Coping | Ostomy
Jennifer, one of the GWGs in the Facebook Forum, shared her story of some incredible friends and support she received from her best friends.
“I’ve been friends with these 3 girls since 1st grade. The other 2 are the older sisters of my friends. Not that we’re counting, but that’s over 30 years that I’ve known and loved these women.
We have been through each other’s lives through every up and down. When I got sick, they were some of my biggest supporters, including their older siblings and parents. They threw me “Jenn’s Big Blow Out” aka: my colon’s going away party. The signs says “Bye Colon, We are Tired of Your Shit” and “Jenn, You’ve got this in the bag.”
This is true friends. They never once laughed at me but we laughed all day!!
Since I was diagnosed with UC 2.5 years ago, they have been by my side through everything. Like the birthday that I was flaring so bad I couldn’t eat anything, they put a candle in a slide of bread and a banana. When I couldn’t leave the house for months, they came to my house every week for girl’s night. And when I was in the hospital, they were right there by my side.
Right now I’m struggling with the ostomy bag. It’s not sticking and very painful, and every morning I have a text to ask if my bag lasted through the night. They really love me.
I’m so blessed in my life. So many people say that you know who your true friends are when you go through tough times. I would absolutely agree with that, but I didn’t need a tough time to know that these ladies would never let me down. This is just a way to highlight how amazing they are.” – Jennifer O.
Have you had a poop party? Received some awesome support from your friends? Share your story with Mandy, mandy@girlswithguts.org, to be featured on our blog!
Hello Jennifer O,
I hope all is well as can be. I’ve read your story and wanted to offer some advice if you haven’t already had this advice. Try a skin barrier to help with the bag sticking. I also had problems with bags no sealing good and lots and lots of leaking. I use a skin barrier along with a wafer with a dip in it. The dip will help bring your stomach out more to possibly help with less to no leaks. I hope this helps and if you’ve had this advice already I hope it has helped. All the best.
From one ostomy girl to another – Debbie S
Hi Jenn, I’ve had Crohn’s for 20+ years and am only 40. I’ve had an “temporary” ileostomy for nearly ten of those years, had an eight year break and now have a colostomy. Having had both ends of the bags, and still have my colon because my disease is strictly pereanal and my ostomies are to give my body and five open and still after 20 years poo draining fistulas a break, they didn’t get the message and since I have a loop colostomy poo still gets by and when my gut particularly hates me my bum and fistulas are working overtime!
Anyway, I read your post and might I suggest Coloplast Sensura Mio products. I’ve tried EVERYTHING and I legit mean everything. I’m allergic to Holister adhesive so I was ever so thrilled that they slapped a Hollister system on me straight out of surgery 2 years ago. Thanks geniuses for the broken apart & blistered skin!!
Never mind my rambling. Sorry. Long day.
Look, try Coloplast Sensura Mio because they move with your skin so beautifully well and fit every stretch mark, scar, old incision, etc… once I switched I stopped having nightly leaks. My poor teenagers 14 and 17 at the time) had to bring me paper towels all night one night because my skin was so broken apart and raw with blood I couldnt bear the pain of any pouch and even lidocaine gel burned. So my kiddos brought me paper towels and my bestest friend came over with a jumbo pack of the best “Basic B” paper towels…Viva!!
Leaking is sadly a part of it until your skin settles. But try these tricks: a moldable ring for the base around the stoma cutout, barrier paste isn’t so bad, and coloplast barrier wipes are a must!! Try iodine on the skin to help it heal and protect from poo.
Finally, a hernia belt to keep you stoma protruding and not sinking back into your gut and putting out acidically abrasive liquid tar onto your skin and not in your bag. If your bum is spasming and nothing coming out there’s a blood pressure med called nifedipine. The pharmacy can compound it into a cream that you apply and the bum stops spasming, and if you’re like me when my bum spasms, my stoma scrunches down and tries to put out something.
PLEASE if you read this, do feel free to email me directly and any time. You’re in my thoughts.
Kate
Girlluvstorun@gmail.com
Hi Jenn, I love that your friends threw you a party! That is awesome! and what a great picture of all of you; you guys even got the littles in on it!
Love and hugs Sister Friend,
Ronda S
Thank you!! I feel like I’ve tried everything! Although I’m still new. I saw an ostomy nurse (an angel from heaven) and she helped get a bag to stick. I’m using Hollister now with a ring and it’s sticking but I’ve had two blow outs if I go to day 3 So I’m gonna try to change day 2 this week. What’s a Skin barrier? Like the spray stuff or something else. Thank you!!
A skin barrier is typically wipes. I use Coloplast Skin Barrier wipes (blue boxes). I use two, wipe my skin all the way around the stoma up to the edges and the space where the base will stick. I fan the skin for 20 seconds with the base so that the skin is sticky when I place the base onto it (your fingers will be sticky as well from touching the wipes, but it washes off easily enough). The barrier is a non-visible layer that protects the skin from the leaks. You’ll still need to change the bag as soon as a leak starts but it gives your skin that little bit of protection.