Living with a stoma

FormerMember
FormerMember
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I had colorectal cancer in 2012. It was complicated with 2 peritonitis infections and I was left with a stoma. (I was 47).it was always deemed temporary andd a reversal was performed 9 months later.

This left me with chronic non stop diarrhea and blisters around my anus from the acid. It was concluded that i suffer from bile acid malabsorption(BAM). 

Having lived with this for the last 8 years I have no independence, constantly looking for public toilet and spend most of my time at home where I spend at least 40 mins to evacuate, 8 times a day. It is really dictating my life. 

I am looking to chat with people who have chosen to have a colostomy for comfort reasons to help me in my decision. 

When I had my first stoma, it leaked, was very liquid and very acid. But this was because I suffered from BAM which was not diagnosed at the time. Therfore I am left with a very negative experience of dealing with a stoma and bag. Now my stools are less acid but still loose and my intestine seems to be paralysed so there is always a build up of stools in it.

Will a bag help. Would it give me my independence or would it just be an additional obstacle? 

  • Hi . I’m sorry to hear that you’re having such a horrid time after your reversal and for so long too. Did you have an Ileostomy or a Colostomy post-op? Ileostimes tend to have a much looser output where’s the output from a Colostomy tends to be more solid. Presumably you would have a Colostomy if you choose to go down that route and then there might be the option to irrigate? 

    Have you discussed this with your doctor? I’ve attached a link to a booklet below which talks about referrals to specialists on page 10 which might be worth investigating? You could also try and get in touch with your local Colorectal Support Nurse for a chat?

    bowelcancerorguk.s3.amazonaws.com/.../RegainingBowelControl_BowelCancerUK.pdf

    Really hope you are able to find an outcome that allows you to get your life back.

    Take care

    Karen x

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

    Hi MmeToulouse,

    Sorry to hear about your troubles. I had no choice when I got my colostomy, and had mine's when I had my surgery in 2012, aged 47! You should speak to your stoma nurses about your issues and they will be able to help you to decide whether having the colostomy is the answer for you. With a colostomy you can irrigate the stoma, and that's a routine where you introduce water in to the bowel via the stoma and flush everything out. That procedure gives you some control back, and that may be the answer that will help you? But please, speak to your stoma nurses about this - you can't irrigate with an ileostomy. Hope you get some answers, but if I can help, let me know.

    Take care,

    Linda :-)

  • FormerMember
    FormerMember in reply to Kareno62

    Thank you for your kind words. In fact I had both. In 2012 I had a colostomy and when I had the reversal I had an ileostomy for 2 months. He ileostomy was more difficult to manage because of its position. It was close to lots of scar tissue (operated 5 times by this stage) and leaked. In terms of consistency it was the same as my colostomy. This was later diagnosed as Bile acid malabsorption. Even with colystyramine, which absorbs the acid, bowel control is very difficult.

    I have called my local stomatherapy centre who are putting me I touch with people locally. Hopefully I'll have the information I'm looking for. 

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks very much for your kind words too. What a coincidence! 

    I am really grateful for your advice and it is just the type of info I am searching for. 

    Take care

  • FormerMember
    FormerMember

    Well, mine wasn't by choice but I was the same age and I reckon I could spend a day with anyone with a stoma that is having problems and teach them how to not even notice it.

    I have had mine for over 2 years and I have it "down pat" to a fine art. Not without some small issues, but 99% of the time it's within my control.

    One of the secrets is time. And 9 months is not long enough to master the art of a stoma.

    At one year, it becomes easier. At 18 months you master it. At two years you stop noticing it.

    The worst part of my stoma is waking early every second day to irrigate. Irrigation takes 30 mins. Then I don't interact with my stoma for another 48 hours. It's not always this slick, but it's so normal to me now I can find myself sitting at my desk at 10am asking myself "did I irrigate today" --it's become so automatic I don't even notice I am doing it.

    But it takes time.

    Your acid issue WILL cause you some extra work with a stoma - I get that acid too. But I have found ways around it.

    My conclusion for you is that a stoma will be a different thing to overcome. And in time based on what you have said it will make thing easier.

    But I can't emphasise it enough that time is what you need. Consider two years sitting here right here right now sounds a long time, but with every single one of those 700+ days it gets easier, until you don't notice it.

    The great thing is that you know how hard a stoma can be at the start. You just need a guiding hand to push past the tough bits.

    I am very happy to chat, I'll even offer to be your stoma mentor should you decide to go for it. Having someone to ask questions will save you a lot of anguish. But also know that I won't have all the answers, a lot of my "stoma skills" have come from a lot of pain. But looking back now it was worth it.

    One thing you might want to check is if you can irrigate. That may help you decide.

    Good luck Slight smile

  • FormerMember
    FormerMember in reply to FormerMember

    You really are a star. Thank you. 

    I have my appointment with my surgeon in January although with covid, I can't see an operation happening too quickly. 

    Your story is quite enlightening. I was never able to return to work. It is just far too risky. I am a English trainer who travels from client to client and it was just impossible.

    I would love to take up you offer of mentorship. As you might have gathered from my pseudo, I live in Southern France so it would have to be by mail or phone (I can call uk landlines for free) or WhatsApp.  I have contacted our local stomatherapy centre as they have put me in touch with a local group of "stomatisés" and I'll see what comes from that.

    Since I brought up the subject of a stoma solution with my gastroenterologist two weeks ago, where he supported it as a potential solution I have been motivated to find out more. You are part of that process. I have not felt so positive in years!

    Many many thanks? Are you a Lynch syndrome too? 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi, I made a request to be friends with you. Are you able to accept? I'd love the opportunity to chat in private. Less than 3 weeks to go before I see my surgeon... 

  • . Have you had a friend request from ? If you put the @ then type someone’s user name it tags and emails them to say they have been mentioned in a post. Hope you’re doing ok? x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • FormerMember
    FormerMember in reply to Kareno62

    Thank you  and sorry  I only just spotted your message because of Karen mentioning my name. I will get in touch now Slight smile

  • FormerMember
    FormerMember in reply to FormerMember

    Hi there, I have messaged you my contact details. Hope I can help, of course it’s important to take what I say with a pinch of salt because your surgeon will be the best person to ask. But should you decide to go ahead I’d love to try and help.

    My stoma was due to cancer, and it wasn’t hereditary. I seem to remember having the test for Lynch and it was negative.

    Hopefully we can chat.