Hi. Very worried.
Was diagnosed with rectal cancer January 22. Had 5 weeks, 5 days a week of Radiotherapy and Chemotherapy which ended in May.
Had an appointment with Colorectal Surgeon today and what i ve been told has knocked me for six.
Was told that the treatment has not worked as well as they had hoped & major surgery is required. This involves cutting out the tumor, removing bowel & removing prostrate....Which will result in me having 2 stoma bags for life.
Has anyone experienced this? My head is all over the place as was totally not expecting this.
Thank you.
Hi Neilga
im sorry that you’ve had this.
It must be such a shock I just have an ileostomy however there are others that have two stoma’s.
SarahH2 although she’s on holiday so maybe a little while to check in. She has travelled many times with two stoma’s and will be able to give you lots of advice and is proof that you will be able to carry on enjoying life
Take time to process and keep talking if it helps.
Ann
Hi Neilga
I’m female and didn’t have rectal cancer, but I’ve had massive surgery called a total pelvic exenteration and I have a colostomy and a urostomy-details of what I had removed are in my profile if you click my name.
I understand the shock you will be feeling right now as the first time it was mentioned to me I actually cried and said no way, never-but that was actually before my cancer recurred and it became a necessity-then I was desperate to have it.
It was huge surgery for me with a very long recovery, but I’m happy to say it was successful-and that was almost 2.5 years ago now.
The thought of 2 stomas is worse than the reality of it. Really I just think of it as going to the loo in a different way to most people. My stomas generally don’t give me many issues and I manage them easily and basically lead a completely normal life, eating and drinking what I want now. I travel abroad pretty often and am currently in Zante so everything is possible-I was even in the Maldives a couple of months ago.
If there’s anything specific I can help with, please just ask.
Sarah xx
Neilga
Just take time to process and vent here if it helps. Talk here if it helps.sending you a hug
Sarah thank you and enjoy Zante
Ann
Absolutely it’s overwhelming because it’s life changing and very scary to contemplate, especially if it’s unexpected news. I did know it was coming, so was more prepared.
You need to take the time to process it, but I would say at the stage you’re at, it’s pretty incomprehensible and hard to imagine what it means and what things will be like afterwards.
I admit that I didn’t really ask very many questions because I didn’t want to scare myself out of it. But I did meet up with a couple of ladies who had it done and who gave me the confidence that it could go well.
Anything you want to ask, it’s fine. No question is too silly or random, and I’ll give you as much advice as I can based on my experience., even though we different genders!
Hang in there, and try to think about the positive aspects of this if you can-this can get rid of the cancer, and they wouldn’t be doing it at all if there weren’t hopeful of a good result.
Sarah xx
I had 2 weeks in hospital after mine. And I won’t lie, it was tough when I came home. But I wanted the cancer gone, and this gave the chance of that, which I held on to. I couldn’t imagine what it would be like to have everything in my pelvis removed, and indeed it was a very strange sensation!
My bowel was not affected by cancer-but had bad radiation damage from previous treatment, so much to the surprise of the colo rectal surgeon I asked for my bowel to be removed to hopefully increase my chances of success. One less place for it to spread to and since I was having so much else removed it seemed a sensible request to me.
I will say one important thing, and that is that not once have I ever regretted the surgery.
Sarah xx
Honestly, I’ve never regretted it. Though it is very tough, I just see it as giving me all this extra time I wouldn’t have had without it, I found it hard to imagine what it might be like, but am so glad I went ahead with it and didn’t let fear stop me.
Sarah xx
