leak at night while asleep

Diseases & Conditions Ostomies
1
It is 3:25 a.m. and I am up washing my sheets and mattress pad and have cleaned off my mattress and carpet where I had a bad leak while I was asleep and woke up literally laying in a puddle of crap!  This hasn't happened to me in a long time and it was a pretty bad one, i can't believe I didn't wake up sooner and feel it on me, it was horrible,  does this ever happen to anyone else??  i don't know why it did it.  I am just so upset and frustrated.  I am the one who wrote the other day about the protruding area around the stoma.  i went to the et nurse Friday and she thinks it is a heria, but thinks it is not bad enough for a surgeon to do surgery, she said he would probably say, "Lets just keep an eye on it"  .   That kind of disappointed me too, because I can't wear clothes tucked in because the side where it is sticks out more than the other side and it is noticable.  i guess I am just feeling sorry for myself.  I feel so alone sometimes and wish I had someone in person to talk to and to lean on, who understood what all this is like.  People who know nothing about otomies have no idea how frustrating and depressing it can be sometimes.  When I woke up earlier, I just felt so ....... I can't even describe the feeling I had.  When I stood up to get out of bed, it got all over the carpet and I just wanted to scream, cleaning up crap is the last thing I feel like doing at 3 in the morning.  I will probably have to wash the sheets 2 or 3 times to make sure they are clean,  does anyone have any suggestions for stain removal for the mattress?  I didn't have a cover on it, just the mattress pad itself.
 
Also, what kind of pouches do you all use?  I think it is time for me to try different ones.  The nurse gave me some to try the other day and I have not tried yet, I use the same ones I used when I had surgery, 16 years ago, I'm sure there are better ones.
 
well, thanks for listening, i really just had to vent since i have no one else to talk to about this,  it's time to wash another load....
2
So sorry about your leak. I had a similar experience a couple of weeks ago except mine was contained to the bathroom. Unfortunately, my bathroom is completely carpeted and the bag slipped out of my hand when I went to empty it. It was between 3 and 4 am (must be something about the time!) and I spilled totally liquid stool ALL OVER the carpet! My poor husband was up running to Wal-Mart at 4:30 am to try to rent a carpet cleaner. I cried and cried and cried! It turned into one of those ugly boo-hoo crying spells but I just couldn't help it.
I haven't had a leak in the bed and pray that I don't. I scheduled to have reversal surgery on Friday and I'm terrified of it but I'm ready to get rid of this bag. Hang in there. It seems that these leaks and spills happen to all of us.
3
I too have had the leak and spill before.  It is definately part of the landscape while having a bag.  I've had the bag slip out of my hands and all over the floor and trousers as they were down there, plus after my second surgery, had difficulty getting a good seal with the wafer and having it pop off and splatter.  Grrrrr.  It get's to the best of us, as here I was a 44 year old man so frustrated I just sat there and cried for awhile after all I had been through.  But we just seem to pick up and move on.  Give a good cry once in awhile to release the anguish, then get back into life.  Phil
4
Hi LFW.

My name is Michele and I can very much relate to your problems. I would like to talk to you more if you're interested. I will give you my e-mail and we can talk in private if you'd like. I too have horror stories that have been turned around to success stories, especially about seals. I am an expert now, so I like to think.(Yeah right). I have a 4 month old ileostomy after a hysterectomy screw up in March and am waiting for a reversal. My e-mail is "smokeyangel@shaw.ca". I would love to share my experiance with you and try to help with any questions you have. Good Luck and hope to hear from you.

Michele
5

Hi LFW,

I have had my bag lose it's seal and mess me up! I have had it while sleeping and also while up and about. I lamented over this "stinky" situation in the past, and I got a couple of answers. One seemed to work, so here goes:

I was told that I no doubt had too much acid in my tummy, going through the "pipes" and then to the bag. The acid was causing the seal to weaken, and then let go. My doctor prescribed Protonix (a Proton Pump Inhibitor) and I have been taking it ever since. My wafer has not lost it's grip since!

Another scenario has just jumped into my head! Could you have tossed and turned, flipping and jostling the bag while you slept? Could it just have been bumped loose?

I know that once, my bag just kept filling up with liquidy *stuff*. I kept emptying it, and it kept filling up. I was having a bad day. Eventually, it filled up too much and the bag popped off of the wafer. Could the bag have gotten too full while you slept?

I know this all sounds silly, but maybe.....?

God bless and stay well,

Maddi

I am in my 50s. Crohn's Disease (since childhood), pancreatitis, diabetes, neuropathy, arthritis, chronic fatigue, fibromyalgia, asthma, Rosecea. I have had 4 surgeries including pancreas/sphincterplasty, duodenum, resection, proctectomy with sigmoid colonectomy. I have a permanent colostomy.___________________                 ____________________
There's nowhere I can hide that God can't find me, nowhere I can go that God can't help me.

6

 Hi,

   I'm Judith am my husband had an iliostomy surgery July 5th due to a tumor in the colon. After a very rough recovery he is doing better. we had MAJOR leaks every night after he came home on the 9th. Hollister makes a great bag with seal and the colostomy nurse showed us how to build up a funnel system using to discs molded together to form a volcano shape to funnel the waste out into the bag. They also told him to use the belt to help support the bag at all times. We also use a sticky wax ring to fill in his bellt crease to make a flat surface for the bags seal otherwise the seal would fold into the crease & weaken the seal. NO MORE LEAKS since we've used this method & its been 5 days & nights with us having done the last change & 4 days & nights when the nurse showed us how to do this. the order number for these are as follows # 3612 First choice drainable pouch with clamp. The clamp looks like a chip clip for snacks BUT works GREAT. # 79520 Convex Barrier Rings 20mm We use 2 to get funnel action. Then eakin cohesive seals for the body putty stuff. Unbeilevable difference . hope it helps !

   Does anyone have website to go to get diet info for people with iliostomies ? Ive searched but no luck. the surgeon told us that my husband will not get many nutrients from his food because the tumor was high up in the digestive tract then ran off to another patient & left us flat. We don't see her for another 2 weeks & the nurses said we have to talk to the Dr. ARRRGHHH !!! Cancer is FRUSTRATING !! he has had histio sytoma for 5 & 1/2 years with all kinds of terrible diagnosis from you have 3 months to live , to we will most likely have to amputate your leg from the hip down. None of which happened SO my advice to anyone who has been given a diagnosis HEAR IT, STAY CALM, NO FEAR, PRAY PRAY PRAY & live life like you would want to before the diagnosis as long as it won't hurt your health & educate yourself wisely , go with your intuition. we ignored that, over Dr. advice & one year later they are doing what we asked for 12 months prior. Don't get lost in the system . take your health in your hands. Ok Ive babbled on enough but thanks for this support system it is wonderful. Judith

7

Judith,

If you give me your email address I can scan a copy of the diet for ileostomies and email it back to you.  If you are not comfortable doing that you can go to www.jpouch.org and there is a whole section on diets for ileostomies, but I'm not sure how detailed it is.  In addition to that, your husband's ostomy nurse should be able to give you at least one pamphlet on diet guidelines.  If your husband was seeing a nutritionist while he was in the hospital he could aslo contact him/her and get a diet there as well.  Good luck and stay positive.  I find that at the age of 24 (almost 25) and having experienced kidney stones, my stomach opening after my staples were removed, and a blood clot in my small intestine that damaged my stoma causing chronic blockages for a while, all in a period of 4 months it is my attitude and determination not to let my health get the best of me that has allowed me to make it through everything without having a complete breakdown!  "The nearer the dawn, the darker the night; by things going wrong all things must come right." -Longfellow-

Earthgirl :-)

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hi earthgirl,
my email is jaeu2@netzero.net . amazing how some people go thru so much & hold onto their sanity & humor & others fall apart at little things. thanx so much for your help. all the nurses are telling us he may eat a regular diet & if problems occur back off those foods that bother him. wow stupifying advice ! also you may call me judy that name was already used so i had to go to judith which only my mom calls me that when she is mad :) thanx judy
9
There really is no diet for ileostomates after they've healed. The nurses are exactly right in that respect. The vast majority of ileostomates can eat a normal diet. There are lists of food which can cause gas, cause odours, make stool thick or thin, etc but it's up to the individual as to whether these things bother them bad enough to stop eating certain foods. Have a look at http://www.ostomates.org/diet.html
 
At first he needs a bland diet while he is healing but after a couple of months, he should introduce new foods back into his diet one at a time. That way, if a food does cause him problems, he can either limit it or totally eliminate it from his diet depending on how badly it affects him. Unfortunately, it's a matter of trial and error (as is most things with an ostomy).
 
You'll also find various 'no-no' foods on different sites, which can include peanuts, corn, mushrooms, etc. These are not hard and fast rules. I (and most other ileostomates) can eat all of these foods (and it shows!). Just remember to chew, chew, chew! Everyone is different as to what will affect them and just because one person can't eat a certain food doesn't mean another one can't.
 
Most nutrients are absorbed by the small intestine. The large intestine mainly absorbs salt, water and potassium. Therefore ileostomates must take in more of all of these (no skimping on salt on meals).
 
Good luck.

I have had an ileostomy for 30 years now due to UC.
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!

10
I have had 3 nights in the 4 1/2 years I have had my ostomy that I have had to get up wash the sheets and blankets. It has to be the worst part of living with it.
MY stoma also sits on top of a mound, about the size of a 1/3 of a softball. I was also told it was from a hernya and it isn't bad enough to require surgery. Doc will just take care of it next time they have to remove more. I have Crohns and it is only a matter of time before more surgery.
LFW if you want to you can also email me too pincushion @ healingwell . net

Sigmoid Colostomy / Crohns / Type 1 Diabetic / Ostioarthritus / Fibromyalgia / Asthma / High Blood Pressure / High Colesterol / Migraines. Ain't life a joy?



* I think it may be time for a colorful metaphor*

11
Yep, happened twice to me when I had my ileostomy (reversed a month ago - now have new problems). I agree, the last thing you wanna do at 3 am is clean up poop, and two loads of laundry. My problem was trying to stretch a wafer and pouch to 5 or 6 days. Four days seemed to be all I could get out of my appliances, especially when active. Can't remember which stuff I used, and turned in my unused stuff to the place I got it from - they use 'em as samples when people need just a few without spending $80 on a whole box. Did anyone's insurance cover ostomy supplies? Mine didn't.....
12

Hi Howard!

Yes, my insurance covers my ostomy supplies 100%. I guess I am lucky!

God bless and stay well,

Maddi

I am in my 50s. Crohn's Disease (since childhood), pancreatitis, diabetes, neuropathy, arthritis, chronic fatigue, fibromyalgia, asthma, Rosecea. I have had 4 surgeries including pancreas/sphincterplasty, duodenum, resection, proctectomy with sigmoid colonectomy. I have a permanent colostomy.___________________                 ____________________
There's nowhere I can hide that God can't find me, nowhere I can go that God can't help me.

13

On my mother in laws advice I ordered a mattress pad thing from Sears over the web.  She also has an ostomy and sure enough twice I have had a night time leak but this pad saved my mattress and washes up easily with my sheets.  It is vinyl or plastic underneath but on top it is cotton or something with some absorbent layers.  Only cost $30 and well worth it.  It is a fairly large rectangle and once it is in place under my sheets I was still quite comfortable (not sweaty from the plastic). 

Check Sears web site under medical aides, stuff like those bath chairs etc.

Crohn's Disease since 1993, colon removed March 10/2006 with possible J pouch surgery ahead.
Asthma since 1996.
Pulmonary Embollism July 2006.