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?

I have Crohn's. My calprotectin was over 1400 so my GP referred me to gastroenterology.
First symptoms were diarrhoea frequently. Kept thinking it was stress.
If you haven't looked already, the Crohns and Colitis UK website is a really good place to find out more

Not me, but my10yo DS has been to see a gastroenterologist and is currently awaiting an endoscopy, colonoscopy and ultrasound to determine which form of IBD he has.

What took us to the GP was diarrhoea which had been worsening over a few weeks. He also has loss of appetite, weight loss, mouth ulcers, painful wind and very low iron levels. And occasional vomiting. His calprotectin levels have been consistently over 1000.

Horrific stomach pain, nothing else.

Wish there was an edit button! Over the years this has manifested in loose stools, joint pain and fatigue but mainly severe stomach pain.

Ulcerative Colitis here.

Really bad gas, constant, nothing helped relieve it. Painful to hold it in and could feel it bubbling back and forth if I tried.

Red blood when going to the loo. Enough to colour the water, not a few drops.

Mucus in stool and on it's own. Sometimes mucus when I thought I was just going to pass wind.

horrific pain, major fatigue, going to the loo more often, loss of weight, eventually passing blood, in that order.

Just been diagnosed with IBD/colitis after colonoscopy yesterday. Been very poorly over past 4 weeks and had to have a hospital stay.
started mid Oct with uncontrollable diarrhoea. No forewarning as I’d never had that type of thing before. Put up with it as thought it would go away on own but was quite Ill over Xmas and really struggled, along with the diarrhoea which changed colour and smell, I had abdominal pain, severe loss of appetite and loss of weight, achy joints, swollen gums and generally feeling very tired.
Went to Gp, did bloods and poo samples then referred up for an urgent scope, which was yesterday and I have ulcers and inflammation in my colon.
Hopefully I will get my medication sorted and I can try to get back on track but it’s not pleasant.
Hope you are managing ok? x

it was the heavy bleeding that eventually got me diagnosed but I was misdiagnosed with piles post childbirth. I’ve been anemic and thin for the last 6 years but that was put down to pregnancy, childbirth and breast feeding.
Now I’m actually gaining a bit of weight!

Apologies, wrong thread, have asked for it to be deleted.

My DH had constant diarrhoea, (getting up in the night to go also) and accidents. Also bleeding, some of which profuse. Followed by an incredibly high calprotectin result. Diagnosed with ulcerative colitis and put on steroids and octasa.

Diarrhoea with blood.

Sorry forgot to add that I also had blood in the diarrhoea which has been worrying.

Ive been prescribed Mesalazine foam ( rectal application) which I will get tomorrow hopefully but I feel like I need a course of antibiotics or something, I can’t see the foam doing much.

2 kids with Crohn’s- one stomach pain (for years until we got a diagnosis), one small amount of blood in stool and loose stool for a few days but nothing dramatic.

Since posting this I've had one day of diarrhoea but other than that quite normal stools. However, I have had bad stomach pains start over the last couple of weeks which is new. It's in the area below my rib in the middle, just a constant dull ache. I recognise it as the same place as when I had horrendous stomach cramps which made me faint followed by having blood in my stools, but it's just a constant low-level cramp.

I'm not sure whether to go to the GP about it or just presume it's a result of the IBD and wait for my referral (which is going to take months).

Ulcerative Colitis.

It started with lots of bloating and wind. Progressed to diarrhoea mixed up with blood and mucus, with lots of abdominal pain. Felt completely wiped out after every trip to the bathroom. Bathroom trips were very frequent, day and night.

I have UC. Started with blood in stools and many trips to loo! Eventually had no control of bowel movements but steroids helped massively!

Dp has Crohn's - his were acute stomach pain and significant weight loss.

Hi Warmblues
I would maybe get it checked out if you can as it’s worrying you. You’ve got nothing to lose by asking the GP.

Ex UC here.
I'd had what I called a dodgy tummy for years with diarrhoea and urgency. It was only when I started passing blood that I went to the GP. That was way before calprotectin tests, so had the tests to check for blood in poo and referral to gastro who confirmed UC.

Have been colonless and UC free for almost 18 years now. Infliximab wasn't even used for UC when I said goodbye to my colon. Medication nowadays is so different.

Crohns here. Main symptom was crippling horrendous pain a few seconds after eating anything. Lost weight very quickly. Awful fatigue. Constipation also. I hope you manage to get help x

My husband has UC. His very first symptoms were mouth ulcers actually!

Admitted into hospital with severe diarrhoea, horrendous abdominal cramps, mucus and bright red bleeding into the toilet bowl - inflammatory markers were raised slightly- a colonoscopy showed erythema and slightly diminished vascular pattern in three areas of my Colon and rectum.
Yet, my gastroenterologist appears not totally convinced despite two further flare ups (though milder).
He has requested a repeat colonoscopy.

Has anyone been in a similar situation- where a diagnosis is delayed?

Dh has ulcerative colitis. First sign for him was to put it bluntly, extreme diarrhoea. Literally could not get off the toilet. Accidents in the night etc. He then had stomach pain and vomiting.
His stool inflammation was over 3000. The highest most of the doctors had ever seen.

Oh yes, and lots of bleeding and mucus in stool.