I am brand new to this and functionally blind. I am looking for any tips I can use to learn how to manage my colostomy given my low vision?
What can I tell the people helping and teaching me to help them help me.
In Triangle area and working with Duke if anyone has connections here?
Oh and they didn't investigate the blockage during the surgery, apparently want to have Gastro do a colonoscopy...at 89 not sure I want to bother...
Thanks
Wow Nana,
This is a tough one. Praying you have the resources and support system in place to help you get through this.
If you are able to care for yourself, in changing or emptying pouches, I would get a stand-up magnifying mirror to help. I was given one in a kit from the hospital at the time of surgery. I found I did not need it once I got home. I have a large mirror in my bathroom but in your case, with limited vision, it just may help some. Maybe even a lighted one.
Depending on your type of Ostomy, needs are different!
Do you have a Colostomy or Ileostomy? You came to the right place for answers. Everyone will chime in that can offer any tips.
Take care,
Puppyluv
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First off, this is a pretty cool site with 37,000 members who truly understand you.
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Many come here for advice or to give advice, others have found good friends, and some have even found love. Most importantly, people here are honest and genuinely care.
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Hi Nana,
First, I hope you are able to keep yourself safe during this crazy pandemic. It is a scary time to be living in, especially with hospital visits.
I have not seen your question on this site before, but maybe some of the members who have been around longer will have, and have some sage advice for you. I would suggest that you start by looking at old forum topics, and see if that gives you any help. Your question is so broad that it's difficult to know how to answer. Puppyluv had some really good suggestions, and I'm sure others will as well. One suggestion I would make, and it's so darn obvious that I don't know why nobody at the hospital told me, has to do with softening the inside of the flange hole. After you cut the flange to fit over your stoma, you will want to slightly soften the inside of that hole. The easiest, and most efficient way is to put a damp washcloth over your finger, and use that finger to rub around the inside of the hole a few times. That will soften it, and prevent it from rubbing against your stoma and causing it to bleed. I have seen hospital staff use their finger, or the side of a scissor blade, but nothing works as well as a damp cloth over a finger. Nana, if you have any specific questions, ask away! We will do our best to help.
Laurie
Hi Nana,
Sorry for my ignorance here, but what exactly do you mean by "functionally blind"? I Googled it and got 12 different answers, ranging from "the same as totally blind" to "has reduced visual acuity". Do you change your barrier by yourself.....or does someone do it for you? Guess I'm not seeing a middle ground here.....although I guess someone could assist you in changing it. So what can you do vice what has to be done for you? Once we know that we can bang heads and figure out how to help you.
Thanks,
Bob
I agree with Bob. Maybe a little more information will help. What kind of help do you have, if any? Do you live alone? Also, how much vision do you have? Please ask specific questions. Best wishes and stay safe.
Padfoot, thanks for that tip about softening the flange. I had not heard that.
Is it macular degeneration that has caused the low vision? They have special glasses for that condition. Magnifiers will also help and telescopic devices mounted on the glasses. Surely, a device will be found that will help you out. Best wishes.
Nana, I too am from NC and a DUKE ileostomy patient. My circumstances are not normal so I won't go into them here, but I can certainly apply what I have learned from this community of considerate members if you're interested. Hopefully, your surgeon, knowing your circumstances, was able to create a stoma the size that will allow you to buy pre-cut appliances so you won't have to deal with cutting them to fit. I use only a pre-cut Sensura Mio and a Coloplast barrier wipe. I use Medipore cloth tape if it is humid to avoid coming unglued. I use essential oils or baby oil (which also helps move the waste out of the appliance) inside the bag for odor control, just a few drops. Far less expensive than "deodorants" offered by medical supply houses. I don't use seals, although most do. You will figure out what works for you as you move through the process of becoming comfortable with taking care of your ostomy. FREE samples are available from ALL suppliers, you just need to ask for them on their individual websites or via phone. I'm sure many here will offer opinions on all of the different items they use and how effective they are. If you shower with your appliance on, you will want a waterproof tape to help keep the seal, and plastic wrap to cover the appliance to keep it dry. Or, you can dry it after with a hairdryer, but I have never tried that so I don't know how well it works. I shower daily without the appliance so that causes an extra expense above what insurance will cover for what they consider "necessary" supplies. If you are able to see your stoma, and your hands are able to hold your appliance steady as you place it around your stoma, you will want to press around the stoma edge and along the edge of the appliance to help secure it in place. Barrier wipes help protect the skin under the appliance. Anytime I have soreness and damaged skin under the bag, I use Anacept which is a wound gel from Anaccapa Technologies, applying it sparingly on the damaged skin, leaving it for a moment before rubbing it in and drying the skin with a gauze pad, then using a barrier wipe before applying the bag. I don't know if any of this helps, but please know that everyone here on this site is helpful and willing to share their experiences with you so ASK AWAY. There's a LOT of knowledge and experience out here.
PEACE
Dadnabbit
Thank you so much for the reply. Glad to hear you are doing well. Yes, every circumstance is unique. We are learning more every day. I will see the surgeon tomorrow and see if they have any ideas on the stoma. I am trying to follow your instructions on showering... This was all very helpful.
I have the same problem, I am totally blind in my left eye and have glaucoma in my right eye.
Up until now, I always can empty my bag but had a significant other that put a new ring bag on for me while laying down. He has some health problems and can no longer change my bag.
Does anyone know how much it costs to get someone to come in and help me with this?
Hi,
I was going to write in myself!Although I have had my ileostomy since 2001, I am rapidly losing vision (completely blind in one eye and severely limited in other). Trying to figure out how to change the bag without seeing it!!
As for how to help others help you, you need to be vocal no matter how graphic. People need to know what you need from them, in as much detail as possible. I'm still working on that part myself!!
If there is any advice anywhere on how to change an ostomy blind, I'd love to know
Good luck, feel free to reach out!
Lori
I can completely relate! Blind in right eye, glaucoma in left! My gastroenterologist has an ostomy nurse on staff, maybe you should call and ask an ostomy nurse if there's a visiting nurse who can help, if insurance will pay (if you have insurance) and, if not, what the costs are.
Good luck. Keep me posted!!
Lori
