Struggling with Urostomy Bag Placement After Weight Loss and MS

Jul 17, 2023 5:53 pm

Wow. First of all, everything I typed has disappeared so I'm going to make this short and sweet.

I had my urostomy surgery 7 1/2 years ago, and I seem to be running into problems with bag leakage. Using the Coloplast SenSura Mio deep convex one-piece transparent bags. I have lost about 30 pounds, and I am wondering if this is a cause for a change in my stoma. I also have multiple sclerosis, so "siting" the bag has been an issue. I have tried standing up, have tried using a mirror, lately that has all been a fail.

Below is an example of what I went through last night. Almost getting to the actual stoma, but not quite.

So, after all of this last night, I called the ostomy nurses and I guess left a pretty pathetic voicemail message because they called me immediately this morning. My question is, how can I put the dang bag on correctly? Does anyone have any tips or thoughts? I do have the Stoma Jeannie, and I think it will help for the two-piece.

In advance, thank you so much for your help!!

Dripping in Boston

Jul 18, 2023 3:17 am

Oh, bless your heart Mass! How completely frustrating for you! I do believe you are correct in that losing weight does change the stoma. I am no expert, so I would suggest seeing your doctor and getting a different bag that fits better. And I absolutely love Convatec. They have sent me lots of samples and are wonderful to talk to. I wish you luck. You seem like a great gal with a stubborn ostomy. Jeanne

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Jul 18, 2023 3:36 am

Hi M.

Looks like you are talking about urostomy there. I can't help much with that, but gaining weight or losing weight certainly affected my appliance set up.

Jul 18, 2023 3:07 pm

Weight loss/gain can definitely affect your stoma area, especially if it's a very quick loss/gain. I'm no help on the urostomy part but if it's like my colostomy, it doesn't have to be exact to work properly.

Audrey Warren
Jul 18, 2023 3:34 pm

If you wanted to lose the weight, congratulations. If you didn't, see a doctor. Contact a WOC nurse to help with choosing a new appliance.

Your body shape has changed and so have the contours of your stoma.

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
Rose Bud 🌹
Jul 20, 2023 5:08 am

Like most have said, losing weight can shift the stoma size. I've lost 60 lbs in 2.5 years and had to try a few different bags. So if you haven't already talked to a nurse or tried different bags, I'd start there and good luck!

Jul 23, 2023 4:53 pm

Weight loss and body change will do it and so will the heat and increased activity. I use Convatec deep convexity with my uro. You might need to try a different brand.

Jul 24, 2023 2:25 am

Hi everyone! After I wrote this post, I left a pretty pathetic message for my wound, ostomy nurse, and I was able to see them the next day. I am now in the middle of testing a bunch of other products to see if one will work a little bit better, and Convatec is looking like it's winning so far.

Thank you all for your thoughts. It means a lot. Take care and stay cool!!

Jul 24, 2023 2:27 am
Reply to jeanneskindle

Aww, you blessed my heart in a nice way!!!

Jul 24, 2023 6:22 am

Massmicmouse, definitely consult your WOC every step of the way. Let him/her know after a few tries if something is or isn't working. Also, use your own judgment. Nobody knows your body better than you, and sometimes WOCs have products that they favor for whatever reason.

I had a WOC tell me that I couldn't be allergic to Hollister ceramide-infused products because ceramide is naturally produced by your body... But I know I'm allergic to SOMETHING in those products.

Good luck!