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Looking for info re: visually impaired ostomy care  

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LK
 LK
(@dlkfiretruck)
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Joined: 2 years ago
Posts: 529
01/05/2019 12:02 pm  

Hey guys...I have a few thoughts on this. Eric has been kind enough to give a list of the companies ad there contact info, that make the supplies we use. (I can not imagine being in your situations. May God bless you and your loved ones that help, tremendously.) However, because of this list, you have the power to contact the companies. If you all tackle them together or on the same days, it may make them even more aware of who is using their products. I was wondering...why they have information on the products in every language out there, but not in Braille? It really should be on the package also. There would also be no harm in asking them to send you samples of product of every single thing they sell so that you can open the packages and play around with what they have, familiarize yourself and your noses with scents/feel and so forth. In order to find a product you like without having to actually use it, maybe they could send you one to play with and one to place on the opposite side or the same, but higher or lower, on your tummy try or to actually use and see how you like it on you when in use. Allergies do happen, so this may be a chance to prevent that in a place you actually need to have the pouch. Another thing I thought, how in the world you would find where to open a wipe with once it is out of the package? About five A.M. I wondered if it would work to remove a wipe from package and then roll it around in your palms to encourage it to open up. The wipes are thin, folder snug, and even I get frustrated trying to open them due to numbness. So, I just gave this a try and found that it opened up easier then usual for me. Pinching the material and pulling it helped a lot also. Once the edges came away from crinkling it more in my palms I was able to open it all the way. If it got too dry doing so, the spray would benefit you here. Braille on the spray cans of  adhesive remover and barrier would also be a benefit. Not to mention the pouches also. If the braille machine would poke minute holes in the packaging, as I saw years ago, could they use small dots of hot glue instead? 

zhtfreak, You asked a while ago about the condiment bottle for water and rinsing and wondered if it would take longer to put in the bag.  I found that because you can cut the tip open to about a 1/4 inch, lower to the top of the screw on cap, it did not take long at all to add water to the pouch, the bottles are softer to squeeze, to put water in the bag. Use the tip to keep it in the bag, however, the wider the opening, the shorter the tip becomes. You can find them in the dollar stores baking sections.  Anything I have suggested from the start of this forum, I have tried with my eyes closed tightly.  You are right, I never noticed before that the barrier wipes have definitely  got a scent to them. Kind of a bad alcohol smell that made my nose crinkled. The adhesive remover wipe is softer on the scent.The wipes work great for removing residue and the barrier, and if they dry out in your hands, the spray can be added to the wipes.  Also, when I change my pouch, in order the keep my tummy clean during any or active bag change, I wrap some toilet paper around my stoma. Three squares unseperated of three ply, in half, then folded Kitty corner makes it look like two triangle flags, then wrapped around stoma, gave a more clean area while cleaning and preparing my skin. Suggestions have been, using an empty toilet paper cardboard, but I found it too hard and my stoma bled it's also big for an ileostomy. My stoma is out about a good inch and a half most of the time and it just did not work or stay on. You would have to see/feel or know that output is happening then grab it and place it over to make the runway for the output to fall away from your tummy to keep it clean. Eric uses a gauze pad, this certainly does not leave residue on your stoma the way toilet paper does and would work great all around. I have only recently been able to buy them in our small town in bulk package and this helps tremendously. Three ply can still leave paper on your stoma which will get in the way of the seal of your wafer if you do not know it is there. The gauze, 4x4 size, you can open up and wrap the similar way, getting a much better affect. I found that TP acted as a bit of a storage area, but had to be changed with new TP rather quickly. I make a stack and have it ready to go. I wonder if a half sheet of bounty paper towel would benefit you greater. It is stronger then TP, would be longer then the TP wrap, thus keeping the skin clean. I will try it next time I change. In order to apply the wafer, I bend it in half  away from me, apply it to the bottom half of my skin and stoma first, re-dry the top half of the stoma with a tighter wrapped Q-tip, rolled between my fingers a few times, works well to dry the stoma before putting the wafer over the top half of the stoma. This makes for a dry seal to your skin. I hope this answers a few more questions for you. This is an important topic all around, and now there are three visually impaired seeking help and independence. I admire you greatly! There has to be so many more blind persons out there that desire the same for themselves. All the best.

Linda


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IleosTony
(@ileostony)
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Joined: 4 months ago
Posts: 98
01/05/2019 12:11 pm  

Hi Linda,

 

Thank you for being so generous with your time and info.

 

I use alcohol-free, unscented baby wipes wet with a bit of water. Your toilet paper trick sounds to be well worth a try, but I will probably use a paper towel. Incidentally, I also use the baby wipes to clean off the end of my pouch after emptying. I find it's better than TP.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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zhtfreak
(@zhtfreak)
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Joined: 1 year ago
Posts: 31
01/05/2019 1:59 pm  

Hi @Iliostony,

Good to know that you can at least empty your pouch on your own. I hated not being able to do that. How did you learn to do it? Did you just kind of trial and error and figure out what worked?

 

That ColoplaSensura Mio bag sounds different. I know Eric did a review on it. I'm trying to picture it compared to what I remember using. Since the end is kind of like a spout, I would think it wouldn't work well if you had thicker output, which I did most of the time. When my grandma emptied my bag for me, she always had a hard time getting the output to fall out. What type of closure does this Coloplast have? Interesting that you find it easier than the roll-up closures. Going by what @LK said, it sounds like velcro closures are the way to go. Then again, I saw a video on YouTube by a girl who absolutely hates them. The clip closure that mine used seemed like it would be tricky to close.

 

As for changing, I'm not sure what you would do about that, but there has to be a way! I don't remember having huge issues with my wafer sticking, but maybe that's because, as I found out later, my mom put some extra medical tape around my wafer, which she said made it last longer. I could usually go 6 or 7 days between changes. That probably varies from person to person, though.

 

BTW, love your signature.


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IleosTony
(@ileostony)
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Joined: 4 months ago
Posts: 98
01/05/2019 2:18 pm  

Hi @ZHTFreak,

 

My wife emptied my bag at first, and then I was able to do it myself once I switched to the Sensura Mio pouch. The first time I did my own emptying, she watched and gave me a pointer or 2 about making sure things didn't get messy. After that I was able to do it without help. 

 

Yes, it can be a bit more difficult to empty thicker output with this pouch, but it's worth taking a bit of extra time just to be able to empty my own pouch. I just squeeze the bag with one hand, not too hard, and keep the spout still and properly aimed with the other.  That's what works for me, but maybe you would find a different technique that works for you.

 

The closure is a kind of attached cap that goes into the opening with screw-like threads, but you don't turn it. You simply push it in until it doesn't go any further, easy peasy. This, of course, is after using a bit of toilet paper or a wipe to clean off any stool from the spout and the threaded portion of the cap.

 

My beef with the Velcro closure is that it can get stool on it and be difficult to wipe off, so I always ended up with a squishy Velcro closure. Yuck! The spout-type opening ensures easier aim without sight and is much less messy.

 

I suggest you call Coloplast and ask for samples. Don't bother asking for them via their website. They don't seem to monitor that. I've asked for samples via that medium and never got a call or anything.

 

I'm considering trying out Coloplast's locking mechanism 2-piece system.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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Marcie
(@shulmjs)
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Joined: 2 years ago
Posts: 1497
01/05/2019 4:49 pm  

Your early still--this will take some time for you--but after awhile-- Honey--u will do well..  I have to empty many times at night when the lights/power were out.. and I was new at it for 8 days.  So, my dear, you will prove better in a short time.. In more ways than this and forward on u will go..  sending you flowers of softness for your enjoyment within both and our minds..  Pretty huh ? hugs Marcie.  

You have a great life ahead...…….. 

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


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LK
 LK
(@dlkfiretruck)
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Posts: 529
01/05/2019 5:33 pm  

You all are more then welcome, I don't mind a bit. I clean the mouth after rinsing the bag. I take two or three squares of TP and fold into the square, I take my index finger and center the tip on the square, I then wrap the top part over my finger making the triangle, and then wrap the wings around my finger, I  put some pressure on the outside of the bag near the opening and make sure that the little bit of overlap plastic is clean and dry making sure I go from left to right or...R to L, to clean the length bit of plastic. Then my finger slips over the top and into the mouth and I can easily clean the inside opening by placing pressure on the farthest side of the opening to get into the little edges of the seam, and then towards the opposite side, pulling out and leaving a clean surface. Rarely uses two wipes. Good idea to use the baby wipes, no breaking of material like TP might do. I love them for a leak and I have used them to clean the skin under and around the wafer also, and if I am honest around my back and down my legs and the floor... but was always concerned that they may make the bag not stick by coating it with something else. So, I always rinsed with a small piece of bar towels ( towels from the dollar store) I cut into two inch sections and fan dry. If you drain it yourself, point the opening to the front part of the toilet bowl, and release slowly, this also eliminates a lot of splashing. I have gotten some output on my velcro once in a while, but I have been able to spritz it way with a spray bottle, I have also used rubbing alcohol from a spray bottle as well. If you have gas in the bag, burp it before you empty it or you can get some wet burping splashes happening when you open the bag after adding some water to empty it. Thinning the output in the pouch with some water helps to get it all out, and then if you want, a rinse or two does the job. I think any closure can jab you in the leg at the right height and it is annoying. I have taken the elastic part of size 7+ size sock and cut the elastic off with a bit of sock remaining on the elastic. Sewing the end I cut closed and then slipping it over the velcro closure, much like a mitten or glove, prevents me getting jabbed. This has also helped during this time I am dealing with for the Hollister 8331 pouch leaks, from the Velcro not giving enough of a face to face connection to close the bag opening snugly. This way as soon as it starts to leak it is in the sock, and not on me or my clothes. Turning it inside out to wash I pre-treat with a spritz of stain remove or cleanser (optional) then into the wash and dryer.

Linda (LK)

Linda


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