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Old 06-24-2016, 11:59 PM #31
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Went to see ostomy nurse today and she is having us try some different methods. One big thing is that when he stands up the stoma is different shape than when he is lying down. So we need to use this convex thing that hopefully will be our solution. I'm sure glad insurance pays for all of this.
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Old 06-25-2016, 11:10 AM #32
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Originally Posted by doydie View Post
Went to see ostomy nurse today and she is having us try some different methods. One big thing is that when he stands up the stoma is different shape than when he is lying down. So we need to use this convex thing that hopefully will be our solution. I'm sure glad insurance pays for all of this.

doydie,

I know there was concern about depression. Is he doing okay? This has not been easy for you either. You put a bit of humor and then forge ahead.

Pray the incision will soon be healed completely and changing the bag will become much easier and simplified.


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Old 06-25-2016, 02:16 PM #33
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I hope the convex wafer helps. I did not do well with the convex wafers. They created too much pressure around the stoma and by the 2nd day of wear, I just wanted to rip it off as it would start hurting. I had a flush stoma and ended up building my own convexity with Eakin seals and a moldable wafer. It ended up working great for me. I am glad you have an ostomy nurse working with you to find the best solution that will work for you. Remember, you can always call the various companies for free samples to try. I used ConvaTec and I loved their customer support. They were great. I also used some Coloplast supplies for a while and tried many different types of their products as to me they felt lightweight. But, I reacted to their products like I did Hollister and ended up only using their barrier strips when needed for extra protection (like swimming). You guys will find something that will work for Charlie and changing everything will be like brushing your teeth. It just becomes habit so quickly.

I hope he is healing well and overall doing better. It is quite an adjustment.
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Old 06-27-2016, 12:06 AM #34
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Gerry, yes he is depressed but says he will never take anything for it. His Mom had several mental health disorders and the treatments scared him although he realizes that for many years she was on a medicine that kept her very sane.

tkrik, thanks for your input. He is on day 2 of the convex wafer and so far it is OK. His stoma is not flush to his belly. I was wishing it would be but it looks pretty much what it looked like at time of surgery. Also the size is 1 1/4 inch and she has a 1 1/2 convex bag on him. She says it is because when he stands up, it all changes shape. I sure hope she is right. We ahve one more sample from him and then asked the company to send us a sample, since her is a 2 piece and the one from the company will be a 1 piece and clear. I have problems putting the opaque one piece bags on.
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Old 06-27-2016, 11:10 AM #35
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The stoma size will change. I can't remember the timeline exactly but maybe 6 weeks to 3 months before it settles down on a size. Is the ostomy nurse having you use an Eakin seal or something similar to compensate for the size change. That 1/4 difference may cause some issues. Also, maybe trying a moldable will help as it molds around the stoma creating a turtleneck effect. I know ConvaTec and Hollister make them. It maybe worth trying. I had a hard time with the one piece as I couldn't see through the bag well enough to put it on due to the flush stoma. I ended up using a 2 piece system and it was so much easier and less room for error.

Again, it takes some time before you find something that will work. And, what works now may not work in a month. Check out the different companies websites and if there is a system you think might work, request samples. I went through a lot of different samples to find things that would work for me. Hang in there! I'm rooting for you!
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Old 06-28-2016, 12:45 AM #36
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tkrik, we do have one with a moldable barrier. I will have to look for it. The bag we put on Saturday failed yesterday and the bag I put on yesterday failed today. The leak seems to always be around his belly button. And his belly button is deep, so it gets full of poop plus the poop around his stoma. Then after I finish all that and get a clean bag on, i have to clean that mess up and clean my hands really good so I can pack his belly wound. I am very thankful for the long brown bags that I think it is Hollister sent in their goodie box. It has something like 12 plastic bags in it. I also got a bag in the hospital. I don't know if they have some sort of odor resistant in them or not but after I tie that sucker up I don't smell the mess in it.

His stoma does seem to be a little flatter but still the same diameter. I don't want it to be flat.

Thanks for all of your help. It sure helps to talk to some one who has been there. I also enjoy the Spirit forum, informative and funny.
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Old 06-28-2016, 09:29 PM #37
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doydie,

tkrik really is so helpful sharing her past experiences and ideas. Especially the support that in time, it will one day be like "brushing your teeth. Pray that will be soon.

How are the "kisses" going? You sure deserve a whole bunch of them.


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Old 06-28-2016, 11:56 PM #38
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Gerry, we have been to frustrated to share any kisses. Thank you for reminding me of that. He did such a good job of pre-cutting some bags today with his fat fingers trying to use these scissors that I do need to give him that big hug and kiss and remind him of how much I love him.
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Old 06-29-2016, 12:09 AM #39
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doydie,

I can only imagine the frustrations both of you are going through. You have been experiencing so many "downers'. Time to start getting all the "ducks in a row" and the supplies that work best.

Prayers for both of you.


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Old 07-01-2016, 10:38 AM #40
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Aw Doydie! I'm sorry about all the leaks. I know after my surgery, the leaks happened everyday!!! It was so frustrating and was tearing my skin up. Between the allergic reactions to the adhesives and the leaks, my skin looked horrible. Eventually, we found a wafer that did not cause allergic reactions and after a few months, found a routine that helped the leaks. If I remember right, they said it could take up to 6 months before things settle down. I hope it's not that long for you and Charlie. I think it took me about 3 months to finally settle in to a routine and the right products for me. I also eventually used the barrier wipes which were a skin saver. I highly recommend those.

Again, the moldable wafers may work great for Charlie as he doesn't have to cut anything. He just has to mold the wafer to the size and shape of his stoma. I don't know if he gets tremors or not, but with shaky hands I found the moldable to be much easier to work with.

Also, the bags you got to dispose everything in are great. I think Hollister is the only one that has those. I used disposable diaper bag things. They are really inexpensive. I think they're made by Arm & Hammer. I know some people use the bags that are made for dog poop and say they work great and are inexpensive as well.

Hang in there! It's such a huge adjustment for both you and Charlie.
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