To ask, if you have IBD/Crohn's/Ulcerative Colitis what were your first signs?

[warmblues]

I am currently awaiting a referral to gastroenterology with potential IBD after a stool sample came back with 'very high' levels of inflammation. I've been trying to research what people's first signs of BD were, but I know it can vary a lot in severity, so I'm just curious - if you have IBD what were your first signs and symptoms?

High temperature, loads of tummy pain, terrible diarrhoea and sickness. Blood in diarrhoea sometimes looked like an abattoir in the loo.

I have Crohn’s colitis they think but even having my large intestine out they couldn’t exactly tell if I had CD or UC.

hope you feel better soon. It’s a shit illness to have, pun intended.

GP can prescribe steroids if they’re convinced enough you have it. So you don’t have to wait for referral.

I was diagnosed in 2016, initially with ulcerative colitis but later diagnosed with Crohn’s disease due to inflammation all the way to the terminal ileum.

My symptoms came on really quickly. Lots of blood in my stools, needing to go to the toilet 20 plus times a day, throughout the night. Awful runny stools (sorry) general awful symptoms.

I was referred on to the 2 week pathway where the shock diagnosis was given and I was immediately put on medication.

Calprotectin levels have only come down recently due the normal range due to me being on biological medication.

Is anyone active on here please reply. X

Hello @Bubbletrouble2 are you OK?

Hey @GrannyAchingsShepherdsHut thanks for replying it was just about my DH who has suspected IBD.. he’s calprotecten levels are on 374 and he has blood in he’s stools.. diareah and fatigue.. it’s calmed down abit now but last week it was a lot of blood where the whole toilet water went red… I’m jus thinking what if it’s more sinister even thought they are not concerned at all

I've definitely had times like that, and also passing clots / bloody jelly sort of stuff. So it could certainly be IBD. But of course other things do cause bleeding.

Is he on medication? Is he waiting for a referral to a consultant / some other investigations? Has he had any investigations already?

Does he have a IBD nurse he can contact?

@GrannyAchingsShepherdsHut yes he’s had jelly stuff come out to! He son a routine colonoscopy wait and urgent gastro referral… I feel so sorry for him o want to help him so bad … did u initially have a stool sample first. ?

Also do u have UC or crohns

I had UC. (I've had my colon removed now)

I was diagnosed by a gastro consultant, who used a scope to look at the very end of my bowel (UC always starts at your bottom and spreads further in as it gets worse, crohns can start anywhere in the digestive tract so might not be visible that way). I was then referred for a flexi sigmoidoscopy, which is like half a colonoscopy, to see how bad it was.

I take it he's on no medication at all at the moment?

It sounds like - if it is IBD - he needs steroids to get this flare under control, then a treatment plan to maintain that.

Does he have a date for any appointments yet? The urgent referral, is that on a two week wait?

If he gets really bad, lots of pain, lots of blood, worried about dehydration, that sort of thing then it would be reasonable to go to A&E. Has he been given any warning signs to watch out for and seek medical attention?

Also, I'd hope he's been told this, but just in case - he mustn't take anything like immodium, it can be dangerous.

I had IBD, collagenous colitis. Symptoms were diarrhoea which no change of diet helped, went on for weeks. I used to avoid eating and drinking anything and took Imodium if I had to go out. I had a colonoscopy where a biopsy was taken and my condition diagnosed . I was prescribed a steroid treatment which worked immediately and I have not had a recurrence. That was 3 years ago. I asked my doctor why it took so long to get a diagnosis, it took 6 weeks. He said that the average time was over 3 years!

Ulcerative colitis for 15 years all of the symptons mentioned tried loads of different meds nothing worked. I just wanted to say anyone who has been prescribed steroids be very very careful they push your blood sugar up so I am now diabetic. On the other hand I am on immune suppressants an the colitis has stopped but now have no immune system but I feel well and normal.

Thanks for all your replies … no time frame here just under urgent and they said we looking after the new year … we went to a&e yday waited for 12 hours and said he will get a urgent colonoscopy letter in the post .. chased it up today and I’m told it’s a routine colonoscopy and not urgent .. I was fuming !

today he has ALOT OF GAS.. is that normal he’s sitting on the toilet and Just has loads of gas coming out x

sorry if it’s TMI x

Also feels very wiped out after every toilet trip :(

Colitis. Ultimately determined to be mild.

Toilet full of blood all the time.

Now mostly just mucus and occasional urgency.