Life with bowel cancer


Hospital trip today

Hiya dear friends I've not been feeling so well recently and ended up in A and E today.
It seems I have elevated levels of bilirubin hence the orange / red urine! Also my diaphragm is being pushed upwards causing pain and breathlessness and to round it off ......a urine infection. Oh the joy of my life.
Have to say Lewisham were impressive though, I was whisked through A and E and into a bed within an hour. It is possible I may have a blocked bile duct and may need a stent. Has anybody else had this done? :x::x:


Hi @Alwyn - I have had quite a few of these stents - originally to help with bile leaks following surgery and more recently to help with raised bilirubin levels.

The actual procedure is called an ERCP and done under general anaesthetic. They pass a camera / device down your throat into your stomach from where they can insert a stent into one of the bile ducts which helps the bike drain into the stomach / guts as it should. I have never felt any pain or ill a effect following the procedure.

As bile by its nature can be quite thick and gloopy sometimes the stents can get blocked so they don't like to leave them in too long (maybe a 2 or 3 months) after which they may want to change or remove them. If they do get blocked they can cause infections etc so do let them know if you get signs of fever etc.

They are not sure what has caused my raised bilirubin levels - could be the cancer / scarring etc but the stent has reduced my levels a bit (they have stopped going up anyway) but not yet reduced enough for me to have full FOLFIRI chemo at the moment. Some drugs can't be given with high bilirubin levels.

The raised bilirubin levels do cause darker urine / pale stools. I have also had some yellowing of the eyes and itchy skin which drives me crazy some nights!

It's good your team are on it - I'm sure it will improve things for you quickly.



Hope you will feel better soon :x::x:


Many, many thanks to all of you dear people for responding to me. I know I've said this before, but it always helps me so much to know that there are people out there who understand.
I am now back at home and resting as instructed, they have not yet put a stent in as they seem to think the bilirubin levels might resolve themselves; so it's good old wait and see again.
They have also told me now that my potassium levels are way too low which could be causing some of my symptoms so I have supplements to resolve that and maybe need to think more about my diet to avoid this happening again.
@Roody79 @Lady GT @DianeS. Thankyou for the information on stents which has reassured me and I won't be so worried if I have to have one.
@lynn collier I'm sorry Barry is still not feeling so good, I really hope he will pick up soon and be able to get on the Lonsurf.
@steve707 Did you have chemo at Lewisham? We might have been there at the same time. I was really impressed with them yesterday.
Sorry I haven't mentioned everybody personally but thank you again for all your continued support. I was feeling very down yesterday and not just because of my own condition, my cousin died at lunchtime of breast cancer which had spread to the brain, only 57 years old. I'm so sad but the last 18 months have been truly horrendous for her so I am happy that she is now at peace. I am hoping to be able to make the trip to St Helens for her funeral but I will have to see how things go.
Love to all of you :x::x::x::x::x::x:

springer michelle

Sorry to hear, and hope it corrects itself :x::x::x::x:

Jacey Connell 74

@Alwyn hope you feel better soon and so sorry for your loss :x::x::x:


Sorry to hear about your loss @Alwyn & hopefully things will settle down now for you :x::x:

El Ivan

Hope you’re soon on the mend again @Alwyn :x:


Hope you recover swiftly @Alwyn . And so sorry to hear of the loss of your cousin so young to breast cancer.


So sad to hear the news about your cousin @Alwyn - just terrible. But very pleased to hear that you are feeling better and that your team really seem to be on top of things for you. Hopefully these issues will resolve themselves with the team's suggestions.


Hi @Alwyn great news that the Bilirubin levels are likely to resolve themselves, keeping my fingers crossed for you. So sorry for the loss of your cousin. Hope you feel better soon, sending lots of love D :x::x:


@Alwyn Just sending you the biggest healing hug.:x::x:


Great news that your bilirubin levels will hopefully resolve without intervention @Alwyn. Fingers crossed!

I think I was advised to eat a banana a day to help my potassium levels in the past but I’m sure supplements will address this more quickly. Maybe a smoothie with a banana in would be nice?

Sending all my very best wishes as always,

K ????❤️


Hi @Alwyn pleased to hear you are feeling better and sorry to hear the news 're your cousin. Think carefully about the right thing 're the funeral as you also need to look after your own health but see how you are physically and emotionally. Much love and good luck topping up the potassium levels :x::x:


Good luck @Alwyn, I do hope you are on the mend soon. Positive hugs and love to you.:x::x:


Hope you are feeling better I am under Lewisham hospital and I can’t fault the colorectal staff


Hope you feel better soon. So sorry about your cousin. I hope one day that there will be a cure for all cancers :x::x:


Hi @Alwyn , so sorry to read you are having a horrible time. I hope you get the recent set back sorted my lovely, and condolences on your cousin passing. Big hug to you. Lots of love. Angie :x::x:


So sorry for your loss Alwyn and that you are having such a tough time, sending lots of lots of hugs and hope that you start feeling better very soon :x::x::x:


@Alwyn I’m sorry I’ve been off the forum recently. I hope you are feeling much better but I’m very sorry about your cousin. Take care :x::x:


Hi @Alwyn sorry for not replying sooner. I did have my chemo at Lewisham. The girls work so hard there. We may have actually spoke and not realised that we know each other from the forum.