New Ostomy: Any help would be appreciated

Posted by zxyoma @zxyoma, Jul 15, 2020

I’m new to this site, and new to having an ostomy. My surgery was on May 10th, (Mother’s Day). I’m still experiencing lots of leakage no matter what I try. I found a support group not too far away, however they don’t meet again until September, I’d like to talk to someone before that. Any help would be appreciated.

Interested in more discussions like this? Go to the Ostomy Support Group.

dancing1 | @dancing1 | Sep 6, 2021

Thank you so very much. Can anyone attend?

Colleen Young, Connect Director | @colleenyoung | Sep 6, 2021

In reply to @dancing1 "Thank you so very much. Can anyone attend?" + (show)

Yes, anyone can attend. I hope you can make it. Here's a time zone converter so that you can find out the start time in your area. https://www.timeanddate.com/worldclock/converter.html

6pm MT (6pm PDT, 8 pm CDT, 9pm EDT)

dancing1 | @dancing1 | Sep 6, 2021

In reply to @colleenyoung "Yes, anyone can attend. I hope you can make it. Here's a time zone converter so..." + (show)

I can’t seem to get in this morning. Can I attend your zoom tonight

Colleen Young, Connect Director | @colleenyoung | Sep 6, 2021

In reply to @dancing1 "I can’t seem to get in this morning. Can I attend your zoom tonight" + (show)

You're in, Dancing1. I see your post. The Ostomy Zoom meeting is tomorrow night (Sept 7). Please register by sending an email to ARZMCOSTOMYSG@mayo.edu

Becky, Volunteer Mentor | @becsbuddy | Sep 6, 2021

In reply to @trishanna "@kenc @dancing1. In my opinion, my obgyn surgeon or staff caused my problems. We do not..." + (show)

@trishanna just curious, why do you think the Obgyn and staff caused your problems? If i truly felt this way, i would not go back to the same surgeon. But have you had a chance to talk with him? Just to discuss your problem now and to hear what hr has to say. Go in, very polite and assertive (not aggressive). See if it works
Let me know!

cnh | @cnh | Mar 26, 2022

In reply to @trishanna "@kenc From all my research, in order for the colon and a vaginal fistula to heal,..." + (show)

My VVF vaginal fistula is in the bladder. I've had 3 surgeries to close it up and all failed. The last one was done by the Head of Urology at UTSW. He didn't know why it didn't close up and failed. Mine too was from a hysterectomy a year ago, probably an unnecessary operation.

Colleen Young, Connect Director | @colleenyoung | Mar 30, 2022

In reply to @cnh "My VVF vaginal fistula is in the bladder. I've had 3 surgeries to close it up..." + (show)

@cnh, what is the next step?

dancing1 | @dancing1 | May 22, 2022

I now live in Mesa Arizona and I do an Ostomy newsletter for a support group in Northern California that I was President of for five years. We moved here three years ago and prior to covid was only able to attend once here. My Northern California group meets on zoom. If you would like me to send you are newsletter please send me your email address. It is filled with great positive articles for ostomates. Linda Fleig.

susan_f | @susanbfoster | May 28, 2022

I've had an ileostomy for 20 years now, and while it took time to get the "fit" right, once I did, everything was better.

Couple questions:
1) Have you been in to see your Ostomy Nurse? They are trained to problem solve issues and they have the tools to help.

2) Were you told to keep an eye on the size of your stoma? It gets smaller as the swelling after surgery goes down, and you have to cut the opening smaller

3) What kind of leakage are you having? Is it leaking around the stoma and damaging your skin? Is the wafer coming off your skin and stool is leaking out completely? Is it after 1 day, 2 days....

debnovie73 | @debnovie73 | Jan 10, 2023

I have had a colostomy for 3 years. I use the Convatec wafers and bags. They have worked so well with no leakages. After a few days the wafer wax does tend to melt onto the skin but then I change to new one. It is not easy. I have had 5 surgeries-two hernia; 1 twisted colon surgery; two bowel obstructions; still have a large parastomal hernia. But you just move on and do your best.