Seeking Advice: Managing My Daughter's Frequent Bag Leaks

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276
amandadh90
Jul 02, 2024 10:14 am

I am brand new to this; I literally just made my account, so please be patient with me! Lol

So I have a beautiful, goofy, smart, incredible daughter who just turned 8 years old. She was born with an extremely rare birth defect (2 in 1 million babies are born with it on average); the cause is unknown. I won't bore you with all of the details, but a quick, very basic idea of how she was born is that her bladder, some bowel, and some intestine were outside of her body. She was born with no anus, no vaginal opening or external female anatomy, no urethra, a tethered spinal cord, pubic bone formed incorrectly, etc. There is so much more to it, but that's the basic important parts. She has had 5 surgeries in total; at 1.5 days old, during her very first surgery, her doctor made her adorable little stoma, and she came home with her bladder outside of her body still for 3 months. They corrected that surgically at 3 months; however, she is still wearing pull-ups now because she is incontinent. There are surgical options to change this, but she needs to be a little older and much more self-sufficient before we can explore those options. Hopefully, that very basic history makes sense and is enough to give everyone a little bit of a foundation to go off of.

Which leads me to... the issue we are running into now, which is that just over the last 3 to 4 months or so, we cannot keep a bag on her for longer than 24 hours at most; typically, it's closer to 8 or 12 hours. So we are changing it 2 to 4 times a day on average right now. Every once in a while, we will get a bag to last a full day but never much longer than that. Before 4 months or so ago, though, we could go 2 to 3 days without changing, probably longer, but we always change her entire setup during showers, so we don't really know how long they would last past that. The biggest change since all of this started is that she has gone through a noticeable growth spurt, and that the weather has gotten a little bit warmer. Otherwise, nothing else has really changed! She isn't considerably more active or anything like that, no new products, no diet or output changes, and no changes to application or how everything is taken care of while she is wearing it.

Her father, stepmom, and I have tried so many different things at this point, and nothing has made much of a difference, which is why I am even here!

If you have a kiddo with a colostomy or ileostomy (which is what my daughter has), or even if you don't and you have some advice on what may help us, I would so very much appreciate it all! Thank you!!!

Kas
Jul 02, 2024 11:41 am

I am so sorry your daughter had to endure that at such a young age.

I have a colostomy but no experience with children who have ostomies. However, I'm wondering if due to her recent growth spurt, her body has changed enough to require a change in the size of her baseplate/bags. Just a thought.

Hang out long enough and someone with more knowledge on the subject will chime in.

Take care

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ron in mich
Jul 02, 2024 12:45 pm

Hi Mom, I agree with Kas. Also, are you cutting the hole in the wafer for the size of her stoma, and do you use a seal or ring around the stoma with the wafer on top of that? Good luck.

HenryM
Jul 02, 2024 12:48 pm

My heart goes out to your sweet little girl.  I've had my share of physical suffering, but your experience certainly puts it all in perspective.  What doesn't kill us makes us stronger, someone said.  My only advice re the issue of leakage and inability to keep a bag on longer would be to suggest a sit down with an ostomy nurse who could SEE your daughter and assess her situation up close and personal.  I don't feel comfortable advising you long distance without actually eying the problem.  An experienced ostomy nurse would also have familiarity with a variety of product options from which to choose.  I personally use Hollister products, but everyone has their own favorites.  There ought to be an answer to your present dilemma, so hang in there, and tell your daughter that she is my new best friend.  

Ben38
Jul 02, 2024 3:17 pm

I think you need to speak to an ostomy nurse or get some samples of another brand of bag to try. A short-term solution might be worth trying a roll-on deodorant on the skin around the stoma. If it was from the weather being warmer, it can help the flange stick better.

 
Words of Encouragement from Ostomy Advocates I Hollister
Play
IGGIE
Jul 02, 2024 3:23 pm

G-Day Amanda, I agree with Kas, as she gets older the fitting of the bag will change more often with a young growing girl than an adult, and you have to keep on top of all the changes. Does she use a base with a convex or not? You mention you change after a shower; do you make sure that she is 100% dry before fitting the base? My stoma has gone from 29mm down to 20mm, and the changes were slow, so I had to make small adjustments to the size of the hole, and I hope you're using a sealing ring as well before the base. The hole in the base should be a little bigger than the stoma, but the sealing ring should be a snug fit. Amanda, take your precious little girl to see the Stoma Nurse, and we will all send good vibes your way. Regards, IGGIE

AlexT
Jul 02, 2024 4:20 pm

What products are you using now?

xnine
Jul 02, 2024 4:51 pm

What process are you doing now?

I use a remover wipe, wash the clean area, apply skin prep, make sure everything is dry, apply the ring, apply the flange (my flange fits me without cutting), and apply the bag. I steam roll the ring on, once the ring is in place, place the ring backing on the ring and use an empty tape spool as a steam roller and go around the ring. Others use heat to ensure a good seal. I also use flange extenders. I put my belt on and wrap. I am done. My skin is smooth around my stoma, with no creases or dips to deal with.

Good luck with what you try.

 

Panko
Jul 02, 2024 6:19 pm

Brava XL Tape Extenders by Coloplast!

I don't leave home without them! 😊

JD
Jul 02, 2024 7:09 pm

+1 on comments from others about an experienced ostomy nurse - they make a world of difference. As mine is ~90 minutes away, I made do with a ton of pictures, and that helped her see things I could not and identify areas for improvement.

 

 

Morning glory
Jul 02, 2024 8:00 pm

You definitely need to use the stoma nurse. I am in agreement with the others. Clean with a soap with no moisturizer in it. Make sure the area is completely dry. Are you using a convex wafer? If not, please try it. A hairdryer is a game changer; just be careful that it is on a low temperature for your little one. I also want to welcome you to the site. Everyone here cares. Prayers for you and your child. God bless and hugs.

DavidK
Jul 02, 2024 8:06 pm

Sounds like you have endured a lot and you have an amazing little person there.

Agree with others recommending seeing an ostomy nurse. In my experience, they are excellent and seem to have a plan for every possible scenario.

TerryLT
Jul 02, 2024 9:11 pm

Hi Amanda, I can only imagine what you and your daughter are dealing with, and my heart goes out to you. You have received lots of good advice here. I agree that your daughter's growth spurt could have impacted the appliance's viability. I would suggest you try different setups, i.e., not just one brand, or even combinations of products, like wearing a Hollister pouch with a barrier ring from another company, and vice versa. Everyone is different and finding out what works best for your daughter could make a huge difference. It can take time, but it is worth it. An ostomy nurse's advice is a great idea, but trying things out is the only way to know for sure. I was sent home with Coloplast products, but discovered that Hollister works much better for me. All the best of luck.

Terry

infinitycastle52777
Jul 03, 2024 12:01 am

If you don't use a ring, you might try that. It will give you a better seal around the stoma. Also, you can try pouch extender strips to see if that helps keep the wafer down.

Axl
Jul 03, 2024 4:24 am

Hello Amanda

You have received all the usual good sound advice from the forum as expected. When you locate a stoma nurse, if you are not satisfied with the outcome, seek another until you are satisfied. Your daughter is entitled to a good result.

Axl

Jayne
Jul 03, 2024 4:23 pm

Hello

I am no stoma nurse, medic, or indeed mother...

So I am reticent, for I am probably not equipped to add further to what has been said by others...

 

I note your daughter is wearing 'Pull-Ups'.

Could it be that the warmer weather alone, coupled with the pull-ups, results in a more moist environment? Or are pull-ups absorbent but maybe holding moisture/bacteria, and perhaps your daughter, bless her, is finding new sensitivities to one or all products at present?

Couple the above with a growth spurt, then indeed this is an extra perspective.

A] In my own experience of extremely exacerbated skin, I personally found that the Coloplast manufacturer is the ONLY manufacturer on the market which has zinc within its base plate/wafer part of their products [suggest checking with their own research chemist on staff whether all Coloplast products still contain zinc... [zinc works where extreme sensitivity causes issues]...

 

B] Even a minute regular change in cutting of the hole for the stoma [i.e., between two sizes can make a huge difference to seepage at the stoma/appliance point. Hence, checking at points of change [different times of day/diet can also result in change of retracted [i.e., by slouching the stoma so it is at its firmest size] - so just checking by KEEPING THE BACKING PAPERS of newly peeled appliances, to aid a careful assessment of the size of hole which may be most efficacious at any one time, may help to ever change the size of cut hole as necessary.

 

Heartfelt thoughts positively sent...

You are wonderful folk and have a very special young person...

Team support too is important, and I join all others in sending my heartfelt appreciation of the challenges

AND THE REWARDS such a young brave person brings.

 

Special thoughts wing their way to all four of you

 

xx

 

Jayne

warrior
Jul 03, 2024 9:14 pm

Welcome, Amanda.

Good to have you here.

Within 24 hours of your post, you have received a wealth of good, solid advice, and more is coming, I am sure.

There is a new mom on here with an infant baby who wrote in. The baby is fitted with a bag.

I think it's an ileostomy. I think the baby was born without an intestine. Her name/handle escapes me.

So stay tuned and please check in with updates as you can tell many here have unanswered questions for you. It's fine. It's only been 24 hours. We wait patiently.

I won't repeat what's been advised by others, but I had not seen "a belt or wrap" mentioned. If it has been mentioned, my apologies. I saw the extender mentioned, but nothing about the security an appliance belt can offer. It's a valuable addition to keeping the appliance pressed to the stomach.

You also mentioned a growth spurt. Big factor. And weather, big factor.

Activities also a big factor.

You also mentioned that after showering is when you apply the new appliance.

I'm thinking moisture here is a factor too. But you've been doing it like this for years, I assume, so it may not be an issue.

We are here. Just ask. The more details, the better.

Thanks and blessings.

 

 

aTraveler
Jul 10, 2024 10:11 pm

Try a moldable barrier from ConvaTec or Coloplast along with a barrier ring and barrier extenders. You can get free samples from Coloplast and ConvaTec. As Warrior said, definitely get an ostomy belt. The manufacturers make belts for their appliances.

IGGIE
Jul 11, 2024 3:05 pm

I wish Amanda would get back and let us know the outcome. IGGIE

warrior
Jul 14, 2024 5:28 am
Reply to IGGIE

Yaa.  All in good time. She busy.