Post Surgical Life Changes from Bowel Cancer Treatment

Hi RowdeScholars and great to hear that you’ve had such a good response to the chemoradiotherapy. There’s lots of people on here with stomas - presumably it would be a colostomy which is permanent? I’m sure Katz51 will be able to offer some advice and you might like to have a look at the stoma board too?

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum

Take care

Karen x

Glad you are doing so well and that the tumor has reduced in size

Do have a look on the iliostomy colostomy and stoma group.lots of info on there

Also click on anyones name for bios of how they got on

As for living with a stoma bag.I have had an iliostomy for 2 1/2 years now.its quick and easy to change and empty.I wear the same clothes and eat most of the same food(well except for sweetcorn but heh ho you can live without that)

Do feel free to ask anything

Kath

Will follow your advice thanks.

Will check out the group. Thanks for your lead

I’ve already had a couple of very helpful replies and it’s clear I need to give more information and specifics. 

The thing is, I’m at that point we all must get to somewhere along the line where I have a choice to make about the bowel surgery. The surgeon has explained that because the tumour is low down close to the top of the anus that rejoining may be problematic and by no means guaranteed. My problem is that I can clearly remember seeing my fathers permanent bag and being horrified by it. This has stuck with me to adulthood and is probably swaying my decision making about what to do.

I can totally see the sense in opting from the outset for a permanent bag solution.  Less non guarantees, more straightforward, etc etc. it’s the sensible choice, but am I ready to make that choice? 

Really, I hoping someone can encourage me through this mire that is personal choice and give me some solid reasons why it’s a better choice to make and have a permanent bag.

Thanks in anticipation.

Hello Rowdescholars, I got my stoma last April . It’s something I should have done 5 years ago but didn’t. At the time the advice was chemo/radiation would tackle it as I was so early. Well it worked but returned within 3 years to the same spot. Again I went for more chemo it left for 6 months and returned. The oncologist said a stoma was my only option. Had the operation and was sorry sorry I hadn’t it done when all this started.  My life hasn’t changed. And one wrong thing I did was I turned to eating cake, lots of cake and ice cream. Was sad about everthing. Now I have to lose 2 stone. So don’t turn to cake… everthing will be good and you get your life back. Kind regards Helen 

Thanks Helen. Thanks really encouraging.

It might be when the surgeon is doing the operation either there is a good chance of a rejoin, or she decides that there's no chance. I was warned, and marked for stomas, as they never quite know until they are in. But the opinion was a rejoin, and it has worked. I'm now 2 years down the line. Mind I didn't have radiation, I somehow think that upsets the tissue and may make it more difficult on the day to rejoin. Sorry if that is another spanner in the works! All the best xx

Morning RowdeScholars

I have a permanent colostomy, and a urostomy, so double bagger here! These were part of a bigger surgery and it was my choice to have the colostomy part because I wanted to give myself the best chance of getting rid of my cancer. My colon was badly damaged from previous radiotherapy anyway.

My life with 2 bags is really good, and my colostomy is easier to manage than the urostomy. There isn’t anything I can’t do now that I could do before-going on holiday, swimming, living completely normally really. I can eat and drink basically whatever I want with no restrictions with a colostomy-I was never advised to change my diet in any way, so initially I introduced food gradually and chewed carefully. I had a bad experience with nuts early on, but can manage small quantities now. Nothing else has caused any issues. Changing bags is a quick and easy process now. 

I was so focused on getting rid of the cancer that I accepted the bags from the start. I wear the same clothes, do the same things and very much enjoy my life. Oh, and I’m 2 years on from my surgery with zero further complications. 

Hello SarahH21, thank you for your great message. As I have a stoma, but they now found something in my bladder as I felt things were not right. Also I had radiation. Just think I might need a bag as well. Here waiting for a 11 am phone consultation on a mri scan after a pet scan showed something on my liver. Tested positive for covid yesterday so biopsy cancelled for a few weeks. I think radiation can be good and bad