Suspected crohns? Calprotectin results 4300!

[dontcomeatme]

I'm just looking for anyone here who either has crohns/IBD or had similar test results, I'm really worried.
Started having symptoms in November, blood and mucus in stool + softer stools. My GP performed a calprotectin test and FIT test. I am 32F. My FIT test was positive and calprotectin levels were 2342 (normal is around 50). I was referred straight away but due to being pregnant at the time the doctor only felt comfortable performing a sigmoidoscopy. The doctor wasn't convinced of crohns at this time due to lack of inflammation in the area examined. 2 spots of inflammation were spotted and the biopsies showed structural anomalies which would indicate years of chronic illness. It was agreed a full colonoscopy would be performed after the baby was born. I am now 4 months post partum and have my colonoscopy is in 2 weeks. The doctor has done a full blood count, another FIT test and calprotectin test in preparation. FIT test is still positive, bloods are all over the place and calprotectin 4300!! They are saying if it's crohns I would be in a severe flare up (going multiple times a day, unable to stop it coming out, weight loss, blood etc), I am experiencing none of this other than blood and mucus. My white blood cells were really high, red blood cells really low, loads of others either high or low, not many in the normal range, inflammation markers really high too.
They don't seem to have any clue what it could be other than "suspected crohns", but the consultant seemed perplexed I don't have more symptoms. I have been feeling absolutely exhausted and having dizzy spells but I just put that down to tiredness from newborn and breastfeeding!
Anyone else have crohns can shed some light? Or been through similar? I'm really worried at these results and dreading the camera.

Hopeful bump 🤞

Symptoms can settle during pregnancy, im sure my doctor told me this. I also had to delay colonoscopy due to pregnancy, breastfeeding then getting pregnant again.

@MynewnameisI have had zero symptoms all my life until I was about 5 months pregnant. Symptoms started in November. I'm now 4 months post partum and still have the same symptoms. Doctor seems to think my numbers being that high should indicate a severe flare up, but I'm definitely not experiencing what he described x
Were you diagnosed with crohns ?

If you look at Crohn’s and Colitis UK website it’s very comprehensive. My DH had blood and mucus and has since been diagnosed with colitis and diverticulitis which has similar symptoms to Crohn’s, you may also have polyps, but it’s good that you are having a colonoscopy to see exactly what is going on. My DH got told straight after with myself present what he had, they also look biopsies at the same time, thankfully no cancer was found.

The Calprotectin level isn't very specific. You can get very high levels with proctitis (inflammation of the rectum) and relatively low but elevated levels with Crohn's. My level was literally off the chart (just recorded as >6300) and it turned out to be fairly mild proctitis.

Thank you both !
@MindymomoI'm glad your DH is okay and nothing sinister was found 🫶 the doctor ruled out colitis and diverticulitis when I had the sigmoidoscopy test due to where those normally present in the colon. Thank you though, hopefully it's just undiagnosed IBD 🤞
@LougleI didn't know that about the different illnesses and different levels that is very reassuring thank you!

I had levels slightly higher than that and was still at work every day. Like you bleeding and mucus and needing to go quite a few times in a morning and evening but that was it. I find the drs and nurses are very focused on numbers from test results and forget we’re real individual people with various symptoms!

@lennonjso are you/were you diagnosed with crohns or something else? I'm finding it all so confusing, every doctor I've spoke to seems to have a different opinion 🙄

@dontcomeatme yes, I’d already been diagnosed. I had various tests over about a 5 year period where I would have symptoms by the time the referral came through for the test these would be gone. Eventually I saw a consultant who told me to ring his secretary when I had symptoms. I was then diagnosed and the symptoms I talked about in previous post were my flare symptoms.

Thank you this is very helpful to know! X

Yes! I was diagnosed with crohns last year.
had severe blood and mucus constantly, no toilet to speak of, just gunk literally all day long. I could go 10-15 times a day. Very tired, dizzy, wobbly, like a severe hangover. Anxious. Tearful. Confused. Painful hands and feet, cramp in calves..Feel dreadful!

took them a while to diagnose after colonoscopies which showed proctosigmoiditis and diverticulosis, polyps etc, plus I have a fistula which they are looking to treat. I’ve been on meds for about 7 months, but don’t really feel that much better.

and you don’t always lose weight. I was hoping to, as I’m a bit of a lump, but no. Only thing I’m losing is my hair.