View Full Version : Stage 3 lower rectal cancer

03-10-2016, 02:23 AM
Hello all
I wanted to share my journey so far...
I was diagnosed with stage 3 lower rectal cancer which also involved my lymph nodes.
I was diagnosed in July 2015, had to wait until October when I started 6 rounds of chemo and radiation, waited 10 weeks. I wasn't aware of the timeframes ! 10 weeks waiting with cancer inside isn't an easy as it messes with your head. My tumour ended up shrinking by 75% by the time I was operated on!!!!! It's actually necessary to wait for two reasons 1: the tumour continues to shrink during this time. 2: they can't operate as your blood won't clot properly during and after your op.
Moving on,I then started to focus on the ileostomy I would be getting albeit s temporary one freaked me out. I was so worried about my life changing and then it happened and you know it's not that bad.
You will have a specially trained nurse to help you every step of the way. They were and continue to be very supportive.
Now I wait to meet with my oncologist to discuss chemo before I meet with my pain specialist for my fibromyalgia and as my team plan a timeframe for my reversal. I can't wait to leave this bag behind and really heal. Life's good!
I must point something out . Post your surgery make sure you ask when you should be ok to drive! I waited 5 weeks and always drove with a pillow between the seatbelt and my lower stomach. You may also void your insurance if you are involved in an accident do check any policies before you go in.
One last point , make sure you empty your bag regularly , at night I wake about 3-4 times otherwise a combination of things happen : build up of gas and stool(if you had gas before ileostomy you will have gas with your ileostomy) beware as this can be a booby trap. I tried the gas release stickers but they only leaked so gave up on them.
I fell into a deep sleep and woke up in a mess as the bag simply burst and literally stuff everywhere. I had to wake up my husband sobbing and change the bed linen , take a shower and change bags all at 3am!
I'd love to know if anyone can tell me anything other than bananas to thicken stools as gastrostop not doing a thing. I'm drinking a lot fluids but stools are very loose and I have no energy. My muscles are wasting .
My fibromyalgia, CFS& IBS are bad. Is there an exercise regime on offer?
If you have any questions about my journey please feel free to post them.

04-09-2016, 10:18 PM
My partner has an ileostomy for rectal cancer too. He has learned some things the hard way. The most important thing is this: if you have to, take Imodium. Take it twice a day, every day, if you have to. It could save your life. I can't emphasize this enough.

You MUST make sure your output is not diarrhea, especially while on chemo. That can kill you. If your output is liquid, you could become dangerously dehydrated and end up in the hospital.

My partner became critically dehydrated because he didn't realize his output was far too liquid. He was in the hospital for three and a half weeks. His electrolytes were all over the place. His kidneys started to fail.

Our doctor told us that if we had waited one more day, John would have died. His chemo was interrupted for two months. He has now finished his chemo, but at a lower dose, which is not great.

He now takes Imodium twice daily, and we wish he had always done so. If he had, he could have had 100% of his chemo. He'll be taking the Imodium until he has his reversal surgery.

Talk to your doctor IMMEDIATELY about the constant liquid output. I mean IMMEDIATELY. Your description of what is happening sounds horribly like our experience. Give yourself the best chance you can to get well.