To ask what your early Crohn's disease symptoms were?

[MelroseHigginbottom]

For the past couple\few months I've been having symptoms. At first I assumed they're down to my pregnancy (I'm 13 weeks) because that's when I first starting really noticing the symptoms. But I never had anything like this in previous pg.

Have an additional symptom now which, according to my Google endeavors could potentially be cancer or Crohn's disease. :(

Now my 2 brothers were diagnosed with Crohn's around my age, and my grandmother died of cancer at my exact age (31).

I have a Dr appointment for next week, but it would be very helpful to hear some of your earliest symptoms you remember of Crohn's so I can compare. (Probably not the best thing to do but I have a few days to wait to see gp and I need to stop googling).

Thanks

Hopeful bump

No direct experience but I was tested for it after presenting with piles and blood on wiping, plus IBS symptoms.

Colonoscopy suggested ulcerative colitis but further testing showed it was negative and just IBS with occasionally inflamed colon.

Bumping for you.

Stomach cramps, lack of appetite, diarrhoea, some blood in stools, weight loss. Symptoms increased and had others as it progressed

Sorry if tmi, but my sibling has this. One of her symptoms was literally what went in her mouth, came out of her arse, totally undigested. Ate a piece of lettuce, a piece of lettuce came out the other end.

Tiredness. Mouth ulcers. Abscesses, Diarrhea or loose stool. Anaemia.
You are more than welcome to PM me; I have Crohn’s and actually write for several publications about the condition and help raise awareness for diagnosis so always happy to help,

I got my symptoms in a funny order but basically lots of autoimmune ones (joint pain, fatigue, eye infections) and then gastro symptoms - diarrhoea and stomach pains - about a year later. I got tested for all sorts of autoimmune diseases before they tested me for Crohn's

Thank you all for the replies! They have been very helpful. Particularly knowing that mouth ulcers and anemia can be symptoms (I have had terrible mouth ulcers the last few days and I have a tendency to become anemic which can be fixed with iron tablets). Thank you all and thank you for the offer to PM you mattymoo55 I have a feeling it must be Crohn's now so would love a bit more info if/when the gp confirms it.

Sorry to have asked you all for personal info and not giving any myself! My symptoms have been tummy aches that seem to happen a little while after eating anything, diarrhea, tiredness no matter if I rest or not, small amount of blood in stools, and now mouth ulcers too which I hadn't realised were a symptom before today.

Mouth ulcers and constant diarrhoea.

I was diagnosed at 15, so a while ago now, but I remember weight loss, abdominal pain, diarrhoea, mouth ulcers and exhaustion being the main symptoms. I did also get blood in my stools but that wasn’t until after diagnosis.

Your symptoms are indicative of Crohn's or colitis - I hope the GP is able to refer you to a specialist.

I had all of the above mentioned symptoms and then they all disappeared when I was around 4 months pregnant. They came back with a vengeance once DD was born though.

Diarrhoea, loss of appetite, passing loads of blood and mucus (ick, sorry!) and generally feeling run down. I just put it down to exam time stress (I was at uni) and eating something funny. Pharmacist gave me totally the wrong meds to deal with it and, when I didn't get better, the GP got me a hospital gastro referral PDQ.

@mattymoo55 you mentioned mouth ulcers, have you come across scalloped tongue being mentioned as well?

I will preface this with ‘I am not a doctor in any way, shape or form’ but wouldn’t it be really unusual for an autoimmune disease to present in pregnancy?

I’m only going off my personal experience of my own (psoriasis) but I was under the impression because pregnancy naturally suppresses your immune system a lot of conditions improve whilst pregnant. Some of the medications used to control things like psoriasis and crohn’s are actually immune suppressants. That would put you at risk of a flare after pregnancy too.

Happy to be corrected but I just felt it was worth consideration.

I had horrendous mouth ulcers (counted 30 at one of my worst times) from the age of 18. My other symptoms - diarrhoea, weight loss, stomach pains - started after my second pregnancy which is typical apparently.

I was dignosed 12 years ago and after 6 months of steroids and daily/monthly medication since then have had virtually no syptoms👍

My first noticeable symptoms were vomiting, weight loss and then incredible pain (enough to hospitalise me with suspected appendicitis after going to a walk in centre). I also get the coming-out-same-as-it-went-in during a flare.

My son was diagnosed with crohns at 8 years old. His symptoms were more unusual in that he was severely constipated, he never had blood in his stools, and even 10 years later he still doesn't get blood.
His other symptoms were mouth ulcers in and around his mouth, a fistula, loss of appetite, and only able to eat certain food, things like pizza or chocolate gave him severe stomach cramps. Constant stomach pain.
He had bad fatigue, and foul breathe! He also had sores in and around his mouth, to the point that he couldn't actually open his mouth fully. I am sure there were others, just can't remember now. It took over two years to get a diagnosis.
Your first thing to do is to ask for a blood test and a cal protection test [ stool sample ] to rule out inflammation. Once these are done, if anything is found you should be referred to a Gastroenterology for a colonoscopy and endoscopy.

@MrsJBaptiste I’m more or less symptom free on medication too (8 years). If I get a stomach bug or similar, it takes longer than other people to get over it, and occasionally I get bad urgency or cramping but that’s it.

I had diarrhoea that wouldn’t clear up and I had mouth ulcers and was generally run down. I put it down to hating my job and the work environment so changed jobs and that was equally bad. Finally plucked up the courage to go to the doctors and then referred to gastroenterologist. He told me it was probably bile salt malabsorption but he would do a colonoscopy anyway. I was diagnosed with severe pancolitis.

@Fere not heard of a scalloped tongue but I have geographical tongue which might be the same kind of thing and it’s linked to Crohn’s loosely.

Also to add worth noting a lot of your symptoms could be pregnancy related but there is definitely a hormonal link with Crohn’s-I had an amazing pregnancy but know a few people who got diagnosed after giving birth

Ask your GP for bloods including a full blood count, renal and liver function, an ESR, CRP, iron studies B12 and folate levels along with a faecal calprotectin.
They won't be rushing to do a colonoscopy while you are pregnant unless its absolutely necessary - although if you do need one 2nd trimester is the best time to have it. Depending on your local hospital they may able to do a small bowel and colonic ultrasound which is really helpful and non invasive the problem is only a limited number of radiologists do it
Which part of the country are you based in?
Happy to be PM'd but don't want to say much more as outing

Bloody loose stools with mucous, needing to go to the toilet up to 15 times in a day, throughout the night. GP initially said it was piles and sent me away with two weeks worth of suppositories. After two weeks when they had made no difference I got an urgent referral for a colonoscopy which didn’t find any piles but gave me a very surprising Crohn’s diagnosis. The GP did apologise when I next saw her.

After a few years of various meds I’m now on stronger IV medication which has made a big difference.

When I had my colonoscopy I had biopsies taken, also had a MRI just to confirm the disease. Was put on meds immediately after colonoscopy and those meds have changed over the past two years.

Good luck OP. I hope you get some answers.

And on the subject of bloods. My inflammation doesn’t show in my bloods but it shows in my faecal calprotectin (poo sample) as extremely high. This is usually done after your initial diagnosis though as a colonoscopy and biopsies is the method used to make a firm diagnosis (in my case anyway).

@mattymoo55 geographical tongue is different from scalloped tongue
I occasionally get scalloped tongue and can't really find a reason for this recurring condition (neither can doctors)