Rectal Cancer & Stoma Bag

Hi  and a warm welcome to the board from me. If you click on my name then you will see the treatment bag that I’ve had so far. 
My tumour shrank from 4cm to 1cm after chemoradiotherapy and was 9cm from my anus. I had a low anterior resection with Ileostomy which was reversed 15 months later. 
It’s natural to be worried about the surgery but this is the sort of thing that the surgeons do day in, day out and I found everything was thoroughly explained to me before hand. I had an epidural which I was worried about but it was totally painless and the anaesthetist talked it all through with me before hand.

If the stoma bag turns out to be permanent then you honestly will learn to cope with it. My friend who I went out for lunch with on Saturday has a colostomy and you would never know - she’s been on cruises, flown to New York and carries on with life as normal. Another friend has just been given an Ileostomy to help with her crohns - she loves it and is thinking of keeping it as it has improved her life so much. There is a page for people with stomas if you want to post there too or just have a read?

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

Bowel cancer is very treatable nowadays and no spread is good. I’ve just had a clear coloniscopy and I am currently No Evidence of Disease for 4.5 years. There will be some tough months ahead but we’ll be happy to support you through this.

Please keep listing and let us know how you’re doing

Take care

Karen x

ps the 2 ladies I lunched with on Saturday were also stage 3 and we became friends off the bowel cancer uk board and have stayed in touch - they’re both also still cancer free

Hi Hankbrogie, Sorry to hear that you have joined the club. After diagnosis I had 5 weeks of radiotherapy with capecitabine tablets to shrink the tumour and blast a nearby node. It reduced the tumour so much that the surgeon almost didn't operate. However he did which was the right decision. I had a lower anterior resection and ended up with a temporary Ileostomy bag that I had for a year.

If you end up with a permanent one I assume it would be a colostomy bag. How did it impact on my life? A closer watch on diet, changing the bag regularly and planning what I was going to do. You get used to the routine and it didn't stop me doing what I wanted, I flew abroad, had holidays did manual jobs. It wasn't something I wanted but I managed it and, as my stoma nurse said, it was helping save my life. I have a friend with a colostomy who has had it for twenty years, he says it is just second nature to him now.

Being fearful of the surgery is natural but the odds of everything being successful are good. Will it be keyhole? I had keyhole and the recovery from the actual operation was not a problem. It just takes time and knowing what you can and can't do. My hospital gave me good advice and support.

I came out the other side, so far, and am 1 year clear with another teat due in October. I hope you are as successful.

All the best for a good outcome, John

Hi there. I am a 65 year old male that was diagnosed with stage 3 rectal cancer in June 2019 and was given a permanent stoma immediately. Have been on a bit of a rollercoaster but my  scans in summer 2020 were clear and pleased to say my annual scans over the past month are also clear so am living cancer free again which is a great feeling. Had a huge op in Dec 2019 that took several months to recover from, but I didn't really have any pain- just a lot of fatigue. The chemo was a challenge but manageable and I didn't have chronic side effects. The stoma is something you just need to get used to. I didn't have any choice about having one or not as my tumour was too far advanced , so I embraced it as my life saver, and it really isn't anything like as bad as you first fear, once you have got used to it. I do virtually everything I used to do - so my advice is just focus on the main event.  Check out my profile for a more detailed description of my journey.  Bowel cancer is very treatable these days so best of luck with it. cheers ..