Permanent v temporary stoma

Hi Everyone

I am new to this forum. I was diagnosed with colorectal cancer in May 2021 and have been through 5 weeks of radiotherapy followed by 18 weeks (6 cycles) of chemotherapy and am now waiting for surgery. I had my pre-operative assessment yesterday so I expect to be operated on quite soon.

I saw the surgeon yesterday he said I had to choice between a colostomy and an ileostomy. I don't have to decide until the day before the operation. Today I had a call from a specialist stoma nurse who gave me a lot of information about the difference between a permanent and a temporary stoma. But what would really help me is some input from someone who has had either of these procedures and can tell me a bit about what it is really like living with a stoma bag. What difference does it make to your quality of life?

I am a 72 year old woman, living alone and with no close family who before cancer was fit and active and before covid was really enjoying my retirement - taking 2 or 3 holidays abroad each year as well as visiting my flat in Cyprus twice a year. I would really like to get my old life back so a big factor in my decision is going to be how much either a colostomy or an ileostomy is going to impact on my ability to do that.

Any help or advice - positive or negative - would be gratefully received.

  • Hi first of all, all the best with your treatment whatever you decide on.All I can say from my history is that I had a panproctocolectomy just over 2yrs ago with a permanent iliostomy..

    I wear the same clothes I wore before,eat most of the same things(*maybe not sweetcorn but I can live without that) I find the stoma easy to cope with and unless I tell people I really dont think they can tell I have one.Im not ashamed of having a stoma so dont keep it a particular secret.

    I havent done a lot of traveling since but that is because of covid nothing to do with the stoma.I cant see it being a problem when we can all travel freely again.

    Do click on katz if you want to read my short bio and do ask anything

    Kath

  • Hi. I had Lower Anterior Resection with an ileostomy August which is reversible.
    I’m not sure why they are asking you to choose. Is the tumour very low? My rectal tumour was very low meaning that my reversal may not be successful and I may have Lars , but I’m still going to try. 
    If they think that a reversible procedure is going to successful then why not go for that. If they think that you will need a colostomy maybe the permanent is the way to go. 
    Have more advice from your team it’s a confusing choice. 
    it would be good to write up pros and cons  

    So in conclusion I personally am on the list to see if I can cope with a reversal, if I can’t they’ve said that later I can have a colostomy  I want to try it just to see  I’ve also been told I can stay as I am with my ileostomy called Whoopi. I am fine with her , I have dropped some weight everyone says I look great, my clothes fit well people don’t notice and I am planning some holidays asap. This Covid things driving me nuts.
    Whatever you decide best wishes with your treatment, 

    Hope I haven’t confused you more  

    Best Wishes

    Artsie Ann 

  • Hi Limassol, it sounds like you have been through quite a lot already. I had a temporary ileostomy for a year before a reversal. Once used to it, it didn't stop me doing anything that I wanted to including going abroad for a holiday by air. Now reversed the same applies and I have just come back from Madeira. Am I right in thinking that the colostomy would be the permanent solution? A friend of mine has had one for over twenty years and travels without any problem at all.

    I think that the surgeon needs to give you the pros and cons as he should know of the likely outcome of your operation and the possibility of a reversal.

    I hope that whatever you decide the outcome is successful for you, All the best, John

  • Thank you Kath. This is very encouraging.

  • I got lots of information about the two possibilities from the surgeon and the /stoma nurse but as they believe in "patient choice" they both decline to recommend one route or the other. All very well in principle but as a total lay person (not even O Level biology!) sometimes I just want to be told what to do. So I am trying to gather a range of views from people who have actually been through it.

    Many thanks for your contribution.

  • Thanks John. I won't pretend it's not been really hard. It wasn't helped by me struggling to get a referral at all as my GP misdiagnosed my symptoms as hemmarroids and it took six weeks before she even ordered a stool test. 

    As I explained to Artsie below, I got lots of information from the clinical team but because they believe in patient choice they won't recommend one or other of the procedures as both are apparently viable in my case.

    I am leaning towards a colostomy because is the permanent solution and avoids another operation -  not something I want to go through in my 70s if it is not absolutely necessary - and because I am concerned about the possibility of leakage etc from the rejoined bowel in a reveral. Your friend's experience is really encouraging so many thanks for that.

  • Hi Limassol

    I have a permanent colostomy as that was my only option, but I find it easy to manage and have been abroad twice recently without issue. My bag is unobtrusive I think, and I can swim and do everything I could do before including eating and drinking basically anything I want. The output is thicker with a colostomy as I understand it, and typically I would just change my bag on a daily basis. 

    I think it can be pretty difficult if you’re given a choice-I’m not very good at decision making so glad I didn’t have to do that. I consider my quality of life to be excellent, and I do also have a urostomy to manage, but you soon get into the swing of it. Hopefully you will be able to come to a decision that you’re happy with-we’re all so different! xx


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  • Do let us know what you decide and all the best with whatever you go with

    Kath

  • I would be exactly the same. I wouldn’t know what to do. 
    Maybe if you could ask your team for more info about what operation they will perform in each case. They’re going to be different.  


    I remember after my tests the surgeon discussed the findings and then examined me. He said that after the examination he  would make his choice. My cancer was just above the sphincter. He decided Lower Anterior Resection and told me that I could go for a reversal and I would have support to get things going. Reversals aren’t priority I can be waiting up to a year 

    From your answer to John it sounds as though you’re leaning towards a colostomy which will be the one operation. It would be good to know recovery on both.  

    Good luck with your decision, once you’ve made it you can plan those trips and enjoy your travels 

    Best Wishes

    Artsie Ann 

  • Hi Limassol, I find it amazing how many times I read on this and other forums about delays because of misdiagnosis, when a simple stool test could be so useful. The lady doctor I saw at our surgery was great, stool test straight away, pre-booked the tests I might need if the result was bad and refused to let me go away when the colonoscopy appointment clashed with a holiday. She even happily signed the insurance claim!

    I was 73 at the time and I had no choice but to have a temporary ileostomy. Everything has worked out ok so far with two year checks coming up soon but I can see that one of the 'pros' for the colostomy may be that you have the one operation and then you can just get on with your life. Having said that, the reversal of the ileostomy was a minor operation, in for two days only, but it takes a while for the bowel to begin to work in a reasonable fashion. 

    Best of luck, John