Living without a large intestine

GordonD on 07/06/2023 - 10:31
Last edited 10/06/2023 - 11:04

I got sent the bowel cancer test kit every 2 years, and didn't bother. Then a few months ago I had a persistent gut ache, so I thought I'd do the test. Just in case. The news wasn't good. It was too late. When I tested positive for blood in my faeces, and they did the colonoscopy, they found multiple advanced cancers at both ends of my large intestine. They're telling me that the best choice is remove most of my large intestine, which will leave so little that it may not survive, or simply remove it all. You can live without it.

My question here is whether anyone here has had experience of this. Is it an OzBargain. Are the extra years of life worth the reduced quality of life from not having a large intestine to do what a large intestine does. Having to take drugs and supplements and wear a colostomy bag to shit into and the rest.

My inclination at the moment when I've already outlived all my family and most of my friends, and have the other chronic medical conditions that old people do, is that something is going to get me sooner or later. So it may as well be this. I've had a short experience of an aged care home during this medical episode, and I'd hate to end up in one with dementia. So I might just decline the surgery, and when the cancer gets bad enough find a way to go quietly into the night.

Of course the best choice would have to start doing the bowel cancer tests when they started sending them to me so the problem was picked up and dealt with before it became cancer. But we all think it won't happen to us. And I let the opportunity pass. I commend to you that you don't.

STOP PRESS, STOP PRESS, STOP PRESS:

I spoke to the gastro specialist immediately after the colonoscopy, and saw him again a week later after he had the pathology results on the polyps he's removed, and was told I'd have to have at least most of my large intestine removed, if not all. Today the various specialists had their case conference. They decided that surgery can wait for another colonoscopy in 3 months to be sure its really necessary, or, hopefully, not.

THANK YOU EVERYONE FOR YOUR POSITIVE AND ENCOURAGING RESPONSES.

Health & Beauty

Comments

  • Duckie2hh on 07/06/2023 - 10:36
    +52

    Sorry to hear about the news. Each to their own, but I don't think there should be any shame in continuing to live with a colostomy bag. Can I ask how old you were when you found out?

    Good luck mate.

    • HardQuiz on 07/06/2023 - 11:03
      +20

      I think the government is considering sending these kits as early as when you turn 40yo.

      To OP, whatever you decide, I hope you find comfort and support. Stay strong mate.

      • luckyang on 09/06/2023 - 19:55
        +1

        No, from your 50y

    • afoveht on 07/06/2023 - 13:06
      +13

      Don't think it's necessarily a matter of shame - it's a matter of choosing what sort of life you want to live, or not. Not everyone wants to finish the race on other people's terms or expectations.

  • Muzeeb on 07/06/2023 - 10:37
    +37

    All the best with your decisions Gordon.

  • JuanLove on 07/06/2023 - 10:46
    +12

    There are support groups you can go to. Talk to someone with a colostomy bag.

    If you decide not to pursue treatment, you might not go quietly in the night. Talk to your surgeon about what the likely eventuality is. If they think it's an obstruction or a perforation, those will be painful ways to die. Ask about voluntary assisted dying.

    • I like freestuff on 09/06/2023 - 11:22
      +1

      That way I read it was the “quietly in the night” comment wasn’t about riding it out until the cancer gets them/health complications from it, but rather riding it out until things got too much and then taking the unofficial assisted dying option.

  • Donaldhump on 07/06/2023 - 10:52
    +12

    sorry to hear news. A friend of mine has a colostomy bag due to being paralysed / wheel chair bound. He says its not a big issue, and at times convenient.

    • coffeeinmyveins on 07/06/2023 - 11:04
      +26

      He says its not a big issue, and at times convenient.

      "I'm pooing right now!"

      • Donaldhump on 07/06/2023 - 11:12
        +10

        id go to the football with him and he would tell me exactly that

    • Jackson on 09/06/2023 - 17:25
      +1

      I can think of a few benfits, no rushing to the bathroom at the half time break, continuous eating at the buffet

  • mbck on 07/06/2023 - 10:57
    +13

    You definitely can and should seek more information. Joining support groups as JuanLove wrote, is very important to get good info. Pros and cons of doing the surgery vs not doing one are also important points to consider.

    It's also important to note who else in your life that you'd want to still make memories with. Could be kids, grandkids. Prolonging your life for these precious memories, may be an important factor.

    All the very best with whatever you decide with and see you in the next ozbargain life.

  • Vancomycin 1000mg on 07/06/2023 - 10:59
    +11

    I used to work in Oncology Ward, this is certainly not new. Have you tried speaking to a doctor? There is usually a specialist nurses and or stoma nurse who can help you..

    Caring for a stoma bag is not difficult if that is your main concern.

    Im sorry you are going though this.

    • juki on 10/06/2023 - 00:02
      +1

      aptly chosen name for gastro issues :)

      usually patients find it hard at the beginning, psychologically for obvious reasons, the fear of smelling and we all have different relations with poo. on the physical side some people are less dextrous for changing bags noticing it is gassy ect, but there are different type of products to suit different preferences. stomas sometimes have minds of their own

      talking to people with a stoma can help get "pro tips" and see that in fact there are quite a few people going around with them

  • BugsBunnyAUS on 07/06/2023 - 11:04
    +6

    Have no direct or indirect experience of this, but wanted to say good luck with your choices OP and well done for having the courage to ask.

  • godofpizza on 07/06/2023 - 11:08
    +2

    sorry to hear news, what age group do you fall under?

    good luck with your choice, my advise is that get a second option before going under the knife..

  • garetz on 07/06/2023 - 11:14
    +8

    What is life expectancy with and without the procedure ? Tough call, i would go for quality of life over quantity of life personally.

  • harveyworld on 07/06/2023 - 11:19
    +2

    I've had a couple of colonoscopy's over the past 6 or so years due to the presence of blood - but fortunately nothing serious was found. I now elect to have the bowel test every year just in case.
    After reading your post it had me wondering what I would do given similar circumstances. And like you, I sense a time quality over time quantity scenario, so I would do my utmost to fulfil any outstanding dreams and wishes - and enjoy the remaining time being happy as one can be in the circumstances. Take that trip to see remaining friends/family and visit those places you've always wanted to go to. Not sure if that is easier said that done, but hey whatever it is that floats your boat - just find a way to do it.
    I wish you well my friend, and hope that you find the path that is good for you.

  • try2bhelpful on 07/06/2023 - 11:22
    +7

    Very sorry you have to go through this. I found the kits “icky” as well, but they are important. I’ve also had a couple of colonoscopies, due to family history of polyps, and a gastroscopy due to indigestion issues. That is a whole new level of OMG prep work. Fortunately my results have been clear to date.

    You need to talk to the experts to see what will happen after the operation. Once you make the decision for no treatment you can’t go back. Best of luck with your decisions.

    Thankyou for raising this it is very important people get checks done. As a person who’s had a Melanoma removed I will put in a “get your skin check done annually” warning. They caught me early so I’ve been clear for over 20 years now.

    This was a posting I did about my colonoscopy. Just to give people an idea on what it was like.
    https://www.ozbargain.com.au/node/280604

  • JimmyF on 07/06/2023 - 11:34
    +2

    Are the extra years of life worth the reduced quality of life from not having a large intestine to do what a large intestine does. Having to take drugs and supplements and wear a colostomy bag to shit into and the rest.

    Sorry to hear the news.

    Its not the end of the world that most people think it is having to wear the bag.

    and have the other chronic medical conditions that old people do, is that something is going to get me sooner or later. So it may as well be this

    It is true, towards the end, it is normally what medical condition you have will get you first. Some people just get 'tired' of living, so say this is it. I'm out.

    and when the cancer gets bad enough find a way to go quietly into the night.

    The choice is yours and will come down to how old you are, what other conditions you have, who you have to look after you and what you have to look forward to.

    I've had a short experience of an aged care home during this medical episode, and I'd hate to end up in one with dementia

    It is very true, people focus on how long they'll live for, but often over look the quality of life part. No point living till 90 if the last 25 years of that was in a old folks home watching TV waiting to die as you can't move around, can't do anything and all your family are long gone. Sadly this is what happens to a lot of people. Either the mind goes or the body goes, so the last decade is normally pretty crappy!

    • GordonD on 07/06/2023 - 12:09
      +4

      Some people just get 'tired' of living, so say this is it. I'm out.

      We hear about military and post-military suicides. Look at the numbers and you see the group with the far highest suicide rates are old men. I now understand that.

      • JimmyF on 07/06/2023 - 13:36
        +4

        I now understand that.

        After talking to older people, seeing how the last years play out etc, and just generally getting older myself, I can fully understand as well how some people would wish to just 'exit' while the going is good and skip all that.

        Hope you come up with what works best for you and wishing you all the best for the time that is left!

  • Ryanek on 07/06/2023 - 11:38
    +20

    I got sent the bowel cancer test kit every 2 years, and didn't bother.

    You have taught me a valuable lesson today and I vow not to ignore the kit when it eventually comes my way.

    Thank you and good luck mate.

    • BewareOfThe Dog on 07/06/2023 - 12:54
      +5

      It's easy to 'forget'. My 1st kit failed, so I had to order another one.

      My partner has had one for @ 9 months. I'll have to remind her.

    • Brianqpr on 08/06/2023 - 16:05
      +3

      Me too, got one recently. Its in a drawer at home. Time to get onto it.

    • centrelink on 09/06/2023 - 10:23
      +1

      how do i request free kits every 2 years?>

      • Ryanek on 09/06/2023 - 10:43
        +1

        Government sends them to you when you turn 50.

  • Archi on 07/06/2023 - 11:42
    +6

    thanks Gordon for your brave question, and hope you find the support you need and good luck in whatever decision you make,

    personally, i would choose quantity of life over quality at the moment as i have young family and want to be able to spend more time with them. so everyone's circumstances are different.

    and thank you, this is a good reminder to do the annual check ups that i have been ignoring.

  • jolee3 on 07/06/2023 - 12:04
    +4

    Sorry to hear this has happened to you, all the best with whichever path you choose to take.

    Thank you for the PSA about the testing kits, they are such an important preventative tool.

  • GordonD on 07/06/2023 - 12:04
    +39

    Thanks everyone.

    For the record, I'm well into my 70s.

    If anyone is concerned about having a colonoscopy, the only thing that is unpleasant is the absolutely foul stuff you have to take beforehand to clean your system out. Why they have to make things like that unpleasant I don't know. The colonoscopy itself was no problem. They tell you to get undressed and put on a gown with an open back and tell you to lie on your left side. Then put you to sleep. You wake up an hour or two later, and get dressed. I expect to at least have a sore arsehole. Wasn't even that.

    The bit I didn't expect was being sent to an aged people's home afterwards. Because you've been sedated you can't drive yourself, and you have to be supervised until the next day, in case of I don't know what. I live alone with no-one to do that, so rather than waste a hospital bed on me, they provided me with a ride to an aged persons home with a nurse, then a ride home from there the next day. The staff walked in and out as if your privacy didn't matter, and the food was terrible.

    • cookie2 on 07/06/2023 - 13:30
      +4

      100% agree re the prep drink. Just foul. Though a tip, buy the clear triangular bottle juices (presha juice) and sip it directly after each chugg of the prep. It helps to replace with a nicer taste. Also refrigerate the prep drink and block your nose.
      The rest is a breeze and love my tea and bikkies afterwards 😁 gotta take the good with the bad in some situations.

      • kiitos on 08/06/2023 - 08:10
        +6

        And make sure you prepare it properly, and drink it properly, and have plenty of liquids throughout the prep. A relative had problems drinking the prep due to the taste and texture, and so didn't drink enough prep, and it ended up they couldn't do the scoping properly. So they went through the hassle of the prep and procedure only to need to do it all again.

      • Pacco on 08/06/2023 - 11:41
        +2

        I personally like a chaser of beef broth, find the saltiness really cuts the taste of the prep out of the mouth. My father passed away at 52 from bowel cancer so I started having colonoscopies every couple of years, even without symptoms, in my early thirties.

    • skillet on 08/06/2023 - 09:30

      The prep drink cleanse your system so there is less chances of bacteria infection post surgery. Your poo is rich of those. And of course it helps the person fixing you a lot by not having to clean up messy guts. So it's also used as a cleaning agent especially for inspection routines.

      • Tonyh87 on 08/06/2023 - 14:07
        +10

        The main purpose of the prep is actually so the proceduralist doing the colonoscopy can see the bowel properly.

      • Jolakot on 09/06/2023 - 12:21
        +1

        Taking it makes sense, but why on earth does it have to taste so bad? Surely with modern technology they could make it less awful, if not neutral

        • fredblogs on 09/06/2023 - 20:30
          +1

          It actually tastes worse than it used to. I've had a few colonoscopies due to family history and the most recent one was much worse than previously. Supposedly this new formulation "gives better views". Think I'll try chicken soup next time to try cancel it out.

    • Poor Ass on 08/06/2023 - 11:11
      +1

      the bowel prep is awful I agree

      doing number 1s in your number 2s and you loose a bit of weight too

  • BewareOfThe Dog on 07/06/2023 - 12:52
    +2

    I'm sorry to hear this.

    My aunt had one in her 60s, and you would not have known she had a bag as a result of
    Bowel Cancer. The cancer back about 8 years later, but by then it had spread.
    Not long after, my mother travelled the same path, and developed Bowel cancer. She fought, but gave up on the 3rd occurrence, as there was nothing left of her. Given 6 of her 7 brothers have died from cancer related illness as well as their parents (Pop was a heavy smoker, as were some of the family members/spouses)

    I just wish you all the best, and that adjustment is pleasant.

  • cookie2 on 07/06/2023 - 13:25
    +1

    Sorry you're going through this crap situation (pardon the pun).
    Honestly I understand. I've seen cancer, chemo, radiation and procedure after procedure wear others down and at some stage I may have to get part of my bowel removed myself so I get it.
    But
    Even if you don't get the cancer removed, go on meds and get a colostomy bag, you'll still end up at some stage getting old or more unwell.

    Colostomy bags are shit but there are some great advancements and various styles to make sure you get something that works for you. You get used to getting used to your crap and base your decision too heavily on this.
    Meds, thats another thing. What sort of meds are we talking and what are the day to day side affects that will impact your quality of life?
    Also what beneficial things can be implemented so that your quality of life is improved?
    Lastly it can be very lonely being sick, you can't know everything and your specialist will always have a limited amount of time with you so any options for supports, counselling, support groups etc, take it.

  • IIGnomeII on 07/06/2023 - 14:09
    +15

    Colorectal cancer survivor here, found in my mid 30's and had a low anterior resection in 2021. Part of the healing process I had to use an ileostomy bag (basically the same as a colostomy bag but in a different place).

    The management of the bag isn't too bad, yes there are some life adjustments required but you will be given information from the nurses on what you might have to do daily to manage it.
    The bag can be covered and strapped down while worn so you won't see it if that is of any concern to you. Your body will still pass what it needs to throughout the day but you won't know when or have control of it, if you have certain foods that give you gas then you may notice it more. The output is liquid because the body has not passed it through the intestines to withdraw the moisture so when you feel like the bag needs to be emptied you sit on the toilet and unfurl the bag.

    I had a reversal done a little over a week after it was put in due to complications with obstructions. My grandmother who is almost 90 had a bag put on last year, she is doing daily swaps whereas I was keeping mine on for a few days.

    Shoot me a PM (or anyone else) if you have any questions I might be able to answer.

    • Grunntt on 08/06/2023 - 09:28
      +6

      Shoot me a PM (or anyone else) if you have any questions I might be able to answer.

      Any chance that you could do an AMA on your experience?

      That way people who may not feel comfortable asking you directly in a PM could benefit from the other's questions.
      Also, it would mean people get to see answers to questions they may have not even considered yet.

      This is one of many topics many avoid due to it being somehow 'icky' but I always make a point of giving detailed responses to family and friends when they ask me how any particular procedure went especially when it is one unfortunately avoided.
      They do sometimes regret asking me but they do get the full story (the others listening in but not asking seem to be the ones who say that they benefited the most from the conversation).

      • IIGnomeII on 08/06/2023 - 12:25
        +5

        If there is enough interest I can.
        June is bowel cancer awareness month, around 1 in 10 people under the age of 50 are diagnosed when it is traditionally thought of as an older person disease.

        • Grunntt on 09/06/2023 - 16:04
          +1

          Either way, thank you for providing the detail you already have.

  • screensaver on 07/06/2023 - 14:21
    +1

    Do you have private health insurance? I am asking because palliative care is on there, an alternative to an age care home. This is also available publicly. Perhaps talk to a hospital social worker

  • tight-ass on 07/06/2023 - 14:35
    +7

    I had an ileostomy for a little under a year and I'm grateful it wasn't a permanent fixture like they initially advised me it could be - I couldn't handle it. FYI - Ileostomy attaches part of the small intestine to an opening in the abdominal wall and a colostomy attaches to the large intestine…..both do the same shit.

    Unfortunately for me I have a very good sense of smell, which meant I could smell my own shit 24/7. There's also the uncontrolled farting that comes with it that is often loud enough for everyone else to hear as well. It would also fill up with gas constantly like a balloon and need to be "burped" to let out all that lovely aroma, which by the way doesn't smell like a normal fart……normal farts are far more pleasant. There's also a list of foods that you must avoid eating or else you risk causing a blockage.

    I only had 2 leaks in the time I had it thankfully, but both were in my sleep when I rolled over onto the inflated bag. I also struggled to change / empty my bag without help due to nerve damage in my hands as a result of the chemo I had, so it was a lot of work for me.

    I also never want to go into an aged care home like the OP. My mum is in one now due to Alzheimer's, which means there's a very good chance I'll get it too. Aged care is the pits and something I'll try to avoid at all costs.

    Everyone is different but I just thought I would share my experience with an ileostomy.

    • try2bhelpful on 07/06/2023 - 15:22
      +2

      Thanks for the input. It is valuable to have someone with practical experience speak.

    • BKJCW on 08/06/2023 - 09:44
      +2

      This is really interesting and not like my experience at all. I do wonder if your appliances were the right match for you. The only time my husband has any odour is when he’s had a leak (only a few times, caused by a gas blow out overnight) and obviously when he vents and after emptying. He doesn’t typically have the major gas that you’re describing also.

  • AustriaBargain on 07/06/2023 - 15:21
    +4

    While I cannot provide an exhaustive list, here are 10 notable individuals who have undergone a colectomy (removal of the large intestine) and continued to live rich and fulfilling lives:

    Marisa Peer - British therapist and motivational speaker.

    James "The Amazing" Randi - Canadian-American magician and skeptic.

    Thomas Pynchon - American author known for his novels such as "Gravity's Rainbow."

    Alvin Ailey - American choreographer and founder of the Alvin Ailey American Dance Theater.

    Ruth Bader Ginsburg - Former Associate Justice of the Supreme Court of the United States.

    Barry Bostwick - American actor known for his role in "The Rocky Horror Picture Show."

    Jesse Jackson - American civil rights activist and Baptist minister.

    John Ostrowick - British entrepreneur and founder of the QVC shopping channel.

    Rosanne Cash - American singer-songwriter and eldest daughter of Johnny Cash.

    Ray Combs - American comedian and former host of "Family Feud."

    Please note that the information provided is based on public knowledge, and there may be other individuals who have had a colectomy and continue to lead fulfilling lives.

    • ssfps on 07/06/2023 - 17:11
      +2

      How many of those people were of advanced age like OP, vs young/middle aged and otherwise healthy, and still lived a rich/fulfilling life?

      • AustriaBargain on 07/06/2023 - 17:16
        +4

        Among the individuals mentioned in the previous response:

        Marisa Peer - No specific information available regarding age at the time of colectomy.

        James "The Amazing" Randi - Underwent colectomy in his 70s and continued an active public life until his passing at the age of 92.

        Thomas Pynchon - No specific information available regarding age at the time of colectomy.

        Alvin Ailey - Underwent colectomy in his 50s and continued to choreograph and direct the Alvin Ailey American Dance Theater until his death at the age of 58.

        Ruth Bader Ginsburg - Underwent colectomy in her 60s and continued her career as a Supreme Court Justice until her passing at the age of 87.

        Barry Bostwick - Underwent colectomy in his 60s and continues to be active in his acting career.

        Jesse Jackson - Underwent colectomy in his 70s and continues his activism work.

        John Ostrowick - No specific information available regarding age at the time of colectomy.

        Rosanne Cash - Underwent colectomy in her 30s and has continued her successful music career.

        Ray Combs - Underwent colectomy in his 30s, but unfortunately, he tragically passed away by suicide several years later.

        It's important to note that the impact of colectomy on individuals' lives can vary depending on various factors such as age, overall health, underlying conditions, and individual circumstances. While some individuals mentioned may have undergone the procedure at an older age and continued to lead fulfilling lives, there are also cases of younger individuals who have successfully recovered and continued their pursuits.

  • ssfps on 07/06/2023 - 17:07
    +2

    I've had a short experience of an aged care home during this medical episode, and I'd hate to end up in one with dementia. So I might just decline the surgery, and when the cancer gets bad enough find a way to go quietly into the night.

    Multiple members of my family have advanced health directives/DNRs and are planning to refuse any such treatment, although they're in their late 60s and you sound later in life than that.
    Just commenting that their main motivation is having worked with dementia patients and seen how often people cling to life in such horrible conditions, and deciding they want to go when it seems time rather than hang on under any circumstance.

    Of course, even if you go through with it, I imagine the risk factors of any surgery are much greater for you (given age and health). If it were me i'd be analyzing those risks/stats closely to see what chances there are of living with a worsening condition.

    As for what's right for you - no idea. Good luck!

  • star-ggg on 07/06/2023 - 17:16
    +1

    My GP recommends and I get a colonoscopy every 3 years. It's completely free with medicare and the preparation is very easy (if you can WFH for it). We are very lucky to have medicare and an excellent public health system. I recommend everyone make use of it as needed.

    • ssfps on 07/06/2023 - 17:20
      +1

      When i had one, they went over the risk and while i can't remember what they are, i remember being surprised how often a scope will damage the intestinal wall. (1 in 1 or 2 thousand maybe?)
      Not saying people shouldn't take advantage of them if needed, but i'm wary of getting any scope done if there's not a reason to look.

      • star-ggg on 07/06/2023 - 21:42
        +4

        Of course you shouldn't have colonoscopies if you're in a low risk group, but even odds 1 in 1000 of damage (how much damage? irreparable?) vs 1 in 19 people having bowel cancer. I know which side I'm going to bet on.

        Also, look at the other comments. By the time you have symptoms, it's a crap shoot what stage you'll in. If you're high risk, get checked regularly cause they also burn off polyps which could develop into cancer.

        • ssfps on 07/06/2023 - 22:33
          +1

          how much damage? irreparable?

          iirc the damage was perforations.

          • star-ggg on 08/06/2023 - 18:45
            +2

            @ssfps: and the damage from late stage cancer?

    • fredblogs on 11/06/2023 - 18:41

      3 years seems a bit frequent if everything is normal with no polyps. Did your gastroenterologist agree?

      • star-ggg on 11/06/2023 - 20:57

        Yes my family history puts me in a very high risk group

  • Guinan on 07/06/2023 - 18:11
    +17

    I had my large intestine removed due to bowel cancer 5 years ago. Didn't get any warning symptoms, hadn't had screening and it ended up perforating and being removed as an emergency rather than an organised, planned procedure. Had chemotherapy for 6 months without too much trouble and haven't looked back in my recovery since.

    I was lucky to get away without a colostomy, but I've not had any regrets about having surgery.
    I've met lot's of people with colostomies who have said they are easy to manage and become second nature.
    All said they thought they'd 100% made the right choice and had no second thoughts. All said they were "better than the alternative"!

    I poop more times a day than before but other than that enjoy a normal diet and active life. If anything my life is more active and I look after my health a good deal better.
    My extra time is precious.
    I have regular specialist reviews and regular colonoscopies and although I don't look forward to them they are fairly easy to go through.
    It's always a joy to hear I'm still clear and this reminds me of how lucky I am to still be alive.

    As others have said PM me if you have any questions - I work in health and can give you both technical and personal experreince advice.

    • Grunntt on 08/06/2023 - 09:36
      +3

      As others have said PM me if you have any questions - I work in health and can give you both technical and personal experreince advice.

      I commented on IIGnomeII's post asking if there was any chance of them doing an AMA.
      Just wondering if there is any way for an AMA to be done by multiple members?

      • Grunntt on 08/06/2023 - 17:44
        +1

        Ok - the moron who negged me - like to explain why?
        Or are you going to hide there anonymously?

        Stop playing your stupid games in this sort of thread - this can be life or death, not just your juvenile ego.

        • WhyAmICommenting on 09/06/2023 - 15:26
          +2

          Don’t stress about Internet points. They’re worthless.

          • Grunntt on 09/06/2023 - 16:02
            +3

            @WhyAmICommenting:

            Don’t stress about Internet points. They’re worthless.

            Not concerned at all about the neg.

            Just wondering what sort of mentality it takes to neg that sort of comment in this type of thread.

            Shows how juvenile some people are when they get their jollies by demonstrating their stupidity in a thread about something so important.

    • serpserpserp on 08/06/2023 - 14:58
      +1

      Amazing story. How did you know you had bowel cancer if you didn't have symptoms?

  • Motek Benzona on 07/06/2023 - 18:54
    +5

    My grandad got sick in 1976 when i was just 13

    He had a bag for more years than i remember and still lived until 2003 (he was 92)

    Im going in for a camera up the you know where on 24th.

    Wont go into massive detail why, Odd pains…Bit of blood..recent history of diverticulitis to start with.

    Im a bit worried about the results..and the procedure. Got no questions really..just wanted to share

    • cookie2 on 08/06/2023 - 06:35
      +3

      Hi.
      Hope you come out with answers and a path forward to better health, no matter what.
      I was diagnosed with Crohn's after years of symptoms not investigated by docs. Guess I'm saying it could be anything so try not to think the worst before the procedure. Peace.

    • BKJCW on 08/06/2023 - 09:40
      +2

      I’ve read your story and would just like to pass on calming and positive thoughts. Not that it will change things but you have been heard.

    • Speckled Jim on 08/06/2023 - 10:07
      +1

      My blood turned out to be piles which were ligated as part of my colonoscopy.
      Chin up mate, could be minor.

  • yoyo6 on 07/06/2023 - 19:13
    +2

    B' hatzlecha motek

    • Motek Benzona on 07/06/2023 - 21:14
      +1

      Todar rabar habibi

      • capslock janitor on 08/06/2023 - 10:33
        +1

        What both means?

        • Motek Benzona on 08/06/2023 - 11:43

          Im a cute son of a bitch whos cuteness was confirmed whilst being wished best wishes and i thanked the poster 😁
          [True story]

  • Waltervp on 08/06/2023 - 08:46
    +4

    Ive known people who've had much of their large intestines removed and they don't have colostomy bags (initially they get it of course) and have adjusted their diet a little (trouble digesting lettuce for instance) and have smaller meals.

    The initial stoma was also no issue once they got used to it, but the few people ive known who lost most of their bowel didnt need to keep it for too long - 6 months at most.

    Never give up, life is like a book with good and bad chapters, happy and sad, but when you stop reading you may miss some great chapters. Life is a once in a life time experience, don't waste any of it. And sometimes i think life is like a monopoly game, and even when you are losing the others players don't want you to quit the game!

  • Lunarboogie on 08/06/2023 - 09:36
    +1

    Wishing you well GordonD. It is a difficult choice and have their pros and cons. Whichever decision you elect, I hope it works out for the best and provides the dignity that you deserve.

    For others, it's a salient reminder of the Impermanence of life and the importance of living it to the full.

    Go well hombres.

  • BKJCW on 08/06/2023 - 09:38
    +3

    Hey mate,

    Sorry to hear about your predicament. My husband is on to his 3rd, and final (permanent) ileostomy which he has had since 2017. His quality of life is better now than it was prior with a J Pouch. He’s in his 30s.

    I’d strongly suggest joining some Facebook groups or Reddit if you would prefer the privacy. Happy to link you up with both him and some recommendations if you inbox me.

    Kindest regards.

  • hazzad on 08/06/2023 - 10:14
    +1

    Sorry to hear. I recently had a colonoscopy due to persistant abdoninal pain since Dec 22. All tests came back fine, only thing they found was small polyp that was removed and a big old hemmoroid which was banded(and most likely the cause of my bleeding in my stool test). Thankfull i had it done as the pains subsided once my mind was put at ease. Im turning 50 this year so the tests will be part of my regular routine from next year.

    Def recommend people get a colonoscopy done if you have concerns. I know the fear of it being something makes people put it in the too hard or dont want to know basket but its better to know and try and catch iy early rather than leave it and potentially have to deal with a life threatening issue. The nurse even congratulated me for doing it as she said a lot of people(men in particular), choose to ignore it and not get the check done.

  • capslock janitor on 08/06/2023 - 10:33
    +2

    How long do you have to make a decision?

    • GordonD on 08/06/2023 - 10:52
      +1

      I've been for a scan to see if the cancer has invaded any of the neighboring organs. The doctors involved will conference next week to decide whether they think any of my large intestine can be saved, or whether to remove the lot. And whether anything else will be required. Then the following week they'll tell me. At this point they're taking it as given that of course I'll say to go ahead with whatever they say. But I'm old, and there's no-one to come home to after major surgery to look after me.

      • Tonyh87 on 08/06/2023 - 14:17
        +1

        Definitely speak to your doctor about what happens if you dont have the surgery. You definitely have earned the right to chose either way, but you need to know the consequences of not having surgery. If you start having bowel obstructions from the cancer, it's not a very nice way to die. Good luck with whatever decision you make, in the end it is your decision and not the surgeons or anyone elses.

      • capslock janitor on 08/06/2023 - 15:46

        @GordonD I don't have medical advice, but can offer a holistic suggestion called Golden/Turmeric Milk.
        Some other ingredients are black pepper is a must to enhance the absorption and potency of turmeric. Milk of choice.
        Beneficial spices such as grounded cinnamon, ground ginger, nutmeg. Bit of EVOO. Sweeten taste with maple syrup or coconut cream/oil.

        Anti-cancer/growth // leading to reduction/remission.
        IDK if it will make quick enough change to your deadlined late-staged cancers, nor if you have any dietary restrictions, so seek medical advice regarding this if needed. It's just common foodstuff.
        https://www.youtube.com/watch?v=WVEJQEuzieg&lc=Ugy4wI79bmYfD…
        Also could help general brain health & dementia.
        https://www.webmd.com/diet/health-benefits-turmeric-lattes

        Drink and enjoy this warm beverage once or twice every day, whatever your decision anyway.
        Personally that would be one of the first things I'd do if I got diagnosed cancer or tumours.

        Godspeed

      • Waltervp on 10/06/2023 - 10:23
        +1

        I have the same predicament, and they likely won't even give me a lung transplant option because i don't have thr traditional support system of wife and 2.2 kids.. and no one to come home to. Makes it all very tricky.

        Still, only on this earth once and fight for that chance! Hang in there bro.

  • Bmilne3 on 08/06/2023 - 10:43
    +1

    Hey mate sorry you’re dealing with this- I’ve been a nurse for the last 5 years and something that surprised me was actually the amount of people that have an ostomy, people you wouldn’t even realise. They’re relatively easy to care for. Most require changing the base plate every couple days (say 3-5 days), and the bag itself just when it’s 2/3 full. You’ll have an ostomy nurse teach you how to look after it. You’ll be in hospital until you’re able to change it yourself without trouble.
    They absolutely are life saving. Look for support groups.

  • JakeyJooJoo on 08/06/2023 - 10:49
    +1

    That sucks mate, sorry to hear it. You seem to have a pretty decent headspace all things considered.

    Re the bag, the stimga you have in your head is the biggest barrier. Just lose your whole large intestine and get a bag. It makes such a small impact to your quality of life.
    On the plus side, you never have to wipe your arse again, and you get to eat more as you process food quicker.

  • SydneySwan on 08/06/2023 - 11:26
    +2

    Best of luck mate.

    For everyone else - when the test kit arrives, do the test. In the off years then pay for a commercial test - only about $40 and if you have extras health insurance they will probably cover it. This has been my MO for the past 15 or so years.

    • ryefig on 09/06/2023 - 09:27
      +1

      Hey @SydneySwan - do you have a recommendation on where to order the test kit from? Or did you get it through your GP?
      I am keen to take one out of precaution, however, I don't reach the age threshold to get a free kit. A google search wasn't so helpful on how or where I can order one (I don't mind paying for the service, but would rather not have to go through my GP)

  • Kamsi on 08/06/2023 - 12:54
    +2

    My old man survive from Colon cancer he was diagnose as stage 3. His was in his early 70s, unfortunately he too didn't take the test. I think I need to remind myself that I must do the test.

    • Speckled Jim on 10/06/2023 - 12:50

      It's free and easy so do it!

      I'm the opposite, and worry the starting age of 50 is a bit high. There's talk of lowering it to 45, even 40.

  • Sensiekatie on 08/06/2023 - 14:06
    +2

    my uncle was in his late 70's when he had most.of his.large bowel removed and a colostomy put in place. He had had previous cancers (prostate and spread to hip bones) and required radiation all prior to the bowel issues. He adjusted quite well and I was surprised at how good his attitude was and how he coped. He did have a daughter to help him. His biggest problem was that he lived in a small country town and instead of having specialist stoma nurses available to help and advise him, they had to muddle through. They found out about 6 months later that their GP was supposed to be their resource. I doubt that he would have had the knowledge to cope with the issues though.

    His quality of life was fine for several years afterwards except having to adjust his diet but he coped. I have known patients in my nursing days to live 20 years and more afterwards.

    Only you can decide, but I will say that not having the surgery will lead to bowel obstruction or even multiple obstructions. I have personally had that experience twice and that was bad enough. Mine could be resolved. Additionally, the tumours will grow and invade the wall of the bowel and beyond. What happens next will depend on which direction the growth goes and what structures it invades.

    My mother had bowel cancer and she was obstructing and that is how she was diagnosed. She was ignoring her problems. They removed a lot of her large intestines but she did not have to have a bag. Her cancer had invaded everywhere by that stage (heart, stomach, liver, kidneys, spine, etc). She died 3 months later. She was able to live a normalish life without pain for about 2 1/2 of those months. No surgery and she would have died then.

    • Sensiekatie on 09/06/2023 - 12:30
      +1

      Can I add that you also have the option of hearing what they suggest surgery wise and doing the surgery to avoid obstruction, tumour invasion etc but refusing chemo and radiation which is the really nasty part of the treatment.

  • stumo on 08/06/2023 - 14:18
    +1

    How old are you OP?

    I've just turned 50 and the kit arrived in the mail a couple of months after.

    I did the test and it has come a week later positive result. So just yesterday my GP put me on the waiting list for a colonoscopy - about 3 months wait apparently. Doc said theres nothing I can do in the meantime.

    For anyone else reading this. Do the test its not hard.

    • fredblogs on 09/06/2023 - 20:35
      +1

      If you have private health insurance, try to get it done sooner

  • Smarch on 08/06/2023 - 14:22
    +2

    Thanks for this post and putting the check up into peoples mind, you will have hopefully saved a few lives or at least helped people catch it early enough to not be as adversely affected as you.

    On the point of just letting it run its course, i had an uncle that died of bowl cancer, picked it up too late like yourself, and he died in excruciating pain even with the highest level of pain drugs they were able to provide him.

    Only mentioning this to be informative, not to scare or persuade you to change your mind, just after seeing him go through that, it is not something i would wish on anyone else to experience.

    Good luck with everything, hope you come to a decision you are happy with which allows you to stay true to yourself and live as you want to live.

  • Benicio on 08/06/2023 - 14:24
    +5

    My wife had her large bowel removed and has an ileostomy since mid 30's. We're in our mid 40's now.
    She is at the gym 4 days a week, does those 5-10km obstacle races (spartan) no problems.
    A bag certainly wont impact your life negatively once you make the adjustments. You'd certainly have to be willing to make the adjustments though.

    Incidentaly she's a nurse who does a lot of counseling for new patients with an Ostomy, it's always a surprise when she shows a new patient as no one realised she has one. I forget she has one 99% of the time TBH.

    • sardines on 08/06/2023 - 15:08
      +2

      It’s fantastic when a nurse can relate. I had an emergency colostomy and a nurse said "your too young to have one" and when i reached out for the mental health support in hospital, it was a overweight bloke who basically said "that is so horrible mate, im sorry you are going through this" and never saw him again. I do weights for my mental health since 14 and was devastated due to hernia risks and shitting out my gut when i first saw the stoma and huge cut sternum to navel. Took awhile via reddit that all sorts of people can train and live a normal life with stoma - bet if your wife were my nurse, i would have saved myself months of nightmares and looking at myself as a cripple - remind her she is awsome

  • SpicyStew on 08/06/2023 - 15:57
    +1

    My father went through it 5+ years ago. He had his large intestine removed. 5 years on he is a cancer survivor. He is in his 70's.
    He says he doesn't have much appetite change but the chemotherapy he went through with surgery had damaged his nerves in his hands and he has constant pins-and-needles feelings. Doctors say the nerve damage can heal over time but it has not so far. He's still enjoying retirement and plays golf which he loves.

    This post was hard to read and I hope you the best.

  • JavaJoe on 08/06/2023 - 16:14
    +1

    I had virtually all my large intestine removed about 15 years ago because of mega colon. My colorectal surgeon was able to construct something in there and didn't have to have a bag. Over the years I have been to ED a number of times with bowel obstructions, hernia repairs and second operation to free small intestine trapped by scar tissue. Have 3 to 4 bowel movements a day, dietary restrictions and gas pain problems. I do weight training 4 days a week and lead pretty normal life for an old bloke. Every other colorectal surgeon that has seen me when in hospital tells me I need to have a bag now. My guy says that's his last resort. Definitely don't want a bag. Have fought against it, but if it came down to have a bag now or you will die, then easy decision. I will have the bag.

  • Fysh on 08/06/2023 - 16:47
    +3

    move to a state with assisted death like SA , get the treatment and if the life isnt as you expect you can go down that path.

    medicine is very advanced these days and this might be something that inspires the next venture in your life raher than end it as you know.

    Maybe your next task in life is to push for people to take better care of themselves

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