Living with IBD (Inflammatory Bowel Disease) Ulcerative Colitis /Crohn's

Just trying to find out how many people are living with this diseases and from which country is the most. There is a estimate that there are around 80,000 people living with this in Australia and cause is still unknown and still in research.

By the way I am from Nepal and its been 15 years living in Australia. In my country this diseases doesn't exist and I believe that I may be the first one from my country.

I was first diagonised in 2012 and in 2016 I went for 3 major surgeries and my colon was removed. Since then I feel much better than before but I think living without colon is much harder than before and most of the time I have lot of issues everytime and have to see my doctor every month.

If you are also living with this then please share your experience and also let know which country are you from. May be this will help in some kind of research in IBD.

Comments

  • Oh damn, I'm sorry you have to go through that.

    By the way I am from Nepal and its been 15 years living in Australia. In my country this diseases doesn't exist and I believe that I may be the first one from my country.

    I think that might be down to Crohn's Disease having (partial) immunological causes, kind of like allergies. From purely anecdotal evidence (and I'm not a doctor), immunological issues seem to be more prevalent in immigrants because:

    1. Higher (too high) standards of hygiene in Australia and other Western countries - the prevailing theory being that the lack of pollutants, pathogens, and other legitimate targets for the person's immune system causes the immune system to wrongly classify other particles (allergens and a person's own cells from time to time) as targets for the person's immune system);

    2. Different diets - it's well known that a HUGE portion of ethnically Asian people lack the genes necessary to process lactose properly leading to a much-higher-than-global rates of lactose intolerance among ethnic Asians; in the same way, it's possible that certain people might just be genetically predisposed to having other food intolerances (of which Crohn's is an extreme case) which just do not manifest until repeated and continued exposure to that particular foodstuff (many allergies only manifest after prolonged exposure);

    3. Survivorship/ bias - not directly a cause per se, but a lot of the time, higher rates of any rare/complex/hard-to-diagnose disease in Western countries is just due to a better / cheaper / more widely available health system finding and diagnosing more individuals with these diseases, whereas in their home country the condition might never make it in front of a doctor, might (more easily) be misdiagnosed, etc.

    In any case, I have a good friend with Crohn's (though not to the extent of requiring surgery yet - fingers crossed), so good luck and hopefully the medical world can figure something out sooner rather than later.

    • It's usually diet just loosely based on observation of people from first world/high standard hygiene but still suffering from acquired autoimmunity.

      Obviously this isn't scientific data but it strongly suggests a strong contributor.

  • I was diagnosed with Crohns in April 2014. Thankfully I have avoided any surgeries so far, but I take a couple different medications every day.

    I have lived my whole life in Australia. Symptoms did start occurring about 6 weeks after I returned home from a trip to Japan. No idea if it's just a coincidence or now.

  • I notice alot of crohn's sufferers travel alot. However they have no idea what causes it, they are basically throwing darts at a board blindfolded, if you dont know the cause there is no way you can find a cure.

    • Interesting. I’ve been all around Europe, the southern states of America and Japan twice…

  • Hi Destination, I got diagnosed with it too in 2017 May but not severe as yours. I’m taking purinethol and infliximab at the moment. Also From Nepal, Male- in Australia since 22 years. Seeing two specialists.
    No other issue except going to long toilet 3-5 times a day especially in the morning. Blood test every three months.
    Haven’t restricted any diets, but quit smoking.

    • Hi Ashikk,

      Sorry couldn't get back sooner. Sorry to know that you have got it too.

      Just would like to suggest to see very good specialist as while I was diagnosed, Dr gave me too much prednisolone and because of that I have a bone density issue and thyroid problem as well.

      All the best.

  • Well this died off.

  • Which do you have UC or Chron's ?

    UC can be cured with a proctocolectomy

    • Hi, Sorry for late reply. I have got UC.

      • Get a proctocolectomy mate, it's curative. No more pain & risk of cancer or infection.

        initially you'll have an ileostomy and then they'll do a ileostomy reversal (joins the terminal ileum (assuming there is no backwash illitis) and attaches it the anus)).

        I've seen many patients who have had them done, and the outcomes are great.

        • I have already gone thru this and had three surgeries. Its been year now, feeling better than before but life has changed after the surgery and obviously living without colon is far way different.

        • When I consulted the specialist about this after reading here and somewhere else, he said it is rare and is the last resort because of complications it brings in after the surgery.

          • @ashikk: Did you consult a gastroenterologist or a colorectal surgeon ?

            • @paraneoplastic: I consulted with colorectal surgeon but seeing both ATM. Gastroenterologist said the same thing "surgery is only for worst cases".

              • @ashikk: Where on the step up immunosuppressants are you at currently + how many flare ups are month ?

                Surgery is for the 'worst' cases, but from when i had my colorectal term, the surgeon i was with typically operated immediately on young diagnoses, as the longer you wait the more risky the operation becomes (in terms of anaesthetic risk etc etc). Moreover, the risk of adenocarcinoma being 10x as high as the general population is of course not ideal as well, and the fact the colonscopy (gold standard for tumour diagnosis) can perforate UC bowel due to how friable it is.

                Any who mate, hopefully your doc's are good and take care of you well!

                • @paraneoplastic: Sorry should have cleared in the beginning, Its Crohn's for me not UC. Only taking 1 (Mercaptopurine) ATM and Remicade every 8 weeks. no flare ups.

                  • @ashikk: Ohhh that makes a lot more sense haha, yeah mate unfortunately im sure as you know, Cr can't be cured, really a horrid disease.

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