Feacal Calprotectin

[Julie182]

So because my IBS-D has gotten so bad in recent months, I went back to the doctors. He did a load of tests, and the stool calprotectin test came back raised at 99ug. He then asked me to do a second test which came back at 197ug. He has referred me to a gastroenterologist. This has made me really nervous as to what is going to happen next. Does anyone know?

[BabsyWabsy]

Initially, it will probably be just a chat to decide what investigations might be needed. That's what happened to me and the gastro was lovely, a very kind man.

[EdinburghElle]

Maybe they'll do a virtual colonoscopy, which is a scan.

[xjrs]

They'll probably want to do a colonoscopy, but be aware that statistically you are far more likely to be diagnosed with IBS even after colonoscopy than anything else. My calprotectin was much higher than yours (327 I believe) and I was still diagnosed with IBS after colonoscopy. They'll just need to check that your intestines are healthy. In the mean time best to distract yourself and try not to think about it. I've had a colonoscopy more than once. Just follow the instructions they give you beforehand. It will be over with before you know it, you are sedated and you have a lovely nurse with you throughout.

[Julie182 in reply to xjrs]

Hello xjrs. Thank you for your message. I've already been diagnosed with IBS back when I was 23. I'm now 36 and new symptoms have appeared since October. I had always been able to cope with my IBS symptoms previously but this I can't. And I don't know how much longer I can take. I know that other people's calprotectin is higher then mine. I also know that there's alot of people probably worse then me. But I just can't cope anymore.

[xjrs in reply to Julie182]

They'll probably re-test you if things have got worse. Has anything changed recently? For example, have you been going through a particularly stressful time? If so, you could try the Nerva gut directed hypnotherapy app.

Have you tried any well studied probiotics? Alflorex worked best for me compared to many others I've tried. Others find Symprove helpful.

[Julie182 in reply to xjrs]

No, not really. I'm a single mum to 3 children and I work so life is pretty full on but life has been this busy for years so nothing really has changed. I'm no more stressed then usual, that was until my symptoms got worse. I haven't tried any probiotics just yet but I do want to try Alflorex as I've heard a lot of good things about it.

[Fergie53 in reply to xjrs]

Yep I’ve had several colonoscopies and also told I’ve had high calprotectin and as others said often told it’s IBS..

[Lastboyscout6]

hi … what kind of symptoms are you getting now that prompted you to go tonGP… is it pain, bowel change ?

[Julie182 in reply to Lastboyscout6]

Hello.

So I am an IBS-D sufferer. I would have a flare up maybe once a month which would last a few days (gurgling tummy, some pain, upset tummy) so I have always been able to manage it until my symptoms changed in October. Since October, my symptoms have been gurgling in my tummy near enough constantly, with a really bad lower tummy and back pain. The gurgling I can feel going up to my chest (which I've been prescribed Omeprazole for, but it doesn't help). Chest pain, a dull ache in the middle, feels like indigestion but sometimes a stabbing pain under my left arm. I now can't eat or drink anything without it going right through me, except water, squash, bread products, or plain meat. I have lost a stone in weight since October. I am now physically exhausted and I am struggling to work or do general daily activities.

[Fergie53 in reply to Julie182]

I’m sorry that doesn’t sound good so obviously you do need some investigation but try not to be too concerned, I hope the referral to the gastroenterologist helps …

[Lastboyscout6]

Hey…this sounds so similar to me. I had high calorotectin of 113 so not massively raised. I’ve ended up in A and E a few times due to pain. I was given an abdominal ultrasound which didn’t show anything. Had abdominal/pelvis CT scan with contrast which identified some inflammation on my colon but nothing else was seen so I have a Colonoscopy next week. I have loose stools pretty much every morning with cramps sometimes with urgency and then the odd day I won’t go at all but feel like I need to. I get indegestion type pain/ hot sensation in upper middle abdomen and pain under my left rib a lot. Sometimes get pain above belly button but not as much in my lower stomach. It’s draining- I’ve had this since Christmas it appeared to come on quite quick but I have had history of digestive issues over many years with gastritis and gallbladder removal. I am tired and have lost weight but have struggled to eat as this makes the pain so much worse especially later in the day. It’s miserable and stressful as it’s hard to not imagine the worst scenarios. I guess the referral to gastro will at least lead to some further investigation for you. The waiting is worrying though so I hope you get an appointment soon. The stress of it all cannot help and I think I can make myself feel worse because I am just so anxious about it all the time. Sending positive thoughts to you

[Julie182 in reply to Lastboyscout6]

Thank you so much. Your kind words are a comfort. Your symptoms do sound exactly like mine. Except my pain is lower. How are you coping with work or daily activities? Good luck for your upcoming colonoscopy. I do hope it all goes well for you. Are you nervous?

[Lastboyscout6]

Thank you … I work from home 3 days a week anyway so that’s been ok. I’ve just had pain and frequently need to go the toilet so haven’t really been able to go in the office much at all. I am able to do normal household stuff and walk the dog etc. I’ve not done any more strenuous exercise though as I just haven’t felt up to it at all. I’m more nervous of what may be found on the colonoscopy rather than the actual procedure and I will have some sedation to help manage it so hopefully I will be ok. Do you have a timescale for your appointment with Gastro ?

[Julie182 in reply to Lastboyscout6]

Hi. I had a phone call yesterday to say an appointment letter with the gastro had been sent out and to keep an eye out for it so I'm not sure on the timescale just yet. Shoukd receive the letter soon. I hope its soon tho as I can only stomach bread products. That's all.

[Lastboyscout6 in reply to Julie182]

Hopefully should be soon then. Have you tried crackers or breakfast cereals like Rice Krispies or cornflakes ? I seem to be able to tolerate them as well as bread

[Julie182 in reply to Lastboyscout6]

No I haven't. I have been having some crispy bar snacks that I've been having for breakfast. There both gluten and dairy free. There really nice and I tolerate them. Will definitely try rice Krispies tho. Can I ask what milk you use? My dietician has asked me to try lactose free milk.

[Boresum]

Hi, I had a calprotectin level of 337.0ug/g, and have been referred for colonoscopy. Calprotectin levels that are high show inflammation in the rectum and bowel

[Julie182 in reply to Boresum]

Hello. Have you been given a date yet for your colonoscopy?

Can I ask what symptoms your experiencing? Thanks.

[Boresum in reply to Julie182]

Hi Julie, I have a date for a telephone appointment in June, after that I should get a date for the procedure but I’m asking for a CT colonography rather than colonoscopy as can’t stand the pain. Symptoms are agonising rectal burning and pain with thin stools

[Julie182 in reply to Boresum]

Hey. Thank you for messaging me back. Whats a CT colonoscopy?