Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
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Soldato
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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.
Soldato
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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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Soldato
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I’m home now, all went well. 
I’ve always found that first bite to eat after fasting and flushing yourself out is heaven!I’m home now, all went well.
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.
Soldato
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The drink they offer you in recovery is always the best cup of tea I’ve ever had
. 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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Soldato
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So I came across this in a documentary I was watching about our ancient symbiotic relationships with bacteria
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...
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.
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.
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.
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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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.
Just curious. Any other symptoms?
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.
Soldato
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Hi all
Other half has had UC for about 2 years. Since July, has been in a big flare which her medication hasn’t been able to suppress.
Ended up being admitted 10 days ago.
IV steroids couldn’t clear up her CRP marker which has been hovering at mid 30s, though did drop to mid teens when she felt her worst.
They started her on Infliximab on Tuesday and since then has felt brilliant. Normal stool etc
However her CRP has been hovering at mid 30s, now at 40.
Doctors are mega confused as she’s up and about pain/blood free.
Wondering if anyone else went through something similar as she’s feeling quite defeated and confused.
Ta
Other half has had UC for about 2 years. Since July, has been in a big flare which her medication hasn’t been able to suppress.
Ended up being admitted 10 days ago.
IV steroids couldn’t clear up her CRP marker which has been hovering at mid 30s, though did drop to mid teens when she felt her worst.
They started her on Infliximab on Tuesday and since then has felt brilliant. Normal stool etc
However her CRP has been hovering at mid 30s, now at 40.
Doctors are mega confused as she’s up and about pain/blood free.
Wondering if anyone else went through something similar as she’s feeling quite defeated and confused.
Ta
Very early to see such an impact from infliximab. I’m assuming she got the 3-4 doses across a single month to build it up into her system? After that I take a single injection every 2 weeks.Hi all
Other half has had UC for about 2 years. Since July, has been in a big flare which her medication hasn’t been able to suppress.
Ended up being admitted 10 days ago.
IV steroids couldn’t clear up her CRP marker which has been hovering at mid 30s, though did drop to mid teens when she felt her worst.
They started her on Infliximab on Tuesday and since then has felt brilliant. Normal stool etc
However her CRP has been hovering at mid 30s, now at 40.
Doctors are mega confused as she’s up and about pain/blood free.
Wondering if anyone else went through something similar as she’s feeling quite defeated and confused.
Ta
Soldato
- Joined
- 14 Apr 2014
- Posts
- 7,979
- Location
- Hampshire
Only had a single IV infusion so far, but the discussion for surgery has already popped up.
From the research I’ve found online it can take a little while to have an impact, and in some cases, 2 infusions, so seems very early to make a judgement call - which is what it feels they’re doing.
I’ve had two surgeries for resections of the small bowel as none of the immune suppressor drugs were available at the time. I’ve been on humira and then entyvio. Only changing to entyvio because your body can start building a resistance to the drugs. Touch wood I’ve been mostly symptom free with no flare ups. Still need to avoid some foods etc or a quick trip to the toilet will be on the cards. Fingers crossed the drugs she is getting will avoid the need for surgery.
If I recall correctly, I responded almost immediately to Infliximab, so perhaps it is working well for her. Not sure how long it took my crp levels to go down but it is typically higher than normal. Unfortunately for me, it stopped working after a year.Hi all
Other half has had UC for about 2 years. Since July, has been in a big flare which her medication hasn’t been able to suppress.
Ended up being admitted 10 days ago.
IV steroids couldn’t clear up her CRP marker which has been hovering at mid 30s, though did drop to mid teens when she felt her worst.
They started her on Infliximab on Tuesday and since then has felt brilliant. Normal stool etc
However her CRP has been hovering at mid 30s, now at 40.
Doctors are mega confused as she’s up and about pain/blood free.
Wondering if anyone else went through something similar as she’s feeling quite defeated and confused.
Ta