Community Forums

Looking for info re...
 

Looking for info re: visually impaired ostomy care  

Page 1 / 2
  RSS

zhtfreak
(@zhtfreak)
Registered
Joined: 1 year ago
Posts: 27
02/06/2018 8:30 am  

So... I tried  creating a new thread last night, but I don't think it went through. Thinking about it, it might be better just to add to this one. 

 

I think before I can start putting together some content that could help visually impaired people like myself, it might be helpful for me to understand why things that I remember may have been the way they were. All I can go by is my own experience, and there may be other things that may be easier for someone that I'm not aware of. So I figured I'd post something here so everyone here can educate me. lol

 

First there's appliances and supplies -- I read about different brands and types I.e. Hollister New Image, and have ne idea what they are. From what I remember, I had one piece systems that I used for a long time, but eventually started using two piece ones. There was a ring of tape that held them to my skin and there was a smaller rubber ring that went around my stoma. That's where the top of the bag was on the one pieces, but the two pieces had a slightly more raised hard plastic ring above the rubber that the bag snapped onto. Except for as far back as I can remember, the bags had plastic loops on either side that looked like something could connect to them, but I don't remember them being used for anything. There was also a filter on top that kind of looked like a bottle cap. If these were supposed to make a difference to something, I certainly didn't notice anything. There were also tablets that were dropped into the outlet after every time the bag was emptied. 

 

At first the open ended bags I used were held closed with an elastic, but later they had clamps that closed kind of like when you hold your thumb and index finger together. They had a little latch that you would push toward the middle to unclip them. They were slightly curved so the latch could but angled toward the top of the bag, making it less likely to catch on my pants, though it didn't always work. My grandma always put them on the wrong way whenever she would empty for me. After I went through a series of major leaks due to the clamp falling off, my mom got the genius idea to put two clamps on the outlet opposing each other. That way if one fell off, there was still a spare. 

 

I always scheduled bathing around changing, which was usually once a week. My mom took off the old bag using some adheasive remover, then I'd take my bath/shower and get cleaned up. After I dried off, I lay down and my mom would spray some stuff around the area where my stoma was, then she put a ring of some kind of paste around the stoma itself before she taped the new bag on. I never understood what any of this stuff was supposed to be for. 

 

Anyone know what I might have been using? Are there other types of appliances/supplies that would be easier or just work better for someone than what I used? For instance, I've read they now have bags that have velcro closures. I'm trying to picture how that would work. I always figured back then that the stuff I used was standard for everyone. 


Quote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2290
02/06/2018 11:50 am  

Hi @zhtfreak, I just moved this to a new thread for you, so it should get better exposure.

It sounds like you may have been using a ConvaTec product.

The round "bottle cap" filter, the tape adhesive  the snap on two piece  the clip... All indicate ConvaTec but I'm not sure what might have been available 10 or 20 years ago. The ring that was applied before your wafer went on is a barrier ring. They are often used to help prevent leaks or to help the skin heal. They aren't necessary for most people  but they can help others. The paste helps to fill in dips in the skin. It's also not necessary for everyone but it can also help others.

Glad that you're researching this! Let us know if we can help identify anything else. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


ReplyQuote
john68
(@john68)
Registered
Joined: 2 years ago
Posts: 1273
02/06/2018 12:05 pm  

Yep that's a convatec system alright! Its like the first one I used! wafer built like a jail house door lol. but ye know what is was a really good system. But the clip it was best to wear it the wrong way round as other wise it was trying to remove yer leg.

ileostomy 31st August 1994 for Crohns


LK liked
ReplyQuote
zhtfreak
(@zhtfreak)
Registered
Joined: 1 year ago
Posts: 27
02/06/2018 5:29 pm  

 Thanks Eric for  putting this in a new thread. Yeah... probably better for getting exposure. It's a little bit tricky to get logged in and create a topic. Still trying to figure that out...

 

It's interesting to know what I was probably using. Yep, this was in the 80s and early 90s. I switched to the two piece system in mid 1994, around the time The Lion King came out. 

 

So... if the paste is a barrier ring, what would the spray be for? I think I remember my mom saying something about "skin prep" once but I didn't know what that meant.  It had a distinctive smell that I'm not sure how to describe. There were also a couple of tiny  tablets put in the outlet after every time my bag was emptied. I'd say they were about the size of an m and m or skittle. What would those be for? What is the "bottle cap" filter mupposed to do? As far as I could tell it didn't do anything. What about the little loops that were on the sides of the bag? 

 

Switching gears, the other part of management that was hard for me was emptying the appliance. Since it's 2018, people new to, or about to be new to, living with an ostomy can find a plethera of videos on YouTube that show how to this, including Eric's. That wouldn't really help a person with no vision though. There's an excellent article on this blog that explains how you can do this, but it's a little bit different from what I remember. For me anyway, I'm a hands-on learner, so it's better to have someone show me what I'm supposed to be doing rather than just explaining. I can think of ways I could adapt what I remember to be done nonvisually, part of that is because I always thought it was the "right" way to empty. 

 

With the exception of when I was around toddler age, I would sit or stand to have my bag emptied. I'd stand in certain sjtuations like if I was on a camping trip or when my teacher was emptying it for me at school. Otherwise, I'd just sit on the throne like you normally would. 

 

Whoever was doing it would point the outlet up and unclip it. Then they would take a cup they had filled with water and pour some in the outlet. This is what caused my mom to throw her hands up in frustration when she tried teaching me because I couldn't spread my fingers apart enough to hold the outlet open and line up the cup and pour the water in with my other hand. After that they would hold the outlet closed and, depending on who was doing it, would shake or stir the bag vigorously (like if you were mixing a drink), and then dump the contents into the toilet (between my legs if I was sitting like normal). Then they would go through that process one or sometimes two more times before flattening the bag out, sticking a wad of TP in the end of the outlet to wipe it, dropping in the little tablets and reattaching the clips. 

 

Does that make sense? Would it have been done that way because of something related to my output (most of the time it's thick). I hated when something didn't agree with me and it was thin -- every time I moved you could hear it moving around in the bag. Really embarrassing! Fortunately I don't remember that happening when I was out in public. That would've made me want to crawl in a hole for sure! 


ReplyQuote
zhtfreak
(@zhtfreak)
Registered
Joined: 1 year ago
Posts: 27
01/09/2018 9:31 am  

Hi all, 

 

I've been off grid here because of work, but now I have some more time. I'm still looking to try to help put together some content here that could help a person without sight like myself with ostomy management. It'd give me a way to put my writing to good use while I'm in between jobs. 

 

I'm still trying to educate myself though since there are many different aspects to this. Would anyone here be willing to connect with me via Skype or FaceTime? Talking might be easier for me to make sense of things. 

 

I was thinking I could look at each aspect on its own. For instance, as I said in an earlier post, one of the things that was such a huge inconvenience for me was not being able to empty my appliance on my own, so that's one of the first, and probably easier, things, I'd want to try to figure out a way around. Given the YouTube world we live in in 2018, there are a bunch of videos people can watch to get an idea of what they'll be looking at when they find out they'll be getting an ostomy. As awesome a resource as that is, it doesn't really help a person who can't see all that much. This one 

 

 

seems to be the closest to what I remember, at least from what I could pick out from the little bit of explaining the lady did in her video. Not only did it give me a huge flashback (probably not in a good way either), but it also left me with a bunch of questions. Too bad I couldn't have picked her brain since she's also a therapist. lol 


ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2290
02/09/2018 11:57 pm  

zhtfreak, I haven't forgotten about you! I definitely want to help to get your tips out, but I've been unable to get to creating new content lately :( Soon, I hope!

Regarding that video - I personally would NOT be emptying how she shows it because it looks like it can make a mess with the splashing and whatnot. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 481
03/09/2018 4:55 am  

Hi zhtfreak....I agree with Eric. Being visually impaired, sitting would be the better way to empty your bag.  I always rinse my bag,  twice is usually good. Have you thought about purchasing at the dollar store some of those condiment bottles with a squirt tip on them like they use for ketchup refillable bottles?  There tip is firm but soft to squeeze out water into your bag. This would give you more control over where the water goes into your bag to rinse it out with and to thin a thicker output for emptying.  I use a holister 8331 bag.  One piece. It has a charcoal filter at the top to help gas leak out with out odor. It works, but only for about two days max. Now, you ask about this bottle like cap on your bag. What I think your talking about  is an Osto EZ Vent. It can be found on Amazon for a fraction of the cost I pay...same thing. The amazon site  address  is down  the page here a ways.  You can help support Eric site by ordering thru them also. The cap is installed by you or someone  helping  you.  I use a hair dryer  to warm the seal side just moments before adhering to the bag. There is a small tab of plastic to remove first. You may want to use tweezers to remove the plastic piece.  You have to punch the hole in the bag once it is on, so the vent works for you. When you have excess gas in the bag,  go to the washroom and squeeze the two tabs on the sides of the vent to help lift the cap off the base to release gas, with vent still on the bag. It has a third little tab on the front  side of the lid, points right towards your tummy when it is on, that just kind of gives extra support for the cap so it does not lift off the base easily in your clothes.  I have never had a problem with the cap coming up by itself, it has a snug fit into  the base for the little peg in the center of the cap,  that goes in the hole of the base. To tell if the cap is closed properly, you can wiggle it slightly, it should remain in the hole in the base of the cap and not come loose. Practice while it is off the bag or on one not on you. Open and close as needed. If my bag has a lot of  fluid I would recommend not releasing the gas when the bag is too full, but emptying it first, then it is not on you or your clothes. To ensure the cap is free from fluid, I snap or tap  it a time of three with a flick of my fingers. This helps clear any build up from the hole the air goes out of.  The velcro  closure you are talking about, is a roll up closure, it is stiff. It rolls three time up  towards your chin to close and there is a tab that you pull down onto the out facing part, of the other side of the velcro,  press it down across about bottom, it is about two inches long by under half an inch wide in size, easy to manage, it will make a slight clicking  noise for you to hear that it is sealing. You pull the velcro up from one side to the other, to unroll, three rolls down to open the mouth each time you empty  the bag. No clips or elastics.  Using the squirt bottle to put water in the bag, point the bottom of the bag up to not loose the water on you, close the velcro, gently shake around the contents, unroll  pointing the bag end up or down depending if you have help or not,  if your on your own, and you have the bag in your hand, squeeze the sides of the bag with your finger and thumb to hold the fluid in long enough to get to the toilet bowl.  If no help, you can  open your bag pointing down into the toilet to empty it. It will separate at the opening with little help, squeeze the sides together to give access to the open mouth of the bag to clean and dry with toilet paper.  Sitting is most likely the better way for you. Put some toilet paper in the toilet bowl to float on top of the water,  it minimizes splashing as well. You can get some M9 deodorant drops to put in your bag, but, because you are blind, would using the single use packet of lubricating deodorant be the better product for you? It takes 16-20 DROPS of M9 to eliminate odor in the bag, and you can not see it going in. You may be able to hear it dropping in, if your ears are keen and it lands on the inside of the bag wall.  To be a tad more independent, using the narrow envelope, the single use, lubricating deodorant comes in you can pull or cut off the top of the envelope, after pressing the thicker fluid of the lubricating deodorant further in the base of its package, take a packet  and then place it into you bag down about two inches, squeeze the fluid into your bag. Toss the package. Close you bag. Press, and gently rub the sides of the bag together to distribute the fluid to the top part of your bag. By putting the package into your bag, it assures it is in the bag, and fluid does not get stuck in the opening. Sometimes I place a bit of water in the bag and if there is pancaking, I will push the water  to the top to help work it down the contents when I can not get to the washroom, this has worked well for me. Drink a lot of water each day and eat those watery melons. Cantaloupe, honeydew, watermelons...  I always had trouble cleaning the mouth of the bag the way I was shown. I have arthritic fingers, so it became work. I take three squares of toilet paper and wrap it around my index finger and put that into the mouth of the bag, wipe it away and out, it usually only takes one wipe to dry and cleans any remaining residue in the mouth, eliminating odor and wet spots on pants also. Now, the velcro closure can be a pokey little thing on the corners.  I sew, so I found some old socks the kids do not wear anymore and I cut the elastic tops off the socks, tossed the socks and then sewed the part I cut off the sock closed on one end. My sock tops are kids size socks so the elastic is snug. I can open the unsewn part, place the velcro closure, rolled up and sealed,  into the base of the little bit of sock, and then push the top of it it up toward the bag. It only sits on the bottom part of the bag, when it is  on, the amount of space it takes up depends on how snug the elastic is on the sock. I used children socks as they have a shorter tighter fit and has only come off once in my pants just from activity of weeding the garden.  It has made no difference to bulk in my pants either. This is the address for the vents on amazon...compliments of Dona a member from VO site here...  https://www.amazon.com/gp/product/B007AZ3KUA/ref=oh_aui_detailpage_o0

Eric may be able to take you to a video address on how to put it on your bag. It is fairly easy to do. Because I find that making the hole in the bag once the vent is on, difficult, they suggest using a sharp little scissors, I just used a nut pick which is almost the same size of the hole, a thick hanger wire may help here if no pick, and then I heat the pick, use a pair of pliers to hold the pick in its teeth, one that locks, and then heat the pick on the stove and carefully move as much plastic away from the sides of the bag and vent, lifting it off the bag base, then melt the hole in the bag that way.  Caution...If it is too hot, you can melt the cap hole, so go straight in and out the center of the hole. My hands hurt something awful some days, so this has saved me a ton of work. I can do three in a few seconds. Having a helper to pull the plastic gently away for the vents works well also. Be really careful about the heating and melting have  someone do this for you, as I have only once melted a hole right through the bag to the other side. Check bags to make sure you have not been melted. You need a sighted person for that job. You have to buy  bottle of alcohol as high as you can get to place them on the bag, use cloth and rub the shine off your bag to adhere the cap. Never toss your wet alcohol cloth in the trash, fire hazard. I have reused the caps now into my fourth round. I am not cheap, just on a very tight budget.  There is a bit of a procedure to successfully do this. For me at three dollars a cap, ten per pack, I find re-using them helpful. For persons under the age of 20, do not try this alone at all. Adult supervision is required and a must. This is what "I" do, and "not what is recommended by the company" or "Eric of VeganOstomy". The skin barrier wipes are to protect your skin from acids in your output. It comes in spray form as well as the wipes. Unfold and bunch up wipes to use. There is an adhesive spray remover, I used to use wipes only, but the spray has made a tremendous difference in how my skin is after removing a bag. I use some wipes, if there is still residue on my skin, usually is,  from the sticky part of the bag. Then I wash and rinse the skin and dry it in the air if possible, depending how busy my stoma is.  Then I spray on the barrier spray, about three or four short shots of spray around my stoma, and if it feels like to much, too wet, I will take a skin barrier wipe and spread it around on my skin evenly. This helps to remove it also if there is too much wet on my skin in one area. Fan it dry.  There is also a video on sprays too. Eric covers a ton of areas and if you get the chance, read his story.  It is amazing. Pictures included.  For me it was Trial and error all the way here. I am a 12 year ostomate, with an ileostomy.  Sixty year old female, widowed. Four kids, two are inlaws, four grands, one dog. If you ever wonder if you have a leak and can't tell,  just get a dog!  Lol.  I hope this is helpful, I know it is long but sometimes that is required. Good luck! You certainly have your challenges! Reach out anytime. Sorry, also, in Erics video of changing the bag, he suggests pinching one side of the opening, to allow for easier opening when you need to open the bag. I do this since I saw the video and it is easier to open the mouth and does not always require a finger nail to separate the opening. When emptying, I squeeze the mouth of the bag, closed from the sides of my hand closed, aim for the toilet bowl. with my thumb and index finger pressure slowly release and drain the bag. Let me know if this is of any good for you. If you wish I can send Eric a picture of the sock top I am talking about. No more thigh jabbing! Linda

Linda


ReplyQuote
zhtfreak
(@zhtfreak)
Registered
Joined: 1 year ago
Posts: 27
04/09/2018 7:32 pm  

Hi Linda,

 

That was a long post but you are right; sometimes that is what's necessary. it was helpful -- I learned a couple things I've been wondering about for a long time. It also brings up more questions though. 

 

Yes, sitting seemed to work best for me. There were certain times when I would stand though. Most of these were when my teacher emptied my bag for me at school. Although in that case given how little I was, she might have been emptying it into a pan or bowl and dumping that into the toilet, so splashing wouldn't have been an issue. Through my reading and YouTube watching, it sounds like there are a few different positions you can take when you empty your bag. You can stand or sit normally as I did, but you can also sit on the toilet facing the back of it, which doesn't make sense to me. You can also kneel, but wouldn't that really hurt your knees? Are the different positions more effective in certain places? Are they just a personal preference? or do they depend on where your stoma is? (mine was about belly button hight on my right side.) Can they be made higher or lower, or even on the other side of your body depending on the person?

 

That squirt bottle thing is brilliant! Although I'm thinking it would still be a little bit tricky. The thing I had a hard time with was being able to hold the mouth of the bag open wide enough to pour the water in. I would think that would still apply if using the squirt bottle. My mother used a cup that had a spout on it when we were at home. If we were out she just used a regular paper cup. Now that would take some skill.  It does sound like the squirt bottle would be easier. Wouldn't it take longer though? Can you just stick the tip of the bottle in the end of the mouth of the bag and squeeze the water in? That would be ideal. 

That velcro closure sounds like it would be perfect for a person like me. Are there pros and cons of those vs other types of closures like the clips that I used? I'm pretty sure the round thing on the bags I used wasn't an EZ Vent, though those sound like a good idea, but also very tricky to install. I'd definitely get help with that if it was something I decided to use. I think what mine had was just a filter -- maybe I didn't do a good job of describing it though. Ah...so they're supposed to help release gas. Unless you wouldn't know it's doing that , I certainly didn't notice anything. I frequently got the balooning thing (super embarrassing btw), and would have to have someone do the "burping" trick where you point the bottom of the bag up, open it and push down lightly on the top of the bag to let the air out -- I couldn't even do that on my own. 

 

The M9 deodorizer thing is something I've only read about since I've been on this site. Hmmm... it does sound like it would be difficult to apply since it sounds like you have to be precise with it. So yes, it does sound like the single use ones would be better here. They sound like they come in packets like some restaurants give you for condiments, like McDonald's does when they give you ketchup for your fries. I hate those things! I can never get them open and if I do I usually end up making a mess. lol I wonder if those deodorizer things also come in a tablet that you could stick in the bag. That would be even better. 

 

As for changing the bag, that's a wholeother ball of wax that sounds a lot harder. I'll have to do some more thinking on that. :) 

 

I almost want to try to find a support group around here to talk to. It'd probably be helpful for others and maybe I could get my hands on some samples of some of this stuff. Research. lol

 

Yes, having a dog is great! I'm in the process of getting set up to train with another guide dog...this will be number 5. 

Brian


LK liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 481
05/09/2018 7:51 pm  

zhtfreak..Linda here. You ask a few questions, I hope I can answer. You asked, What would the spray be for? The skin barrier  and adhesive remover comes in spray cans.When you change your bag, it is important to get the sticky stuff left on the skin, off of it. You can usually feel the difference if you run a finger around your bag area, on your tummy. Clean, is smooth and soft when dry, verses a thicker sticky area. Smooth feeling, no dragging is clean. There are two sprays that I know of. One is the adhesive remover and the other the skin barrier spray. They come in a can about five inches or so high, not too wide to hold securely. It is a spray, not a spritz like the  pump bottles. You should be able to feel just where the nozzle is so you do not spray elsewhere. Like in your face. The spray comes out of the little dip in the top part of the nozzle on the spray can. The piece you press on to get the spray out. The adhesive remover is self explanatory, it helps remove residue of sticky tapes and such from your tummy. The skin Barrier spray protects the skin from the acid in your output. I would not be without it. Now, they come in two forms. One is a small packet, I use both. If I want extra attention to my skin by the stoma, I will open a barrier packet and unfold the small wipe ( about five by six inches) scrunch it some,and then gently pat or wipe the area I need it on. I also use it if I have accidentally applied too much barrier spray. I take the wipe and just spread it around better, fan it dry, then there is not too much in one place. Toss the wipes out...not in the toilet. Cool may not be dry, where not cool, may be dry. Touch the area to make sure. For you, in order to define which wipe is which, have some one fold the top side of the packet over that  you choose to identify so you can feel the fold and flap it makes. Just fold over one kind of wipe, not both. Your brain will learn which is which this way. They both have a faint odor of some kind but are safe if you get either the spray of the wipe on your stoma. Neither sting. You can buy gauze pads to help with cleaning the area around your stoma and the skin that has residue on it. They can come in a paper tube of gauze, stacked, about two" by two"inches in size, or bigger if you desire. I try and find the ones that are similar to bulk buying something. depends on where you live and what is available. You mention the loops on the sides of the bag. I think only two piece has them. Those two or more loops are to attach an elastic belt, that has clips on it, they go thru the loops, and wrap the belt around your waist, and the attach the other side of the belt hooks into the loops on the other side of your bag. This is meant to hold the bag a little more snugly to you, if using a two piece pouch. I have seen them but do not use them. Great if your being active. security is security. 

Back to the little cap thing on your bag. I have seen three different bags that have the filters on them. I use the hollister 8331, it has about a two inch strip with a 1/2 inch wide strip near the top that filters air out. It is a charcoal filter, sometimes get wet and will leak on occasion. I put tape over it after the second day. It is a tad rounded to the curve of the bag and lets out the gas slowly. The filters block sometimes by the second day. I have seen other filters also, Not sure of the bag brands anymore, but one had a small circle filter near the top right side of the bag. Like a cap would have, circular but flat. The other one I saw has a spongy filter all around the circumference of the bag. It too clogs in time and then you end up with needing to self burp the bag or change it. I a thrilled your getting another guide dog. If I have even the slightest leak happening, my dog will nose around and sniff my shirt or the bag area.  You most likely know that, I would think. Congratulations on your new buddy!  They are amazing company. If not sure of a leak, you may be able to feel a damp spot in the area of the leak. Tingling skin is also a good detector. Pay extra attention to tinging areas when changing a bag. I had thought about a squirt bottle for a few days and best how to describe it for you. It has about a 1 1/2 to 2 inch tip, so you could put the tip into the opening of the mouth of the bag and just add water slowly to the bag. Use your judgement on how much water to put in and feel for the size the bag gets while adding it. Roll closed the opening, secure with the velcro, shake it, open and drain. Repeat as necessary. The temperature of the water you put in the bottle may help you determine how much you are using. You will notice a cold water more then a warmer water in the bottle. Feel the bag ahead of adding water so you know how much it can hold approximately.  Shaking the bag thins the  output. Over time, they have improved the plastic on the bags. The one I use is re-markedly quieter then the old. They also have bags completely covered in cloth. I have tried them but find they do not allow for the bag being tugged in any direction while under clothing. too bulky feeling. Mine has cloth only on the side by my tummy. Gas build up is my huge embarrassing moment also. Called ballooning.  This is where the osto EZ vent comes in. It is a safer way to loose the gas,verses burping from the bottom. For you, I would suggest opening the cap when you are standing. Then fluid goes to the bottom area of the bag, and the air on top, will go out the cap opening. you can press softly to encourage air out. You have to manually open the vent, but again, if you go that route, I would simply apply the cap and then practice till your hands know what you are doing. Same with opening the mouth to empty the bag. I use my more free hand to help lift the cap off the vent as my finger nails are too soft. I then keep my free hand on the bag where the fluid is and then put some pressure there to keep it there, and then release the gas. Just let it ride out, do not press too hard on the area with the gas in it. You do not want a bath. My hands are arthritic, I find them fairly easy to open, and they have never opened on there own. 

Sitting...facing the back of the toilet would give you a little more room, but not that much. I always sit as I feel I have better control of where the contents go from the bag. I always add a few squares of tissue in the bowl to prevent splashing. Six to eight squares usually does it. Public washrooms can be messy places. If unsure if you have a clean seat, I either lay tissue down on the ring, or wipe it to be sure it is dry. The tissue will not slide as easy if the seat has water on it. With a bag it is important to know the places you go and if you can use there washrooms. I usually introduce myself, talk to the manager and just explain that I will leave the washroom as clean if not cleaner then I found it. I picked up some small bottles in the cosmetic area of the drug store, and I use them to carry on me extra M9 deodorant. They also have a really good air odor eliminator spritz. It is a small bottle, but works well.  I was only denied a washroom once in twelve years. Do you have arthritis in your hands? I do, and I find I manage the opening of the bag easily enough. I would suggest that when you get a few samples if your looking to change bags, sit around with the bag a day or two and get a good feel of the thing. Play with the opening. Figure out a way to open it that is best for you. In your case, because I have to use a finger nail to try and separate the opening on the bag.  I would make that pinch in the bag on "both" sides of the mouth piece, in the first  harder edge of the bag leading up to the velcro. It has enough rolls so it will not leak from there. Same place or not, is okay. It would give you a way to feel the opening and hopefully work easier for you. It sounds like your stoma is in a similar place as others with an ileostomy. Colostomies are usually on the left and occasionally an ileostomy may be there too. Do not forget to clean your belly button once in a while. It is a great hiding place for fuzzy stuff, but cleaning it  ensures no problems happening in or around it when it is always covered by bag tape materials. Q-tips work well for that. I am working down your list of questions. Kneeling hurts my knees something awful. In a public restroom kneeling,you would not be able to tell if the floor is wet ahead of time or not.  I just always sit. I know my routine well and it never changes unless there is a problem.Now, you ask about the closures. I think clips are kind of a crazy thing to manage. I love the velcro. It is very secure and you will be able to hear it snap as it closes. Press along the length of the last edge. Three rolls up, three to open. I have seen three different closures, the clips, the bag I use and then another with only two small tabs of velcro wrapping around the sides of the roll up on the bag. I much prefer the hollister for security. My dog likes to greet my by climbing on me lap once in a while and only once has he  punctured a hole in the bag with a claw, but he has never opened the velcro. The bag poke I noticed right away due to the fact that he was pulling on my clothing and the bag. I have also never had leaking from an  osto EZ vent. Accept for the one time I accidentally melted the rim on the hole the post goes into the cap after securing the vent. I deserved that!  I called Hollister, they do make a tablet form of the M9 deodorant. to go into the bag. I do not like the cap the fluid comes out of on the M9 deodorant bottle... I transfer it into a bottle that has a drip spout on it like what you would use for a sinus spray. The spout on the big bottle is more of an open tap. I loose fluid every time I refill the ones I use. If I have to, I will buy a bottle of sinus saline mist, clean it up and then refill that with the M9. I put some drops into my bag last night and I could hear them hitting the side of the inside of the bag. I was in the dark practicing these things so I had an idea of what you could be able to hear, or feel. A slight ticking sound is made. I would practice with just plain water until you know what you are doing. The solution is blue in colour. Since using the tip of the sinus type bottle, it is easy enough to put it into the  opening of the bag and the drops fall into the bag with little to no pressure. I pay 40 dollars for the M9. Look on amazon for it before ordering yours. The cost is why I count my drops. I once went thru a full bottle, about 8 ounces, in a week then had to do without for the rest of the month. The bottle they send the drops in has a crazy spout. Since, I will not be without it. Yes, you are correct, the single use lubricating deodorant is much like the ketchup packets at a restaurant. If I were you, I would  press the fluid in them to the bottom of the sachet. Then I would fold the packet in half near the top and with scissors, cut a V shape into the canter area of the package area, place the packet  into my bag and then squeeze it into the rest of your bag. I believe is effective in odor eliminating as well as helping with pancaking. Eric has a video on terms and so much more for ostomates. On the odor thing, they do have a tablet that you can swallow to help with odor. It is a chlorophyll tablet. I have not tried them. Sometimes, if it isn't broke, don't fix it, works best. If you are unsure about managing  the emptying of the bag issues, try putting a bag on your other side of your tummy,with out a stoma, and practice from there.  The sample of M9 they send has a nice drip bottle to it.   Do not be shy about asking for samples in anything. They will want your business for life. I think this covers it Brian. Anything else, just ask, I will try to help you along. You are a strong brave person, remember that. The worst someone can do for themselves is to say I can't when they have not tried. You have a positive, adventuress  outlook and I admire that. Even in the middle of a big leak, I try and find at least one thing I am thankful for. One time I paid myself five bucks for getting thru the change process.You impress my with you courage. Do you still have your Mom around? Can I ask where you live? I live in Canada.  Now, here is the phone number for Hollister...1-800-263-7400 Canadian. Also, there distributor...inner good...1-844-466-3939 USA 1-800-323-4060.  Coloplast...1-888-880-8605 Eric has an area with contact information for other companies also. He also has info on how you can help support the website by ordering thru amazon and such. Good luck and keep us up on how things go for you. Ask anything!

Linda

Linda


ReplyQuote
zhtfreak
(@zhtfreak)
Registered
Joined: 1 year ago
Posts: 27
06/09/2018 10:39 am  

Hi Linda, 

 

Thanks for all your help. You have a lot of good ideas that I never thought of. Let me provide some more background on why I'm researching this stuff.  This will be another long post. 

 

My ileostomy was reversed in mid 1995, a month after I turned 13. I've had a J  pouch since then. At least... I think I have going by the research I've done. Being unable to manage my ostomy had a huge effect on me. About 6 months ago I was diagnosed with PTSD because of that. That's actually what led me to seek out a place where I could talk to others with ostomies which eventually led me here. Researching this stuff is helping me work through that, even though I can't quite put my finger on why yet. 

 

As I have said in a couple of my other posts, my first three years or so of school I went to school with other kids who were also blind before I went mainstream. I felt very alone there because no one else had the same stuff to deal with. When my bag would balloon I'd get all the "what is that?" questions from the other kids. I remember one kid on the bus asked me if I was going to have a baby. My teacher would pull me out of class somewhere around the middle of the day to take me to the bathroom to empty my bag, which I absolutely dreaded -- I always knew that was coming but there was nothing I could do about it.  My mom took me to school on the first day the first couple years like I'm sure a lot of kids' parents do, but she could also show my teacher how to empty for me. That didn't happen when I hit first grade though, so when my new teacher took me to empty, she wasn't entirely sure what she was supposed to do. Consequently, that gets triggered if I'm with someone and they're not sure how to act around me, which happens quite a bit. 

 

Right now I do some independent contracting teaching people who are newly blind how to use technology. I go to their house and teach them basics of Braille, using a computer, and most commonly, how to use an iPhone. sometimes that involves taking their hands and showing them how to tap and swipe on the phone screen to get it to read them what they want. I don't like doing that because it reminds me of my mother getting frustrated when she tried teaching me to empty my bag myself. In that case the furthest I got was trying to open the mouth of the bag to be able to pour the water in. Yes, it was difficult -- I was trying to hold one side with my thumb and index finger, and use my middle finger to spread the other side open wide enough to be able to get the water in there. if i would have lost my grip, it would have made a huge mess. there would have been ways to make that work though, thus why I think that squirt bottle thing sounds so genius! I like to say that I'm a hipocryt because I hated how I felt in that situation, yet I turn around and the do the same thing when teaching tech to people. lol 

 

The first dream I ever had was to go to this track and field competition they had in California every year for blind kids that one of my friends from school told me about. It sounded so cool because they made a weekend out of it and went to some amusement parks while they were down there. I knew I wouldn't be able to go though because of my bag. Looking at it now, that could've been taken into account -- perhaps my mom could have trained one of the people shaperoning us to empty my bag. Yes, I would've hated it, just like in school, but at least I would've been there. To be fair though, maybe there were logistics that would've prevented that. I did eventually get to go, a couple years after I'd had my reversal. It was every bit as fun as I'd thought. You could say it was a very early checking off of something on my bucket list. 

 

That restrictedness I felt is part of my wanting to put together some info for visually impaired people like myself -- I wouldn't want someone to feel the shame that I did if it's at all possible. Just knowing that they're not alone would be huge. i would love to have known that. 

 

Yes, that playing with the bag to figure out a way to get it open is something I would totally do if I could get a hold of some samples since it sounds like there are a lot of different options now from what I remember. For all i know, getting it open on the velcro closure types may be different from the ones with clip closures that I used. That putting the bag somewhere else on your tummy to practice is another good thought, and is something I've heard they encourage a person to do when they get info after finding out they'll be having ostomy surgery. 

 

Yay for being able to just put the tip of the squirt bottle into the mouth of the bag to put water in it. As for the water temperature thing, does that really matter? Since putting water in and shaking it helps thin your output (something I remember and always kind of wondered what that was about), I would assume you wouldn't put as much water in to do this, correct? As for feeling the bag to know how much you can put in, that could be kind of tricky if you're using both hands to make sure the squirt bottle is in the bag. Maybe if it's easy to be sure it's in there, it would free up your other hand to be able to tell how much water you're adding. 

 

From what I remember, my mom would do the thinnning the output thing and then drain it into the toilet between my legs. Then she would pour water in and shake it to rinse it out. Sometimes I guess that didn't quite do it though, because she would pour water in for a third time and shake it harder. I would guess maybe that was because there was still some output stuck in there somewhere. So if I were doing it now, I would probably rinse the bag out a couple of times just to be sure. 

 

as for where I live, I'm in Utah.I do have a couple of friends in Canada that I talk to regularly though. Hopefully after I get my new dog I can go up there to visit one of them. We've been planning that since the end of 2012. 


LK liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 481
06/09/2018 8:42 pm  

Hey Brian...I am glad you think they are helpful ideas. I do not want to hog this forum from other suggestions also. I like to know how things work and what makes them work.  Your history is unique! It is good to have dreams and plan no matter when they come to fruition.  I started my gut problems as a child also, at age ten. I  also remember being accused of being pregnant when I was in grade seven at school, because I was 18 days constipated. We never talked about things like that back then. After our  marriage, my man told me to see a gastroenterologist.  I saw several, over years. I was married in the 80's In 1996 I met another gastro guy, my seventh I believe, he took what was happening to me seriously. I nearly fell over. But, this Dr. Michael Pesim, a top gastro. in Vancouver B.C., he did these tests that where surprisingly minimally intrusive. I got a call from him and he said he knew what the issue was. I saw him in the office that week. Two weeks later...surgery. He did a total colectomy, with a J-Pouch. That lasted from 1996 to 2004,  I never missed the thing! To make a long story short, several blockages later, I had to have several surgeries to remove small bowel, and then, 2008 the Ileostomy came in. Twelve years later, I am having difficulty with more severe blockages again. On my last blockage last month, I was told that my large bowel was ready to perforate. Bed rest was ordered. The thing is, I have NO large bowel! I have been writing to you from bed with another blockage. I refuse to go to my local hospital because of there lack of knowledge and the crap I have to take from them!!! I am not a text book case, and they can not think outside the box.  My tummy always feels as tho I have been badly beaten by a professional boxer. I have some problems with my eyes. I had a blind friend growing up. I will never forget him telling me the time, so proudly, from his magnificent watch! 

Anyways...You ask about the water temperature? The difference is, which  is easier to feel cold or  warm water in the bag.  When I do not bother to put a light on in a night time emptying session, I feel for the height, the output is in my bag then adding the cold or warm water can be felt going into the bag by my tummy and my hand or my when it reaches my stoma, I try not to put it in water higher than my stoma. It allows for shaking room. I also would put my hand on the bag above the output level to determine where the level of output is  before emptying. Then I feel for thin or thickness of output based on how it moves in the bag  or with a swish or a push. I can judge how much water to put in by approximating the level before hand. I may measure the amount of  room left in the bag by fingers up to my stoma area, and then judging where that level is from the end of the bag, add water to  the bag once the bag is ready to have water added. The thicker the output, the more rinses it may take. I think you could "hear" if the output is thin or thick by how quickly it falls into the toilet. Rinsing is a personal decision for everyone, not to mention convenience, but I do it because I worry about odor. I would  hate to roll the bag up and have some of the output left hanging around the opening and getting it on my clothing. It was trial and error for what l I know. What I have learned since is thanks  to Eric, and the input from others here. I am talking about these things for the first time in my life. Well, I always could talk to my hubby, of almost thirty years, but he died five months after my ileostomy, in 2009. I appreciate you sharing your story. Your Mom must have been a busy lady. As far as  using both hands to put the water into the bag, one is to help hold the mouth open, the other to manage the bottle of water. I think a person could still manage to feel when the level rises in the bag with the fingers closest to it, or even the palm for that matter. Testing around what works best is a better way to deal with this. With a test bag attached to the tummy area, it would give the person trying this out better knowledge of what works for them without the mess of a dropped bag...and they can be messy when that happens. Been there, done that! Also, a test bag on the skin may help discover a sensitivity to tapes and such before a stoma is in place and rashes can form and injure the sight. Sight impairment leads to a whole other issue when it comes to rashes and sores. 

I think you would find the velcro closure light years ahead of the clips. I was sent a clip only, sample one time and had no clue what to do with it. It also broke rather quickly when I fiddled with it.  Right now one of the bags I have in this batch, the pull down top velcro part, is not covering the same width of velcro that it normally does. Only half of it.  In order to prevent something like that getting away on a blind person after a bag change is to just check it before it goes on the tummy.  Just make sure all system are up and running the way they should be. I have never had a velcro closure fail, and, even at a shorter  coverage, it has still not failed. Later... Linda

Linda


ReplyQuote
bg99
 bg99
(@bg99)
Registered
Joined: 1 year ago
Posts: 4
17/02/2019 11:03 am  

Hi, thanks for starting this thread. I’ve had an ileostomy since 1986.  I’m now 73 years old and had a stroke in 2017 (my son is writing this post). My vision loss started around 13 years ago, due to optic neuropathy, after a series of transient ischemic attacks (TIAs). So, these ischemic problems have been going on for a long time (I had my first blood clot when I was 27). The stroke has primarily affected my communicative abilities (I have difficulty finding words, otherwise known as aphasia). But it also further affected my vision.

I’ve been legally blind in both eyes now since 2014. Since then, managing my ileostomy has been a constant worry for me. I stopped changing my appliance on my own about a decade ago (my wife has done it since, especially as I’ve dealt with severe prolapses and hernias over that time).

My son and I have found a few articles from nursing journals focused on ostomy care for low vision and blind people, but I’ve been looking for comments directly from low vision and blind ostomates. How do others empty it? Is there a way I could ever learn to change it myself again? I’ve never had comprehensive care to help me tackle these obstacles (I’m in Ottawa, Canada) other than surgery to fix my stoma. There really hasn’t been much proactive support from professionals.


ReplyQuote
john68
(@john68)
Registered
Joined: 2 years ago
Posts: 1273
17/02/2019 12:39 pm  

Hi bg99, I have looked up to see what support may be available and am posting this link,

Support for a Blind Ostomate

Being a veteran ostomate I am sure you have faced many challenges over the years and having the support of loved ones is so important. I wish you well and their is always a way round problems even if the path to find the solution can be long.

ileostomy 31st August 1994 for Crohns


LK, zhtfreak and bg99 liked
ReplyQuote
bg99
 bg99
(@bg99)
Registered
Joined: 1 year ago
Posts: 4
17/02/2019 5:32 pm  

Thank you. It will require a lot of work to get the health professionals involved consistently, but it must be done. 


LK and john68 liked
ReplyQuote
zhtfreak
(@zhtfreak)
Registered
Joined: 1 year ago
Posts: 27
18/02/2019 5:55 pm  

Hi BG99, 

 

Thanks for chiming in. Your post and the link John shared let's me know that it's not just me. We're a subset of a subset, but there is a need for more info in this case. 

 

I'm trying to research some of this to help Eric put together some info that can be shared here. I'm so glad he is open to this. 

 

There is a lot I don't know from the ostomy side since I only have my childhood experiences to go on. There is probably a lot more in the way of supplies than what I used. How do people make connections to local resources. I'm trying to come up with a way to connect with someone in my area who could show me some of the supplies to help me with my research. There's only so much I can gleen from the short product descriptions from the suppliers' websites. If I could get my hands on this stuff it would help a lot. The UOAA says there's a support group in my city, but the contact info appears to be out of date because I sent an email and never got a reply. I know there are people who specialize in ostomy care, but I don't know how wide spread they are. Someone like that would be ideal to connect with, provided of course that they wouldn't get that deer in the headlights look when I tell them I'm blind and am looking for info. I could probably come up with some good tips to empty the bag, but right now I have no idea how we could do changes on our own. That's not to say there isn't a way, though. 


LK liked
ReplyQuote
zhtfreak
(@zhtfreak)
Registered
Joined: 1 year ago
Posts: 27
11/03/2019 4:56 pm  

Hi all, 

 

Somewhat relevant question: Anyone ever been to a support group? I'm thinking that might be a good way to connect with someone for research purposes. Maybe someone there could show me some of the supplies so I can start putting together some tips to share with ostomates who are also visually impaired.  

 

I hit the Google a couple weeks ago and it looks like there might be a support group that meets pretty close to me; actually a 10 minute bus ride away. Since the page lists 2018 meeting dates and presentation topics, I'm thinking it's a currently active group. The contact info listed the same person I emailed a couple months ago and never heard back from, but I haven't called the number they list either. Still trying to figure out the best way to tell them what I'm looking for without scaring them off. 

Of course the flip side of going to something like that is that it could bring back all the memories of the humiliation I felt as a child not being able to care for my ostomy on my own, Although That's also why I really want to try to find some ways around that for others. Double edged sword. lol 

 

Thoughts? 


LK liked
ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2290
12/03/2019 10:43 am  

A support group can be a way to learn more about supplies, however, I would suggest going when they have a "manufacturer day" or "product day", as regular meetups don't usually involve showing off supplies. 

If you do end up going to one, please share your experience with us. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


LK liked
ReplyQuote
IleosTony
(@ileostony)
Registered
Joined: 3 months ago
Posts: 71
01/05/2019 8:58 am  

Hi @zhtfreak. I'm also blind, and I have to rely on my wife to change my pouch, but I can empty my own pouch. I use the Coloplast Sensura Mio bag with soft outlet. My issue with this bag is that the wafer is big and kind of goes over my incision, which is a bit concave, making maintaining adherence something of a challenge, so I'm looking at trying other pouches. What I love about the Coloplast Sensura Mio line is that the opening at the bottom is a soft outlet that is quite narrow. It basically forms a spigot or spout at the end of the pouch, making it possible to funnel the output into the toilet, cutting way, way down on messes. I still have to be careful not to let the outlet make any jerky movements or touch the rim of the bowl, but it really makes emptying the pouch tons easier than the roll-up outlet does. This product is designed for high output, though I do try not to let it get too full.

 

Changing my appliance myself is a dream of mine that has yet to come true. I've only had my ileostomy for about 5 months and am not even sure which appliance I'll end up using long term, though ideally it will have the narrow, funnel-type outlet that makes emptying the bag super easy. If I ever figure out how to go about changing the pouch myself, I'l gladly share how I do it.

 

Eric, this site and your videos have been such a blessing. I was thrilled to find this forum as well, and I hope to contribute and learn, especially with regard to the issues those of us who have low or no vision have. Thank you for creating this ostomate's haven.

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


ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2290
01/05/2019 11:10 am  

Welcome, Tony!

I'm so excited that you've found this thread! I really do want to put together this article, but time has not been on my side this past little while. That said, if you and zhtfreak want to continue to share your experience and tips on this thread, it will help me compile information on my end. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


john68 liked
ReplyQuote
IleosTony
(@ileostony)
Registered
Joined: 3 months ago
Posts: 71
01/05/2019 12:00 pm  

Hi Eric,

 

The biggest challenges with regard to changing an appliance without sight are cutting to fit and lining up the opening with the stoma. At present I believe that in the beginning, while the stoma is still shrinking postoperatively, anyone who can't see needs sighted help. After a while, assuming the stoma size does stabilize, measuring it and then obtaining precut appliances would probably eliminate the cut-to-fit issue. I'm still at the point that I detest touching my stoma. It feels, frankly, slimy and disgusting to me, but I know that I'll have to get over that if I'm ever to be able to change my own appliance without sight. I don't want to use gloves, as that would take away from the sensory input I feel is critical to performing the task correctly. First, though, I need to get a better handle on which system I want to use permanently. I may stay with the one I use now, but I am planning to try others with a better wafer shape and size and/or possibly a 2-piece system. I do have a couple of questions about 2-piece systems that I couldn't figure out with certainty from the 1 versus 2-piece video:

1. Is it possible to rotate a pouch on a 2-piece system without removing the pouch?

2. If I were to use a 2-piece system, would it be easier to line up the hole with my stoma because there's actually an opening there without plastic? I hope that makes sense.

 

Again, thank you.

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


ReplyQuote
Page 1 / 2
Share:

  
Working

Please Login or Register