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

  • Fornax on 08/06/2023 - 17:41
    +4

    Hi Gordan I was diagnosed 9 months ago with stage 4 colon cancer. I'm 41 years old. After couple month of chemo I ended up having an infection. They tried to pressure me into surgery in December which would of resulted in a colostomy bag which like you I was devastated by the thought of it. I had one surgeon pushing hard and another behind their back shaking their head in disagreement. I choose not to have the surgery and continue with chemo which has shrunk the cancer so it was a good choice for me to delay. They now aren't considering surgery at the moment but I know there will come a time when I will have to. The last 9 months of chemo it's giving me more time but I feel sick or tired all the time and have nerve damage in hands and feet from chemo and can't stay on my feet long enough for a grocery shop but I have young kids so I keep fighting and keep working. I wish I could quit work so the little energy I have could be spent with my kids. I wish you the best of luck because it's a hard choice and doctors won't help you answer the tough questions

    • GordonD on 08/06/2023 - 18:07

      Thanks for reminding me about chemo. I'll have to make a note to remind myself to ask about the possibility of that. I know other people whose treatment when they were diagnosed was chemo, and I was a little puzzled that I was told the only option was surgery. But you and other people here are all talking about nerve damage from it. I'd never heard that before. And I've already had it, and not fully recovered, after previous medical treatment that I was told was very safe.

      • aliam on 08/06/2023 - 22:20
        +1

        There are many different types of chemotherapy, with differing side effects. People may jump to conclusions, so it's important to have an informed dicussion with the treating oncologist.

        The "nerve damage" being referred to most likely is describing peripheral neuropathy. This can be a result of some chemo drugs. It may cause numbess, tingling or pain in the fingers and feet.

        • tight-ass on 08/06/2023 - 22:54
          +3

          As @aliam mentioned above, the nerve damage is caused by some but not all chemo drugs.

          In my case it was Folfox that did the damage. It came on rapidly and was so bad I could no longer write, do up my shoe laces, shirt buttons etc….my hands were pretty much useless to me.

          My feet weren't much better and I struggled to drive my car as I couldn't feel the brake / accelerator pedals. I avoided stairs and even walking around hurt.

          5 years almost to the day I can report the neuropathy is still there, however at least I can now do all of the above again.

          • GordonD on 10/06/2023 - 11:55

            @tight-ass: I had an adverse reaction to the covid vaccine. An auto-immune reaction that damages the sheath around nerves. If it does enough damage to something vital like your breathing, or you can't walk, and end up in hospital, they call it Guillain Barre Syndrome. The pain in the gut that prompted me to wonder if I might have bowel cancer only became noticeable as the nerves recovered and I got feeling back. I have to wonder if I might have felt the gut ache and done something earlier when more could be done if it hadn't been for that damn vaccine and the best part of a year that it took me to get back to being able to fully use my hands and use taps and eating utensils, and walk at a normal speed and use ladders and stairs.

            The reaction to the vaccine, which I was assured was very safe, and a previous incident where they almost killed me with another medication, is part of the reason I'm reluctant to listen to doctors' ideas about what it safe and best for me. They skip over the risks and bad things that can and do happen.

  • GordonD on 08/06/2023 - 18:38
    +10

    Hi again everyone.

    See my STOP PRESS above.

    Drinks are on me tonight.

    • try2bhelpful on 09/06/2023 - 09:08
      +1

      Fingers crossed for the next colonoscopy. Let’s hope, if surgery is needed, it is less radical.

      • Tsubasa on 09/06/2023 - 21:59
        +1

        Wishing you the best!

  • blueskyfridays on 08/06/2023 - 18:46
    +1

    Sorry to hear news. Had a family member have same issue. Got the test kits, never did it, had Stage 4 cancer and unfortunately was gone in 9 months. They had the bag and it was annoying for them as they are a clean freak.

    But it’s doable - what I’d say is also get a full body scan to make sure it hasn’t spread anywhere else. Where do you live as there are some excellent cancer treatment centres.

    The other thing I’d mention is the hospitals are good but they are all very siloed - you’ll need a case worker or switched on family member who can help.

  • MementoMori on 08/06/2023 - 19:17
    -1

    Thank you for sharing your situation. I hope discussing it here has helped you.

    Great news on your 'stop press'!

    For what it's worth, if I was diagnosed with cancer later in life, I would consider avoiding chemo (possibly I would go for surgical removal depending on what/where) and trying some 'non-big Pharma therapies' such as Hyperbaric Oxygen Therapy (a chamber where they pump lots of oxygen into your body for an anti-inflammatory effect), focus in on diet and other things that may not 'cure' but help or delay the cancer.

    I've heard of a 90 yo guy in this situation, opting to avoid the chemo style treatments (which was making him extremely sick and could basically kill him anyway or impact their life so much they might as well not live) whilst still living another 5-10 years and then dying from something else.

    I guess it all depends on the growth of the cancer and the impact of the traditional/mainstream treatment.

    I expect this 'radical crazy conspiracy idea' will get me negged but it's what I'd do and this is what you asked for.

    • MessyG on 09/06/2023 - 22:29
      +2

      And for every one of those miracle cure stories I can give you ten stories of those who tried the miracle cure and did very, very badly. Don't do this. Hyperbaric oxygen is great for wound healing and the bends but it does not in any way shape or form cure cancer.

  • hawkshead on 08/06/2023 - 20:25
    +1

    Sounds like its time for a holiday

  • Squabo on 08/06/2023 - 20:53
    +3

    As a nurse with close to 20 years experience I can tell you that stomas stink, they can be messy and there certainly is stigma attached to them.

    However thats the worst part, messy and stinky, that's it. Sounds like my poos. Your nutrition won't be affected if you eat right, you'll learn to manage them, they can be convenient, the government will fund all your stoma bags, you'll get great support from your local stoma nurse and you'll have the best chance of beating this horrible disease.

  • CalmLemons on 08/06/2023 - 22:09
    +1

    Can I ask, what is your age and how has your diet been up to this stage so far?

    Probably too late but I would consider looking into a plant based diet for now.

  • Ft Mase on 08/06/2023 - 22:26
    +1

    Hey mate,

    Losing your large intestine isnt the end of the world, i had mine entirely removed at 21 and still going strong at 36. I have no colostomy bag, I had a J pouch procedure (google it).

    Do i go to the bathroom more than most, sure. But did I not want a colostomy bag for vain reasons as a young adult, yes.

    Happy to answer any questions.

  • Zephyrus on 08/06/2023 - 23:26
    +1

    Definetly worth talking to the doctor about what your options are, but my old man had a similiar cancer and had a colostomy bag for while.

    Is missing most of his intensines now in a similiar way to what's proposed to you and he's alright with it. Has to be a bit careful with what he eats and doesn't want to be too far from a bathroom, but it hasn't seemed to affect his life all that much.

  • callum9999 on 09/06/2023 - 00:26
    +2

    Sorry to hear that, but it's good to see the doctors are happy that it's stable enough to wait 3 months.

    While I'll caveat this by staying I am not a medical professional, I did work on a GI surgical ward for about a year where a large number of the patients had similar procedures. The overwhelming consensus from the patients was a fear about initially getting the bag, followed by frustration for a few days after surgery as they're getting used to dealing with it. However, almost without exception, they quickly got used to having it and it soon became a non-issue. I can't remember anyone not leaving the ward with a smile on their face (even a few who were still teenagers).

    Obviously it would be preferable to not have a bag, but you'll likely be able to live a much more normal life with it that you might be imagining.

    All the best whatever you decide.

  • RefusdClassification on 09/06/2023 - 03:22
    +4

    Life is full of suffering (the Buddha's first Noble Truth). Out society tells us we have to cling to life at all costs, but for older people in a situation like yours, I would wish that euthanasia was a option. We have our beloved pets euthanized. It is a humane way to die. Inject a barbiturate, instantly unconscious, dead 6 seconds later. It is vastly preferable to months of misery.

  • NickCan on 09/06/2023 - 09:02
    +3

    someone I know had ulcerative colitis, and no conventional treatment helped. He was constantly in pain, experienced "urgency"-the need to poo, but nothing would come out except blood and mucous. His weight went down from a normal weight of 70kg or so to mid 40s, as he simply couldn't absorb the nutrients he needed. His diet,at this time, was completely clean, and he exercised when he could. But diet and exercise is simply not enough.

    He had a colectomy (removal of the large intestine and a colostomy bag. His qualify of life improved immensely, his weight is back in the normal range, and he's had no adverse effects from the adhesives used to hold the stoma base plate and bag on. He hasn't looked back.

    Your experience might be different, but the bag (or "appliance" the more formal name) is just a part of his routine now.

  • growler on 09/06/2023 - 11:29
    +2

    If you have facebook there's a great support group for those living with colorectal cancer. You'll find details on how to join on their website www.colontown.org
    My partner has colorectal cancer and has found the support and information from this group invaluable.

  • Pt001 on 09/06/2023 - 15:09
    -4

    Hi Gordon, I am sorry to hear this.
    Have you considered alternatives from non medical doctors, such as plant medicines, deep spiritual work, threats from non western medical professionals, etc. They could be complete alternative or supplementary to your treatment.

    • Meekas on 09/06/2023 - 18:52
      -2

      I agree in searching for an alternative, that alternative is to not surgically remove anything physical but reverse the emotional trauma which has caused the body to react. This would have occurred at least ~2 years prior, I suspect something that made you extremely angry and you were unable to digest.
      Do not change diet, find purpose in life and the healing will start if it hasn't done so already.

  • Narull on 09/06/2023 - 15:31
    +3

    Hey mate,

    I had my large bowel removed 3 years ago from bowel cancer, been living with the stoma ever since, I was 36 when diagnosed so yeah I tell everyone to take those tests.

    There are several kids of surgery for this, I had two of the three I know of, first they tried just removing the cancer, no dice needed the bowel gone, so had to have another surgery removing it fully, however if it's not too bad they can just take part of the bowel and you go on a bag temporally until it heals then they reconnect you in another surgery so worth getting the checks for that too.

    The quality of life thing….eh it's annoying, the stoma nurses (specialised group of nurses at your hospital) are there for life any question or problem I ever have I can call them for help or such, they are amazing, they will speak to you before the surgery too to prepare you and brief you on what it's like, honestly they are better then the surgeons (and I've seen several at several hospitals).

    They say there are three kinds of people, people who accept the stoma instantly, people who accept it over time (some even name it) and people who hate it forever, I hate it and always will so no lie in saying it's annoying, but I have it organised now to a point were it's become routine dealing with it, it's a lot easier if you have the stuff set out and good to go in the morning or whenever you plan to change the bag, is also a shitload of bag options, one piece that you don't empty just throw away, one piece that you empty, two piece which leaves the sticky part on your skin for longer and just kinda fits on and you just change the bag by a lock on it.

    I guess when it comes down to it yeah I do think it's worth the annoyance over the quality of life for afew more years, I remember while in hospital after the surgery I went through a phase of "I shoulda let it kill me, I can't do this" it was a very low point and yeah I don't think I'll ever 100% come back from it, there are days were I still wish it but if you ask the docs they will also explain how the cancer death would be and it's a long painful end even if you take another option I don't think that's a good one.

    If you have any direct questions feel free to ask and I can answer, I also did a AMA on reddit after the surgery years ago which got a shitton of responses you can read here if you like, I spent days replying to questions.

    (hope linking to it is allowed) https://www.reddit.com/r/IAmA/comments/luvt2l/im_a_36yo_who_…

    • pinkybrain on 09/06/2023 - 19:12
      +1

      what symptoms did you have before you got diagnosis?

      • Narull on 09/06/2023 - 19:27
        +1

        Felt sick in the lower stomach and lot of blood when I went to the toilet like a massive amount not just a bit, painted the bowl red, seeped through TP easily kind, I held off on going to doc for awhile hoping it would pass but didn't (probably not the best idea I've ever had).

        GP thought it must have been an ulcer, but wanted to be safe so had me go for a colonoscopy, will never forget the moment the doctor came out while I was in recovery and told me they have taken a sample but she has been doing this for 20+ years and it's cancer.

        Glad my doctor was thorough as every doctor/surgeon tells me these days it's extremely rare for my age group (really wish they would stop saying this actually, it's like 'yay lucky me') but they say it's good it was caught early and continue to monitor me as they expect it will likely be back one day as the amount I had for my age is so rare.

        But yeah if you're worried just ask the doc for the basic test, it's just a stool sample so extremely simple yet we have a tendency to not want to do one as the OP said.

        These days I tell anyone just get a basic test, worth the worry off your mind if you've found blood and better to find it early.

        • pinkybrain on 10/06/2023 - 00:15
          +1

          How long did you held off seeing doctor from initial bleeding?

          Did it bleed consistently massive amount in the bowl every time you went to the toilet
          or
          some days it would not bleed (ie randomly it would bleed and make just some blood on the tissue etc) ?

          • Narull on 10/06/2023 - 00:45
            +1

            @pinkybrain: I held off a good while, months easily, not the brightest idea but had hope at the time and it was everytime I went to the toilet at first I thought it could just be haemorrhoids so thought I'd just wait it out but yeah it was constant and not nice at all.

            If you're asking if a little blood randomly is okay, it's likely not cancer if that's the case is afew things that could cause it, haemorrhoids being one, ulcer, even a tear etc but still worth going to the doc for long before I did, I was dealing with some other stuff so I just tried to ignore it for as long as I could (which wasn't smart, just go to a doc).

  • fleetfeather on 09/06/2023 - 20:11
    +1

    Plenty of people I met with a col bag during my time working at hospital. They all live great lives - the col bag actually sounds like a boon once you're at an age where sex appeal (and perhaps sex in general) is not something you're interested in or engaging in

    I'd say get the bag and live your life

  • MessyG on 09/06/2023 - 22:36
    +2

    Hey OP I am sorry to hear of your diagnosis and I actually do hope you get treated for it, because with a cancer diagnosis comes a new community and new friends you make along the way and I say this as someone with personal experience (not bowel).

    Something I wanted to touch on though - is that when you say you could just let this progress and slip away quietly into the night. There are many ways to die, but dying of an abdominal cancer is not quiet. I don't want to go into details out of respect to your story, those on the forum with cancer or with a loved one, but it is not quiet. I would not recommend that option if there is a chance this could be treated well.

    I recommend listening to your teams recommendations - there is a hell of a lot expertise that goes into them and a lot of people who really care who've been doing this a long time making these recommendations. The advice that comes to you on the Internet (and I've seen some crackers of bad responses here) comes with zero accountability. Your medical team are accountable to the advice they give you, so they are invested in getting it right for you. The people on the Internet wishing diseases away with their alternative therapies are not accountable if anything goes wrong, hold zero responsibility and will bear no consequences.

    Please, listen to your team. And see if there is a relevant Facebook or Reddit group for your situation, they can be really helpful at cutting through the noise.

    • Grunntt on 10/06/2023 - 09:15
      -1

      you say you could just let this progress and slip away quietly into the night. There are many ways to die, but dying of an abdominal cancer is not quiet

      Pretty sure the OP was referring to "actively slipping away."

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

      As their profile states they are in Adelaide they appear to have that option legally available to them.

      Other than that, I do agree with everything else you wrote (I'm in a state that does not yet allow you to choose and I've had two close relatives and one friend suffer through it and that is not a way I would like to go out).

      • GordonD on 10/06/2023 - 11:21

        they are in Adelaide they appear to have that option legally available to them

        Yes, we have voluntary assisted dying here. The medically profession has finally let it be introduced, over their objections, but only by making sure that they maintained tight control of it. We are supposed to be grateful to them for that. Even here there are 17 steps that a person who is so sick they want to die has to negotiate to get permission. I won't say any more.

      • MessyG on 10/06/2023 - 13:40
        +1

        The problem with VAD is that the medical profession is not very comfortable with it so that if you unexpectedly wind up in hospital, and even if you have the drugs, often no one at the hospital has any clue how it works and do not want it to happen there, including pall care. Fine if all the ducks align but they often don't.

    • Bunnyburger on 10/06/2023 - 09:44
      +1

      Side counterpoint here, listen to your team but don't be afraid to question them and volunteer information. People (to a reasonable extent) should be an active advocate for their own health.

  • Bunnyburger on 09/06/2023 - 22:53
    +1

    Always get a second opinion.

    • Mister Popo on 10/06/2023 - 13:20
      +1

      The specialty case conference is the second opinion (and 3rd and 4th..)

  • sigur on 10/06/2023 - 09:54
    +2

    Just to add - for anyone with the poo test sitting unused in the bottom drawer. If you have ever changed a nappy then you've dealt with worse than the poo test. It's not that bad and it could save your life.

    https://www.cancer.org.au/news/proving-that-bowel-cancer-scr…

    • GordonD on 10/06/2023 - 10:55

      Yeah, I left my latest poo test kits in the bottom drawer, and threw out any old ones as I received each new one, until I had a symptom that made me use it. Did it. Sent it in. And got a letter back saying it had expired. Who'd think something like that would have an expiry date. But they were happy to send me a fresh one. My GP could also have supplied one. And after the trial run the first time, it was even easier to use the second time around.

  • GordonD on 10/06/2023 - 11:39
    +5

    I have given everyone who contributed to this thread a +. What else can I do.

    • Speckled Jim on 10/06/2023 - 12:54
      +1

      Relax, don't stress and remember we're here for you.

      "Keep Calm and Bargain On"

    • CocaKoala on 10/06/2023 - 12:56

      Stay strong. Do what you know is right for you. I wish you all the very best.

    • MessyG on 10/06/2023 - 13:41

      One minute at a time, one tiny minute. All we can ever do is live in the right now.

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