IIRC it’s basically the same condition just the extent is different. UC is inflamed large bowel, crohns is lips to bum hole anywhere between.
Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
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IIRC it’s basically the same condition just the extent is different. UC is inflamed large bowel, crohns is lips to bum hole anywhere between.
You can also have Colitis, but with some symptoms of Chron's; I certainly used to. The only thing I get now is mouth ulcers when I'm run down / stressed, or another ailment flares up.
We're not allowed to diagnose here, and frankly I doubt we could. But if they say you've got Chron's, then that's your answer.
Severity is much more impactful than which type of IBD you have. Yours sounds milder, which is wonderful news, subjectivity speaking. Did they test your CRP? Do you know the result?
Fingers crossed you're on the right treatment soon and back to feeling well.
Soldato
Just been prescribed Tacrolimus suppositories, which i gather are made to order as they are expensive and uncommon. I should feel privileged. Gonna be interrsting amd challenging two weeks!
I've heard that some cases they rediagnose you, just want to talk to the gastro so I don't have to keep guessing
Yeh had CRP it was 28mg/L which is in normal range AFAIK, had Calprotectin last year it was 1300~, one I had a few weeks ago was 900~. Main symptoms I have is pain in my lower flanks, and loose stools
Doctor told me I was supposed to be having a scope in Jan but it came and went with no letters/correspondence.
I know the health world is a bit nuts at the moment, has anyone else had theirs's delayed? I'm not even sure who I contact to get it resolved, I have no direct contact details.
I know the health world is a bit nuts at the moment, has anyone else had theirs's delayed? I'm not even sure who I contact to get it resolved, I have no direct contact details.
It's not quite clear what you're referring to though.
"Doctor" - do you mean your GP or a gastro consultant/registrar? Who told you January if you've not had any correspondence?
Was that just your GP giving an estimate for example? In which case there might have been a delay with your referral or perhaps some admin issue or perhaps they've got a longer waiting list. Perhaps look up the endoscopy services at the hospital you've been referred to and phone the admin people/medical secretaries there?
Alternatively, if you mean a gastro consultant/registrar at that hospital then I guess you can rule out referrals getting lost/sent to the wrong e-mail/fax by your GP's secretaries etc.. are you already an IBD patient? There should be an IBD helpline or e-mail address you can contact if you've got a diagnosis and are under a team at a particular hospital, they might be able to assist here.
My IBD doctor, definitely not my GP. Had some samples taken late last year and had a phone consultation, where he confirmed a colonoscopy was going to be scheduled sometime in Jan.
Thanks - I'll see if I can dig out any contact details.
If it's a scope, it's prolly under endoscopy, ring and moan at them
Think that'll be my course of action! I just figured it might be because a lot of things are getting pushed back, but we're now a full week into the following month, so maybe I've been lost in the system.
Cheers!
I've had many appointments cancelled and pushed back, especially in gastroenterology. A lot of it depends on urgency I think, the anti-coag team have seen me twice a week and booked appointments 2 days ahead etc. My guess is it'll depend on how busy your hospital is, and the relevant department, and how many of them are helping with COVID wards.
If it's a scope, it's prolly under endoscopy, ring and moan at them
Nice to know this applies across the country
Generally speaking they're super helpful on the phone, especially if you're moaning
Soldato
Do they make them to order based on ring size?
You'll be alright, just trust me - don't fart.
Slightly related story - I have the thing that can become a peri-anal fistula on my bum. They put a seton in it a while ago. I hurt my back quite badly last year and ended up in A&E. Because of the crohn's, I can't handle any opiods take orally. So they decided to give me a suppository. But the bloody nurse had to insert it, and she found the string and pulled on it like it was a bloody rip cord!
Yes, been waiting for mine since late December.
Just to clarify, a nurse found some string hanging out your bum, and based on her medical expertise, her instinct was to forcefully yank it?
Dear God my man. You have my sympathies.
Soldato
Jesus Christ! I have a seton and even a sudden movement sometimes causes discomfort so a yank must have been massively painful! Any lasting damage? Hope you them an earful!
You're notnthe first tonmake that joke about ring size this weekend, lol. Not been brave ebough to try one yet.
My completion surgery has been pushed back until at least next year. I’m not in a rush as everything is manageable at the moment although I have had a few twitches and spasms which luckily calm down quickly. Just using Salofalk suppository’s twice a week which seems to keep the colitis in the stump at bay.
I had a fistula surgery a few years back a laid open wound when you are flaring with colitis is not a nice experience….
I had a fistula surgery a few years back a laid open wound when you are flaring with colitis is not a nice experience….
Soldato
Yes!!!
Hah well no, it was fine actually. It didn't hurt very much compared to my back pain and I thought it was quite hilarious. I actually have two because I managed to pull the first one out hah.
Ah you'll be fine. As I said though, don't fart. It may feel like you need a poo, but you really need to wait to be sure that the suppository has dissolved first.
That sounds horrible, sorry to hear that.
Yes fisutlae are awful. I wouldn't wish them on my worst enemy.
Monday’s infliximab infusion didn’t go very well, had a bad reaction whilst having it so it was stopped. I’m being switched to vedolizumab in eight weeks, similar process one infusion every two weeks then four then eight etc.
It’s got far less side effects and likelihood of reactions but it’s far more expensive.
It’s got far less side effects and likelihood of reactions but it’s far more expensive.
I'm on Ved, it's awesome stuff.
Expect lethargy and headaches for the first few ones, eventually I felt almost completely fine straight after.
Soldato
What were your side effects? I developed them too snd stopped eventually.
More of a dizziness, massive anxiety and sickness. BP, pulse and temps all okay. Stopped shortly after stopping the infusion but woozy then all day.
I had a reaction to infliximab too made me feel and be sick. Pulse raised a fair bit and felt awful. They stopped the infusion and monitored in hospital overnight. Was fine the next day just felt a bit sicky every now and again.
Soldato
Oh that sucks. Mine was chest tightness, getting brrathless and tingling in my arms, all during the infusion iteself.