Start of the journey

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Had a colonoscopy two weeks ago and got confirmation that is is cancer a week ago. MRI and CT scan two days ago, meeting with the surgeon today - preliminary results shows it's not likely to have spread. Team will study the scan results and form a treatment plan. Surgery with or without chemo/radiotherapy and a temporary or permanent stoma. Lots of information to process. I would like to find out more about the practically of living with a permanent stoma. For example doing physical work. I'm not against the idea, but been told it's my decision. 

  • Hi

    I was diagnosed with Dukes A colorectal cancer in 2017.... anterior resection..... prepped for stoma.... not required.

    Did have a PEG feeding tube inserted for another issue ... situated in abdomen....had it for about 5 months.... found it quite annoying... Some infection at site.... inflammation.

    Peter 

  • Hi  and a warm welcome to the board. Hope the meeting goes well today - take a pen and paper and another pair of ears if possible as there can be a lot to take in. I had a temporary stoma for 15 months then had it reversed after my treatment finished. There’s lots of info on the stoma board where you could ask for feedback on physical work?

     Ileostomy, colostomy and stoma support 

    The main concern would be that it can make you higher risk for a hernia. You will be allocated a stoma nurse who would be able to advise you about this and there are support belts that you can be fitted for to help minimise the risk. 

    My Ileostomy was quite active at times and the bag would fill up quite quickly and then need emptying whereas the output from a colostomy tends to be thicker and the bag is changed rather than emptied. I’m sure if you post on the stoma board then there will be others with some more practical advice

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Karen just wanted to add that not all permanent stomas are colostomies.

    I have a permanent iliostomy.it depends on how much of the bowel is removed.

    Kath

  • Thanks for that  Yes that stands to reason actually and I’ll amend my post x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Thanks Karen .I was just being a bit fussy about terminology.sorry

    Kath

  • Hi Karen, thanks for that. The meeting went well and answered many of my questions, but have so many more now.I had my husband with me as well so that was helpful.

    I will have a look at the page you suggested and I haven't met the rest of the team yet so will write down questions for the next meeting.

  • I have had my stoma now for 4.5 months. Its permenant.  Took about a month to get the hang of changing bags etc properly. Now I dint know why I had an issues, its so quick!

    I hope to move to irrigation at some point (only possible.for colonscopy) so no bag!

    I am super keen on exercise etc (although I am not that good or corrdinated!!!).  The stoma nurses were exceptional and are pretty clear be very very careful for 3 months!  Lots and lots of simple core work (i focused on pilates and yoga, although i found the yoga you have to still be careful). Lots of walking. 

    They set you up with prescription hernia support straight away, although it is the one thing I wish I knew before my op as I would have bought a couple of bits myself, like hernia vest for the gym.  Go max level 3.  The nhs stuff takes about 6 or more weeks to arrive, some is made to measure. 

    I found hernia support comfortable (a real surprise) and accepted its something I will wear for gym, gardening etc or times I know I will have to do more physical stuff at work.  

  • Hi, and thanks for that. I think I'm getting ahead of myself and worrying about things much further down the line rather than concentrating on the now. I know that the list of things you can do with a stoma is much longer than anything you perhaps can't. So much information and so many questions!! I now know the team has decided to give me radiotherapy and chemo first to shrink the growth so they can be sure to get it all, so the operation will be a bit further down the journey.