Waking and worrying about a leak, does it ever go away?

I'm still relatively new to having an ostomy, only had it since June! I still find myself waking up every day and the first thought that comes to my mind is, "Have I had a leak?" And those first few seconds of the day are always a panic until I realize I haven't (or have in some cases). I just want to know from those of you who have had their ostomy longer, does that morning panic ever go away? Thanks

Hi Sophie, yes, I hardly ever question the security of how well my pouch worked. I guess it comes with time. A leak is a mess, as we all know, and no one likes it when it happens, but once you have found a pouch that works under normal daily life and routine, your worry will lessen. Sure, it may happen again, but prepare for it by having the things you think you will need to get the job cleaned up as quickly and cleanly as possible, all together and ready to go. Most of us females have an emergency kit for when we travel, so why not have an emergency kit put aside too for a leak in bed? Maybe you can be the one who posts a blog about what you would put in this emergency supply. Have a great day.

This sense of panic will go away, Sophie, with time and experience. Somehow I manage semi-consciously to assess my bag size during the night when I change positions. Instinctively I will wake up when I feel the bag becoming enlarged and take action. Don't ask me to explain how this works. Perhaps it's a form of kinesthetic awareness. Things will surely sort out. Do not be afraid. PB

I have to agree with PB on this one, I can't remember how long it took, actually after a couple of leaks at night I started to automatically wake at whatever time my pouch tells me to get up and get er done. And the panic also took a break so hang in there Sophie it will all come to you and soon I hope, Ed

Thanks for all the advice. I do tend to wake up in the night when my bag gets full. Like primeboy, I can sort of tell what it's doing if I'm lying on my side or however.

My Ostomy Journey: Kimberly | Hollister

I used to have a major leak problem... I went to a wound clinic and we tried everything under the sun... I use adhesive spray, a rubber ring (gasket), and adhesive paste (caulk)... Also, make sure your bag is properly fit to your stoma... It took me a few months to get it right.

Yep, there's quite a learning curve, especially when the sum total of my knowledge was that I had heard of a colostomy. When I got sick overnight and had a really fast 150-mile ambulance run, I was opened up from groin to thorax. Ten days later, I woke up with this contraption nailed to my belly, and from there, we started our journey. I learned a lot of new words, like when you have a blowout. I'm sure a lot of you had the same experiences, Ed.

Does the panic subside? Sure. Once you get used to the fact that leaks can occur at any time, and develop a routine to address and prevent them, the panic part will lessen. I've had my urostomy since 1966 and lived through the days of sub-standard (compared to what we have today) ostomy bags. My earlier bags were held in place with painted-on rubber cement and tape. The plug was held in place with a rubber band. The plastic bags were cheap, and believe it or not, reusable. We simply washed them out and reattached them to the rubber flange. I cannot count how many times those various components failed during the day, while I was in school, or at the store. I remember one incident very vividly. In gym class one day, the little rubber band broke and the plug fell down my leg and onto the floor. Every other kid looked at the plug lying there, and then at my pant leg soaked in urine. Panic? Today, things are so much better, but I do have some moments of panic. I do wake up every now and again in a wet bed. But it is part of who I am. I just have to make the proper adjustments when needed. PB hit on something in his response. I too wake up at the right time. I'm not sure why it is, but if my bag is full, I seem to awaken and then go empty it. Perhaps in time your body will develop this sense, but in the meantime, please do not panic or fear these things. As messy as they are, you are here and alive. Bless that and move past the rest.

I had my surgery in October of 2012. I have a hernia, and my bag leaks 24/7, and I am only allotted 20 bags a month, and they give me a hard time. I feel your panic; I have it all night and day.

It is true that a sixth sense eventually kicks in, but I have found that wearing support during the night stops the freedom of stoma movement, and causes pancaking, causing the pouch edges to moisten up and loosen, hence leakage. So now I sleep pouch-free. It's worth a try, believe me.

It will never go away completely, but it will lessen. I promise.

How do you not leak with no bags? If I am understanding correctly, please, any tips will help me. With a hernia and them saying surgery would be too risky, I leak all the time; it sucks.

That sucks that you have a hernia. My GI thought I had a hernia because of the bump and the pain, and that it was near my stoma, but it was an abscess. I am a pro at leaks! Funny though, I have two bags on. After that abscess was removed, following the removal of the two drains, it never closed, and now I have a fistula! So, two bags, two leaks, sucks. Anyway, I've had my ileostomy for two years and have had so many leaks for a lot of different reasons. First, make sure you're cutting the wafer hole just big enough. I cut mine too small because I didn't want the output to get on the skin. But that just made the stoma swell and lift the wafer slightly. So make sure it's big enough. Second, find the right adhesive paste. There are the rings, but I like the paste in a tube because it's quicker. What I also use is this Flextend from Hollister. It's like this sheet you cut for around the stoma for extra adhesive or for sensitive skin. I cut mine out to go over just the areas I know it leaks...to the left near my belly button, and above where a healed suture made a dent. You want the skin the same level!!! If you have scarring like I do, it may cause unevenness. To make it even, just use paste. I used to fill my belly button with paste to make it even with the skin. Third, don't eat a lot for dinner. If you eat something like a burrito or a big meal in the evening, you are likely going to have to wake up in the middle of the night to empty the bag, or more. Don't drink a lot of fluids right before bed either, like tea, water, or juice...it will all go through quickly. My savior, though, is the belt! I wear it throughout the day too, with clips on the end of the bag, and it basically pushes the stoma forward and the wafer back. Just think...moving around moves the wafer. The more activity, the more you wear it out. Also, try not to flush your bag with water. I did that at first because I thought the whole situation was just gross! It's the stomach acids in the output that make the adhesive swell. Water wears it down. Also, don't have the wafer on for more than four days. I wait till just 3 days. The longer you wear it, the more the stomach acids work their way under the wafer. The adhesive only works for so long. That's my advice; it works well for me :)

Hi, I had my colostomy in July and my urostomy in October. My urostomy leaks a lot. I am so paranoid I check it all the time and have panic attacks if I think it's leaking, whether it is or not! I know the fear you speak of.

I have had my ileostomy for 13 years, and I still have 'surprises'. Despite two revisions. But, keep a sense of humour and an extra appliance (and zip-top bag) with you and you should be prepared for the unexpected ;-).

Sophie, I have a urostomy stoma and go through spells of having leaks. They can be embarrassing (especially when you're in front of a class of 13-year-olds). Two years ago, I was in Singapore. The humidity there was quite high and caused me to sweat a lot. I think there was a day when I had about three leaks. It got to the stage where I was worried I would run out of stoma bags. I then kind of discovered that the rings I was using to make baseplates more adhesive were the problem, so I stopped using them and hey presto, I managed to get the holiday over. I still had leaks, but managed. It's all about confidence too. If you feel you have a leak, just excuse yourself and go sort it out. It doesn't always get easier, but you learn to cope. I've had my urostomy for 18 years and still find it can be a right pain to deal with. Be lucky, Gordon