Living with Pelvic Radiation Disease and a Stoma: Seeking Support

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Brunolove
Aug 07, 2025 5:42 pm

Hello, I just joined. I have got pelvic radiation disease after rectal cancer. I had my rectum removed and am having a stoma on the left side. I developed a parastomal hernia. It is very painful, and together with stenosis in my intestines, bladder, and sexual organs, my quality of life is not good.

Is anybody else having problems with pelvic radiation disease and a stoma?

infinitycastle52777
Aug 07, 2025 6:40 pm

I don't have that problem, but I just wanted to welcome you to the group and say I am sorry you are going through so much right now. It sounds horrible.

Immarsh

Hi All, If you have an " old" or recent ostomy, this is the place for you. I think I've been a member for more than 15 years, but I have had my surgery, since I was a kid of 15 ( do the math-that's more than 60 years ago). As a teen, with a new ostomy ( for Ulcerative colitis) my parents dragged me off to my first ostomy association meeting. I wasn't happy, but in the long run, it's the best thing that happened to me. I met others, older, and teens like me, adjusting to the changes. A group of us started a Young adult group, and helped each other, and even visited kids who were new to the world of ostomies. But soon I married, and moved out of state, and although made some connections with other NJ ostomates, I became pretty much isolated. Until I discovered MaO. By then, I was having a myriad of other medical issues, and my aging stoma " wasn't doing well". I received a lot of help and support from members! I was pleased that I was also back to supporting others. I met a gal on line (from Papua New Guinea) who was trying to help ostomates in her country. There is a scarcity of supplies in some other countries, and unlike the US, insurance to pay for supplies isn't available. When my son followed his "love" twenty years ago, and moved to Australia I took advantage of an opportunity to help other ostomates. On one of my first visits to Oz, I brought a suitcase full of Ostomy supplies, handed them off to an Ostomy assoc. On the Gold Coast, who then had a friend take them to PNG. They were grateful for the help, and Janet and I still write.. This is the place to be, if you need help, and it also gives you the opportunity to provide help and support to others. Feel free to write, if you'd like to chat, about things ostomy, or life in general. Best REgards to all.. Marsha

TerryLT
Aug 07, 2025 9:04 pm

It sounds like you are having a bad time. I'm sorry I can't be much help, as I'm not familiar with that particular problem, but I'm sure someone else will chime in. In the meantime, welcome to our group. This is a great place for support and advice.

Terry

SusanT
Aug 07, 2025 10:35 pm

Welcome to the site!

I'm sorry you are struggling. I don't have specific advice beyond urging your doctor to give you back some quality of life.

Kas
Aug 08, 2025 5:08 am

Yep. I don't have my colostomy due to the cancer, but the radiation. I also have other pelvic issues (girlie ones), a kidney died from radiation, and I have chronic radiation enteritis. But…the chemo and radiation kept me from dying from stage 3 cancer - so as much as some of these “side effects” suck, I'm still grateful.

 

My Ostomy Journey: Kimberly | Hollister

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ron in mich
Aug 08, 2025 12:53 pm

Hi Bruno, welcome to the site.

Morning glory
Aug 08, 2025 3:30 pm

Welcome to the site