Crohns / ulcerative colitis sufferers

robfosters said:
If it’s ok to ask, can you guys with UC tell me what your symptoms are please. I appreciate it can be a bit crude and personal, but we’re all friends here
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I recently was diagnosed with UC, my symptoms were basically pooping mucus and blood and very loose stool. Also if I tried to pass wind I'd end up making a mess :D. I quickly learned not to do that unless I was on the toilet.

I ended up having a colonoscopy and was given some suppositories (Pentasa). A week of those and not a problem. I had a fish & chips one day and had a flare up, took one or two tablets and back to normal.

It's crazy because I had some dodgy food and I'm certain that's what caused it, there was nothing else different in my diet before all this started happening.
 
Maccapacca said:
What infusion are you on?

I've been flaring since April, any medication seems to only work for a couple of years. In time order since 2003

Steroid oral - now only work in high does
Steroid foams - stopped working
Asacol - stopped working, grains, foams, tablets, capsules etc etc
Azathioprene - stopped working
Infliximab - had a reaction to an infusion
Vedolizumab - Entyvio - Stopped working

Tomorrow I start tofacitinib with a hospital loaded infusion then an injection every 12 weeks, hopefully this works. There's a daily tablet they were trying to get me on but in their view they have other options first that are less expensive and still give options later on so it didn't get signed off.


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Sorry to hear that, sounds miserable :(
 
Had a colonscopy today, to my surprise the sedative was Fentanyl, even had to ask if it was the very same one messing up the US, not sure on its effectiveness as a pain killer but it certainly has made me sleepy
 
Minusorange said:
Had a colonscopy today, to my surprise the sedative was Fentanyl, even had to ask if it was the very same one messing up the US, not sure on its effectiveness as a pain killer but it certainly has made me sleepy
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I had fentanyl for my last scope in 2022, made my blood pressure drop like mad - thought I was going to pass out (this was a few minutes after the scope, which wasn't painful but just uncomfortable, as always).
 
Minusorange said:
Had a colonscopy today, to my surprise the sedative was Fentanyl, even had to ask if it was the very same one messing up the US, not sure on its effectiveness as a pain killer but it certainly has made me sleepy
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Interesting. When I last had a colonoscopy 23 years ago, they didn't offer any pain relief. They injected some water to clean it out. It was uncomfortable. I actually stopped bleeding before the colonoscopy and after started again because it re-damaged the ulcers.

I took some Codeine recently, which is another opiate. Strong painkiller but I'm not if isn't 1 of the meds that's making me vomit. I've been sick as a dog for a while now
 
Well I'm not sure its IBS / Chrohns or UC, but I've definitely developed over the last 18 months, a bad reaction to dairy. Eggs were already my nemesis so this just adds to the fun.

Milk / Cream will give me bloating within the hour, yoghurt irritates my throat, and i can just about get away with a small amount of cheese like cheddar, soft cheese is out of the question.

I'm finding that if i , shall we say, make an error of judgement, that the following day i'll feel lethargic, bloated, and have a headache until the dairy is entirely out of my system , usually meaning an upset stomach in the process too. So i think i'm just going to cut it out altogether.

For anyone in the know, Is the lactose-free stuff worthwhile , or am i better looked at plant-based alternatives?
 
Stu999 said:
I’d do a test for lactose intolerance first.
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Don't do a test, they're pretty nonsensical.

I know a good amount about lactose intolerance as I have it and I have Crohn's.

When you're lactose intolerant, you don't produce the enzyme, lactase, which breaks down lactose.

The lactose free stuff has the sugar, lactose, already processed for you, as I understand it. I don't know the exact mechanism, but if you're intolerant to the sugar only then it should work for you.

You can also be intolerant to the protein, though. I know less about this, but I am one of those lucky people. Basically, if you have this type of lactose intolerance then if something's made from milk, it could trigger your intolerance, regardless of whether you are intolerant to the sugar or not.

I would try eliminating lactose completely. It's not as hard as it might seem - I just eat the plant based stuff and it's alright.

There are certain types of cheese you can eat, mostly the hard cheeses - the more they've been processed, I think, the better they are for you.

Good luck :)

ps. oat milk is great.
 
Stu999 said:
I’d do a test for lactose intolerance first.
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I asked GP about this and they essentially said it's a waste of time if you even have suspicions, and that they are not accurate unfortunately.

dirtychinchilla said:
Don't do a test, they're pretty nonsensical.

I know a good amount about lactose intolerance as I have it and I have Crohn's.

When you're lactose intolerant, you don't produce the enzyme, lactase, which breaks down lactose.

The lactose free stuff has the sugar, lactose, already processed for you, as I understand it. I don't know the exact mechanism, but if you're intolerant to the sugar only then it should work for you.

You can also be intolerant to the protein, though. I know less about this, but I am one of those lucky people. Basically, if you have this type of lactose intolerance then if something's made from milk, it could trigger your intolerance, regardless of whether you are intolerant to the sugar or not.

I would try eliminating lactose completely. It's not as hard as it might seem - I just eat the plant based stuff and it's alright.

There are certain types of cheese you can eat, mostly the hard cheeses - the more they've been processed, I think, the better they are for you.

Good luck :)

ps. oat milk is great.
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Thanks, Plant based stuff seems cheaper than the lactose-free versions so i'll give some of that a go.
 
Having a flare up this past week, (UC). Feel so tired, was up at least 4 times in the early hours. It’s such a downer getting this, I went a good year with no flares, now had 2 in space of 7 months.
Apart from needing the toilet a lot, it’s the cramp thats horrible, it’s not pain as such, just this slow sick feeling that creeps over my stomach.
 
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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