I’m so sorry-you double posted and unfortunately both your posts were flagged to the moderators as duplicates, so have disappeared, which is why you can’t see what you posted.
Anyway, I’ll try to help you with your issue. As I said in the other thread in the stoma group, I also had stage 2b cervical cancer, treated with chemoradiation, but I fortunately had a recurrence which then led to the total pelvic exenteration surgery and stomas.
You said you were having bowel problems, so I just wanted to check with you if the cancer has spread to your bowel, or if you are potentially having a stoma for other reasons? I didn’t have spread to my bowel, but my cancer spread over my bladder, so I needed to have that removed, and I chose to have my rectum removed at the same time to try to reduce my risk of another recurrence. So my situation could be different to yours.
You said it will be some time before you meet with the colorectal team, so that would suggest that any potential surgery isn’t urgent. Is that the case? Perhaps if you can tell me a little more about what you have been told so far it will help me answer you more accurately. Your situation might not mean the same surgery as I had so I don’t want to assume things will be the same for you, especially since you have said how anxious you are.
Sarah xx
I’m sorry to read how difficult things have been for you, especially since you’ve tried so many things without success so far. But it’s very good news that no cancer has been found, although it must be very distressing to have to contend with your issues.
I know it’s scary when a stoma is mentioned-most of us don’t really know anything about them until they become our reality-but the colorectal team will be looking to see what is potentially the best thing for you to do to get your life back. It may be that a stoma is not required, so try not to get too far ahead of yourself before you’ve seen the consultant.
If a stoma is recommended, it certainly changes things for you, but from the sound of it, that would give you a much better quality of life. It is formed from your bowel, so the team may want further scans to plan surgery, and see exactly how the surgery would be done.
I had to have my stomas, but I’ve always thought of them as just going to the loo in a different way to most people! They are not as awful as they might sound. If you have to have one formed, try and see it as a positive way of making things better for you. It’s obvious you’re miserable right now, with pain and bleeding etc, and having a stoma could stop all of that.
I have an end colostomy, which means my stoma is permanent and can never be reversed. I lost my rectum, but not my anus, so I am sewn up inside but not on the outside. I accepted this was going to be how I would need to live for the rest of my life, but it’s not that bad. You don’t have control of what comes out (output) but it becomes second nature to manage dealing with a stoma bag- personally I find the colostomy easier and less time consuming than the urostomy I have now I don’t have my bladder.
I know it’s a scary thought, but the colorectal team will do what’s best for you, and talk you through everything. You don’t have to agree to it, as you can choose not to go ahead with any kind of treatment you don’t want to do, but it really sounds as if it would make your life so much better,
I’m happy to answer any questions you might have, and to reassure you if I can that you could get through this and have things improve so much.
Sarah xx
No problem-I’ve had to learn over the years not to worry about what I don’t know, and can’t control, but that’s not easy. I even slept well the night before my surgery, and tried to focus on the end result and not the process to get there.
A lot of the things we worry about are conjured up in our minds and I know how scary that can be. If you have a long wait to see the team, try not to spend that time worrying about what “might” happen, and just try as best you can to relax and wait till you have more information.
I’m always happy to chat, and am around in the forum every day so I’ll always reply to you.
Sarah xx
