Anyone else have an elderly parent with a permanent ileostomy?

I have had a permanent ileostomy for 33 years. Here are some tips;
Liquid output is high. Thicken output with non greasy foods ie pasta, dry beans, cheeses and potatoes. Use Imodium to slow the process. Be watchful of dehydration, drink Gatorade or similar drink. Experiment with different ostomy appliances, ie two piece. Wear an ostomy belt to keep the pouch snug against the body. Use paste to fill in irregular skin. Use Hystatin antifungal if needed on irritated skin. Hope you may find these tips useful.

I would ask if Mom is considered 24/7 care. If so, they cannot send her home if no one is there with her 24/7. Its called an "unsafe discharge". You need to explain to them ur not here permanently. Your Mom may not be able to afford help.

IMO, I don't think an aide (CNA) can be responsible for the bag. They are not medically trained. You would need to hire an LPN at least to deal with it and they are at least $30 an hr or more.

Alva is a retired nurse so hopefully she will chime in especially if I am wrong. You need to find out why they are having such a hard time with leaking. I read a little about this and if permanent its just a matter of emptying the bag and your Mom should be able to do that for herself. (Some upkeep too) Just read the main problem with leaking is the bag gets too heavy and breaks the seal. So needs changing regularly. Your Mom really needs to be able to deal with this. An aide alone will cost you at least $15 an hr x 8 hrs =$120 a day x 7=$840 a week. Can Mom afford that. And again, not sure if an aide is allowed to do this type of thing. Mom comes home, you may end up being her care giver. You can request in home care but that usually only lasts so long. Medicaid maybe able to help but they may only give so many hours day and you must have no assets and monthly income can't be too high.

My MIL had a bag temporarily. She was 70 or so. She had to take care of it herself. Not sure how much help FIL was since he golfed every day.

Get her an ostomy bag that connects to a drainage bag through a longish tube - kind of like the ones hospitals use for urinary catheters. It will have more storage for her urine and she wouldn't have to empty it as often. The goal should be to empty the "bag" every 2-4 hours while she is awake and to have enough storage to not need to be emptied for 8 hours. It might also help to put mattress pads on her bed that have plastic on the back to absorb any accidental urinary leakage.

If she returns home, be sure she is referred to a skilled home health agency that has a certified wound and ostomy nurse on staff. Or contracted with the agency.
An ostomy nurse who works in the community should have ideas about. how to manage the ileostomy at home that are sometimes more practical than what is required in a hospital or SNF setting. And know how to get your supplies set up.
Have them send home ostomy supplies with her AND find out about ordering them in advance, for coverage by Medicare. That gets tricky, and the wound nurse and social worker at SNF need to get this going for you.
Finally, see if there is an ostomy group in her area - experienced people can have good suggestions.
A caregiver from an agency may or may not be able to put hands on the ostomy. But they can help her to the toilet to empty the bag, or to empty the drainage bag. Your mother can teach the caregiver what supplies to lay out on a table or countertop, so all is ready when your mom changes the bag and cares for stoma.
As mom gets to be eating better, and more of her preferred foods, the output may become thicker...a big advantage of being home.

My dad is 86 and has 2 ostomy's. A poo bag and a pee bag.

When he had the first surgery (pee bag) we had leaks NUMEROUS times a day. I pretty much had to move in with him to be there just for bag changes. I was on the road all the time if I hadn't just decided to stay with him.

After his surgery we were sent home with flat wafer bags and continued to fight the leaks, every day all day long. We were both in tears.
We visited wound care several, several times and she NEVER told us about deep convex bags. She just kept putting on paste and putty and putting on the flat wafer bags again. So we battled this for almost a year.

Then we had the poo bag surgery 1 year later. We were sent home with deep convex. What deep convex? Never was told about such a thing. Never had heard about them. And guess what.......Never a leak!! Well, maybe once or twice.

After that I changed dad over to deep convex bags for both ostomy's, on my own and low and behold the leaks pretty much stopped. Dad got his independence back and I got to return home.

I still change his bags for him every 4-5 days. He has nimble fingers and has a hard time with this. But he empties his bags when needed, by himself and hooks up his night bag by himself too.

Long story short, I don't know what type of bags you use, but maybe get a deep convex sample and try it? We also use barrier strips to help secure everything.

I don't know some of these wound care nurses don't offer different types of bags. Seems like, if they can just slap something on there and get us out of the room for the next patient, they're happy. We put up with leaks for almost a year. Thank goodness for google. That's where I've learned what works for us.

Dad lives by himself, still drives, cooks, cleans and puts out a garden every year.
I total understand about your mom wanting her independence as well.

Try some different types of bags, and I'll keep y'all in my prayers.

Hugs to you and your mom

It is very traumatic for an elder to leave her house. It will be the beginning of many problems. It is best to get help and her staying at her house. The hospital decided to install a bag to my mom and I it was not the best solution. Once the urologist took bag away, my mom
went to normal stage.

I hired a live-in aide for my elderly aunt. It was difficult to manage it long distance. You mother may need a nurse, if there are medical procedures to do. You can hire aides/nurses through an agency or on your own. It's complicated to do it on your own. My husband is an accountant, so he helped set up the payroll taxes, withholding, unemployment insurance, W2 forms, etc. I wouldn't reccomend this approach without the support of an accountant. Be honest with your mother about how much you can do, once the emergency has passed, if she's living at home. You may also have to help her hire people to do the maintenance on her home, gardening, etc. And she may also have to hire people to help with cleaning, laundry, shopping, etc. She should think of simplifying her living situation, maybe a 2 bedroom condo so that she can have a live-in aide? It's too bad that she can't live near you. That also makes things much easier to handle. All the best to you both!

@Carolyn2022, please forgive my ignorance if I misunderstood your original post, but:

Shouldn’t you be hiring a person to help your mother overnight, rather than during daytime?

She apparently does fine during the day, but it will be so hard on her to awaken herself every hour and a half, or every two hours during the night in order to change her fittings. If you have an overnight aide, your mother will be able to sleep soundly until awakened by the aide for the required change, then be able to sleep again, secure in the knowledge that her human alarm clock will awaken her at the appropriate times.

Good luck with this difficult situation, your mom sounds like a bit of a pistol, and it sounds like she really will get a handle on her new situation. Fingers crossed!

Carolyn2022: In order for your mother to live independently, she is going to require in home care due to the fact that she is routinely getting little sleep in order to take care of the ostomy issue.

My 91 year old mom has a colostomy bag. She had to try a few different types before one was found that works.

Mom gets hers appliance from Edgepark.
She’s been in the hospital/rehab quite a few times from falling. We always bring her own appliance and other Ostomy needs.