Fecal calprotectin content over 2000! Help!

[DLGJ]

Hi I’m very new to this but I need help! It’s a long story! I had a baby in March 2018, three months after I started suffering from rectal bleeding! I had a camera apparently it wasn’t a full colonoscopy in the September and they diagnosed hemroids. My symptoms got worse and worse to the point I can’t pass wind and I loose so much fluid from my bum. It was decided I would have explorative surgery in the July. The doctor seemed focused on this hemroids theory. When I woke up I was told they’d removed hemroids and found a bowel prolapse and did nothing about it. Now fast forward 6 months later my symptoms are even worse than before, I’m in agony with my stomache and I’ve had a stool sample for this first time which is crazy as I’ve had these issues for so long and my levels are over 2000! I am shitting myself as to what on earth can be wrong with me.

[willow24 Administrator]

Calprotectin level that high would indicate IBD in a flare. I would imagine next step would be urgent referral to a gastroenterologist and a full colonoscopy with biopsies. Biopsies show changes at cellular level within the tissues of the bowel that are present in IBD but not healthy bowel.

What are your symptoms, diarrhoea, frequency, weight loss etc. If there is anything you dont want to discuss publically you can message me privately, although we are a great group here offering support and advice xx

[DLGJ in reply to willow24]

Hi thanks for replying. It started off with bleeding and mucus and now I have constant bleeding. Urgency to go the toilet numerous times a day. Even if I wee I pass a lot of brown or red fluid from my bum. I get a pain in my lower left stomach which can last a few days and hurts to touch. I also went through a phase where it hurt to eat in the top middle of my stomach as a result I’ve had weight loss. I also had a CRP result of 13 but they didn’t seem concerned about this. The consultant who I have seen the two previous times for the colonoscopies seems to just dismiss everything and he is the head of the region I live. Obviously I’ve googled and it’s came up with colon cancer aswell :/ he ever even ordered these tests it was my GP. This has literally been going on since May 2018ish and I feel like I’m going insane

[willow24 Administrator in reply to DLGJ]

It certainly sounds like IBD. Can you not ask for a referral to another consultant or another neighbouring trust. This is what I did as I was constantly being treated with just steroids and would flare the minute I came off them, and suffered many side effects on and off them. I moved from Worcestershire to Gloucestershire Trust about 20 years ago, and it was the best thing I did. Also, I can be in a flare and my CRP remains quite low for months then will rocket up - it took the new consultant to listen and recognise this trend. Its not uncommon among IBD sufferes that their inflammatory markers dont reflect their flare up, There are good consultants out there, maybe discuss this with your GP, they might be able to recommend someone.

Big hugs xx

[DLGJ in reply to willow24]

Thank you. I’ve got a GP appointment Friday who is going to do me a referral to gastro i think. I’m seeing the bowel consultant on Tuesday I managed to move my appointment forward so il also see what he has to say. I’m very fortunate that I get private medical care with work but haven’t really felt the need to use it until now so as soon as I get the referral through on Friday I just have to ring axa and they’ll get me in with a specialist within 2 weeks. I’d still be interested to see what my consultant says though. I just feel like I’m bashing my head against a wall with it all. It’s gone on for soo long and is only getting worse and worse xx

[FRreedman]

Whilst waiting for your appointments to come through, there are a few things you can do to help yourself. Reduce all alcohol, stop all fizzy drinks, don't eat peanuts, sweetcorn (indigestable), Brussel sprouts and baked beans (obvious reasons). You can also investigate a formal diet, and request a dietician appointment to discuss this further. The indications you have given so far, do seem to favour IBD (Irritable Bowel Disease). Please keep us informed of your progress, and remember, we are all here for you (generally at any time of the day or night).

[willow24 Administrator in reply to FRreedman]

Not sure if typing error but IBD is inflammatory bowel disease not irritable bowel disease. Sorry but there is a huge difference between the two.

[FRreedman in reply to willow24]

Wow!! I haven't used that phrase for years!! I stand corrected and apologise. Thanks for, not just, picking it up but pointing it out as well.

[NL88]

Try Niacin enema and Niacin 100 mg to stop the inflammation and considers the SCD Diet maybe

[DLGJ]

Thank you everyone. Il keep you posted hopefully after 2 years I might begin to finally get somewhere! X

[DLGJ]

Hi I was just updating to say I’ve seen my consultant who did the hemmroid op and he is also thinking IBD he said my calprotectin was even higher than 2000 it was off the scale. I’m going private so am having my first gastro appointment tomorrow night. Can you feel sick with this condition? I’ve been feeling sick since Saturday for no obvious reasons. A few months ago I had the same as was feeling sick to the point I thought I was pregnant. I wasn’t obviously thank god x

[Avastu in reply to DLGJ]

Hi there,

My husband has also 922 calprotecin, normal gp refered to urgent colonscopy ,but the public ones has long waiting period, so we arranged to visit private gastro specialist for consultant ,he checked up everything top to bottom,he said everything is fine,blood results are normal.

He has suggested us to again to calprotecin and some parasites test ,if again it comes high then we will also go for private colonscopy which we have to pay out of pocket..

My husband has gas ,bloating symptoms,and sometimes hearburn,,stool normal,,and he has hemoroids as well..