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Hey gang!

Just need to vent. Had a bad flange day! Normally, I use Convetec wafers and bags. I absolutely love them. You don't have to cut the hole out for you stoma, just mould it to fit. The adhesive is just perfect, and NEVER falls off or leaks. The bags are comfortable, and the opening is a breeze. So, the problem? My nurse ordered a two month supply, and they sent urostomy bags instead! SO, I had no choice but to use the abundance of Coloplast wafers and bags the hospital gave me. I've hated them since day one! The adhesive is terrible, and leaks almost every time, and the bags are too thin, with a crappy opening (pardon the pun). With my beloved Convetec products, I completely forget I even have an ileostomy, not so much with Coloplast, case and point. Today we decided to head to the water front as its the festival of tall ships, which we see every year (really cool to see those old sailing ships). I knew I was in trouble when I got out of the car, it was literally 108 with the humidity, making me sweat like crazy. I dropped Freddy and his mom off at the ferry docks and went to find parking. Thank god for our handicap parking pass, I found a spot only a 20 minute walk to the lake (it's only a 40 minute walk to our apartment!). There are now over 6 million people is this rapidly expanding city (Toronto), and I swear to god they ALL decided to come see the ships as well! So, after fighting with the traffic, and walking 20 minutes in 108 degree heat, I was completely drenched in sweat, and then I feel something not good, something warm leaking on my abdomen, and it wasn't the sweat! The wafer started to leak! Grrrrrr! No matter how much I sweat, the Convetec wafers NEVER leak, but Coloplast just peels right off, guess it's their way of making sure you have to buy more!

So, I look down, just before the damn burst, held it against my skin, walked all the way back to the car, and drove back home (left Freddy and his mom there, didn't want to spoil their day). I do carry supples with me, but I was no where near a bathroom, it was faster to walk back to the car. I get home, and get in the elevator (I park on the B2 level, and live on the 20th floor). Normally, it never stops at the ground level (the main lobby), but the one time I'm leaking, the door opens, and at least 15 people cram in, figures! Just as the door was closing, this fricking idiot runs into the elevator, squeezing his way in, knocking my hand off my abdomen, and in turn, knocking off my flange. I was SO P.O'd at this idiot, he didn't even apologize for his very rude actions. Now that the flange is totally fallen off, my nearly full bag spewed its contents all over my new shorts, leg, shoes, and the elevator floor! Everyone just backed away as if I pulled a gun on them or something. The one kid with us, about 10, screams "GROSS!!!!!", and his mom asks "what's wrong with you, need a diaper?" To which I responded "what's wrong with you, need a brain?". I was so angry and embarrassed, I wanted to die! And naturally, they were all going to the 25th floor, so there was no escape as I could get near the button panel. I've never been so happy to reach my floor, and who ever said Torononians are friendly obviously have never been here, these people were downright cruel and rude! Just before I got off, I yelled "I have an ileostomy, but I'm guessing you're all too stupid to know what that is!" (When I get mad, I get a tad defensive, they had it coming!).

I finally get to my apartment, and jump into the shower with my now soiled clothes on, and feel like crying, as you all know, it can be so frustrating sometimes not having control of your bowels. I finish showering, dry off, and put a new wafer and bag on, and not two hours go by, and the bag started leaking! The Velcro fastener had fallen off! Seriously? They aren't cheap, I just thank god everything is free for me (thankfully, my work covers all ostomy supplies 100%), you'd think they'd make a better product. But then again, maybe it's just me, everyone is very different. Could be my body chemistry and the shape of my stomal area that makes it leak, who knows? I get my delivery of my much loved Convetec supplies hopefully tomorrow, I'm working all week, don't want it falling off in front of a patient! Anyone else have a problem with Coloplast, or is it just me? Thanks for letting me vent!

Eric Razzer
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First, congratulations for venturing out there - you never know until you try. Luckily, when I experienced my leakage outside of the comfort of my home, I was with my daughters and close to my car.

Next time (hopefully there won't be a next time), use surgical tape all around the exterior of the bag. This is extra added insurance that it will stay sealed to the skin. No guarantee, but it might help.
Never tried Convetec. I use Coloplast one piece and have had good results, sweat and all. I do use an additional seal, like Eikens. I also use the Brava seals which are half round and go on the outside of the flange and onto the skin kind of like tape, but much better and really "clean" looking. They not only hold the pouch on but add some extra leak protection.I haven't had any pouch failures with this system. I did have a minor leak which never got outside the Brava seal that was caused(I believe) by gas build up while I slept solidly, the filters dont work after the first 4 to 24 hrs but I dont think any of them work well with an ileo.
I use Coloplast Sensura two piece and found it worked much better than the Convatec did for me. I do agree that the more you sweat the faster the seal breaks down though. I had a hard time with Convatec's moldable wafers not leaking all the time. With my Coloplast I change twice a week normally and three times under high moisture conditions. I think you are right it just depends on your body chemistry, shape of your body where you stoma is, output etc. I am so sorry thing happened to you! I know how you must have felt.
Wow! You guys have my utmost respect and awe. You seem to have been able to sort through all the different products and find the "one" system that works best with your specific ostomy. I guess it is quite a lot like the j-pouch, no real rules, just guidelines, and it all boils down to individual tastes, tolerances, and fit.

I only hope that if and when my time comes when I need an ostomy, I can adapt as well! You guys give me hope and reduce my fear....

Thanks!

Jan Smiler
I love my coloplast sensura setup. Sorry it didn't work for you eric. every manufactures' adhesives seem to be so different. So finding one that works for you, sticks, doesn't cause allergic reactions is so important. Let alone hoping the overall system is one you are happy with - due to active lifestyle, size of bags, cloth backing, how you were your clothes, etc..

It is difficult as we are sent out off those hospitals with whatever preferred supplies the hospitals use, but then it is up to each of us individually to hunt around and figure out what might work for them. Ostomy nurses help a bit, but they don't seem to have the breadth either or time to detail out what might not just work but also be comfortable for each patient.

I was so freaked when I went home with my first ileo and it was a normal size long bag transparent, with a clip, and was making my skin itch nonstop. I thought - this is just a ziploc bag. I just couldn't get over it.

I am a petite woman and the darn thing hung to the middle of my thigh. Plus I had no desire to view its contents. One ostomy nurse suggested I try a few different ones and wow.. once I found cloth backed, wide opening, secure for me, midi size coloplast.. I became ready to accept my ileostomy. So much of how we view our ileostomies depends on us having durable, reliable, comfortable systems that work for us.

Now after four ileos, I feel I have quite a depth of knowledge in supplies and know I will be able to find something that works if I develop a little glitch in my system.
More sage wisdom passed along by Liz11. . . Maybe you should start a consulting business for people transitioning to life with an ileo. Your description of what goes on when sent home from the hospital matches my own experience exactly, yet it didn't occur to me to search beyond Hollister. Sounds like Coloplast could be a good fit. I am going to be on the phone Monday morning to Coloplast and others, plus I need to see if I am restricted by what my insurance covers.

Thanks!

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