Next step after chemoradiation - decisions to make

Hi papajoe. I had a colostomy almost 2years ago. Like you, I had 5 weeks of chemoradiation. This was successful in shrinking my tumour so that my wonderful surgeon could get all of the tumour out. I knew that I had to have a permanent colostomy beforehand, so I had time to get my head around it. I really don't have many problems with my stoma. It seems a bit of a challenge to begin with but you soon get used to your new  normal.

Good luck with whatever happens.

Kim x

Thanks blackstuff.

I'm not feeling particularly anxious about anything.  Support so far gives me confidence that any help and support will be there when needed. Pretty sure that advice will be appropriate and we'll be fine at the end of the process.

Cheers

I had a colostomy in January. Like you I was apprehensive about it. All has gone well and it is really easy to manage. You no longer control movements just replace the colostomy bag when it is getting full (any where above 30%). Easy to do and the NHS will give you loads of help and supplies. I was also apprehensive about changing the bag out of the home. I needn't have worried, I have not had any problems.

Thanks Bearwidower.

Had a call yesterday from Nurse Specialist as the MDT reviewed my scans yesterday morning. "Moderate response to radiotherapy". Some tumour still present and nodes around have reduced. Until we hear what the surgeon has to say, can't think what to ask. Options may be removal of rectum and either a temporary colostomy or a permanent colostomy. Going with permanent stoma will mean only 1 surgery but with management of stoma to deal with. Temporary stoma means two surgeries and a bit of doubt how my bowel will function; may be a bigger issue than stoma management.

More to come next week after meeting with consultant.

I have a friend who has had a stoma for the past 40 years. She has no problems with it and is very active running, swimming etc. So a permanent stoma is not a big issue. It is amazing how many people around have a stoma it seems quite a common operation 

I hope all goes well with you and that the surgeon has good options. I am waiting for my next scan having had 5 weeks of chemo and radiotherapy.

Had a meeting with the surgeon this week. Scans showed that the radiotherapy generated a moderate response to reduce the tumour. His recommendation is surgery to remove the tumour and surrounding structures. Position of the tumour means difficult to rejoin the bowel after surgery so opting for permanent stoma. This was what we expected after initial diagnosis so no surprise. Alternative options have too many unknowns and lower likelihood of satisfactory outcome.  Proposed date is the end of July which is 12 weeks after end of radiation treatment. 28th July was mentioned. I am seeing a stoma nurse 7th July to get a bit more of an idea what its about. There's plenty support in place so it's something I'll just have to get used to. Might take a couple of months to recover but should be fine for Christmas in Edinburgh.

• Thinking of you and sending good vibes. Hope all goes well. I hope my scan goes as well. Expecting my decision point mid August.

Thanks buddy and best wishes to you too.

Good news papajoe. Well done getting to this point and hope the surgery goes well . Big celebrations at Christmas! Edinburgh is always beautiful then ! I love the way the castle is lit up in the darkness ! 
Things to look forward to .

Court