Fear of Bag Leaks - Coping Strategies?

Hey

So I had my surgery 9 weeks ago. I've been back to work for 2 weeks. I'm so paranoid about my bag leaking, people seeing it, etc. I don't sleep constantly thinking it's gonna leak everywhere. I feel like I'm going crazy. Any thoughts, comments?

Thanks

Sounds normal to me. It takes a while to get used to it. I posted a blog on 'Tips: sleeping'. I can find it on my own ID but I do not think you can search blogs. I will repost it when I am on the computer. I cannot do it on my pad.

A handout from my therapist:

Improving Sleep Through Behavior Change

Stimulus Control Procedures

Go to bed only when you are sleepy

The longer you are in bed, the more the bed is associated with a place to be awake instead of sleep. Delay bedtime until you are sleepy.

Get out of bed when you can't fall asleep or go back to sleep in about 15 minutes

Get out of bed if you don't fall asleep fairly soon. Return to bed only when you are sleepy. When you feel sleepy, return to bed. The goal is to reconnect your bed with being asleep.

Use the bed for sleep and sex only

Do not watch TV, listen to the radio, eat, or read in your bed or bedroom.

Sleep Hygiene Guidelines

Caffeine
Avoid caffeine 6 to 8 hours before bedtime. Caffeine disturbs sleep. Thus, drinking caffeine beverages should be avoided near bedtime.
Nicotine
Avoid nicotine before bedtime. Nicotine can keep you awake. Avoid tobacco near bedtime and during the night.
Alcohol
Avoid alcohol after dinner. Alcohol often promotes the onset of sleep but interrupts your natural sleep pattern. Do not consume it any closer than 4 hours before going to bed.
Sleeping Pills
Sleep medications are effective only temporarily. Sleep medications lose their effectiveness in about 2 to 4 weeks when taken regularly. Over time, sleeping pills actually can make sleep problems worse; withdrawal from the medication can lead to an insomnia rebound. Keep use of sleeping pills infrequent, but don't worry if you need to use one on an occasional basis.
Regular Exercise
Do not exercise within 2 hours of bedtime as it may elevate nervous system activity and interfere with your ability to fall asleep.
Bedroom Environment
Your bedroom should have a moderate temperature and be quiet and dark. Noises can be masked with background white noise (e.g., the noise of a fan) or with earplugs. Bedrooms may be darkened with blackout shades, or sleep masks can be worn.
Eating
A light bedtime snack, such as a glass of warm milk, cheese, or a bowl of cereal, can promote sleep. Avoid snacks in the middle of the night because awakening may become associated with hunger.
Avoid Naps
The sleep you obtain during the day takes away from the amount of sleep you need that night. If you must nap, schedule it before 3:00 PM. Don't sleep more than 15 to 30 minutes.
Allow Yourself at Least an Hour Before Bedtime to Unwind
Find what works for you to wind down, and perhaps give yourself an hour to do so.
Regular Sleep Schedule
Keep a regular time each day, 7 days a week, to get out of bed. Keeping a regular waking time helps set your circadian rhythm so that your body learns to sleep at the desired time.
Set a Reasonable Bedtime and Arising Time and Stick to Them
Set the alarm clock and get out of bed at the same time each morning, weekdays and weekends, regardless of your bedtime or the amount of sleep you obtained on the previous night. This guideline is designed to regulate your internal biological clock and reset your sleep-awake rhythm.

Hello Basegirl13.

I agree with all that xnine and his therapist says and it is a great little list to guide you. However, from what you say in your post, it sounds as if the problem might lie in the way you are worrying about it rather than what you are doing physically. You do not say whether the things you are concerned about are actually happening or not so it's more difficult to formulate a reply. It's as Xnine says, whether they are happening or not, the concerns about whether they might are quite normal until it all settles down and you get into some kind of routine. Once you get used to the new situation and realise that the things you are worrying about are either no longer happening or you are more able to manage them, then the worrying should diminish. If it doesn't, then you might need to seek some psychological advice to help you lower your anxiety and find distractions for your thoughts.

I hope this helps

Best wishes

Bill 

You will get more confident over time, especially as you see the system you are using is working. If you are having leaks, it would be a good idea to start a thread asking for advice about what system to use and such info.

I had a colostomy for 6 years and almost never had a leak. I got an ileostomy back in May of this year and at first, I had a few leaks, but once I realized I needed to stop using a barrier wipe as that was keeping my wafer from sticking as well as it should, the leaks stopped. Get a working system in place and a schedule of how long you can safely wear that system between changes, and you will be set and your fears diminish.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Over time, you will get a rhythm to your body as to when the last time during the evening your stoma passes output, and make sure you go to bed after that. Also, consider changing/emptying the pouch just before bedtime if there is anything in it at all so you are most likely not to cause any problems after you go to bed. Try not to eat anything late at night, and try to make sure you have a relatively early final meal (like around 5:30 or 6:00) and nothing after that.

That should help with the physical problems you worry about, but there is obviously a mental/emotional element. Do your co-workers know about your ostomy? Have some of them made snide remarks that cause you to worry? (Yes, there is always that one jerk in every workplace!) Or is everyone sympathetic and you just don't want to let them down by having an embarrassing accident? 7 weeks is not long to adjust to the reality of your ostomy, then you have to adjust again as you go back to work. 2 weeks there is also not a long time yet. I hate to just issue platitudes, but the fact is, time will make a difference, as you become more comfortable with your situation, you will become more confident, and it is obviously your confidence that has taken a beating with this situation. Try a few different products to help prevent leaks, like the Aqual Seal by Costa Medical, which can help anchor your faceplate, keep everything waterproof and help prevent odors from escaping through your faceplate. I like that if you have a breakthrough through your faceplate, the Aqua Seal keeps everything contained until you have a chance to change your appliance. Things like that can do wonders for your self-confidence, knowing you're not going to make a mess even if something does happen.

Always keep spare supplies with you in a small pouch or bag so you are always prepared. As a woman, it's easier, since we can carry a purse! Again, all these things will improve your self-confidence, so you worry less and can sleep at night.

Best of luck to you! Let us know how it goes in the future. We care!

Hi Basegirl. It sounds so much like experiences many of us endured in varying degrees. It’s probably perfectly normal to get at least a little crazy from all we’ve been through. Our confidence grows as we learn little things to prevent accidents. Asking for help is alway a good practice. I’m a 77 year old guy so a good night’s sleep is something I only vaguely remember. But I have avoided accidents following the advice of these wise folks here. It gets better.

Respectfully,

Mike

There is a universal thread to the replies - time is what you need. You might need time to feel confident in doing your changes and possibly try different products to see which works best for you (all the suppliers will give you free samples if you ask), but what time really means is that over time you see that the products are so good now that your concerns are unfounded and you can live your life confidently.

So until you get to that time where you have had lots of experiences without problems and you feel comfortable, you can do a few things to ease the anxiety:

1) Follow the empty when 1/3 full rule. In fact, you could simply empty every time you urinate, since you are in a stall anyway. There are drops or sachets that eliminate the odor, so no one needs to know what you do in there. If you never have a lot of output in the pouch, the chances of "leaking everywhere" become really slim, so if you don't let it get too full, it might reduce your anxiety.

2) Check out the apparel at ostomysecrets.com. They have great solutions for wraps that hold the pouch in place and underwear that does a great job of concealing it. They seem to have the best products, and they are very fashion conscious, but if you don't like their stuff, there are many other suppliers.

3) It is extremely unlikely, but visualize what you would do if the worst disaster happened. That would probably be if the bag came completely off by itself (this might have happened a hundred years ago, but I don't think it is possible with today's products), but even if it did happen, the entire contents would not be on the floor. Most would stay in the pouch, since it can only come out through the stoma opening. You might also have new output coming out of the stoma itself. So you are not dealing with a situation where it would take 20 people with mops to clean up. Most likely, you would simply have some soiled clothes, so you can think of a plan that works for you, even though you are extremely unlikely to ever use it. You could keep a towel at your workplace, cover the soiled area, mention that you have had a "wardrobe malfunction" and you'll be back when you fix it. You don't have to specify what the malfunction is. If you live close enough, you could just go home and re-boot your system. If not, you could just keep a bag with supplies and a change of clothes and include a doggy bag to put the pouch into plus a plastic bag for any soiled clothes and any wipes you have to use. Head to a stall with privacy to correct your malfunction. The plan is to put your brain at ease - you really won't ever have to use it.

4) Watery output is obviously worse, so there are crystals you can insert into the pouch that make the stool a lot less watery in the pouch.

Remember the time part of it - at 9 weeks you are still very new and still recovering from surgery. Your body functions will continue to improve, and in a year, after no problems, you will wonder why you had such anxiety over a needless issue.

Can't sleep either!! I'm glad I'm not the only one!! I'm always paranoid that the "pouch" is leaking!! I've had the surgery since December 2015 and I'm exhausted!! Actually called my surgeon's office today to see if I can have it reversed for a while to let my skin breathe and heal up, having adhesive stuck to your stomach 24/7 is literally suffocating, not to mention, painful!!! Is it like this for everyone or just women?? Sometimes I feel like just ripping off the wafer and feeling "free"!!!! I've had a lot of people ask if the surgery was reversible, which makes me wonder if an ileostomy is supposed to be for short-term medical reasons....

Hello and God bless,

Unfortunately, this is an anxiety of having a waste pouch. I have been a bag boy for 30 years now, and it does get easier, and the anxiety will lessen a great deal, but will always be in the subconscious. So the best and quickest thing for you now is to confront that fact head-on and deal with it by accepting. Be good to yourself. Get prepared and explore all your ostomy product options. Find what works best for you and gives some peace of mind. The bags with the Velcro closure I find are the most secure. I have had at times issues with the clamps. If you do prefer clamps or have only that choice, I highly recommend the Convatec short-straight closure clip because it has a very tight-fitting snap-in closure, as opposed to the curved ones that lock on the tip end (these are flimsy and not as tight-fitting).

Take care and wish you the best,

Bobby

Hi, this is for basegirl, and for anyone else who is plagued with anxiety. I had my ileostomy surgery when I was very young, 15, and more than anything, I wanted to get back to real life. I didn't let thoughts, concerns, anxieties get in the way.... Sigh.. Power of youth I guess.. I did things then, I don't think I would ever do again.

I'm 69 now and over the last 3-5 years, one thing after another, medical and other events, created anxiety that I just couldn't control, and I developed PTSD. The feelings of fear and anxiety were so foreign to me..... that I thought I was going crazy. I was afraid to just leave the house...

A therapist and some medications helped me through the very real issues......but I also had hard work to do, to control the emotions over time. One in specific was to learn to stop the "thoughts" before the anxiety, palpitations, shortness of breath, and crying began. Not an easy task....but I did it, and continue to "do the work".

Shut off the "Longing for the things you can't have"....especially if they lead to anxiety and crying (for me was the damaged relationship with my children) as well as all the physical issues that just kept happening.

When your/my heart started to pound......or tears started to fall......I started to do deep breathing... It's a habit now, and when I'm running late or in the car, with traffic.....I deep breathe, out of habit... It's calming!!!!

Mindful meditations.... I found that listening to mindful meditations I found on YouTube, iPhone, are extremely helpful. There are dozens to choose from. Find a speaker you like (I found Michael Sealy, Australian) and a topic that is really helpful.... Anxiety, sleep, etc. I was listening to one every night before going to sleep, and eventually, it put me to sleep. And if I woke up in the middle of the night, I just listened to another one.

Just like one does with a little child, afraid of going to sleep......one needs to chase away the "demons" that interfere with your well-being.. I'm not saying it's easy. It's probably the most difficult thing I've ever done....and I keep doing it because just when I think I have a handle on it.....those disruptive, anxiety-producing thoughts just crawl back in.

I'm Jewish, and never have been particularly "religious" in practice", but during the late night, when I couldn't sleep, I started to read the "Torah (First five books of the Old Testament) portion of the week.. and the interpretation from a local Rabbi. That was something that I only did at Temple services. Surprisingly, ironically? I often found that the topic in the Torah helped me answer/or reflected feelings I was having. Like being hopeless, life was uninspiring, I felt that I had no "Higher Power, That no one cared, That life alone was getting me down..... Little by little, I started to look out of my own thoughts, to find answers to my own issues... Never a "holy roller", I now have new respect for looking for answers in the Bible.....Old phrases rang true, Give it up... "to God", You're not alone, started to have new meaning... The next thing I did, late at night, when I couldn't sleep, was find soothing music......religious or otherwise, that emotionally took me to a better place. Versions of Bridge over troubled water did it for me, big time. We all have to find our own solutions......but try not to negate what others suggest until you try them.... You never know.

Best regards to all..

Marsha.

It's Marsha again.....so sorry for the extremely long post.... This is for Susie, 1968.... About feeling like ripping off your wafer, and going without....

You are not alone!!!! I've had the feeling....and so have many others.... When it happens, I make the decision to stay home for awhile.....take a shower without my pouch system on.....dry off....put towels on my bed.....and take along a box of tissues and toilet paper. I've spent hours.....just lying there....exposed...and enjoyed every minute of it. Sometimes, I'm very active, and other times not so much. It's like leaving a baby's bare irritated bottom, exposed to air.... I don't, but I know people who take baths without their pouch on, just to feel the hot water against their ostomy, AND THE SKIN AROUND IT. I'm afraid (Personally) of sitting in dirty water, since I get vaginal infections very easily, but remember, there is no right or wrong.

Try anything that makes you feel good... Marsha

Hello Marsha.

Just a brief note to say how much I appreciated your post. You capture the essence of PTSD and the hard personal work that is needed to manage the condition.  I feel sure that people who are going through the same sort of thing will be inspired by your efforts and successes.

Best wishes

Bill

Hi,

I've had a very brief read through the replies, so please correct me if I'm wrong. From what I've seen, all of the suggestions are great, and the obvious physical suggestions have been made, like eating earlier and emptying right before bed. One I didn't see is setting an alarm during the night.

I've had my ileostomy since March and every night I have set an alarm on my phone for about 3-4 hours after I fall asleep. After a little while, I began to subconsciously turn it off in my sleep when it went off, so now I just slide it out of reach before going to sleep. That way I have to be at least semi-conscious to turn it off, and by that time, I will be aware enough to check the bag.

I've only ever had one proper leak which was before I started moving the phone away from my bed before sleeping.

The mental aspect is hard. I went through the same thing. I still do sometimes. Often if I know I am waking up early, I will end up staying up until midnight just because I know that I will be able to get a solid 5-hour sleep rather than having to wake up during the night. I think it's mainly about working out a routine that works for you and giving it a try. That's the only way I managed to get comfortable sleeping. Just remember that they're just bedsheets. Also, realizing that no one outside of your household cares because they don't know that your bag leaked. That mindset works for me, so whatever you can do to make yourself comfortable is all that is important with this.

Good luck with it, I hope you get more comfortable soon.

Hamish

Hi Basegirl, I went through the exact same thing when I first had my surgery. I could not sleep, I cried all of the time, and I just wanted to go back to my healthy life, my old normal. My good friend, who is struggling with a different situation, said normal is overrated! Cheer up... you can do it... What I did to help me was to attend a support group with other ostomates. These veterans of the ostomy were able to provide some helpful information about living life to the fullest with an ostomy. They shared their experience, strength, and hope. The night after the first meeting I attended, I slept the entire evening. I also agree with another response on this post, over time, you become accustomed to your body's natural bowel flow, and you know when to empty and you wake up to do so. I do my best not to eat a super huge meal before I go to bed because I know in several hours, I will need to get up and empty. Give yourself time to heal and get used to life with an ostomy. It will get better and easier. Regarding the leaks, have you tried any of the seals such as Eakins Seal or Adapt Seal? Several of my friends tell me that they work very well with leaks. Take care and keep posting. We are here to help one another. Sincerely, LH

I was waking up every two hours to empty the bag and worried about leaks. Lack of sleep is a health hazard in many ways. Sleep is necessary and important.

One of my doctors came up with a solution for me. I use a two-piece bag. During the day, I use the regular-sized bag. At night, so I can sleep, I use the extra-large, high-output, urostomy bag. Your doctor can justify this for insurance purposes based on health risks from lack of sleep, the risk of depression, danger while driving sleep deprived, etc.

At this point, it only leaks when I go one day too long before changing it :) And then, I usually catch it before it is too messy and change it.

Over time, you will also develop a sense during the night for when you need to wake up and empty the bag. In the meantime, if you are concerned, when you go to bed, put a piece of paper towel around the area where it usually leaks to absorb it and prevent messes.

When I get worried during sleep, I put my finger on the skin barrier. If it is wet, I'll open my eyes and check it out. If dry, I keep sleeping. I'll also feel the bag to check how full it is. If very full or gassy, I will get up to empty it and go back to sleep.

I experimented a long time to find a system that works well for me. Each company will send 3-4 days of samples and complete sets of changes.

In my experience, some of the skin barrier flanges are so narrow, they do not hold at night while you are horizontal and the stool cannot as easily flow downward. I have found using a system with a wider flange helps enormously to prevent leaks. I use Convatec, Sur-fit Natura, Moldable, convex. Good luck, dear.

Trust me...it gets better as you go along. I suffered with horrendous anxiety for the first few months. Luckily, I have a great VA doctor and we found a medication that helps. This has subsided greatly. I was worried about my bag too. I felt like I smelled and worried about going out in public but I learned that people really didn't notice at all. I also spritz a little nice smelling body spray on the cloth side of the bag and that helps a lot. You will get used to things as you go along. Don't suffer not sleeping. It is important to get enough sleep so you can heal both physically and mentally. Speak with your doctor about this. I use a medication called Remelaton. It acts much like melatonin. It has helped me a great deal with my insomnia after my emergency surgery. I still have some sleep issues but it is a lot better than it was. Good luck to you!!

I too have a hard time sleeping all night, but I find myself checking my bag throughout the night and have had to empty it at times, especially if I ate dinner late or drank too many liquids. It was really bad at first, but with time and learning some good advice on here, you will worry less and get better sleep.