Crohns / ulcerative colitis sufferers

[Deep]

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

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 . 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]

Just done the same last night.

So I’m chewing mastic now. Wondering if CT1 is cheaper lol

 

[ColdAsIce]

So I’m chewing mastic now. Wondering if CT1 is cheaper lol

Mines arrived yesterday. Treating them like pain killers by swallowing the capsules with water.

 

[dirtychinchilla]

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.

​

Sorry to hear that, sounds miserable

 

[Minusorange]

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

 

[dirtychinchilla]

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

It’s really good. I had it once and I was very impressed

 

[Maccapacca]

It’s really good. I had it once and I was very impressed

It still hurts like hell especially if you’re flaring and they inflate the colon but you just don’t care

 

[dirtychinchilla]

It still hurts like hell especially if you’re flaring and they inflate the colon but you just don’t care

I think they used to give something that made you more sleepy

 

[Minusorange]

It still hurts like hell

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

 

[wingman]

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

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).

 

[ANDREW GREEN]

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

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

 

[dirtychinchilla]

I didn’t have any painkillers last time. I didn’t find it that bad, but I know a couple of women (my mum and a colleague) who suffered quite badly in theirs.

 

[Rexxar]

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]

For anyone in the know, Is the lactose-free stuff worthwhile , or am i better looked at plant-based alternatives?

I’d do a test for lactose intolerance first.

 

[dirtychinchilla]

I’d do a test for lactose intolerance first.

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.

 

[Rexxar]

I’d do a test for lactose intolerance first.

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.

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.

Thanks, Plant based stuff seems cheaper than the lactose-free versions so i'll give some of that a go.

 

[dirtychinchilla]

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.



Thanks, Plant based stuff seems cheaper than the lactose-free versions so i'll give some of that a go.

Any questions, let me know. I've been doing this for years!