First time writing. I'm angry and afraid.

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Hi everyone this is my first time writing. I have so many questions and no one wants to answer. I'm angry and afraid just as you all must have been. Iv'e just found out I have colon cancer but because of my heart and kidneys I may not get surgery for a stoma, but I may.

Now, I'm not sure i want a stoma, it terrifies me, and finding out they have to sew your bottom up or staple it sounds barbaric. yes I know it's the logical thing to do but it sounds like something thought up for torture.

Can I ask you to be honest, is there anyone who has had a colostomy and wished they hadn't. 

I am not a 20-30 something that would say yes i can cope and want my life, nor am I 40-50 who would manage easily, not even 60. I am in my 70's, get confused easily and embarrass easily too. I don't think I could cope with a colostomy and would regret it.

Is there anyone out there also in my position.

Thank you in advance. 

*** UPDATE ***

Thank you so much to everyone of you wonderful, brave people who answered my query.

I have since had updates from surgeons and anesthetist that I am too high risk for surgery, so I guess i don't need to worry about my bottom being stitched up. Most of you have been through so much either with yourselves or with your family and my heart goes out to you all. I try to be positive most times but in truth I'm also a naturally anxious person however, i have accepted my fate and will do the best I can to live as happy a life as possible. I am already booking 3 and 4 day holiday breaks and looking forward to having plenty of laughs with my family.

Once again thank you all so much

  • Colonchris,

    Welcome to the club that no-one wants to join.

    I am in the same age band as you. In some cases a stoma is essential because without one some of us would probably die from the inability to pass waste product from our digestive system: it is that simple. I have two stomas and my bottom has not been sewn up, although my rectum has within my pelvic area. Some patients undergo more extensive surgery to get rid of cancerous tissue, if necessary and their stories can be found by searching these pages. I live a near-normal life free from having to keep running for the lavatory ten times each day and not going out as a consequence.

    Search the internet on the subject if you wish but there is a lot of inaccurate or generalised information out there that might give you a negative outlook. On these pages you will get straightforward answers based upon personal experiences, although these might not exactly match your personal circumstances. The NHS and Cancer UK websites are also trustworthy in my humble opinion, offering facts rather than flannel. Deal with what you know rather than what might be (or not be) as there is no device for looking into the future with certainty. 

    Dulac.

  • Hi  I was in my mid 50s when diagnosed so a bit younger than yourself. Are they thinking of giving you a stoma before you start treatment or are they worried about any operation due to your heart issues? The operation where you are given a permanent stoma and your bottom is sewn up is called an Abdominal Perennial Resection. I had a Low Anterior Resection where the anus is left in place and a temporary stoma called an Ileostomy is used and reversed at a later date.

    There is a page for people with stomas where you could copy and paste this post? 

     Ileostomy, colostomy and stoma support 

    I think you really need to clarify what your options are and what the outcome would be if you were to do nothing as it may not be very nice. Could you give your colorectal support nurse a ring or maybe even the support desk on the number below?

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi colonchris

    I am tagging  

    who has a different operation but travels and enjoys life to the full. 
    Also my friend  has lots of information 

    best wishes 

    Ann 

    Ann
     ‍Art

  • Hi conchris

    If you have any further questions I am happy to help.have a look at my history by clicking on my user name.

    I have an ieostomy and "barbie bum" after a panproctocolectomy so may have some useful info

    All the best

    Kath

  • Hi my name is Dave I have had all the problems you are describing diagnosed with bowel cancer the day before my 70th birthday July 2022 I had radiotherapy then chemotherapy then surgery in March 2023I had my anus/rectum removed and sewn over with pigskin my wife reckons i am grunting more now as it happens my wife has had non cancerous bowel problems for many years and was on awaiting list for a Stoma so surgeon did a bogoffand we had ops on sameday.  I now feel absolutely fine except for arthritis problems.  I can't say all the treatment was nice at the time but I am now feeling really good and glad to still be alive the Stoma is not as bad as you might think once you get over teething problems and Stoma Nurses are really good. Now I just spend a few minutes once a day or so in a slightly messy and smelly bathroom so no change there then. There are plenty of people in world in worse situation  who have to have All bodily functions done by a carer or other family member now that's what I call embarrassing. I hope you have a reasonable outcome on diagnosis and treatment plan and all the best for the future.  Dave 

  • Oh Dave 

    Thank you for sharing your story and making me smile. Your attitude is brilliant. I myself had an Ileostomy so I can understand where you’re coming from. A sense of humour really helps. 
    I love bog off. Two for one 

    Have a good day 

    Ann
     ‍Art

  • Hi  

    Thanks for the tag  

    I had a different more extensive surgery but have a permanent colostomy, and have never regretted it because I needed my surgery to save my life. I have had my rectum removed, but not my anus so I don’t have my bottom sewn up-everything was removed via my abdomen. 

    I would agree with Karen and make sure you clarify exactly what your particular operation would involve, and the consequences of not having it done. Colostomies are pretty easy to deal with-I also have had my bladder removed and have a urostomy which is harder to manage. I’m not embarrassed to have either of my stomas-I’m happy to be alive with them. I am being very honest in saying they saved me. What is it that makes you feel you wouldn’t cope with it and why do you think you would regret it?

    Sarah xx


    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Ann thanks for your comments yes a positive attitude really does help, I read your history and wow you have certainly been through some serious problems so your attitude must be super positive to still be coping with all that. I have had to reassess my thoughts now as my wife has just been diagnosed with inoperable and incurable lung cancer she's T4 N3 M0 and has her 1st treatment Monday coming so all my energy now is in helping her through her journey but at least I know what she has to come so am prepared for it . Good luck with all you do and to colonchris I think you are both pretty amazing.  Hiw dare they treat you like a Guinea pig. It's bad enough having a pig sewn on my ass without that sort of treatment.  Cheers Dave 

  • Thanks Dave  

    Sorry to hear about your wife’s diagnosis  It’s tough but with her treatment starting the fight can begin  

    I am booked for lung cancer check soon what with my colorectal check lung cancer check , husbands Parkinson’s appointments, liver specialist appointments and heart checks we are really being spoiled by our NHS   Not sure either of us would be here if it wasn’t for them 

    Best wishes to you and your wife 

    Ann
     ‍Art

  • Thankyou for your kind words I really do appreciate all the kind words of the people here I can't imagine the torment you and you husband are going through at the same time at least Linda and I have been one after the other. Although that can seem to prolong things but hey let's try and be upbeat there are people worse off than us. At least we have hope and partners to try and get us through. I really wish I could take Lyns problems and transfer them to  me as i feel so bad that i can't  protect her from whats to come.  but I think I was supposed to be named Brian as I want to look on the bright side of life . Best wishes to you and your husband and as you say thanks for our N H S .. Good luck . For future.  Dave