See this now worries me even more. Your calprotectin was 600 and lots seem to be in hundreds that are worried...

I had a result today that my doctor said was >6000 (wish I would upload a pic for someone to decipher as I asked the doc to forward on the notes / numbers etc) 

I've been referred for an urgent appointment with gastro within 2 weeks.

I am in so much pain at the minute it hurts walking around and when I eat. I had a major change change in bowel habits with a lot of mucus, and sometimes passing just bloody mucus ans no stool. 

I am also exhausted! 

I know there's a chance this is one of the bowel diseases but more worried this could be bowel cancer, all my bloods seem to come back normal but with my calprotectin being so ridiculously high and the amount of pain I'm in, I'm definitely worried! 

Hi, 

Over the last 9 months I've been having some weird symptoms. I get awful stomach cramps and then feel like I'm going to pass out.. I get all hot and clammy. One I realise my bowls I feel fine again. I've had this happen twice to me ans the second time was worse. I went to my gp about this as I was abit concerned and bowel cancer is hereditary. The doctor sent me to do two samples one was for any infection the other was for calprotectin. all the infection results came back negative which is a good sign but my calprotectin came back in the 4000 my gp said don't be to concerned as usually the results for bowel cancer or something more serious is in the 200/300. She referred to a consultant to find out if it was chrons or colitis . He sent me for another stool sample of the calprotectin and a celiac blood test with a test of my iron. My iron was very low but my celiac results were normal. My calprotectin has also returned back to normal. My consultant isn't willing to get me booked in for a colonoscopy as my results are normal. He told me I have to do regular 3 month stools and when it goes high that's when he'll get me in for an urgent colonoscopy. It only happens when I eat certain foods also. I'm not sure what else I can do other than ask for a second opinion but again I've not had another flair uo and usually it's every 3 months. I haven't had one sice my last. I want to point out my mum has the same symptoms and most recently has passed out and knocked herself out, my aunt has the symptoms, my cousin has symptoms or at least 1 flair up a day and she passes out ( we are both under same consultant ans he's referred her to have an mri on her overies), my sister and niece both get very mild symptoms and also my mums mother has these symptoms too but she's unable to tell us what is happening ans how it feels as she has dementia and Alzheimer's. I really don't know what else to do as the consultant won't do anything else for me until I present with high results. 

Hey,

I am unfortunately still waiting on tests to be done, which if I had stayed with the nhs would be up to a 6 month wait. I have gone private and have an appointment with a gastroenterologist at the end of the month. My symptoms have carried on and it feels almost normal to constantly have to worry about blood and mucus. The gp said it's likely IBD because high calprotectin doesn't indicate cancer?!? Which I'm not sure is quite right? 

This is exactly what my doctor is sorta saying too! It's so worrying isn't it, I'm hoping these tests are quite quick my Calprotein was 3077

Awww good! Pls let us know how you get on and I have all fingers crossed for you!!!' Xxx 

Honestly I don't know my score, but I think tests are taking a while to come back so be prepared for that. The waiting is the hardest part. This is my second cancer scare of the year so I am a bit tired now! Trust the process and know that you are on track and making all the right moves x

Awww no bless you! I've all my fingers crossed for you! Which area are you if you don't mind me asking ? Xx

South west, may be different elsewhere but I know wait times are very high here.

i do have the possibility that the stress of my first scare ( they thought I had malignant breast tumours which turned out to be benign after removal) has set off an IBD flair. This could be why I'm feeling less worried about this outcome.

My colonoscopy went fine, they took 10 biopsies. I've not heard anything other than an appointment with a gastro consultant in January!! Not sure if this is a good thing or a bad thing! Xxx

Should be good news, if they are not wanting to see you urgently, 

A month ago my calprotectin was over 600 and I've just had it redone and it's 330, I've got a colonoscopy booked for Monday abit nervous not sure whether to be sedated or not!

Please keep us updated! Mine are 323 for the first one and the second was 383. I'm pregnant and due to see the gastro consultant on Friday regarding a colonoscopy! X

Bless you try not to worry, with pregnancy everything is all over the place I'm sure you will be fine. My husband is a doctor and he doesn't seem to worried about it and even says i don't need the colonoscopy but my actual GP and gastro consultant thinks I need it as I've lost a bit of weight and stool sample changes but no blood. 
so will see, will definitely keep you posted! Why did you did checked was there some symptoms that were bothering you? 

Bless you try not to worry, with pregnancy everything is all over the place I'm sure you will be fine. My husband is a doctor and he doesn't seem to worried about it and even says i don't need the colonoscopy but my actual GP and gastro consultant thinks I need it as I've lost a bit of weight and stool sample changes but no blood. 
so will see, will definitely keep you posted! Why did you did checked was there some symptoms that were bothering you? 

Bless you! I bet it's reassuring having a hubby as a dr! So I had been constipated for the first 6 months. Then had 6 days of softer stools not runny but softer with like mucus stuff in. Very gassy and burpy. Iv been having bright red spots of blood on my stools but they have been very big and hard to pass. Pain in my upper right rib area which has gone now! I have suffered with ibs since I was a child! So she did the test and it came back high! What were your Symtoms? 

Did all these symptoms come about during pregnancy? Because I had all those exacts symptoms during both my pregnancies, the bright red blood spots were from cuts I was getting when passing the hard poop, I think this is what you may have too, they say if it's cancer or something then its usually not bright red more like black.

I also had the pain in the rib area throughout my pregnancy which came and went both times. Definitely good to get everything checked but I think you will be just fine. 
Once you've had baby look into an anti inflammatory diet and supplements (turmeric, moringa etc) which should help you with your ibs symptoms. 
my symptoms are tummy pains after food and I've always got these gurgles sounds coming from my tummy in the evening and my morning stool is always loose and I've lost weight I'm 35 5ft 2 and weigh 46kg then with the raised calprotectin they thought I need further investigations hence the colonoscopy.

The back pain was before pregnancy but everything else has come on in pregnancy. Before pregnancy my periods were all over the place, I'd miss some, some came late so I put the back pain down to that. 
 

I get mucus and blood in the stool. I have a constant feeling/pain like Iv not emptied my bowel when Iv been. The pain and fullness is in my bum. 
 

I saw the consultant who was just awful. Was not interested at all. Won't do a colonoscopy because I'm pregnant. Told me he would see me in 4 months time. Wouldn't look at the pictures or diary the GP told me to take. Blamed it all on ibs. I asked why I have the high calprotection levels he just said not sure. 
 

iv spent the weekend in tears as I don't feel like I can relax till I know what's going on. 
 

how have you got on? 

Hi lovely, I had my colonoscopy today and they said everything was okay thank god they've taken some biopsies to check if there's any infections or inflammation but couldn't see anything major such as cancers as they are spotted on colonoscopies, not sure why calprotectin was high will be speaking to my consultant again in a few weeks, my husband said he doesn't quite believe in the calprotectin figures so maybe this consultant is the same, sounds like from this chat quite a few with high calprotectin are having clear colonoscopies. I think if you are not happy with your consultant I would ask to see another one? Also if your worried go to your gp and ask them for a full blood test including ESR and CRP say your feeling light headed and because of the high calprotectin you should want your inflammatory markers checked! Hopefully if these come back clear it should keep you some peace of mind, also for a week or two you could try completely changing your diet (anti inflammatory diet) should be stuff on Google but just make sure it's one that you can do while pregnant! Please try not to stress and worry I know it's hard but stressing can make any bowel symptoms worse, cry to keep calm and go to the docs and ask for those blood tests. You can message me any time if you need to talk x

Hello. 

thank you for replying! 
 

So pleased your colonoscopy was clear! I bet you feel very relieved now! The waiting bit the worse bit isn't it! 
 

I had been in hospital (for pregnancy) they admitted me onto the ward and tested me for covid before I went to the ward and I had tested positive for covid. I had no Symptoms felt fine. The hospital and Gp both did all my bloods! U&E's, LFT, FBC and CRP. All came back fine except my liver function came back slightly elevated. With my youngest I had  cholestasis so Iv had a few more bloods done and a liver scan which was fine as there's a 90% chance of getting it again this pregnancy but after a couple of weeks my LFT's had come back down! So they didn't know if covid had caused abit of inflammation in my liver! I'm speaking with my GP in the morning about my consultation. She has been very good so far. I am going to ask to redo the inflammation test as that was around the same time I had covid too. I think I need it for my peace of mind. I suffer with health anxiety since having my youngest so I worry even more when things arnt right! Xx
 

Aww yes it can make you feel anxious,  sounds like your blood tests have overall look good and that's usually the pain worry so don't worry you will be fine. Did you go to the docs again I'm sure some new sets of blood will make you feel better! Try not to worry too much for the baby I know it's so tough not to! Xx

Hi,

Reading all your stories has calmed down. Beside myself, I've had IBS on and off over the years, things have been getting worse so went to the GP last week, had FIT sample and calprotectin, both were positive and calprotectin come back as 1096. I have been referred urgently to go a colonoscopy, I have a phone consultation this Sunday. Had bloods done too and have low iron/anemia , and ESR was 32 all other results were normal , liver/kidney/thyroid etc. 

The wait/worry is making me worse I think.

xx

Don't worry all will be fine, your calprotectin was probably high due to your IBS, and symptoms of IBS do get worse as time goes on. I would try and look for an anti inflammatory diet and change the way you eat and what you eat and see how you get on. Good to have the tests done for your own peace of mind and be on the safe side but it doesn't sound anything to be worried about, the waiting is horrible but time goes so quick you will have your clear results before you even know it! All the best x

Thank you!! I'm a massive worrier and always focus on the worst. I will research and definitely start an anti inflammatory diet, the gp also mentioned celiac disease so I've been reducing gluten too but I think with the anxiety and stress I'm still getting flare ups. 
 

I'm hoping and praying it's an IBD condition and not the other . 
 

xx
 

xx

Hi there,

Hopefully your colonoscopy happens soon and really hope it goes ok and you get some answers. Ive had a similar situation recently... I had a stressful few months buying a flat and after about 6 months of stress I started having bouts of diarrhoea after eating for a couple of hours but only very occasionally, about once every two weeks. This went on for about 3 months and in between I was fine except low iron around the same time which I took tablets for and energy improved from those. So I was feeling better if a little done in from the stress - I've never been diagnosed with IBS and just put the stomach upsets down to stress - we had some major family stress soon after the sale went through too which was around the last time I had diarrhoea (2 months ago) - so basically it's been a pretty relentlessly high stress year.
 

I had some stool tests done to check anyway and the first one came back 1300 faecal calprotectin in Oct which worried me. I've had a wait of about 5 weeks between getting the tests results back and my next appointment with the doctor and in that period I have become extremely anxious. I've had blood tests and they are all pretty much normal - iron improving. But the faecal calprotectin test came back as 2000 this time (this was last week, Nov).

The doctor made an urgent referal to gastro and I'm now waiting to hear from them. I think the accumulative stress of the past year has made my resilience to these worries quite low and im struggling not to be constantly anxious about it, and then I'm also finding myself quite down as a result - which is a concern as I know there will probably be a fair amount more waiting.

The most confusing thing is that I've not had any really obvious symptoms for two months, but my calprotectin levels are high and seem to be going up.

I don't feel ill, but my anxiety is making me overthink everything my body does and Im losing confidence in myself - not always sure whether I can commit to doing things because im worries I could get/be ill for example. I'm trying to carry on with most things anyway, but finding it hard.

There are odd mild things that I could consider symptoms like wind after eating sometimes and often some urgency to go to the loo first thing in the morning but if I take away the anxiety about it all these are probably things I wouldn't think much of usually. 

The doc has said it's likely IBD which of course I've researched and found some people say is really manageable and others are very ill from - so of course I've found myself anxious about that too. I live on my own which I don't think helps, and I'm a bit scared of going through all of the tests and potential illness on my own. I'm basically catastrophising everything and I know it but finding it hard to be positive - the unknown is taking over really. I think maybe my coping resources are at a bit of a low as I'm usually more resilient and pragmatic. 
 

It has been helpful to read this thread and see that it's not worth diagnosing myself as things might not be as scary as I'm expecting them to be, especially as I know I'm not at my best emotionally at the moment. So thanks to those who've contributed with reassuring posts and updates. 

If anyone has any suggestions for managing this interim period of the unknown and worries/anxieties that would help too - but really just hearing outcomes that were pretty positive has been helpful. 
 

Thanks x