Life choice of having a stoma

Hello out there. I am seeing my surgeon shortly and would like to chat to people in this situation. 

What clothes can you wear? What activities can you do? Are there any limitations to your quality of life? 

Looking forward to receiving some help. 

Hello Mme Toulouse,

Sounds like you have had an awful time.  My experience was much more straightforward - Bowel cancer without any symptoms until chronic anaemia appeared, emergency surgery to save my life because of the delay, permanent stoma.  Boom boom.

But I am now two and a half years down the line and feeling that the stoma (Charlie to his friends) is pretty ordinary.  So let me try to give you some idea how things work for me.

Clothes: I don't like tight belts because of the position of the stoma pouch, they pull.  And I wear ostomy pants (kangaroo pants in my family) with a pocket into which the pouch slips for added support.  Beyond that and a slightly plump tummy because of the pouch, I don't have to make any adjustments to what I wear.  Now, I am of the opinion that clothes should be for comfort as well as attractiveness but I dress up and down as I please - jeans, tailored trousers (high waisted ones for me), dresses, suits for work....you get the picture hopefully.  

Activities: It has taken time and I would advise using a good exercise programme designed for ostomates (I recommend Sarah Russell's 'Bowel Cancer Toolkit' available on Amazon) but I do pretty much what I want.  I did yoga for years but have changed to Tai Chi as less dynamic but I use a gym for strength and circuit training.  I was so excited the first time I pushed a hoover round (that excitement has since worn off) but I can do housework, gardening, shopping, working, walking...all the things I used to do.  I wear an ostomate's panty girdle (on prescription) for added support and I am careful to lift properly and to avoid heavy weights but that makes sense with or without an ostomy.

Quality of life:  I am still  here!  And I am enjoying my life.  I have some changed priorities like a better work /life balance but that is an improvement.  I have some dietary limits - I love onions but Charlie hates them - and I have to manage my hydration because I have an ileostomy so I carry a drink everywhere now.  Occasionally I have to deal with the pouch leaking but the more I know about diet etc., the fewer 'accidents' happen.  Oh, and I don't have to wait for the toilet......

I would say to anyone facing an ostomy that they shouldn't be afraid.  There is a period of adjustment- my stoma nurse warned me it would take two years for my digestion to settle and it did.  But it isn't insurmountable.  You just need to be gentle with yourself and patient and, leaving behind the years of pain and anguish, is the best way to get the quality of life back.  

I hope this is some help and reassurance.  Good luck 

This is sooo useful. Thank you so much. I might be back for more info. 

Glad to help any time.  Have a peaceful Christmas and here's to a happy and healthy 2021

Hello to all those of you who have helped me in my quest. My life has been changed so much for the better and that is thanks to you all. 

I have had appointments with 2 surgeons and 2 stoma nurses with my original idea being the choice of having a stoma to give me a little freedom from my incessant bowel movements.

This led to discussions about irrigation. I was given an irrigation kit for rectal irrigation to see whether it would work. In fact it works so well I don't think I need to go for the stoma in a hurry. I have moved from 12+bowel.movements per day to a max of 5. WOW

I feel a new woman and cannot think you all for all your support. 

I also have a diagnosis for the bowel problem which is Anterior Resection Syndrome. Without irrigation I am off scale on the LARS score. 

Hello again Mme Toulouse.  So glad to hear that you are feeling better and more in control.  The medical teams are always the best place to start but it is hard when you feel dreadful and cannot see how things can improve.  Looks like you are on your way now so keep on trusting yourself and you will find your way through.  Could be a good 2021.