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I don't know how to deal with it. If I leak at night and totally soil my bed I will have a nervous breakdown. How should I deal with a soiled bed? I will be deprived of sleep, I will need to wash the blankets in the middle of the night and how do you clean a mattress? 

My mom's dogs once jumped on my bed and they peed on it and I just sat there and cried. Just before I had made the bed and put fresh sheets and blankets and then I had to do it again. How much worse when it's poop and not pee? Just little tasks like that really drain my energy. I can't make beds, I can't vacuum, I can't stand at the sink to wash dishes. I can't stand for 5 minutes because I will feel that I will faint. I do faint if I don't intervene. One time I only took dishes to the kitchen and put them in the sink only and I knew I wouldn't make it back to my room. On my way to the room I fainted and blacked out. That's all happening even when in remission so I know I will have this problem after recovery. I have orthostatic intolerance and no surgery can fix this. Plus lack of knowledge on how to clean beds and mattresses. It's causing me anxiety. Now at least I have diapers so when I poop myself it goes in there and I take them off and throw them away. 

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There are ways to reduce this. I cannot speak for other members by for me, leakage as I sleep is a certain thing it just depends how much as each day can vary. I have found the following helps:
1. Make sure after your last meal, wait until a bowel movement as much as you can (don't force one)
2. Take some form of blocker medicine about 15 mins before you got to bed.
3. Wear comfortable practical underwear you like to wear 
4. Put a night time pad in there and a small bit of toilet paper between your cheeks.

- I haven't soiled my bed in years

Maxima66

Soiling bed and getting dirty is pretty normal in few week post surgery. Here's a thing babies do that all the time. They have a hard time controlling that inconsistent poop too but they learn soon. Same goes here. You'll get used to with some pelvic floor exercises. Put a plastic sheet below you and sleep without being bothered by it. A good sleep will help in a faster recovery . Staying awake isnt going to solve the issue. Good luck 🤞

R

Andrina, so sorry. We all thought you were talking about a j pouch. There is a spot on here to inquire about stoma care. Depends are out. Lol  You can still cover the mattress with the plastic cover. Its the most expensive thing to worry about. Blankets and sheets wash. Before you have your operation a stoma nurse will mark your abdomen for the stoma and try to explain the process to you. Good time to ask questions. You will most likely have a home health nurse come for a week or two after the surgery to help you learn to deal with how to change your appliance and keep the skin healthy and such. Everyone is nervous about bags leaking and having to change a couple of times a week. Just know that before you know it, it's going to be second nature. So first and foremost, calm down. I never had a leak at night, and you most likely won't either. However if you do have a leak, you will get up and change your appliance and your bedding and go back to bed. No big thing. Good luck, let us Kno w how it goes.

Aimee

A

I used to use a changing pad underneath me even when I had my ostomy bag. That made me feel more comfortable. I tried to sleep on my bag instead of my side which also helped. I would put a hand towel underneath the bag (between me and my skin) and that would catch anything that would come out if the bag came loose. I don’t think you’ll find that this will happen often. If it does, you’ll usually few a little leakage before your entire bed gets wet. I never had an accident that went through the sheets, especially when I had my ostomy bag. 

I understand how this could cause some major anxiety. I remember waking up one night and I had to change my bag bc it got pretty messy. It was mostly due to the lack of a good deal between my skin and where the wafer was near my belly button. It would ooze out bc my belly was round and I didn’t seal it well. My doc suggested some paste that I could mold and basically make a damn in that area, preventing it from oozing out. It helped immensely. I also felt better and more secure where I noticed I was sleeping better bc I wasn’t constantly worried about leakage. And if it happens, it happens and you just get up, use some wipes to cleanse yourself up, change the bag if need be, and then get back to bed. It is what it is. You’ll be okay. 

When is your surgery? Is the long term goal to have takedown surgery in the near future? 

B

I would use the pads just for peace of mind.  Getting a good seal will definitely help.  I also used the moldable seals to help.  I will also say, I usually got up once during the night to empty my bag, then just went back to sleep.  In the beginning, it was so new, just had to get used to it.  Much better than the numerous accidents I had with UC and c-diff, with changing sheets, washing pajamas (mostly done by my husband because I was too sick).  Bag and j-pouch are so much better!  And I am much healthier!

C

What I didn't get from your original post is that you are just beginning the process.  It is very likely you will feel much, much better than you do now with a stoma as your first step!   While the stoma is a scary thing, once I managed it I was very thankful of how well it allowed me to feel!    Better times are coming.  Take it slow and feel/get better!    

aka KNKLHEAD

My methods for dealing with shitting the bed are as follows:

1) Get a waterproof mattress cover so you don't ruin something you can't launder. Amazon has them for like 30 bucks.

2) Wear menstrual pads to bed on nights when you think it might be a risk. Or depends.

3) Don't go to bed drunk.

4) Don't eat for the 2 hours leading up to bed time.

5) Flagyl and Cipro daily, 500 mg each, for the rest of my life.

"That's all happening even when in remission so I know I will have this problem after recovery."

Don't speak too soon - a lot of my peripheral symptoms of just being a person of overall poor health subsided after surgery. For example I stopped having rashes and my periodontal disease went away. 

Of course some things didn't go away, like my chronic sinusitis. So somethings may not change, but you never know. The human body can be quite a wildcard.

RS

I unfortunately had a few leaks with my ostomy. I don't think they are entirely preventable. There are a number of good suggestions here. As others have mentioned, a mattress cover is a must. I still use one to this day with my pouch, just in case.  If travel is a concern you can purchase portable mattress pads (you may have to go to a baby store), or some hotels will provide them on request at booking or check in. You can also get disposable incontinence pads from home healthcare stores. Failing that, I have once or twice tucked garbage bags (cut open and laid flat) under the sheets when I was away unexpectedly.

Spooky
Last edited by Spooky

 Andrina; Sorry to hear about your suffrage, leakeraging is a common problem with  J pouches also.  It was almost the most difficult time for me when I had the temporary stoma and colostomy bag .  I `ve had the bag come unglued while I was inline at the cash register and, once in bed while I was dreaming about actually being asleep !!!  I found a type of colostomy bag that had the wax waffer  combined with plastic flange that the bags would snap on and off to change to a new bag. The bags also had a clip on the bottom end to empty them.  But THE MAIN THING is the plastic flange was designed having loops and a ELASTIC BELT that can be adjusted to help secure the wafer flange to the person.  It really makes a big difference. You feel the belt around you holding the base and everything in place and depending on how taught you adjust it, it applies slight pressure that helps to reduce the fluids from eroding the paste and getting to your skin.  I am sure you could look online and find some types like that.  That elastic belt secured type was the best thing that ever happened to me while I was brown bagging my lunches.  No more surprise fire drills.           

FM

I had another leak this morning but it was entirely my fault because I ate too much too late again. I woke up at 6:30 this morning and I was so thankful for my mattress pad. I put everything in the washer and started it and went to work. I had just changed my bag and I really didn't want to change it again but the poop went underneath my barrier so I had to.

Sadly I developed skin rash just a few days ago. I applied some powder and put the barrier on and this morning everything was healed. I'm so happy about that. I just don't know how to avoid the skin rash as I don't know how it happens in the first place. It's on the bottom edge only.

I actually found a medical supply store in my city and I purchased a belt which goes with my bag and I love it. Currently I'm using a two piece Hollister system.

I also bought a "waterproof" blanket so if it does leak onto it, it won't seep through to the other blankets I put on top. I use quite a lot of blankets as I hate sleeping when I'm cold haha

I love the garbage bag idea in case of an emergency.

Thank you all for your support I'm really thankful for it.

A

Andrina :  I wish more people would give the simple advice for the belt type of colostomy bag system, I am sure a person could sell one to anybody with a colostomy,  I to hated to love it ?? lol ??.    It`s probably not  a rash per say but, the digestive enzymes/ acid in the out put getting to your skin.  Like stomach acids that are able to digest meat you eat, they will do the same to your skin. I would recommend getting a tube or, a couple of tubes of " Calmoseptine " skin barrier ointment.  There`s an advertisement on this site for it. Most all of us use it most all of the time. It has a zinc oxide base to it to really protect the skin under harsh conditions.  Metamucil may help to thicken the out put and trap the acid in the gelatin it forms. You do not have to take the doses recommended on the jug. You can take half a glass of water with just one tea spoon and figure out what works or not for you and when.  I will have to say that you can till by the out put that the digestive acids do not break down the Metamucil gelatin which that is why / what you would be taking it for.  Because of that quality the instructions label  CAUTIONS / WARNS   not to take any medication within 6 hours before or after a dose of it. The gel will coat/ encapsulate the meds and you will not absorb them. You could possibly also get your doc to write a prescription for the Calmoseptine  if that would matter.                                                                                     I used to empty the bag as much as possible, the clip broke one time and it emptied into my boot ... LOL .  I wrapped a small rubber band  on the new clip so it wouldn't`t happen again.                                                                                                 I hope you don`t have to struggle as much with the lesser things with this larger ordeal.                      

FM

Andrina ;  When I had the stoma  the  GI doctor instructed me to not let anybody touch it in order to minimize and avoid infections.       I only used the Calmoseptine on my skin.      I was warned by the GI doctor I had  NOT  to letting stuff contact my stoma .     The only thing that was to allow to contact it was the waffer paste to make a good seal around it.  Always check with your Doctor .            Hang in there.                                                                        

FM

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