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Dona
 Dona
(@dona)
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03/11/2017 1:59 pm  

Hi again Carolyn,I guess I didn't realize that you have so many other issues to deal with. That is a hard thing for sure. Its very hard to know who to trust and what is the best course to take.

 I just know that that particular kind of repair needs a specialist, which is difficult if you don't live near a major medical center.

Hopefully your illium will behave itself!

I wear a Hollister wafer, ( minimal convexity) with an Eakins ( cohesive)  ring ( I call it a donut). I use a drainable 'cloth' HA HA covered bag. Seems to work well for me now 5 to 7 days of wear time. My stoma is small and sometimes flush with my body ...thats why the convex.

After I got though the healing and size changes post surgery, it was much easier to get the right stuff.

I wish you well! Don't hesitate to contact me. Happy to chat.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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carolynreinhart
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03/11/2017 2:08 pm  

Thanks for writing Donna,

I appreciate our contact. Thanks, too, for saying that you are happy to chat anytime. Right now I am on my 3rd day of the flat 2 piece with the Coloplast Brava 2.5 mm ring. It is itchy sometimes and I wonder if it is leaking, so took apart the 2 pieces but couldn`t see anything suspicious so put it back together again.I will change it tomorrow and find out more. The other thing the Coloplast Team Lead person told me to do was something I hadn`t heard of called, crusting, which means putting powder around the site, then some spray like resin or something, then do that 2 more times. The first pouch fell off right away and I could see some patchy bits of powder still stuck on my skin. Anyway I put a new ring and pouch on and it stayed. She had suggested that because my skin was quite red under the ring, possibly because I had been using convex pouches. We`ll see. 

Thanks for listening. 

Carolyn

Carolyn Reinhart


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Dona
 Dona
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03/11/2017 2:19 pm  

Hi,

When I first left the hospital I used both the stoma powder  ( AKA powdered glue..It seems) and the skin prep wipes ( AKA more glue).  I also got a kind of crust going, and the wafer didn't stick very well. I think like others have said, less is more. Use the least amount of skin prep stuff you can.

 I no longer use the wipes, and just put a ring of the powder at the base of my stoma when it is very clean, warm and dry. Then use the blow dryer to both blow off the excess powder and warm & dry my skin.

I am a big fan of the hair dryer ( I have a small travel type). I heat the wafer and ring before and after I put it on AND then use pressure. ( fingers and hands)

I know that skin crawly feeling signals an immanent leak for me too...always checking when I feel it.

And yes.. keep in touch.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Marcie
(@shulmjs)
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03/11/2017 2:43 pm  

Carolyn, I work hard the first year and kept on going.. Now, I have used all the products, here in the usa that I could get my hands on. There at some new ones - but have to order through them-and will be a mess with insurance.. So waiting... But I have tried them.. From Germany-- Liked them-barrier kinda stiff but did move with my body- the pouch has a cloth like pouch- got tangled up with my skirts- sorta bumpy- and the empting part was narrow.. I like the wide mouth..    They are:

B. Braun Flexima 3S.......... Great for sensitive skin of pouching area.. also they said that is for sensitive skin of wafer.. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Marcie
(@shulmjs)
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03/11/2017 2:59 pm  

Caroyln, Sent a reply private mail..

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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john68
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03/11/2017 3:08 pm  

Hi Carolyn, The crusting method seems to heal better for some more than others. Its a fine line between too much power to little. I have sore lately which I have been using power on and its healing but slowly. dust lightly, brush away excess, use wipe or spray and repeat. you want to form a scab (not a nice word) so the broken skin is protected. Using the hair dryer as Dona says is a great tip, was one of the first things told to me by a fellow ostomate years ago. just watch as the wafer can get too hot. On the sprays/wipes an alcohol free one will sting less.

ileostomy 31st August 1994 for Crohns


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carolynreinhart
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03/11/2017 4:24 pm  

Hi again. Good to hear from you and to learn that you have used the powder and wipes. I had some left over from the home care they send after hosp. They don`t usually know much about stoma care but do try. She got me samples of things. Then my specialist stoma nurse from St Mike`s hospital in Toronto whom I saw on teleconferencing hosp-hosp said don`t ever use any of those things. She was so wonderful and so helpful and knew what she was doing - 20 yrs experience there. My surgeon has an arrangement with St Mike`s.

Anyway this Coloplast woman called Valerie told me to do crusting so I tried. I will change tomorrow and use the hair-dryer - which I have never done before -good idea. Do you use a 2 piece pouch. Ill keep in touch. Thanks.

Carolyn Reinhart


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carolynreinhart
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03/11/2017 4:28 pm  

In our Ostomy Chapter we had a Braun rep come to speak to us and show us all that they are bringing over to Canada. They now have set up a company here. She gave out samples. I haven`t tried them since I was in the middle of trying the other ones. She said in Germany they get everything free and these materials are made for very short term use like a day or two and then they change and throw them away. I thought they were a bit flimsy but that is why. Lucky Germans. 

Carolyn Reinhart


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carolynreinhart
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03/11/2017 4:30 pm  

Thank you John. It is good to hear from people who have actually used this crusting idea. I had never heard of it before. Carolyn

Carolyn Reinhart


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VeganOstomy
(@veganostomy)
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03/11/2017 4:31 pm  

Carolyn,

B. Braun has some really nice products (I've reviewed their Flexima 3S and will have another review out shortly), but they offer both regular and extended wear products, so if you need longer wear time, go for the extended wear. 

That said, I get nearly the same with their regular wear as I do with other extended wear products, so everyone's mileage will vary! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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carolynreinhart
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03/11/2017 4:32 pm  

Thanks Eric. The rep said that after this past summer they should have all the products available here in Canada. She only had a few things to show us. Carolyn

Carolyn Reinhart


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john68
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03/11/2017 4:42 pm  

Yes Carolyn, yes I use a 2 piece convatec, I like a 2 piece as I find it easy to put on and like the idea that I can change to a fresh bag. after I have cut my wafer I lay it on a face cloth and at a low heat run it over testing with my hand to how warm it is. you can see it curl a little which I also think makes it a better shape to fit. Again be careful not to over heat.

ileostomy 31st August 1994 for Crohns


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carolynreinhart
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03/11/2017 8:01 pm  

Thanks John. I have been using the Coloplast 1 piece since surgery 1 1.2 yrs. But a month ago I switched to the 2 piece on the recommendation of the Coloplast customer help line. I was having blockages or what I think were times when the plastic inside the pouch lay on top of my stoma and there was a suction or vacuum effect also in the pouch so that my stoma was blocked and nothing was coming out. I ended up in ER and think that this at least contributed to the problem. I also have a hernia and my ileum sneaks out in the defect or gap between the stoma and abdominal tissue. That has happened 5 times now so I have to go and see a colo-rectal surgeon because my surgeon doesn`t want to do anything herself with me. 

Carolyn Reinhart


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Marcie
(@shulmjs)
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03/11/2017 8:44 pm  

Carolyn, Sounds like you need a new Doctor any ways!!!!!!! IF this dr. just want to erase you for it!! She cant help you and is she not with the program to help you..  sounds like a goner to me and If it were me? I would be gone some time ago... You may feel better with a whole new set.. 

I use the 2 piece also. Then went over to the one piece-somehow the wafer material makes me itch-So, back to the 2 jobber..  Try some liquid deoerant or some liquid jell- the Bo one works for me to get it down if I sit to long.

Also, I checked in with Eric for you about the crusting vido-I still cant find it-- :-( so, go to the professor!!! 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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VeganOstomy
(@veganostomy)
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03/11/2017 8:59 pm  

Hey Carolyn, 

I have some info on the crusting technique in this article:  https://www.veganostomy.ca/guide-to-ostomy-stoma-powder/

I will have a standalone article and video on crusting, but the article above should help give you an idea on how to do it. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Marcie
(@shulmjs)
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03/11/2017 9:07 pm  

Thanks Eric. 

Marcie.. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Robert
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Posts: 670
04/11/2017 12:39 pm  

Hi Carolyn I don't use Coloplast I use Hollister its what I started wit and just seems to work for me . I used to use a flat barrier but had problems with leaks and soreness and red skin my ostomy nurse switched me to convex and that did the trick for me but we are all different I guess you have to experiment with different things . But as for your red skin I too had that for months after surgery . My surgeon had me use Marathon its not real cheap but sure did the trick for me . It comes in a one use vile . Like Dona said less can be more and the blow dryer definitely works really well .

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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Marcie
(@shulmjs)
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04/11/2017 6:38 pm  

From the pictures I have seen with men that have to shave---(Eric) You all must be in horrible pain and must have horrible rashes etc. to deal with...... How d u cope?? 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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VeganOstomy
(@veganostomy)
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04/11/2017 7:51 pm  
Posted by: Marcie

From the pictures I have seen with men that have to shave---(Eric) You all must be in horrible pain and must have horrible rashes etc. to deal with...... How d u cope?? 

I use an epilator and tweezers - have been doing it for over a year and my skin has never looked better. I'll be posting an article specifically about the epilator, but I do have one on shaving already on the website. 

Previously, I used an electric razor and started to develop a lot of problems, especially during the summer. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Marcie
(@shulmjs)
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Posts: 1497
04/11/2017 7:57 pm  

I will never complain again about the changing of my "appliance" again!! 

Talk about time preparation!! Seems like you guys have many answers to angry skin !!

Tweezers????? uhg! 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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