up in emergency surgery for a perm ileo. I have PTSD as if this has awaken my childhood trauma. I am going to see a PTSD counsellor as this is wreaking havoc in my life and causing bad dissociation where I feel spaced out and unreal. It’s very frightening.

      Reply
  22. Hari Verma (India)

    Hi. My mother has stoma bag fixed since 12 of jan and it will stay for 4 months. She had cancer but in september, october and november she had chemotherapy and in december 2015 she had 2 operations one stoma bag and two her urethra was shrink so surgens put some kind of pipe and day before yesterday doctors put chemoport on her neck just below the colar bone. Today she is unable to sleep as she is going to bathroom again and again pl. Suggest

    Reply
  23. Niles Allan

    Stoma output wakes me up, stings when it’s especially active. Last night 2:00am and lasted an hour and a half. Can’t sleep anymore without meds, even then, doesn’t always work. 4 months since surgery, doc is talking reconnection don’t know if I should, but I feel as though I cannot live like this, it’s been absolute hell.

    Reply
    1. Sarah Elizabeth Hart

      Niles it sounds like your bag is not fitted properly. Your ostomy should never sting like that. Are you getting leakage through the hole in the wafer possibly? I use Convatec SurFit Natura moldable and it fits better than anything I’ve found. The hole in the wafer expands when moisture hits it to fit better around your stoma and to prevent leaks. Hope this helps, I’m sorry to hear that you are having such problems. Have you thought to call a Wound Ostomy & Continence nurse to see if they can help with your problem?

      Reply
    2. Greg

      Hi Niles:
      I have had an ileostomy now since Nov. 2015. I am used to emptying the bag usually at midnight and again very early in the am.
      I change the bag myself now; my wife is a NP (Nurse Practitioner) and she changed it for me/spoiled me rotten for quite awhile.
      I had my surgery at Mayo and saw an Ostomy Nurse for a long time. That really helped relative to finding the right bag and application techniques.

      My heart goes out to you when I read what you say about the burning. I find that changing the bag more frequently (3days) helps the skin heal from the inevitable leakage under the wafer. I use a stoma powder and skin barrier on the red weepy areas and it helps me. I hate the burning. Days without any burning are good days in deed. I am always studying where the leakage was starting when I take the bag off and love to shower without it to get real clean and just feel free for a little bit.

      I sleep on a recliner section of sofa; always on my back. This took adjustment because I always slept on my side. I just don’t want any liquid “working” on the ring in my sleep so I keep a little vertical at all times. I found that sleeping on my side with the bag yanked on the bag, especially because I wear a belt with it, and led to leaks-at least for me.

      All the nurses had a real difficult time keeping a bag on my body for several months after surgery. I had folds of skin that caused the bags to buckle and leak. Gaining some weight back probably helped. The Ostomy nurse at Mayo (Sue) has been a God-send for sure.

      Hope something in my story above is helpful. A reversal of the stoma is planned for late Summer or early Fall. I know that will be an adjustment. I have Imodium ready (I take Gleevec, which can cause diarrhea already in and of itself). I am praying for the surgery to take place and to be very successful. If it is, I most assuredly won’t miss the maintenance and especially the burning!

      Reply
    1. phil waldron

      Discuss this with your doctor doing the reversal. My surgeon is telling me that I will go thru “testing” (barium enema) to make sure there is enough healthy tissue to reconnect to. That will make a big difference in how many times a day you will need to have a BM.

      Reply
    2. Kelly

      Deborah I don’t know what you decided to do, and every situation is different, but I had a Jpouch (now back to ostomy). If I could go back and do again, I wouldn’t have had the reconnect. I had leaks (sometimes bad ones at night) and also had to constantly worry about where the bathrooms were just like when I would flare up before surgeries. With my stoma, I feel like I lead a normal life! A new normal, but better than I’ve felt in a long time! I wish you luck with whatever you decide. As I said, all situations are different.

      Reply
  24. Chris Riley

    I was used to sleeping on my tummy. Was hard to adjust. I have hardly any intestine left, so I have to get up about 3 times a night. I am 70 now so it coincides with having to get up to pee anyhow. Have had a few accidents.

    Reply
  25. Jennie

    Hi. I am suffering from Ulcerative colitis and I’m thinking of removing my colon. I’m quite worried about a few things, and I wonder if someone could perhaps give me some advice. Is it common that the entire rectum is removed (and buttocks sewn shut), when the cause of the surgery is Ulcerative colitis? I mean, I hear that most such patients are offered the chance to have a J-pouch later on, so this must mean that they don’t normally remove the anus and sew everything shut. Does anyone know more about this? I will talk to my doctor of course, but there is some time left until I get the chance to do so.

    Another question I have, is about leaks. Is this a daily thing for most people? That it leaks? Does this mean you can’t swim or anything since your bag can suddenly leak without a warning? I looked up something called SenSura® Mio, apparently there is a filter which reduces gas build-up during the night, and it’s supposed to fit better, reducing leaks. Does anyone have experience with this? And leaks, is it like waking up in a puddle of poo, or what is it like?

    Does sleeping with a stealth belt make any difference?

    I would appreciate any advice you guys can give me.

    Reply
    1. Stephanie Hughes Post author

      Hey Jennie, I know it’s a lot having to figure all of this out. I’m sorry you’re going through it. As far as if the rectum is often removed for UC, I believe that depends mostly on where disease activity is located. If it’s not an issue in that region, you probably have a good chance of not having it removed. However, I’m not a doctor, nor do I have UC, so I’d definitely wait to see what your doc says. Leaks are not a daily thing. They might happen a little more often in the beginning as you’re figuring things out and trying different products, but I rarely have a leak now. Especially one that causes a major issue. I used to swim a lot with mine, spending an hour+ in the pool and did not have issues. I use the Mio pouch and really like it. If you end up having surgery, I definitely recommend getting samples of all types and brands of bags to figure out what works best for you. What a leak is like will depend on several things, including your output. Mine is thick, so usually I just feel wetness on my stomach and might have a small spot on my sheets. Only a time or two have I had a bigger mess. If you have more liquid output, it might be different. I have not used the stealth belt so I don’t have any insight there. I’m glad you’re asking questions now. It will help a lot as you figure things out feel free to email me if you have other questions. My email is on the contact page. Good luck.

      Reply
    2. Jim L

      Hi Jennie,

      I had UC for 14 years before I had surgery. I tried every medication out there and only delayed surgery because I felt my life would be ruined. I suffered needlessly for years. My amazing wife finally urged me to have the surgery and assured me things would be ok. I was in so much pain by the end I literally begged my surgeon to rip my colon out of me. I am SO GLAD I had the surgery because my life has been absolutely pain free since I recovered in 2006. I wished I had it earlier. My surgeons did offer me a J Pouch but abdomen surgery is painful and I was afraid of more surgeries down the road if UC continued to show up in my rectum, so I told them to remove everything.
      Since 2006 I have tried all three major ostomy brands. I had an allergic reaction to some of Hollister’s adhesives. I have had the best luck with Coloplast’s 2 piece flexible wafer system and use their barrier strips as well for added protection against leaks. I have had very little problems with leaking but my biggest obstacle now is getting sleep at night. I wake up once a night every night and it has been leaving me tired. I tried the Adkins diet to lose weight and noticed that I did not have to wake up at night to empty. Weird. That diet is extremely hard to stay on but I thought I’d share that experience. Hope this helps and good luck.

      Reply
  26. n1iwr

    Hey!! I just want to sincerely thank each and everyone of u for sharing ur stories here. I just discovered ur blog, Stephanie & it’s a HUGE help already.

    Ive only had my ileostomy for 6 weeks and I’m plagued w leaks EVERY morning between 4-6 even if I get up once or twice to empty.

    It is so reassuring that I’m not alone!! Thank u all for sharing! I’m gonna try a few of the tips mentioned starting tonight!!! Thank u from the bottom of my heart!!!

    Reply
  27. liztsangster

    leaks have been a big issue for me while sleeping , often I don’t sleep well at night because I am so worried about this happening, my big issue is ‘pancaking’ after eating the wrong kinds of food (potato .chips are the worst) i have found laying on your side and positioning your pouch towards that side so your output drains more easily into the pouch helps . if your output is tending to liquid i try eat something to thicken it like toast or marshmallows.

    Reply
  28. Gail Keber

    The one advantage to being over 60 when you get your Ostomy is that you are always waking up once or twice a night due to your bladder anyway so the Ostomy gets checked on too. Except on those rare nights when you are so tired you sleep right thru those nights can be tricky with the Ostomy getting ready to explode. Wish I could sleep on my stomach but as with pre Ostomy time nighttime seems to be my bodies most active time regardless of when or what I eat. But the way I look at it is nighttime only leaks is easiest to deal with at least I’m always in the comfort of my home with privacy and it’s not a out in public episode.

    Reply
  29. Carl

    Experienced bladder removal for cancer 4 months ago. Stoma and ostomy bag are becoming more normal. Anyone not using a supplemental larger bag or bottle over night is missing the boat. There should be no waking up over-night using the larger receptacle in connection with the 24 hour ostomy bag. Convatech has great products.

    Reply
  30. Helper

    My wife has a temp now for 4 months. Hopefully only 2 to go until reversal. Last night she had a big blow out, soaking the sheet, mattress cover, and some right into the mattress. Now she says the mattress must be replaced ($2,000). Surely there must be someway to clean/disinfect the mattress top. Any cleaning tips?

    Reply
    1. Stephanie Hughes Post author

      I definitely wouldn’t throw out the mattress right away. You should be able to get it clean. I would try spraying with vinegar and then sprinkling with baking soda. Let it sit for a few hours then vacuum up the baking soda. Is the mattress cover you have waterproof? Perhaps investing in a high quality cover would be more cost effective than getting a whole new mattress. I hope this helps!

      Reply
      1. Pam

        For biological messes (stools, etc), you really should use a detergent with enzymes to break down the biological matter. My mother has dementia and an ostomy bag. We had a major leak on her bed that also spilled onto our hardwood floor. I made a paste of detergent and water to clean the mattress and floor, letting it set for several minutes. I then rinsed it using a sponge and clean warm water. Once everything was clean, I used a fan to dry everything out.

        Reply
  31. Deb

    I’m six days away from my ileostomy due to ulcerative colitis (12 years since diagnosis).
    I’m actually very happy to be getting it because the alternative is just more pain, fatigue, missed work, and living in the bathroom.

    My primary source of anxiety is leaking – not so much at night where I can prepare my mattress and wear appropriate protection. Rather, I worry about daytime leaks while I’m out at work or trying to have a social life.

    My question is what food do you recommend to thicken and/or slow output? I heard marshmallows but that’s just too wonderful to be true… Or is it?

    Reply
    1. Stephanie Hughes Post author

      Hi Deb, it’s always good to hear such a positive outlook before surgery. I usually know someone is going to do really well when they have your attitude, because in my experience, that’s half the battle. And let me say this about leaking: it’s going to happen. That’s not to scare you, but simply to prepare you. It is going to happen at some point, so it’s best to be aware of this fact and be prepared for when it does happen. Most of the time, it’s not a huge deal if you’re paying attention and you’re prepared. I would keep some extra supplies in your bag and go ahead and have the wafer cut if it needs it. Have a trash bag and some wipes, too. You’ll figure out how to tell that a leak is coming on. If your skin starts itching a lot, that’s a good indication that one may be on the way. I would be cautious about doing too much to thicken/slow output before you know what your output is like. Mine is already really thick and that’s usually what causes the leak, because it builds up underneath the wafer. For me, I do what I can to thin my output in order to avoid leaks. You’ll just have to see what works for you. Mostly, I wouldn’t let it cause you too much worry. Live your life, do your thing, but just be prepared if the situation comes up. Best of luck on your upcoming surgery! I hope it all goes smoothly and that this gives you a better quality of life!

      Reply
  32. Nancy

    I’m not sure how I stumbled on this site but so glad I did. Just had 2 year anniversary in September with ostomy surgery. Perforated bowel. Had no idea what I was going to surgery for but family was called. Cried for days when told what had happened. After 2 years in nursing home and assisted living, I am proud to say that I am now back to independent living. I set my alarm for 3-4 hours after going to bed and it has served me well. I’m 75 with 15 grandkids and so thankful. Still having dietary problem but working on it.thanks for listening.

    Reply
  33. Carol Bone

    I am having surgery in 10 days and am concerned as to how I will handle having the ostomy bag, both physically and emotionally. I am mostly feeling positive about this and grateful to have a chance to possibly have a more normal life than I have now with ulcerative colitis. Thank you for this website; I know i will be back here often. I will be traveling six weeks after the surgery and am hoping I know how to take care of the ostomy by then. Any advice on this? I thought about waiting to have the surgery after our vacation (once a year cruise), but am hoping to have more freedom with the ostomy than I have with the colitis. I am 70, so am going into this later than some. Would love to hear from others my age as well.
    Thanks.

    Reply
    1. cmdcwc

      Carol – if you haven’t taken your cruise yet, I know that with any kind of ostomy, you need to let the cruise line know. They will provide you with a biohazard bag for the bathroom.

      Reply
  34. Jerry

    Just a thought for those of you who are experiencing problems with full pouches at night. I have diabetic autonomic neuropathy. One of the problems with that is, “violent nocturnal diarrhea.” And, I mean, diarrhea. And, not only at night. My docs suggested a colostomy as opposed to living in diapers and plastic pants, which I did for almost 3 years. I was afraid to leave the house. The colostomy has been a life saver for me. I’m able to get out and do what I want. I even went back to work, part-time. I was still having problems at night with the wafer coming loose and creating a disaster. Very high volume output while sleeping was more than the pouch could handle. Here is my nighttime solution, which, seems to work pretty well. I’m using a two-piece wafer and pouch system. During the day, I wear a drainable pouch and everything seems to go smoothly. (No pun intended) At night, I remove the pouch and replace it with a compatible bag normally intended for irrigation. I roll the top of the bag closed to secure it with the bendable wires and clip the bottom closed. I wear sweat pants to bed and it holds the long sleeve in place. I do use a body pillow and I’m careful not to get the bag between my legs and the pillow. In the morning, I empty the sleeve and rinse it out. I hang it up to dry during the day and put on a normal pouch. I have been sleeping through the night, which, results in getting more rest than I’ve had for 4 years. My sanity has returned. I’m not sure why the ostomy supply companies don’t produce a, “night bag” for colostomy patients, but, I haven’t found one yet. With a little ingenuity, I’m making the irrigation sleeve work. Good luck!

    Reply
  35. Sarita

    Hi just found out I have to have urinary diversion to save my kidney I have already ileostomy for 22 years stage 3 reveal cancer very adjusted to that but now they plan to switch my ileostomy to make urostomy then pull the section left ofsmall bowel thru on right abdomen
    In effect they create one new opening for still after switching current ikeostomy to urostomy anyone ever have this ??

    Reply
  36. Tylor

    I have had a severe inverted stoma for 7 months the more weight I loss the harder it is to keep it from leaks I sleep siting up most the 7 months on my sofa I’m married with 2 kids it’s been hard on me not to hold my wife at night I’ve woke up to having many leaks wh3n i did sleep on my bed got on my wife these 7 months we have had to learn everything on our own I am soon to be up to reconnection surgery

    Reply
    1. Stephanie Hughes Post author

      Tylor, I’m so sorry you’ve had so many difficulties with leaks and with an inverted stoma. Living with an ostomy is not easy in itself and even more difficult with complications. I’m glad to hear that you will be up for reconnection surgery and hopefully you will have no further issues. If for any reason the reconnection does not happen, I would at least recommend speaking to your surgeon about a stoma revision. Good luck.

      Reply
  37. Diane

    I wake up every 2 hours n empty it. It’s not full but there’s some in there. Every night I automatically wake up every 2 hours. I wish that could stop

    Reply

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