07-27-2010, 10:54 PM   #1
Jer's Girl
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Join Date: Oct 2009
Location: Albuqerque, New Mexico
A bit down

My Dr called today and after talking to my surgeon he has decided that he wants me to keep the stoma for at least another three months. The last I heard, I was getting my reversal in August.

I know it's not a big deal in the grand scheme of things, but I have been having a lot of leaks and other problems lately and was thinking of the reversal as the light at the end of the tunnel. I would be a lot less depressed if I could at least keep the same bag on for more than a day and a half without it coming off or leaking.
07-27-2010, 11:14 PM   #2
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Awwww, I'm so sorry to hear that, how disappointing for you.

Did he say why he wants to keep it longer?

Take care,
Mum of 2 kids with Crohn's.
07-27-2010, 11:28 PM   #3
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Join Date: Nov 2008
aww sorry hun =/

same question as dusty, what was the reasoning for this? just more time for healing?

hmmm have you experimented with diff products? seen a stoma nurse? you may have been posting about this issue already so sorry if these are repetitive questions...
It just takes some time,
little girl, you're in the middle of the ride.
Everything, everything will be just fine,
Everything, everything will be alright.

<3 Mik
07-27-2010, 11:31 PM   #4
Jeff D.
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Join Date: Apr 2006
Awe, I'm sorry. I forgot what brand you are using. I just tried convatec and they are awesome some maybe you could try those out and see if that could help you with the leaking. Maybe a convex wafer would help you out. I'm so sorry to hear that you have to keep it on for 3 more months but try more products to see if they can work. Let me know if you ever want to chat. I'm praying for you.
07-27-2010, 11:46 PM   #5
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Location: Florida
Aww, sorry to hear that hon. Hopefully the suggestions by the others will help and the three months will pass right on by! Hugs to you!
Toni, Diagnosed in September '08
Specific Carbohydrate diet
Currently on:
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09/2011 - Draining an Abcess the size of a lemon!
10/2011 - Same abcess, different approach this time, open incision!

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07-28-2010, 12:20 AM   #6
Jer's Girl
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Thank you so much guys! Your support, as always, means so much!

I have seen stoma nurses, and I seem to be doing all the right things so i don't know what the deal is.

I read an earlier post where you suggested convatec Jeff, so I ordered them a few days ago. Thanks for the recommendation! I have used Hollister in the past and am using coloplast now.

Everything else about the ostomy has been great, I just really have a lot of problems with leaking. I have never been able to go more than two days without a leak.

I have tried lots of different methods, but here is what I am doing now in case this helps anyone identify what I am doing wrong.

First, I put some stoma paste around the opening of the bag. I make the bag opening slightly larger than the stoma so that it can expand. Then I clean the stoma area with ether dial soap or just water (nether method seems to be better than the other). Next I use a barrier wipe to protect the area. I then use the stoma powder, knock off the excess powder, then go for another round of the barrier wipe. If I do not do this, my skin gets very raw. This is not the problem, as since I have started doing this method of layering it has helped the bags stick for a little bit longer since it is no longer going on top of raw skin. Lastly, I put the bag on and apply pressure for at least ten minutes.

I have also used the barrier rings, but my bag just comes off immediately.

My husband thinks that I press too hard around the stoma to get a good seal with the paste. What do you think?

As far as pants go, how do you feel about fit? Do you try to wear high rise so that it covers the stoma and doesn't cut off the bag, or is it better to wear low rise and leave the stoma uncovered?

Honestly, if I can go even three whole days without having to change my bag I wont mind keeping this stoma a little longer at all. The leaking is the only thing that really bothers me. I had seven leaks in one day two days before my wedding! It was the worst day ever. I was just sitting around naked in my room by the end so that no pressure was on my stoma, but it still kept happening. My skin was so raw, which only made it happen more.

Thanks again guys! Hope you all are well and living life to the fullest stoma or no!
07-28-2010, 12:31 AM   #7
Jeff D.
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Join Date: Apr 2006
I really wonder if you need a convex wafer. Are you using a 1 piece or a two piece?

The way I've been doing that hasn't given me any leaks is to put a bead of paste around the wafer. Then I press it on with a medium pressure for a minute or so. Then I attach the bag and press with less pressure around. Finally, I put the tape on my skin. This seems to have worked for me the best.

Honestly the convatec has been the best for me with the moldable wafer. When I cut the wafer it always caused me troubles because I could never get it right. After watching the short convatec video which I could tell you in a matter of a few words, mold it to fit your stoma perfectly and if you rolled it a little too much you can easily roll it back to fit. Finally, you press the rolled part down and it seals it. It works perfectly. I honestly don't think I even need the paste but I'm going to continue to use it just for safety. I've also felt the convatec has been easier on my skin and as long as I soak or get the wafer really wet I can get it off very easily.

Take care
07-28-2010, 09:44 AM   #8
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Location: New Jersey
For the barrier rings, have you tried both Eakin and Hollister Adapt? I use the adapt and love them. I have not tried the Eakin, but I hear they are sticker (and harder to remove when changing) Using the rings is probably a similar concept to the Convatec moldable. I kinda mold my ring around the stoma and push it on.

I don't use paste so can't help there. But I have heard it's not to be used as adhesive, just as a sort of caulk for uneven areas on the skin.

Putting the stoma powder on after the barrier wipe might be overkill. It's just going on a layer of "plastic" at that point. I always think of the "less is more" saying.

I'm sorry you're having these leaks, I know they must drive you nuts!
Do you post on the UOAA forum? If you post your story there too, you'll probably get tons of help.
Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.

Last edited by CDDad; 07-28-2010 at 12:39 PM.
07-28-2010, 10:41 AM   #9
Jer's Girl
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Thanks guys. I'll think about all of your advice.
07-28-2010, 08:35 PM   #10
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Join Date: Jan 2010
I saw my WOC nurse yesterday and as joe said above, her msg to me was 'less is more', so maybe putting the barrier twice is a step you can avoid.
I am lucky as I have never had a leak. I clean the area well and make sure its dry. I apply 3m Cavillion wife for sensitive skin and I put a barrier rinpg, making sure it "seat secure" I apply the appliance on and press on it for a minute around the ring to make sure its seats right and if necessary I put powder in the gap.

Do you have access to a WOC nurse? It can be a HUGE help for you.

Let us know how it goes
-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
07-28-2010, 09:27 PM   #11
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sorry to hear your having a hard time and a depressing day. I am sure everyone here will try to make you feel better...
Grandmother of Madasin
Madasin was diagnosed at age 22 months old
with UC
07-28-2010, 09:47 PM   #12
Jer's Girl
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thanks for the support and advice guys!

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