Changing my system - Do you do it alone or with help?

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1309
jalrein
Sep 17, 2022 2:01 pm

I can change my system by myself, however, if my stoma is active I have a real hard time. The only time I change myself is if I'm out of town. Otherwise, my wife helps me every day we do a change. We've developed a great system with powder, crusting, rings, etc. that work amazing for me. My wife's the greatest on the planet in what she does for me... I forgot to mention a couple things. First, I had a spinal accident 2 1/2 years ago so I need the help changing and I've never had odor from my stoma.

AlexT
Sep 17, 2022 2:50 pm

All by my lonesome. They put one on me in the hospital and I've changed mine ever since. Had a couple home visit nurses help a couple times when I first came home from surgery but they made me do it.

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Ben38
Sep 17, 2022 2:57 pm

Even when I had surgery on my right hand and could only use my left hand, which I have very little feeling in from a stroke years ago, I managed just fine. As soon as I take my bag off my stoma, it's always active no matter what I do beforehand. I've always been very independent with everything in life, including changing bags. I don't like anyone helping me.

Maried
Sep 17, 2022 2:57 pm

That is very nice of your wife. But it is always a good idea to do most of your changes yourself..unless you are disabled. Changing your bag is equal to wiping your butt, a private smelly activity. I have been changing my own bag for all these 30 plus years.

Ycitygrl3842
Sep 17, 2022 3:19 pm

I've been changing it myself ever since the surgery. My grandmother had an ileostomy, so I wasn't completely new to all of this. My fiance has offered to help me (he is very sweet). I may show him someday. We won't be "young" forever!

 

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eefyjig
Sep 17, 2022 3:19 pm

Me, myself, and I. It's not always easy, especially if it's an emergency change due to a leak and my stoma is active. It's like calming an angry alligator! I know that my husband would step in if needed, but that hasn't been the case so far. I say whatever works, and it sounds like you and your wife have a system.

jalrein
Sep 17, 2022 3:40 pm
Reply to Maried

Unfortunately, I forgot to mention that I am disabled. I had a spinal accident 2 1/2 years ago. My ileostomy has had zero odor in all the time I've had my stoma. Thank God!!!

Abefroman1969
Sep 17, 2022 3:47 pm

I mostly change my own appliance. Today, my visiting stoma/wound nurse did it for me as it was time for her to inspect my stoma after the fixing of the prolapse. I find that other than a stoma/wound nurse, most do not know what they are doing and would rather change it myself as those that don't know the small tricks almost always lead to appliance failure within 48 hours. I did the change before today's 8 days ago and was very lucky that it lasted that long, although my skin is very happy that it lasted that long after it being changed almost daily during my last hospital visit.

jalrein
Sep 17, 2022 3:48 pm
Reply to eefyjig

Eefy, unfortunately I'm disabled due to a spinal accident 2 1/2 years ago, so I need help changing. I'm 58 years old, so my life drastically changed after my accident. I played amateur golf tournaments and was active playing basketball. Those days have ended. I had to retire and have had a lot of other health issues all due to my accident. Before that happened, I was never sick a day in my life!!! Thanks for your reply and thanks for the other helpful replies you have given me to my queries.

Maried
Sep 17, 2022 4:45 pm

How do you manage to change when you are out of town? Your wife is pretty cool.

Axl
Sep 18, 2022 5:59 am

No one has ever touched mine except when I was unconscious in the theatre.

eefyjig
Sep 18, 2022 12:18 pm
Reply to jalrein

Jalrein, I can't imagine the depth of life changes that you've gone through and had to deal with. Having an ostomy is plenty itself and that's something we all go through here, but you have even more you have to deal with. I'm inspired by your marriage. That's what it's all about, being there for each other in your relationship as life throws curveballs at us.

ron in mich
Sep 18, 2022 1:53 pm

Hi Jalrein, I do my changes myself. I had resection surgery 4 years ago, and the surgeon (not the nurse) changed it for me, which felt weird to me. But he wanted to check out the new stoma and make sure all the places that were stitched were healing properly. My wife has watched me do a change, but that's about it.

IGGIE
Sep 18, 2022 2:56 pm


Jalrein, I do all my own, but the main thing is to always do it in the morning when it's still asleep. Don't wake it up.

WhirledPeas
Sep 18, 2022 6:33 pm

Jalrein, I've always changed it myself since coming home from the hospital. Honestly, it was a lot of trial and error at first. The seal would fail within 48 hours, and it was frustrating. Now, I use a concave pouch and banana peels due to protrusion (doc says that's normal for some people (?)) and use a small foldable mirror on the bathroom counter to see the underside of my stoma and bag, but I make it work. I've not had any emergencies in public, so I'm not sure how everything will play out if it happens.

Immarsh
Sep 20, 2022 7:24 am

I've had my ileostomy for nearly 60 years....since I was a teen of 15... An aunt of mine had the surgery, and she assured me that "I wouldn't have to touch it", my mother could change it for me... Hmmm, a very hands-on / 4th-year medical student on my doctor's service changed that immediately... He told me it was my new "butt", my body, my responsibility.. He set me straight...and helped me out learning how to manage it.. This was 1965 before the days of stoma therapists.. I also had very supportive student nurses (across different shifts) who learned along with me and were a great support.. So when I got out of the hospital, I was independent... At the time, I was in a back brace, and had to change in bed.. I just set up all my supplies, and managed to cope... It was much easier a year later when the osteoporosis resolved itself and I got out of the back brace... The only other time I could have used some help (but my then husband, who also had an ileostomy, refused to help) was in my 9th month of pregnancy, and my stoma was under my "not so big" belly... We set up a hanging mirror on the toilet, and I was able to see... Back then, ostomates used to visit newby patients to help them learn to manage on their own.. I did that for a long time, especially with kids and teens.... I did it one-handed for a year when I had carpal tunnel in my right hand.. And I managed the one-handed act again this year when I had to have thumb surgery... Some things are a challenge, but I've been changing independently now for 60 years....thanks to that first young doctor... Best of luck to all...

jalrein
Sep 27, 2022 2:10 am
Reply to Maried

I do the same as when she helps. The wafers are cut by my wife, and I take more than enough with me. I lie on my back in bed and make the change. I try not to eat the night before, and I eat marshmallows and peanut butter 3 hours before the change to slow output....

Dagger
Oct 03, 2022 2:58 am

Yes, my mom helped me when I first got it. It sounds silly but I was terrified of it at first, and I was also very sick and weak from cancer. But once I took charge, I've never looked back. Now I could change the whole appliance in my sleep.

l24jacobs
Nov 02, 2022 6:12 am

Changing your wafer/bag is easy.

One item that is a must for me is hydrocolloid extending tapes and hydrocolloid protective sheets.

As an ostomy patient, you should change your appliance yourself.

Organization is key.

I put my supplies for a week or so of changes in a plastic tool box.

It holds my scissors, marking pens, wafers, pouches, tapes, seals, deodorant, etc.

Be independent. It may not be a pleasant thing to do, but you can do it.