Things have been going so well with AJ - the occasional leak, but they were usually because I waited to long to change or ate something and didn't chew well enough. I was getting 5-7 days between changes. Two weeks ago things took a turn for the worse. I am back to leaking every 1-3 days again!!! To make it worse I have no early leak detection system anymore. I have no feeling on the circle of skin around my stoma (right where the wafer sits and makes that nice permanent pattern on your belly). Ever since my stoma revision two years ago zero sensation there. So no early itches or tickles to let me know there is a problem. Nope - I have to wait until I go to the bathroom and find a full blown, oozing mess before I know there is a leak. I have gotten into the habit of checking all around the ring for any leaky looking marks whenever I go to the bathroom because of this.

So what's changed? Well I have gained weight in the the last year, but I am still the same weight I was a month ago when things were fine. It is times like this when I really start thinking about that K-pouch Dr Fazio was ready to give me back in April.

I have too much going on in my life right now to deal with AJ's crap! (pun intended) Sometimes I really hate my ostomy.....

Hi Tricia,

I'm so sorry that AJ is giving you such a hard time! Sometimes I feel so lucky that I don't get that problem with Wee Willie (touching something wooden here) but even so I do know how frustrating it can be and I also know that things can change at any time.

I'm like you in that if my output is too chunky I will get problems with the seal on my wafer, but for me the symptoms are that blockage feeling just behind Wee Willie and then it hurts when it passes through the stoma into the bag. That is my signal that I need to do a full kit change early, so it must be pretty annoying to have no warning at all before a blow-out.

I know you have been thinking about getting a K-pouch for some time now so maybe it's time to have another word with Dr Fazio and maybe get the ball rolling. There's never a good time for surgery but if it is going to improve your quality of life then it's worth thinking about it.

Good luck in whatever you decide to do. Say hi to Suzan for me.

Take care.

Shell

Thanks for the cheer up Shell! Suzan pointed out something to me this morning when I woke up to ANOTHER leak. I have been leaking the past two week every day or so. This means I have gone through almost 10 wafers (usually that lasts me almost 3 months). Hmmm, there are 10 wafers in a box....I wonder if I got a bad batch of wafers??? I was down to the last one in the box anyways so I went ahead and trashed it and started with a fresh box I just received last week. I am keeping my fingers crossed this will fix the issue. I think I will also just plan on changing every 3 days (assuming I make it that long) for the next couple of weeks to help my skin heal etc.

I really wish I could go see Fazio and seriously start working on the K pouch, but financially i can't do it right now (especially as it isn't really an emergent thing). i am pretty sure I can improve my problems by losing some weight around the middle which I need to do anyways. With the new business money is very tight and we have zip for savings. God forbid something go wrong, but if it did with the surgery we would be screwed. And since we are talking about me....well, things just seem to go wrong. With the J I wound up out of work for 3 months.

So, a new box of wafers, hopefully some weight loss and changing more frequently for awhile. That is the plan of attack for now. I would like to try an ostomy belt again, but the one I was using before was about an inch thick and with my "Curves" it just tended to roll and not do any good. Can anyone suggest one a bit wider that is comfortable and won't make me sweat yet will support the bag and help press the wafer in more? (oh and yes I already use a convex wafer)

Hey Tricia,
I use the Phoenix Ostomy belt and love it. I have a high stoma and need support so I don't get the pull from a full pouch. You wear the pouch sideways and it tucks into the belt.
As for cost, most people's insurance get a discounted price from Byram and their insurance pays for most of the rest. I order through Byram and my insurance pays 90% so I ended up paying like 4 bucks for each belt instead of the 50 when you buy direct. I just ordered a second one. Order numbers are like PS100 for small, PS200 for med and PS300 for lg.
hope this helps
David

Dave,

I think I will try that belt. I have seen people on this site mention it and say good things about it several times now. Does the belt breath ok? It looks hot. I know I ordered a pair of underwear once that had a pocket for the bag and they felt like they were made of lead. Needless to say I never wore them again.

Hey Tricia,
FYI, Chris has not been right since the valve repair. K pouch is no picnic. I would personally never choose it after seeing what he goes through.

Tricia
the belt has the material that is similiar to an ace bandage - it says 90%cotton, 10% lycra on the tag if that helps any...
David
Go Colts 5-0

The belt I used is a white 1" belt with plastic clips - I have no idea who made it though.

I have found two links for the Phoenix belt and the Better Life Ostomy Belt. The looks amazing similar - which is better or are they the same?

http://www.ostomysupportsystem.com/product.html
http://www.ostomysolutions.com/default.asp

Currently I am using no belt and use pouch covers from http://www.pouchpals.com/. I love these covers and order approx 6 of them every 6 months or so. They are great and I cannot wear my bag without one now. I also wear boxer briefs for underwear. I was never too fond of the way women's underwear fit and once I got my illeo I hated them even more. I wear my bag straight down. I have found the men's Fruit of the Loom Boxer Briefs (Ringer Style) are so comfortable and support my bag without a tight Lycra feel. Frankly the only thing more comfortable is going commando.

I will try one of the above belts, but does anyone know the difference between the two if there is any?

Now if only we could design a leak alarm on our pouch covers/belts/underwear. Maybe an alarm or vibration....hmmmmmm

I changed after 4 or 5 days and everything looked pretty good, so I might have had a bad batch of wafers. I have gone ahead and order the Phoenix belt through Byram. The Phoenix belt has additional plastic inserts for hernia and leakage support and the other belt did not so that was the deciding factor. I will let you know how it goes.