Crohns / ulcerative colitis sufferers

beachBOYken said:
Thanks, I guess it’s cost, but I’m sure they could do this in tablet form, pop a pill, drink a load of water before and after.
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Years ago I had a colonoscopy that required me to take a pill. I puked for hours and honestly considered calling the ambulance. Would not recommend.

I suspect the liquid gives you move of a mechanical action to clear the bowel i.e. pushing the **** out. A pill would mean your bowel had to contract loads to squeeze the turds out, which would be very painful (as above!).
 
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Minusorange said:
Yeah I don't rate Fentanyl or at least the dose they gave me as a pain killer, still felt like they were poking a stick inside, whatever I had last time was better
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Not related to UC but I remember after some surgery they asked was I in pain. I said yes, and gave me a an injection of Fentanyl. They asked better, I said no, so gave me another. Still felt no better so they gave me a third. All of a sudden I was like yep that's the ticket. For the rest of the night in the ward, I have no recollection. Apparently I read a book, text a load of people random crap and had some food. I don't remember any of it. Lol. Good times.
 
Thekwango said:
I’ve always found that first bite to eat after fasting and flushing yourself out is heaven!
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The drink they offer you in recovery is always the best cup of tea I’ve ever had :cry:. I was so thirsty before I went in as you can’t drink anything 2hrs before, then your appointment is never on time quite.

I also crave for fresh fruit after, but indeed the first meal is heaven.
 
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So I came across this in a documentary I was watching about our ancient symbiotic relationships with bacteria

www.aithm.jcu.edu.au

Hookworms: Unlikely heroes in the fight against autoimmune diseases | AITHM

For years, Distinguished Professor Alex Loukas from the Australian Institute of Tropical Health and Medicine (AITHM) has been hunting for a vaccine against hookworms, a parasitic infection that affects more than 740 million people worldwide. However, more recently, his research has found that...
www.aithm.jcu.edu.au www.aithm.jcu.edu.au

www.jcu.edu.au

Intestinal worms could hold key to IBD

A four year-long research study has found that particles secreted by an intestinal worm may assist in treating inflammatory bowel disease (IBD), an ailment suffered by millions of people globally.
www.jcu.edu.au www.jcu.edu.au

Seems mad but I guess it worked like this for thousands of years and it's only the last few hundred years we've slowly been developing ways to kill all bacteria and things like the worms because they can cause problems but are the problems a problem with them, or a problem with us ?

Obviously the science needs more time for research, especially on long term effects of allowing hookworms to thrive, you may just be swapping one issue for another down the road but maybe they can synthesize whatever the beneficial effect the worms produce into some sort of cure for us ?

And it doesn't seem anymore disgusting than getting a poo transplant to improve your gut biome - https://gutscharity.org.uk/advice-a...estyle/faecal-microbiota-transplantation-fmt/
 
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I used to be a big blood and plasma donator, I just found out on Sunday that I can no longer donate since I've been diagnosed with ulcerative colitis. Even though it's a good thing for me as it's less time out of my day and all that I'm still upset as I enjoyed doing it.
 
I was diagnosed with Crohns (then changed to UC) in 2016. Ive had various medications over the years but earlier this month I "grasped the nettle" and went under the knife, having all of my colon removed (including the creation of a "Ken Butt") and an Ileostomy created. A major operation that resulted in 13 days in hospital.
Im home now and slowly coming to terms with the challenges of living with an ostomy bag for the rest of my life.
Hopefully I will be free from this horrible disease and can look forward to a better way of living going forward.
 
Chin up dude - my neighbour went through similar and is loving life now - so stay positive. Thankfully my own UC is relatively mild but there are times I’d happily behave it all out!!
 
BigB@dJ@y said:
I was diagnosed with Crohns (then changed to UC) in 2016. Ive had various medications over the years but earlier this month I "grasped the nettle" and went under the knife, having all of my colon removed (including the creation of a "Ken Butt") and an Ileostomy created. A major operation that resulted in 13 days in hospital.
Im home now and slowly coming to terms with the challenges of living with an ostomy bag for the rest of my life.
Hopefully I will be free from this horrible disease and can look forward to a better way of living going forward.
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Had my bag six years now and tbh it’s been life changing. Once your all healed up and worked out a routine that works for you it will be ok. I don’t find the bag stops me doing anything other than eating skins and rhubarb. The lack of cramps, bleeding and spending most of the day on the toilet is like a new lease of life.
Be careful if you are doing any lifting you are entitled to free support belts and it’s worth getting one as it’s easy to get a hernia. You are also entitled to free prescriptions for your stoma supplies as it’s permanent hopefully your stoma nurses would have explained all of this and set you up with a supplier (usually coloplast).
 
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BigB@dJ@y said:
I was diagnosed with Crohns (then changed to UC) in 2016. Ive had various medications over the years but earlier this month I "grasped the nettle" and went under the knife, having all of my colon removed (including the creation of a "Ken Butt") and an Ileostomy created. A major operation that resulted in 13 days in hospital.
Im home now and slowly coming to terms with the challenges of living with an ostomy bag for the rest of my life.
Hopefully I will be free from this horrible disease and can look forward to a better way of living going forward.
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I've had my ileostomy for 5 years now and it's just become a part of life. I'm infinitely better than I was prior to having surgery. As MOOGLEYS said, not having to deal with bleeding, cramps and urgency makes such a huge difference.

It definitely took me a good 6 months to feel like myself again but once the adjustment period was over, it's a blessing. I lift weights, play golf, work full time. Indo everything I did before surgery and more.

There's loads of help and information out there online. I found Instagram and Facebook really useful for finding advice and meeting people going through similar. There's a surprisingly big community of us out there. I even went to a meet up for estimates which was great.

The 2 biggest tips I can give is to find a bag that suits you and get fitted for a support belt. Hernias are a big risk and there's not always and rhyme or reason why people get them but I would try my best to prevent it.

If you need any help or anything, feel free to PM me on here.
 
That Jekka Gal said:
I had my first flare up in September 2021 when my ex had Norovirus - not sure if I'd also contracted the virus too but all the action was very much at the lower end - lasted almost 2 weeks.

Then I had another 2 flare ups in the following 12 months - again each lasting approx 12 months.

Had a large bowel scan which showed nothing untoward.

Then, in Jan 2024, I ate a suspect salad on the beach before getting on a 10 hour flight (thank God I had an aisle seat) & the problem persisted for 2 weeks or so, once again & then once again in the March of that year.

At this point I got really persistent with my local GP surgery. To be fair, they'd been pretty good throughout & got me an appointment with a consultant some 6 months down the line.

So, I went abroad and, thanks to a connections and gifting a couple of bottles of whisky) got myself a consulation with a specialist who recommended an endoscopy & colonoscopy - all of which happened during the 2 weeks I was there.

Thankfully I was knocked out cold with propofol for both procedures so was aware of nothing.

Both scans came back clear & only signs of any irritation were down to the large numbers of anti-inflammatories I'd been taking.

It was a relief but still a mystery as to why these flare ups had been happening.
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Just curious. Any other symptoms?
 
BigB@dJ@y said:
I was diagnosed with Crohns (then changed to UC) in 2016. Ive had various medications over the years but earlier this month I "grasped the nettle" and went under the knife, having all of my colon removed (including the creation of a "Ken Butt") and an Ileostomy created. A major operation that resulted in 13 days in hospital.
Im home now and slowly coming to terms with the challenges of living with an ostomy bag for the rest of my life.
Hopefully I will be free from this horrible disease and can look forward to a better way of living going forward.
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One day at a time! you will get used to it, like others have said afterward is way better.

Once you are confident with your bag, things will seem easier, someone mentioned getting a bag that suits you, absolutely, you can get loads of samples and test them.
I had one surgery when 18 and the "ken butt" a few years back, i'm late 30's now so plenty of experience. Any question or advice feel free to DM me.

Definitely take it easy though as that is one big surgery and plenty of healing in one go, so don't be too hard on yourself.
 
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