Leak Troubles: Need Support

Hi Pammer,
I know how demoralizing it feels. I had gotten to 3-4 days wear time when I got a sore. Then it got infected and now the WOCN has me on different bags to relieve the pressure on the sore that is right up against my stoma. So there are days that I have had to change my bag 2-3 times...sigh.
One of the things that really helps control the damage at night is to use an old sheet doubled, then doubled again and laid across the bed like a draw sheet. Specifically across the area your mid-section crosses. That way if I have a mess I don't have to change the whole bed. Wearing a cotton night shirt also helps control the mess as a first layer of defense. All the other tips are good too so I won't repeat those.
I also find that the Coloplast Brava paste gives a better seal if used around the stoma opening edge. Have you tried wearing a belt for added snugness?
I drink water every time I empty my bag during the night. That way I will need to pee periodically and usually catch any leak before it gets too bad. Also, you will get to the point that you will, as a form of habit, lightly run your hand around the edge of your pouch while in bed. I instantly wake if I encounter dampness.
It will get better. You will get the hang of it, with the right product for you. It can wear you down. I KNOW! I find that keeping a sense of humor and positive attitude helps a lot. You are not your leaks, nor your stoma, they are just things to be dealt with. Do something nice for yourself. You deserve it. You are working through some tough stuff.....but you will become empowered. I know it doesn't feel like it when you are sleep deprived....but you WILL get through this. We are here for you.
BIG HUG!
L

Hi, I wanted to list a few items that have worked for me with no leaking.

I have an ostomy and ileostomy for 1 year now, and I had a lot of leaks in the beginning. I also have extra supplies I'm willing to donate; you'll just have to pay the shipping if anyone needs a little help with supplies. If you're asking why, it's because someone helped me. Hugs.


1. Securi-T 7502134 1 3/4 in 45mm urine bag

2. Securi-T 7832134 - the backing for this bag, no leaks at all and they really stick

3. Securi-T 7212134 1 3/4 in 45 mm for poo poo bag

4. Securi-T 7804134 - works really well with this bag

5. Securi-T No Sting wipes barrier protective dressing genairex 202400 - box of 20

6. Torbot Group - Skin Tac liquid adhesive latex-free 8 fluid ounces - This works very well with any ostomy or ileostomy appliances. I love it; it dries fast.


I hope this helps you. I get my supplies from EDGEPARK.COM. I added the item number so you can search if you or anyone needs any help, just send me a message. I'll do my best to answer.

Hammer, I have been using Hollister products for the past 6 months. At the beginning and even now, my worst fear is "springing" a leak. Thankfully, I have had no major leaks to date. I have a colostomy, so my discharge is more solidified than other ostomies. It is important that you consistently monitor/measure the size of your stoma and adjust accordingly. Due to my body shape, I use adapt barrier seals in conjunction with a 1-piece convex drainable pouch. I've tried Eakin seals, but I find this product doesn't work as well for me. Obviously, the key to stopping leakage is a positive seal, and therefore, my pouches also have an extra layer of tape around the pouch where it sticks onto my stomach. During bag changes, I ensure the area around the stoma is clean of all moisture and glue residue (using proper glue remover). I use stoma powder and then a skin barrier that helps the apparatus stick....once the bag is in place, I use a heating pad (with light pressure) on the area while lying down for about 5 minutes to ensure a positive seal. The heating pad is just warm. So far, so good. I hope this helps in some way....

Kolan

Sorry to hear that, I won't repeat the good advice already given but might guide you more towards prevention rather than reaction (post problem).

Here are some questions:

How often does this happen? Several times a month or once a year? What is your "acceptable" level of "failure" on this?

Is there a pattern that keeps happening? Is it food related? Is it drink related? Is it activity related? Is it related to the condition of your appliance prior to you going to bed? Is it related to the amount of sleep (or lack)?

Have you tried monitoring your quality of sleep with something like a "Fitbit Flex"? I know for me personally, after many years I became very aware of the condition of my appliance whether I was awake or asleep.

Also, try to see if there is a pattern to the "contents" of the bag. Gas, solids, liquids, as well as the cause of the leakage (barrier related, tape related, or seal related to a two-piece). If it's seal related, make sure there isn't residue in the seal part which prevents the two pieces from "clicking" together firmly all around.

Lastly, do you only experience this type of appliance failure when sleeping or has it happened when you're in your daily activities?

Just some ideas to think about how to isolate the problem.

-Wesley

Hi Pam, my suggestion would be the same to change other products.

I have tried at least ten different products before I found one that lasts for years. I think a stoma guard also helps.

Good luck.

MettaJo

Pammer, it has been awhile since you wrote about your leak issue. How is it going? I have some notes on leaks that I am attaching here.

Here are some ideas in the area of skin preparation, wafer products, and lifestyle. I also added a section on fashion (to benefit one of your more recent posts):

SKIN - don't use a moisturizing soap. If you cannot find one that suits you (Dial is good; Ivory may be good), try no soap at all - just as an experiment. You could also rub skin with degreaser or witch hazel.

PRODUCTS - a few things you could try:

Convex wafer - if your stoma is recessed (if your skin goes "in" around your stoma).

Seals (like Eakin) that you mold to your skin. I put a full ring around the hole of the wafer (my skin dips in around the stoma) PLUS a second layer elsewhere where my skin creases and dips. In other words, you have to mold that stuff to the shape of your skin. You don't have to go crazy, but put some seal material in the recessed areas. Paste, in my experience, dries hard and will not work as well.

Stoma collar - see YouTube video (https://www.youtube.com/watch?v=XjZPaUiNyck). I don't know anything about this, but it is something to look at and consider if it might work for you.

Stoma seal (very interesting) - YouTube video (https://www.youtube.com/watch?v=NHSEIO9s1ZU). Again - I don't know anything about this.

LIFESTYLE - before you go to sleep or go to an important function: don't eat/drink for hours beforehand, empty bag beforehand, take a couple of salt tablets.

FASHION - With the summer coming, I LOVE sun-dresses. Being skinny helps a lot and my bag does not show when it is empty. I also wear leggings with longer blouses over them - I just got a peasant blouse that I love. Also, skirts with elastic waistbands are great because you can check the bag discreetly. There are a lot at Macy's. If you get a puffy one, you can wear a tuck-in blouse. Bathing suits are tough so I use a skirt one, a bloused-over one, or one that is gathered or bunched to the side over my stoma. Bold prints and colors are good, and you can also wear an overshirt or skirt.

Question: Do you have leaks mostly when the output is "thin" like water or "thick" like whipped cream or thicker?

Good luck, Pammers. It seems like you have a lot of support from this site - you are lucky.

Pat

There is no excuse for leaking. I had the same problem and I sampled, sampled, sampled until I found some answers. Still have an occasional leak but they are rare. Don't eat much after 5 pm and try to eat a little fiber. I use Eakin Seals and also use a convex wafer. I also use a belt that keeps my wafer secure. Ostomy Armor is a great product but expensive.

Hi PrimeBoy, thank you for the great post. I completely agree with your entry. Most newbies need a mentor, even temporarily. Trying to figure out the ostomy stuff alone or with a non-ostomate is very frustrating and scary. When I had my surgery last year, I requested from the docs and nurses someone, anyone, with an ostomy to speak meet with me. But because of HIPAA, I was only connected with a wound care nurse. She was very good and kind, but she did not have an ostomy and did not know the day-to-day challenges or, better yet, tricks to make ostomy living less stressful. I wanted someone who was living the life.

Post-surgery, about one month later, I went to my first ostomy meeting and met several people who had ostomies. I really felt much better and more connected. Today, I offer my support to new ostomates. I gave my surgeon and GI permission to give my contact info to those possibly facing ostomy surgery. Like AA and Alanon, those who have walked the path before help those facing this new journey. Support and hope are very empowering. Have a great weekend. Thank you again. LH.

The thing to do is give your surgeon's receptionist a copy of the flyer.

I did, and they were very pleased and now hand them out to all their ostomy patients.

Ed

Hi LadyHope. When my GI broke the news to me that I needed a temporary ostomy, he had me spend a little time with his research assistant who was new personally to the ostomy world. She left me with a strong sense that things would be okay after a little practice. Some of the things we reviewed were definitely not the things males and females discussed in mixed company but we certainly focused on critical issues and procedures. Anyway, after I managed to function pretty well on my own, my GI asked me if I would talk to one of his new patients who is ostomy bound. I did, and I treasure all the help I received and offered to others as we adapted to a new style of during business as ostomy wearers. We must become our brothers' keepers to some degree and give our fellow ostomates the help and support they need to get their lives back on track.

PB

I am married but wear the belt that conceals an ostomy pouch. I wear flesh or black. Some folks find black sexy. It has not hampered my love life at all. If anything, it is better. I do not eat if we are feeling a little frisky or I might eat a few marshmallows to slow me down. Have fun!

Pammer - do you use a convex appliance? I used the regular flat one and kept having leaks, but since I switched to the Coloplast Assura Convex two years ago, I have had almost no problems. I wear it for a whole week (I change whether I need to or not), and it is really comfortable.

Good luck!

Sandi

Dear Pam, I don't know if this will be helpful, this is my first post ever on this site! First off - I changed to Convatech flanges and pouches. Then I recently found out that Hollister makes a barrier ring that is moldable and is 4 inches in diameter. I use it with my Convatech thingies. What a difference! My stomach is lumpy with age and a hernia. I have a deep crevice at my navel. I shape the barrier so it covers that crevice and smoothes out the lumps. The flange goes over that. I tape around the flange with 3M Medipore tape which I get on Amazon. My life has changed! I rarely leak and can sleep through the night. One other thing. Make absolutely sure the pouch is well attached to the flange. I put mine together before I put the flange in place. That way I can feel that there are no loose places. I usually go around two or three times to make sure. I hope this helps a little. PS. I'm 87. I've had my ileostomy for about 5 years.

Don't give up!!! Don't ever give up..... There are a lot of smart people out here. I am in CHI also.. I thought for the longest time I was the only one with this crappy (pardon the pun) problem. Ileostomy for 15 years. And I had a lot of problems in those years. But found through support you can have better days ahead!

Check out www.theamericanostomyclub.com for some good ideas for ostomy problems. It is a collection of problems and solutions for those of us that have issues and don't think there are solutions.

Why do we get topics from 2000 and earlier.... Can't we do something about the dates?

Absolutely beautiful. Happy New Year.
Daniel