My sister is still in hospital. She had a caecostomy as opposed to a colostomy or illeostomy. I can find very little information in caecostomies other than they are considered palliative. She is still experiencing leaking from the transverse colon and had a drain fitted but every time they move her the leakage also comes out of the wound. We watch her eat and drink and then the drainage bag starts to fill. I spoke to her oncologist and asked them what the plan is. The palliative care team are going to get involved and we will just have to wait and see. It dosn't look great but there is still hope that she will be able to leave hospital. I just wish the doctors would have an honest conversation with her and then we can plan. Other than the bowel issues she says she feels great and is eating again but given the leak I wonder why they haven't put her on TPN to rest her bowel and my conclusion is because they don't think there is any point. I am sad beyond belief as this disease is like a runaway train.

9 Replies

  • I would want a meeting with her team and put your cards on the table. Insist on knowing their plans and why and what they are going to do to make her quality of life more acceptable. I'd be very unhappy if it were me. If you don't push they think everyone is ok with their work


  • Hi Lily-Ann, you are so right & the word is PUSH. If you don't then they will believe you are happy with their, let's just wait till it's too late attude. Sometimes you have to take the bull by its horns!!!! Take care Cindyxx

  • I think Lily-Anne's reply is spot on. You really need to be having the conversation xx

  • I'm so sorry to hear this Seavccg.

    I'd agree about having a serious conversation with her doctors. It's good that she feels well and has her appetite back, so it seems odd that they aren't trying to sort out whatever this leak is.

    Also, don't forget that 'palliative care' means relief from symptoms, and any one of us could see a palliative care specialist at any time, without it meaning what you expect it to mean. I saw a palliative care doctor in my first round of chemo and burst into tears when she said what she did. She explained her job was to make me comfortable, and it was the oncologist's job to deal with the cancer.

    I hope you and your sister get some answers.

    Vicki x

  • There's an entry in medical-dictionary.thefreedictionary.com/colostomy that gives some information which might help you work out some questions to ask. I would copy and paste it here for you if I could, but I'm on my tablet and it won't let me. It does sound as though it's at least on some occasions done to allow an ill patient to recover enough for more extensive surgery. Hope that's some help.


  • Hi Barbara, that's a good link for us all I will write this down as well thanks for posting. Take care Cindyxx

  • Wretched predictive text changed that reference and I failed to notice! It should have ended cecostomy, not colostomy!


  • Hi Seavccg, I have been keeping up with on going problems I don't know why they don't have a clear plan yet. They do sound as if they are a bit slow.

    The advice given from others is to have a conversation with your sister's care team. It seems to me no one want to talk other than you & they don't seem interesting in getting around a table to do actually that. You must be so dreadfully stressed my thoughts go with you. I hope they get a move on soon & help your sister take care Cindyxx

  • It's so frustrating because they don't seem to be co-ordinating anything for her. A doctor came round yesterday and said he hoped she could go home on Thursday. Where is the discharge planning team in all of this. No-one has asked about her accommodation and how she would manage, no-one has given her a prognosis. All they have said is there are no more surgical options and she is not well enough for chemotherapy and may never be able to have further chemo.

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