Permanent v temporary stoma

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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.

  • Thank you Sarah. That's very encouraging. Can you still wear the same clothes as before too or do you need to wear bigger clothing to accommodate the bag? I know it is silly still to be vain at 72 but I don't want to spend the rest of my life in baggy clothes!

  • OK, I will! Thanks for your interest.

  • You are so right about misdiagnosis. When I finally got to see a consultant he was pretty cross with my GP and wrote to the surgery saying that unexplained rectal bleeding in a 70+ year old should always trigger immediate tests. So with any luck other patients at my GP practice may have benefited from what happened to me.

    It seems that you have been lucky. There are a few people on these forums posting about LARS and other problems so I am getting increasingly inclined towards the colostomy. I have telephone consultation with a Stoma nurse booked for Monday and will probably make up my mind after I have spoken to here.

    Thanks for your input. 

  • I dont know if this is of any help.I am 70 and know what you mean about fashion.

    There is underwear available on prescription.personally I found it too thick and constricting because of the extra pocket for the bag which made it not for me.I know lots of people like them so its always worth a try.after all we arnt all alike.I stick with sloggi maxis and find they keep thebag nice and flat.

    I still wear my jeans as I did before and dont wear anything any larger.

    I do wear pjs rather than nighties as again I like the bag flat not flopping around.but again a personal choice.I wear soft jersey ones with a soft waistband above the level of thebag so they dont cut across it

    Hope maybe some of this may be useful.

    Kath

  • Hi Limassol

    I still wear the same clothes and have made no adjustments, other than to move from swimsuits to tankinis for swimming. I haven’t had to buy bigger clothes, and I don’t wear any specialist stoma underwear. I’m just coming up to 60, and wasn’t in the habit of wearing “fancy” lingerie, and I find that my normal underwear is fine-what you would call “full briefs” just like I always wore. I love soft pyjamas but tend to wear nightshirts more as I need to connect the urostomy bag to a night bag via a long tube to save getting up in the night, but you won’t have this issue. I was never a jeans wearer but I would probably avoid them if I did, simply because I think it might be awkward with 2 bags.

    I have not long moved to a new type of colostomy bag, which is very comfortable and neat. I wore a blouse recently to go out for a meal with my in laws who don’t know I have stomas-they didn’t notice anything. I have to say I’ve never felt self conscious about my bags with anything I’ve worn. 


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  • Ive been reading about LARS too and am feeling concerned about a reversal. I bought two sizes up full knickers after the op now Im in one size up they’re super comfy 

    Ann
     ‍Art

  • Thank you. This is really, really helpful. I was going to pack nighties for my hospital visit but will switch to pjs now.

    I have lost over a stone since I started radiotherapy/chemo so I am hoping that my ordinary M&S underwear will accommodate the bag. I have also bought some joggers on line one size larger than usual. later on, when I feel up to dressing less casually I might try and get some sloggis on line. 

  • I would pack Nighties for after your operation.
    I had two but needed three. Short loose nighties it’s easy access for staff and easy for you to manage.
    PJS at homes perfect once you’re able to move freely. 

    Ann
     ‍Art

  • Thanks. That's good advice. I'm nervous about being home alone straight after I am discharged so I have arranged to go into a Nursing Home for two weeks straight from Hospital. I'll pack nighties for Hospital and PJs for the nursing home. That should cover it.

  • Yes, it's worrying. Not everyone seems to be affected but that is no consolation if you are one of those who is. Good luck with your reversal if you decide to go for it.