My mother had an emergency colostomy in the summer of 2024. She had suffered from ulcerative colitis for years in order to avoid a colostomy. However, due to a blockage, she went into surgery at 79 years old to receive a colostomy. First of all, she did not have time to mentally and emotionally come to acceptance of this, and since she fought for years not to have one, you can imagine how she felt afterward. I couldn't even get her to look at the surgery site. The worst issue is that due to a reaction to medication, she vomited often and pulled internal sutures in a way that created a more "innie" stoma. I really do not know why the hospital let her leave without making sure she could change her bag herself, but my mother insisted on heading home for healthcare. I was taught as the "adult child" how to assist, but assisting became "I can't look at it, please change it." Now, almost one year later, my mother is willing to change her own bag, but she insists that with her cataracts, she cannot see the stoma to place the bag appropriately. I will be honest... it's even hard for me to see, as most bags have that plastic film that reflects light, and her stoma is about less than the length wide of my thumb to my thumb's first knuckle. So, I find it difficult to place, and my mother's stoma is almost an underside (as in it is on a roll of my mother's abdominal skin that faces downward). I really do not know what to do. I have been changing my mother's bag every third day since June. I know that this makes her dependent, and I do NOT want to encourage that. She is scared to death of her stoma, and I've tried to help her feel less afraid of it by noticing that she can touch the area and nothing bad happens. At the same time, she does not need to accidentally stick the barrier (donut) on the stoma if she cannot see it to place her bag. Do they make some sort of "outsie" rimmed guide that could help a person slide their bag opening across and avoid accidentally placing the sticky side of the barrier donut on the stoma? I mean, how do people with vision problems do this??? I would appreciate any help from the community that faces these types of challenges. I know this is for forging friendships, but I also know that the forum is for help as well. I want my mother independent again, but I also do not want her to feel abandoned, and apparently, hospitals and doctors bend to insurance rather than being able to assist a person in preparing on how to do their own bag changes and mentally accept the new change to their bodies. Thank you for any assistance you can give me in ideas on how to help my mom become more independent when she cannot see well (and yes, we are scheduling the cataract surgery this summer).
Good evening
I have read your post and think I understand the practicalities and some of the underlying issues.
May I suggest that you, as your mother's adult carer, go to her GP and request a home visit by a stoma nurse.
In the meantime, I would encourage you to approach the main bag manufacturers and investigate two-piece systems. The reason being that perhaps you could apply the base plate, which contains a raised ring connection for the bag to append thereto, making it less frequent to change and less of a 'take-down' of the entire stoma changes. You may find this may ease the resistance of your mother's attitude to her stoma and allow your mother to become used to passing a new bag over the base plate ring and clicking on a change. You may find that this is less distasteful for your mother and relieves your own frequency of input, perhaps resulting in encouraging a little more independence for your mother.
Manufacturers are only too pleased to send out samples for patients to try, for even when we find the practical specifics of appliances, we will then hone our choices, and it does become a personalized preference in addition to the types of products used.
Overall, I believe if you are able to access the good auspices of an experienced stoma nurse with a vocation for her role, that a number of products may be recommended which will have the potential to help you both.
Rest assured, there is a solution!
Virtual hug - for you must be finding it hard on a number of levels, but do not despair.
Others, too, will come forward to offer suggestions, I am sure.
[Personally, I do not use a two-piece system, but members on this site do!
BW
~ ~ ~ ~ ~ Jayne ~ ~ ~ ~ ~
UK
I will refrain from specific product recommendations as your mother's specific stoma/site and nature of the stoma need sighting in order to recommend the most propitious product/application. Good luck.
J.
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Thank you for your quick reply. I'll discuss irrigation with my doctor. I'm sure it would be down the road. My output is still very liquid. It's all so unpredictable at 6 weeks post-op. I have such a fear of constipation as I struggled with this forever. I used a fiber source to thicken the stool but it hasn't helped very much. I guess I will continue to be positive but it is a bit of a pain. This website is great and everyone is so informative. Cheryl
Jayne's advice is excellent. A stoma nurse will be a great help and is probably your best resource. Mine pushed me hard to be independent.
I was taught to change my appliance in front of a mirror, which greatly enhances visibility. In her case, maybe a magnifying mirror would help.
I'd also consider finding or making a cardboard tube the same diameter as her stoma. Then, using a 2-piece system, the tube could be placed over the stoma, and the baseplate (wafer) could slide down and be positioned accurately. Someone makes a tube like this designed to capture output while you change your appliance. You might buy a package of these and reuse them (unless, of course, there is output). But a homemade version will likely work too. Your concern is positioning, not output.
Learn more about ostomy accessories, and when to use them.
That is a wonderful suggestion about the tube. Yes, I have called to request that her surgeon send the request over to the ostomy nurse's office so that my mother's insurance will cover her cost of going to the nurse to learn. I am hoping that my mother doesn't buck that because then I'd have to be establishing some tough boundaries. I want my mother independent, and I don't want to lose my identity. I was once her daughter, but now I am the bag changer. I know it sounds incredible, but literally, I have noticed that I am more known as that..."she's my bag changer," as she tells my brother. My title should be "she's my daughter." I only put this remark in the reply so that if anyone else reads it and is doing similar with their adult children, that the person will stop and think. Susan, I do thank you for your assistance in the reply and encouragement through your advice.
I think she has a 2-piece system if that means the donut-shaped barrier that is then placed on the bag. The donut-shaped barrier is sticky on 2 sides. The first sticky side is placed down on the actual adhesive to the bag. Then the second part of the donut that is sticky is applied to the skin at the same time that the bag is applied to the skin. She also has the C-Shape extra secure adhesives to place around the bag once it is placed on the skin. So, normally, her steps are the following: we put the sticky side of the donut barrier on the sticky part of the bag and shape it to the size of the stoma. Then, the area gets cleaned on her skin, a barrier spray is put on and dried, and then the sticky side of the bag/donut is applied to the skin with the C-shape adhesives additionally placed over the edges of the bag to secure it more to the skin (otherwise, with the roll of the skin, the bag tries to pop off). I think my mother's preference is every 3 days, but she insists it is because she has to do Miralax and therefore has to be changed that often. I recall that the nurses first recommended trying to go 4-5 days before changing the bag. She does empty her own bag. Is there something different than that, that is a 2-piece system bag?
How to Stay Hydrated with an Ostomy with Collin | Hollister
Donut barrier is a different thing from a 2-piece system. I'm really glad you're using a barrier ring. But a 2-piece system splits up the 1-piece system you've been using.
The first part is the baseplate or flange that sticks to the skin.
Once that is stuck to the skin, you snap on the bag. This makes it easier to change out the bag without a whole system change.
I pulled pictures from the Coloplast site, but all the major manufacturers offer 2-piece systems.
There's nothing to block your view when placing the baseplate, so it might be easier for your mom.
Adding a note to you personally, I'm glad you are setting some boundaries with your mom. She needs to be independent with bag changes to feel confident going out of the house and having a life!
Hi Osto, kudos to you for helping your mom. It sounds like you have a 2-piece system, so if you do, stick the base onto your mom maybe while she is lying down so that the skin is flat, then stick the bag on. I use a 2-piece system from Convatec, and before I had cataract surgery, I would have gaps on one side or the other that I would fill in with paste, but not anymore. Maybe try a different 2-piece system that has the Tupperware-type closure to just change out the bag.
Can you draw a ring around the outside of the stoma until she gets the feeling for where it is?
Learn all about skin barrier extenders.