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Mentorship/coaching needed


kevin eh
(@kevin-eh)
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Hi, 

I have had my bag for about 2 years now and have a constant "raw" red ring around my stoma.  At times it is worse than others.  I have tried iodine and also this powder stuff with no luck.  We (my wife and I) are at a loss.  

 

I am also looking for someone to (on the phone or in person) talk with, cry with, vent with, and have fun talking about success in life and the enjoyments we are having and if we are local to eachother, meet up and hang.  I am in Toronto, Ontario.  

Please email me if this sounds like you!  kevarcand@gmail.com


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kevin eh
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...


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kedikat
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Lots of good advice here. Read through all the options that people have tried. No idea what you have attempted so far. But don't despair. Take advantage of free samples that the various manufacturers offer to test options. A different device may work better. A powder or protective ring from one may work better than another, even if you stick with one main device. Mix and match. Sometimes an adhesive in one device may not agree with your skin. But a protective ring from another may. Barrier wipes, barrier sheets. Maybe even diet can help. Lots of information here. Dig in.

Why?


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john68
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Hi Kevin, Could it be a case that you are cutting the wafer to big. Take a measurement of the stoma and allow a couple of mm to allow the stoma room. Make sure the skin is completely dry before applying the appliance. 

ileostomy 31st August 1994 for Crohns


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bagbob
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Hi kevin. I too have had some irritation around my stoma. I know that we all seem to find different solutions to our issues. For me what worked was simply changing every two days. In the beginning I thought I was going for the record on wear time however that didn't work very well for me. In addition the skin around my stoma has no feeling so I feel no pain when it gets raw. I'm fortunate that my insurance covers most of the cost of my supplies so changing often dosn't cost me. I think you'll find lots of possible solutions here on this site. Good luck.  ~BOB

ulcerative colitis since 2011
ileostomy 3-3-2021


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Fred
 Fred
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Kevin,

I discovered that to prevent a rash it's important to make sure the wafer is thoroughly dried after washing or showering.  I use a towel to absorb as much of the moisture as possible and I use a hair dryer on the lowest setting to completely dry. Hope this helps.


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kedikat
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Agree with john68. I tried protective rings with varying results. They did not seem to consistently stick or seal well. Now I do not use anything extra. But the hole is very snug to my stoma. Actually squish it through when applying as the stoma actually narrower at the base. The edges on the Sensura Mio are soft and seem to mold quite quickly to the stoma. I may go even a couple millimeters smaller to catch that tiny bit of irritation I sometimes still get.

Full disclosure. I am lucky to have basic plus situation. No fat in that spot. Naturally dry skin. No creases. Live in a dry temperate area. Your results may vary.

Why?


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john68
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Hi Kevin, The members have offered you great advice. It’s the little details that make the difference, from wear time to life style and body shape. Once we find the right combination we can have a happy trouble free stoma with a little fine tuning here and there😀

ileostomy 31st August 1994 for Crohns


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LK
 LK
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Hi Kevin...I know it can be difficult to find what works & put an end to that ring of irritation & burning. I dealt with that a lot!  My stoma is happy & over 12 yrs old now & even my skin is a happy camper most of the time!!! It is possible! Lol!  I live in B.C. so sorry no coffee chin wags here! Lol! Maybe there's a support group in your area & someone will meet with you. Check with a stoma nurse, they often know these things...so I've heard! I never had one.  On finding VO...well, I'm so glad & grateful I did! Thank you Eric & stoma buddies all over this crazy world! 

My stoma on average is about 1 to 11/2 inches long.  In the start I had been using one of those gross sticky rings that go between the wafer & my tummy. I've changed a lot since then.  One day putting my pouch on it just didn't feel right & I discovered it was getting a little wet on the inside lower edge of the hole I had cut, wet from the fluid the stoma makes.  I removed it within 30 min. of new. This wetness led to quicker wear & leaks, raw painful & annoying skin situations. On close wafer examination I was surprised it was already wet around most of the edge & on the flat side of the wafer & found  there was an area that looked like a bubble of air had been trapped not touching my skin at all.  Not good!!!

I learned to wrap my stoma to keep skin dry & clean while prepping skin for a new pouch. To do this, I take 3 squares of connected toilet tissue &  fold it in half, (I now use 3 ply for this, it doesn't leave pieces behind much at all,) the folding makes 1 1/2 squares doubled over together. Then I fold it like 2 connected triangle flags, folding  kitty corner. Then I put the long point beneath my stoma sticking out to the room & continue wrapping the tissue around my stoma & tuck the point nearest my skin under the edge of tissue by my skin with the point left at the folded edge under the wrapped tissue, then twist the open end a bit just for extra insurance of keeping my cleaned skin clean from flowing unplanned output.  I wish I could draw it for you! I actually now prepare a full roll of tissue folded in 11/2 squares ready to roll, pun intended,  thru my change keeping my stoma wrapped the whole time I'm cleaning my skin changing it as need be. I find if my bowel moves & output comes out the tissue keeps it off my skin allowing me time to lean forward a bit to further keep output off my skin & change the wrap. 

Just before putting on a new pouch I learned here from VO to warm the wafer with the low heat on my blow dryer, but just before I warm it I re-wrap my pretty little stoma & then prep a single square of tissue & fold it 2ce into a triangle then twist it as tight as I can & hold it in my teeth ready to grab, lol, this must sound rediculous, while I heat the wafer with a blow dryer. Then once warmed well all over, it turns glossier,  I apply it to my skin folded in half towards the floor removing the tissue on my stoma & using the tissue in my teeth  to stuff the rest of my stoma in the hole I cut. This is huge for me....I pay extra special attention for several min. & pressing firmly the whole area close to your skin especially around the hole you cut. Then sit for a good 5 min. & let the heat of your hand do the rest of the work placing it right flat over your whole wafer area & stoma. Close your eyes & just breathe deep. Read, sing whatever you enjoy! 

I want you to measure your stoma every time you change your pouch for a while. Use a mirror to see beneath it. My changed shape a lot for a few years & was playing a role in the fit leading to leaks as well. If you don't have enough religious graph papers,  lol, the ones with the hole sizes in it that come with the pouch or you need more, call the company, they will send you a bunch or you can ask for a couple of their washable ones. I keep meaning to do that but I want 3 of them if I go that route, one for my purse, one for my go bag & one for home.

My stoma is now a down facing capital D shape! Stable now for 3 years I think. Hard to figure a fit for but I have a few methods I use now for a really good fit. We can deal with that for you if you notice a wierd shape going on.

I think in order to help you further it would help us  if you told us a few things....like....what is your stoma like? Sunken, sticks out 1/4 " or brave like mine 1" to 1 1/2 " most of the time and enjoys an occasional pouch tour to the bottom of the bag!! lol! Do you use ring molds? Stoma powders caused issues for me as well. It seemed to invite fluid under the wafer, ugh! Are you using enough adhesive remover wipes to thoroughly clean around that painful ring?  I was using the 1 or 2 the nurse used until I discovered a build up & used more then 15 to clean the skin to squeaky clean, then a water only wash & air dry  before adding Skin Barrier Spray I also dry with the blow dryer.  What does the skin area look like? Red, raw, white & weepy? Even changing my sleeping position helped me. Has a doctor seen your raw area? How do you care for it? All important details. 

I know this is long & I'm hoping your still awake! Lol! There are all kinds of things we can look at right down to using the adhesive remover spray & barrier sprays in combination with wipes. Sometimes trying to eliminate products helps too.  But knowing what you've tried will help us help you.  I hope we can come to a resolve for you & get that skin healed up all shiney & new! Good on you for reaching out. No question is a dumb question here!! 

Linda

Linda


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kevin eh
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@dlkfiretruck Thanks for all the great info


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VeganOstomy
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@kevin-eh I'm sorry that you've been struggling and hope that you find a solution to your "red ring" problem. 

For what it's worth, give Ostomy Toronto a shout and see if they have any mentorship programs where you can speak to someone over the phone. I'm certain they did something like that for new patients at some point and may still offer it. Ostomy Canada may also have options. 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


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