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Posted 5/9/2013 5:02 PM (GMT 0)
Alrighty folks... I've been on here before, but really only as a "stalker" of sorts... rarely posting anything, just trying to see if there is something for me to learn.

I have had my ostomy since June of 2001 (Crohn's Disease)- was initially done as a loop to help me get through my pregnancy but when my boy was 8 weeks old, they made it permanent by taking EVERYTHING.  I've been living and dealing with this now for nearly 12 years and it has become second nature and I rarely give too much thought to it.  That is until recently.  I've split with my husband, and am attempting to get back out on the dating scene - which sort of terrifies me. 

 I generally have a good "life span" for my bag - usually 6-7 days... but lately I've had a hand full of "malfunctions" that paralyze me mentally.  When I have these leaks, all I want to do is crawl under a rock and hide from the world.  I feel that I've done a pretty decent job at adapting to the bag over the last 12 years but I think with all the other changes going on in my life, this sort of issue absolutely handicaps me!  So my question is two fold...

1.  I've essentially used the same product since the beginning.  I felt that 'if it isn't broke, don't fix it' but maybe it is a little bit broke and I need to consider changing?  I use a 2 piece, cut -to- fit hollister, a skin prep wipe, with stomaheseive paste and a sure seal over top.  Without the sure seal, these relatively minor malfunctions over the last couple of months would have been absolute catastrophes!!!  Anyway... I see others that use various other things and I'm not sure where to begin.  Should I change EVERYTHING, or just maybe one thing at a time????

2.  How do you guys deal with the depression that comes...?  I'm on a relatively low dose anti-depressant and it has worked for my other issues that I've dealt with, but I feel so utterly LOW when I have leaks/malfunctions it is paralyzing. 

Appreciate the feedback ad again - my apologies for having folks re-post answers that may already be in the forum!!!

Bridget

Posted 5/10/2013 11:13 AM (GMT 0)
I used Coloplast for 35 years and loved it... until this year when I started getting leak after leak (the only reason I can think of is skin changes due to menopause). I started sampling other brands (all manufacturers are more than happy to send out samples for you to try) and after experimenting, reluctantly said goodbye to Coloplast and hello to Dansac (may it bring me another 35 years of confidence).

Visit the various ostomy manufacturer's websites and ask for as many free samples as you can get and try them all out.
Posted 5/10/2013 12:54 PM (GMT 0)
Do you have a WOCN you can visit, perhaps through your surgeon's office? A lot of the time if you go to them on a day when your current appliance is getting close to the end of its lifespan, they can sort of tell which part is about to fail. Not to mention in general they are just really helpful with this stuff!

A few thoughts... Would you be willing to drop back to a shorter wear time until things get sorted? I know plenty of people are successful with weekly changes but twice weekly is what's technically recommended. It's an extra ~20 minutes out of your life in exchange for more piece of mind, right?

Do you use any kind of barrier ring? Seems practically everyone around here does. I like the Hollister Adapt Rings, the other most popular kind are the Eakin Seals from Convatec. You can get samples of both from the manufacturer or sometimes your mail order pharmacy. I get the sense that these have kind of replaced Stomahesive paste as a tool of choice in the past 12 years.

Someone will be along presently to tell you about Friar's Balsam... I've never used it and don't really understand what it is, but I know enough to know it helps with leaks wink

I would definitely stick to changing one thing at a time, unless you're ready to throw out all your supplies!
Posted 5/10/2013 1:57 PM (GMT 0)
hate to tell you this, but your skin can become allergic to something that it was fine with for a long time. With that thought in mind, I would start by trying to change to a wafer with a different type of adhesive. If hollister is like coloplast, there are several different types within the same design. Call hollister and tell them your problem and have them send you samples.

When it leaks can you figure out where it is leaking from, what area around your stoma is leaking. Is it just around the stoma? Or is it where the entire wafer is sticking down. If its just around the stoma, maybe you want to try a different kind of paste or switch to maybe an eakin slim or hollister adapt ring. Or if its just one spot around the stoma, has your body structure changed at all? In that case, if you have a little divet, maybe you need to fill it in with a piece of hollister strip, kind of like filling a patch in your plaster wall!

Wondering if you have changed what you are cleaning your skin with? Maybe just try soap and water.

And if you have any kind of skin reaction from these leaks, you must get that resolved. Go to an ostomy nurse if you need to. But if your skin has a reaction it will only get worse and cause more leaks until you get it resolved.

In the interim, change much more frequently. Try changing every two days for now. You are a seasoned pro, so it probably only takes you less than five minutes to change. Go ahead and do that, until you know things are working great for you again.
keep us posted and we can try to offer more advice.
best wishes

Post Edited (ddd45) : 5/10/2013 8:00:25 AM (GMT-6)

Posted 5/10/2013 4:10 PM (GMT 0)
I wondered if you gained or lost weight in the last little bit, which sounds like an extra stressful time. If your weight changed, that can affect the pouch fit, and if your belly is soft, you might do better with a convex wafer, even if your stoma is long.

Also, is it possible that you got a bad batch of wafers? Were the problematic ones all from the same lot? You might want to just get a different box (you can call the company and get a substitution if need be).

Definitely sounds good to have an ostomy nurse look at things.

As for the emotional component, why do you think the leaks paralyze you, i.e. what does a leak mean to you? Does it make you feel dirty, bring up fears that no one will want to be w/you etc? It's not clear to me from what you wrote.

Nobody likes leaks, of course, but they don't always paralyze. Can you reframe and say that you used the sure seals so avoided any disaster? That was good planning on your part. Now you're asking for help, and you're working to change your system, which is also a move to take care of yourself. You'll work through this. You can treat a leak as an annoyance, not a catastrophe.

One thing I'd recommend if it's available in your area is an in person ostomy support group -- especially one w/some people around your age in it. There's just something about seeing actual regular people who look like anyone else you see in your day who also have bags. Often it's much easier to be clear that the bag would be no big deal for someone wanting to be with someone else than with yourself.

Hang in. Great that you reached out.
Posted 5/10/2013 6:07 PM (GMT 0)
Happy to see that your asking questions.

Sounds like you've dealt with you ostomy well until now. That's wonderful! Currently, you have alot emotionally on your plate. Divorce took me years until I absolutely felt normal again. Dating can take a toll in of itself. Dating after divorce, with kids, and with an ostomy, are all separate hurdles. I wish you much understanding as to your needs and wants.

You stated you've recently had a handful of accidents. I'm sure your preparation hasn't changed. I tend to gain about 10 pounds in the winter (Feb-April), decreasing my wear time about 1/2 days. Also, could be a bad box. My suggestion is to get a new box of wafers and change more frequently. Through elimination, weight gain post op led me to wear a ostomy belt and switched from the paste to Eakins. I still use the paste to dollop in the dips along side my stoma.

Leaks are not fun. It's how we cope with them that get's us through it. Laughter really helps. Having sensitive, mindful, understanding people around us. Right before my mother died, she was having incontinence issues due to her declining health. She was stubborn, hard on herself, embarrassed, thus leading to depression. She then only left the house for doctor appointments. This affected everyone around her. I think of her when I get a leak and don't want that instantaneous bad moment to affect me. I have kids and I don't want them to feel the way I felt.

An in person ostomy support group might be very helpful. Also, don't know if you've joined other support groups regarding the other issues in your past. Doesn't hurt to try. Might be a fantastic confidence builder!

Hang in there!
Posted 5/10/2013 9:17 PM (GMT 0)
Are all the wafers you are having leaking from from the same lot number? If they are you might have a bad lot.
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