Managing a Colostomy with Mobility Challenges: Tips and Experiences

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This is Jennifer. I had an ileostomy for 7 years and then changed to a colostomy 6 years ago. I had perianal cancer from a very rare skin cancer. I had the removal of the cancer and reconstructive surgery, which involved many skin grafts. The surgery took ten and a half hours, and I was not allowed to lay on my back or walk for two weeks. I could only move from one side to the other with assistance. When I got home, I had six months of not being able to sit or lay on my back. So I learned many tricks and tips.

TIP 1 - Take a photo of your stoma during your change (clean). You can show it to your stoma nurse or doctor during appointments; it may save you from having to undergo a change, which always seems unsuccessful. TIP 1A - If attending a family or friends' function, don't hand your phone over for them to scroll through to view your pets, kids, cars, etc. They might get a terrible shock 😲.

TIP 2 - Photo number 2: this is my change bag; it is always fully stocked with several full changes. I always take it to hospital visits, doctors, stoma nurses, and emergencies; it means I always have my own products. I take it on trips; remember to remove the scissors if going through security. The only thing that I need to do a change is water. I also have it with me when I change at home.

TIP 3 - Because of my lack of mobility after the surgery, I had to learn how to change lying down. When I got home, I wasn't encouraged to stand for too long; it put too much pressure on the grafts, so I had to lay down to change. The doctor approved that in preference to standing; I had 8 grafts. So I got a Chavelle mirror (see photo 1), had a container of water beside me on a bedside table, put blueys under me, and a warm hot water bottle beside me to put my bag and ring on to make them pliable. I tilted the Chavelle mirror over me. Then I was underway. I had a super high output stoma, and by being prone, it seemed to help sometimes, but at least I was in a position to stack cloths around it, and it allowed me to take my time and not try to rush putting a bag on while the stoma was leaking.

I hope that some of this may help someone out there.

I must apologize for being so long-winded - hugs to you all, Jennifer XXX

Thanks for posting this, Jennifer!

Hubz and I were just discussing the challenge of his needing to lay back during a bag change as 'Sammy' likes to come out to supervise the activity when he's standing.

Having a flush, oval stoma, the 'out' version is a completely different size, so it's not like he can just place the wafer over that rascal.

I'm always here to help when he has to lay back to get Sammy to recess back out of the way, but getting the wafer placed well requires a visual, so your mirror technique is a great idea for our dilemma!

Enjoy your day, and thanks again!🌻

If I can ever help, just let me know. I didn't go through my process of changing, but I do have a few other suggestions. Take care.

Another mirror option...

I have a drain placed in my groin. It is literally in the skin fold created by my muffin top, and there is no way to see it or change the bandage without a mirror.

I am using a laptop stand designed to hold a laptop while you are in bed. Instead of the laptop, we put a large mirror tile. The gooseneck on the stand lets me position the mirror anywhere I need it.

All good info! For the phone, mine has the option to “Hide” the photo, and that has really helped me feel more comfortable about sharing pics! I also use a mirror; I do mine standing and use a mirror balanced on the sink, and that really helps me get it on in the right spot.

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