Seeking Support And Advice After Colostomy Surgery

winter

Nov 10, 2010 6:41 am

i am fairly new to this site. i had a colostomy 2 1/2 years ago. i did not know that this site existed. i am looking to talk with anyone who knows what it is like to have this surgery. i do not know anyone....it's been a long couple of years. i have had many problems, but the one that pisses me off is the "overnight blow out". please, please ...help me out.
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i would love to talk to anyone about it. i am looking forward to hearing from you. i have no family here, so my support system is almost nil. have a few friends, but they do not live in edmonton. would love to talk or even meet with people who can relate.bye-bye for now
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nessy

Nov 10, 2010 7:08 am

Hi winter, have you tried chatting in the General chat room, it can be accessed from your profile account.
Cheers Bob

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Posted by: Audrey Warren

This site is a godsend. As a newbie (colostomy on Nov 8, '21), I look at it every day for a number of reasons. Reading what people are going through makes me grateful that my elective surgery because of a severe case of IBS-C is nothing compared to what they have been through and are still living with.

I don't have to go to the hospital for anything related to my ostomy. I feel sorry for those who do and am in awe of those who can use humor to describe their ordeal. I identify with those who express their fears. I especially identify with those who are depressed because I am clinically depressed and have general anxiety disorder. How ironic that having a colostomy eliminated some of the depression and anxiety that the IBS created. I've been widowed twice and I'm on match.com.
I immediately included my operation in my profile and am pleased to say it doesn't seem to make a difference.

And there is much humor on this site and it's one of the reasons I enjoy it so much.

I could name numerous things I've learned from reading people's comments/questions/answers.

After months following on a daily basis, my only negative comment is I don't like listing the most popular members.
It's not that I don't like these people; I do. It's that I think it elicits some "Facebook"-like banter or comments that are gratuitous.

I don't do any social media and think that its merits are overshadowed by too much negativity.

Meetanostomate is in no way negative. I just think the gallery of "popularity" detracts from what is an excellent website that deals with a serious issue that causes a myriad of emotions.

Past Member

Nov 10, 2010 9:25 am

Poor you, nothing worse is there, than having to sort yourself out in the middle of the night, having been through that several times, and considering moving from my king sized bed down to a single because of the washing (but I didn't)!- not yet anyway, I can tell you my plan of action is to eat very little, if at all, after 6p.m., I go to bed around 10p.m. read or listen to my ipod for about an hour, empty before settling down, and trained my brain to wake up around 1a.m., and then again around 4a.m. and make myself get out to the toilet and empty the bag, it's always in need of emptying as my stoma seems very active, I get up at 7a.m. and change daily, feeling "clean" for about 5minutes with a shower and the new bag!!
I used to sleep on my stomach, but can't do that anymore, and I now lie on my left side or back only, and I am now used to sleeping that way.
As far as I'm concerned, so long as my "accidents" are minimal, I can deal with this situation I've found myself in these last 4 years, it's not been easy but I'm pleased to still be here! Hope you get lots of support and advice on your problem. Finding this wonderful site will help you enormously, I send you a big hug.

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lottagelady

Nov 10, 2010 10:19 am

Hi and welcome to our merry bunch! I think most of us have experience the overnight 'football' 'zeppelin' or whatever you want to call it!

I find that if I change bags in the evening that I often tend to lose it overnight, so try and avoid that. I aslo try not to eat too much fibre type foods for my eveing meal as that often pushes it off too.

Before bed I put in some Adapt Lubricating Deodorant which helps it to slip down the bag when I am lying flat rather than ending up 'pancaking' around the stoma itself.

I also sleep on a towel just in case as changing that is much easier than changing the whole set of bed linen!

Still get the odd one mind, but generally find I can contain it in my 'magic knickers' which I need to wear in bed to give my hernia a bit of support!

Good luck, hope that there may be something there that may help ....
Rach xxxxx

CALYPSO

Nov 10, 2010 1:04 pm

Hello Winter,
I too have had these problems, until I saw the stoma nurse, who suggested trying a convex bag. They're a slight saucer shape, snug fit aroung the stoma, but allows the waste matter to fall into the bag better.  I was having "accidents " morning, noon and night, I've been using these bags since September and am glad to say no more accidents.
     There are peeps who prefer the two part systems, Im happy with mine, for the moment at least. Its a question of choices, so get in touch with your stoma nurse and discuss the many options available, Its about finding what works for you.
     There is a solution out there, my dear, its just finding it.

Many very kindest wishes, Angela
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My Ostomy Journey: Ryan | Hollister

Tiggy

Nov 10, 2010 5:35 pm

Hey there! Welcome to our little online community!

My name is Liz, and my husband Tyler has had an ileostomy for almost two years now, due to untreatable colitis. I come here quite often just to get tips and tricks, seek out advice, and hopefully be a good listener to others who are having problems adjusting and coming to terms with their new bodies.

I can't speak from personal experience where your problems are concerned (I think I might be one of the only frequent visitors to this site who does NOT have an ostomy herself), but I can tell you that it's a hell of an adjustment period you're going through - and that it DOES get better. One of the tricky things about being an ostomate is finding out what works best for you as an individual. All of our bodies are different in ways that can range from the drastic to the subtle; so it stands to reason that each ostomate will find different methods of making their bag work for them.

I have heard many horror stories about bags exploding, leaking, and just being a pain for those who have to wear them. But for each of those stories, I have heard various solutions people have come up with for their problems and struggles. Sooner or later you will find out what works for you - what foods are best to keep your output healthy and regular, what slight modifications to sleeping positions are most comfortable for you, etc.

Don't be a stranger, and keep us all posted on how you're coming along.
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Regards;

Tiggy/Liz

greenfairy

Nov 10, 2010 11:16 pm

Hi Night time blow-outs are horrible. I get very mad when this happens, it is horrible to be woken up by such a mess and have to shower and clean up in the middle of the night when you are so tired. I have had many over the 11 years that I have had my Ileostomy. One of the things I have found that helps me reduce these is simply training myself to wake up during the night to empty. This usually is not too hard for me, because I am a side sleeper and when I roll onto my right side and my bag is full, it wakes me up. The only times that this fails to wake me is when I am very tired or my wafer has already come loose before I ever turn over. I have found that it is usually a lot of gas that makes it swell so much that it comes loose, so that is another good tip, is to avoid gassy foods at night. I hope that this helps. Everything will work out and in no time even you will forget at times that you have a bag. Kelli

ron in mich

Nov 11, 2010 3:35 pm

hi all hey winter have you tried wearing a belt that clips to the tabs on your pouch, that might give you a little more time to wake up and empty before it leaks. good luck, ron in mich

conehead

Nov 11, 2010 8:32 pm

Hello winter. Ron in Mich is right about a belt to clip on your pouch. It helps me. And I sleep under three towels also. Will be two year Dec 19th since my surgery. I've been averaging about 5 to 6 days/ changes to bag and wafer. Tougher for me in the hotter months because of working in the heat. My skin does rash easily in the heat and have to apply cream (prescribed by my surgeon), stoma powder and a adhesive spray on my wafer and skin around the stoma area. Let dry for 5 minutes. Then put DuoDerm tape around stoma then put wafer over that, then snap the back onto wafer. Then lie down and add pressure to the wafer area for 5-10 minutes. Then I'm ready to roll again. Sounds hard, but not bad at all. Stay positive and strong. Things will get better. Later, Cone

WOUNDED DOE

Nov 13, 2010 3:10 pm

Welcome to the site winter!
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  You're going to make some great friends here
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  We certainly understand about the blowouts, never a nice thing to deal with but it happens
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  but sometimes, though everyone is different, sometimes little helpful hints to try will come your way.......until you figure out ways to help lessen the frequency of nighttime blowout maybe wear a bigger bag for awhile, sleep on a towel, get a plastic mattress cover, no food or at least no gassy foods a couple hours before bed, even setting a gentle timer to wake you once or twice during the night so you can check to see if you might need to empty the pouch...try not to lay on your tummy.....inspect the tape on your pouch before snuggling in to make sure everything looks secure, etc....it's one of those things you may not ever 'cure' but can find ways to help and you will discover your own little tricks and ideas too
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  so there are fewer probs.......
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~Your Doe

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itsallgood

Nov 15, 2010 2:10 am

The one big find for me and blow outs was to find the spray adhesive by Hollister for the wafers. Makes them stick/stay in place really good and helps with day to day wearing You may want to try adding a stoma belt to help support everything. Thumbs up to what you eat before bed time too. It is a learned process as we have all found out for every one is different. I had your problem when I first started out too. Not fun nor nice. You may want to try the adhesive. It saved me from changing wafers 3x a day in PHX to once every 3-4 days. The best was at night though. When there were no more blow outs you can try to get some sleep without the worry. Hopefully you find your combination.
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gutenberg

Nov 19, 2010 3:08 am

Hi there winter, its difficult trying to keep a lot of hints when you're trying to get over so many problems, so I'll just throw in one for now. We really needed a new mattress but before we could do that with all the blowouts, my wife went to Walmart and bought one of these padding sheets about 30x45. they are cotton one one side and the other side is made of some kind of material that nothing would pass through, Yea, new mattress, and now i automatically wake at 3 o'clock then again at 6. Now I'm not saying this was easy but I also learned to use the washer and dryer but every once in a while we do have a blowout, I made the mess now I can clean it, that's todays lesson, Ed
PS if there's anything you think I could help you with contact me by mail

funnygurl

Nov 19, 2010 5:13 am

Hi winter. I live in southern alberta but am often in Edmonton. I also have a leak proof incontinuence pad like th eones hospitals use for when I am not at home. I bought mine at my ostomy supply outlet. They are about 30 inches square and pack easily. I have had my ostomy for 7 years.

OstomyRd

Jan 02, 2011 3:31 am

Hi Winter, I'm new here too, though I've had my colostomy for over six years now. As you can see, there is a lot of good advice here, and everyone is willing to help make life a little bit easier for others.

I've had my blow-outs too, but with time, I've been getting better. I've learned to pay attention to my body, even while asleep ( some sort of six sense perhaps), and I am now able to wake up when I sense my pouch is getting full, go to the bathroom, and empty it. I find it necessary to do this two or three times a night, though there has been an occasional time that I'm able to sleep the night right through ( ahhh...sheer bliss!). Having said that, I know that if I'm overtired, I may not wake up when needed......oh oh! gotta love midnight showers when you're half asleep!

I also take a 30mg codeine tab just before supper and also just before retiring for the night, it helps slow down my system to keep the sleep interuptions to a bearable minimum. In many ways, my colostomy acts more like an ileostomy.

So try some of the suggestions that's been put forth, and don't be afraid to try new ideas, along with new products that come on the market. I've found that what works for someone, doesn't help much for another; so try not to get discouraged ( I know... it's very hard not to at times...) and look forward to a new day. You'll get there!

John

PS.... thanks for the wink... if I can just figure out how to return it....perhaps I should spend the $29US and get a full membership.
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Past Member

Dec 02, 2011 1:15 am

Hello Winter

Thanks for the wink. I opened and account here some time back, not really expecting to chat with anyone. So it was very lind of you to send a note.

I've had my colostomy also for a year. Went to get a reversal last month, and they couldn't fine the end. Big sigh........so I plan to try again. Hopefully soon. Must be cold in Edmonton by now. Rather mild here, a balmy 6 today.

Guy

banshie3by5

Dec 02, 2011 5:49 pm

Hi Winter,
Some great ideas above.  Another thing I do (I don't think this was mentioned yet), is I watch what I eat in the evenings.  Carbonated drinks (including alcohol), beans, broccoli....these are big outputs for me.
For instance, I love chili and/or homemade ham&beans. But I know it's going to be a lot of output that no glue, tape or belt will help.  So I either 1. eat a small bowl at noonish, with dinner later to shove it through. or 2. Eat my heart out the afternnon & evening I know I'll be staying up most of the night doing the 6th-sense-dozing-thing with towels on my bed.
The hardest part of the first year-ish is figuring out what YOU can eat.  There are things common to ostomates, or Crohn-nies, but each person is different.  Or what supplies work best for you.  You may be timely and be able to use a closed bag, or you may have to empty so often that you need a drainable.  You may be able to irrigate-train, though this is not reccomended for IBDs. Keep coming to the site...it helps.  I didn't have help the first couple years, either.
OH! the best trick I learned here was ALTOIDS....great for odor control, just drop a couple in your bag after each emptying.

Seeking Support and Advice After Colostomy Surgery

My Ostomy Journey: Ryan | Hollister