The problem we have (when i say we; i mean fellow sufferers and myself with IBD) is that we have blood test after blood test, CT scans, MRI scans and X-Rays but they aren’t accurate enough to show how bad the disease is and if we are flaring. For me, blood tests are my worst enemy.. why? Because they don’t show what is really going on. When i have an infection or a flare it’s beyond frustrating when you phone up for your results and they say ” you’re bloods are good so that’s very reassuring”, if i had a pound for every single time a health professional told me this i’d own a mansion with a swimming pool and my dogs would have their own little dog play house!! (i’m deadly serious ha ha.)
There is also some theory into why they show up with nothing or wrong. First of all with one blood test being done it needs to be accompanied by another to determine exactly if it is accurate or not and depending on them isn’t the best thing to do. I have read online that even though these tests have been around for a number of years, newer ones aren’t always coming back with the truth. It also states that some tests have a high rate of false positives, but what does that actually mean? It simply means that when the results come back pinpointing what the patient has, they actually don’t have it. In the article it states a specific test that was used to determine ovarian cancer known as CA-125 and due to the false positive numbers being so high and telling patients that they had ovarian cancer when they in fact didn’t, that specific test is no longer practiced. The next one is called a false negative, meaning that the person does not have whatever they are being tested for when they do have the condition. Many blood tests of the negative false are inaccuracy and can also be from sensitivity of certain equipment. Both tests come together in determining with the same factors of what they show up wrong; sensitivity and specificy. For many doctors and specialists, this isn’t taken into consideration and automatically believe these results.
It’s important to ask for other tests besides bloods to be 100% on what it is that you are dealing with or to determine an accurate diagnosis. It’s also important to mention about the issues that can happen with false positives and false negatives. Especially when there are symptoms that aren’t going away or becoming worse. There has to be a wide perspective on the doctor and patients mind and meeting the right doctor who shares this with you. If you feel that your doctor does not, then request to see another. Many doctors are more trained or research certain things and conditions whereas others do not. It is extremely difficult to get a doctor to listen let alone an on call doctor on a ward who doesn’t know you or anything about you or the issues you face daily. They do their protocol of testing and send you home without thought when all results come back OK. Heck i think if i was an on call doctor i would find it SO tough to help patients who had tests that all came back fine! So it’s difficult on both sides but i do think that many simply just don’t care unless its life or death. Why should a patient be left and put home with no help because they aren’t dying? is that a fair life to live? what if the pain is so agonizing they are constantly vomiting and unable to make it to the bathroom? The process of diagnosis is probably the hardest part about being ill, when you know something is up but nobody will do anything about it and it is placed onto a less serious problem such as IBS (Irretable Bowel Syndrome.)
Taking someone to an appointment with you i feel is super important because not only are they there to listen to the conversation, they are there to help fight your corner and get someone to listen. They can hold your hand and say its ok even though its not but it provides great comfort knowing you aren’t alone sitting there worried. When a doctor tells you nothing is wrong you expect them to be right but going through hell and back with many, that you stick by what you feel. It’s time to speak up and not back down, misdiagnosis can be serious and impact someones life severely. For example- when i developed sepsis, my CRP (inflammation levels) were at 4 which is better than normal. When i was opened up and my large bowel was removed, it was rotted and septic. Obviously this is just my experience so far, so i talked to a few people who also have the same issues to share with me their experience and what they face with these problems;
Natalie 1: My IBD team always go off my bloods and they kept refusing to start me on proper treatment because my bloods kept coming back normal and that my inflammation levels were low even thought I kept telling them my symptoms. Eventually they listened to me because I kept complaining constantly that I wasn’t well and begged them to listen to me. I had a colonoscopy that proved I was flaring despite my bloods being normal but my symptoms also got worse. It’s so frustrating that they go off tests rather than how you actually feel. Makes you feel like you’re making it up.
Lorna: I was kept in and I ended up with an op. The reasoning why they didn’t believe I was flaring in the first place was that I’d just had an op… 4 months previously. Anyway it turned out I was flaring and i had 2 narrowings but weirdly the the issues was adhesions on the outside of my intestines. I was in for about 3 months in total and was passing a lot of blood. This particular one was before my stoma. I’ve had a few times when bloods show nothing but stoma looks a mess… My gastro team now don’t take much notice of my bloods they listen to my symptoms and look at “external manifestations of disease” i.e the joint pains, mouth ulcers, hair loss, erythema nodosum, and what we can see on the stoma.
Andy: in 2014 I had a blood test done to start an Infliximab infusion by Derby Royal which came back and said I’d got Hepititis C. I had to have all my family tested, had meetings about Hep C treatment, had further blood tests, to discover that they had my bloods mixed with someone else. It was like being diagnosed with Crohns Disease all over again, trying to get my head around it. Lucky for me, it was a error on their part. It caused a lot of problems, I was questioning everything and so was my now ex wife. I was thoroughly screened for infliximab again and came back fine. I just feel for the other person who got my results and has Hep C! Fingers crossed they discovered it soonish. I had to have my wife tested and my two young children, obviously all came back clear, but was a big worry. I went to meetings and met the Hep C team at Derby and everything, it was something I will never forget.
Natalie 2: I’ve been in the middle of a massive crohns flare and my crp has been 12. I’ve found some Drs only take bloods into account and some do take in the whole picture. Dr Cole has always been great with me and looked at the whole picture but I know some don’t.
Yvette: I think in Crohns patients it’s extremely common to have a normal CRP level and yet still be flaring really badly. There’s plenty of gastro docs that go by that. Simply because it’s not unusual. I think a good gastro doctor who knows his/her patient well will take into consideration ALL the symptoms and tests available at the time including talking to the patient about their symptoms and then decide on a treatment plan.
Natalie 3: When I was admitted in 2015 my inflammatory markers were only at an 8 but my calprotectin was over 1660! Mine never show up in my bloods anymore, currently in an arthritis flare and last week my inflammatory markers were 2 lol! Even the nurse laughed as she had checked my joints and done a pain/swollen checklist.
Claire: No matter how ill i feel or what symptoms i have, they’ll do my bloods and they always come back CRP < 5 and ESR normal. Doctors constantly said bloods were ok and they couldn’t use that as evidence based on symptoms of abdominal pain, diarrhea, vomiting, fatigue to get stronger medication. fecal cal proteins also came back normal. In the end they agreed to scope me, where they found inflammation in neo-terminal ileum.
Tiffany: Mine always comes back normal….even when I am in a constant flare. I will have mouth and genital ulcers joint pain head aches eye pain and so on and they come back ok. It is so frustrating and then of course I start thinking it’s all in my head and I’m crazy. It was really hard to find a doctor that looked at my symptoms instead of the blood work.
Rah: My crp is never up when im sick. Always normal.
Hannah: I have been told I don’t have beçhets but have multiple autoimmune conditions, chronic pain syndrome and chronic fatigue. I also have crohns. My bloods are normally completely inaccurate as they have done bloods at the same time as a colonoscopy the bloods are fine and the biopsies taken and the blood pouring (tmi) show differently; my GI Dr says I’m a bloody miracle!
Ashley: I have had “normal” bloodwork multiple times when I am very very ill. Even during a flare, I don’t understand that and I never did.
Blondel: My bloods always come back within normal range even before I was formally diagnosed with Crohn’s disease. Doctors wouldn’t believe anything was wrong because nothing showed up. They even told me my symptoms were in my head!!! This went on for 15 years until a colonoscopy showed the disease but when I moved hospital I had the same battle again. I was left without treatment until I got the fistula and first lot of sepsis where my organs started failing. I don’t trust blood results. It was pretty rough.
Jessica: My blood work came back fine & still does, even now that i’m diagnosed with Crohn’s and have been in an almost constant flare for almost two months!
Chris: As steroids were the only thing that seemed to help me I put this down to the increased cortisol they give you (rather than their anti inflammatory properties). Also my bowel starts off the day feeling fine then seems to give up towards the evening, when cortisol levels are usually lowest. I went for a cortisol blood test but I had to have it done at 9 am (when I felt fine). The results came back fine but in my eyes it isn’t a true reflection of the problem because they were taken when I felt well.
Chelsea: My team always seem to treat the symptoms and patient not the lab results – my gp on the other hand seems to think I’m ok because my bloods are. My consultant put a mark on my records to go off calprotectin and scopes after seeing my colonoscopy results plus calprotectin – my bloods are same as a healthy adult females would be – but I have severe ileocolitis.
Gemma: My bloods are always normal no matter how sick I am. Makes things very difficult because drs don’t believe you need fluids or are really poorly. Mine always say bloods are normal. Until calprotectin comes back high. Now they’re saying they no longer think I have Crohns cos there’s ‘not enough evidence’.
Yvonna: I had a tumour the size of a small baby removed from my abdomen in March last year. Blood tests done every 3 months but nothing flagged up.
Faith: My immunologist rang me to say that my bloods showed very high inflammatory markers and if i was ok. I told him for once i was actually feeling fine! Apparently they would expect figures that high with severe infections or flu!! I know its the other way round but just shows how messed up they can be.
Lin: Endlessly told over 18months my bloods were fine only thing showing was my vitamin d deficiency, my body had all the red flags, but as bloods were okay….. so was I….. no I’d had cancer all that time.. hope you can raise awareness bloods are not a clear guarantee of health!
Christopher: For years I was told my blood tests/mri scans were normal, even though I had blood running out of my rear end and countless other issues. I was being told this was all in my head and I should seek counselling. Even my own family started believing I was making it up, despite losing loads of weight and being in agony all the time. The only person that truly believed me was my wife. I am not a big fan of MRI scans, when I had my stoma surgery in November my wonderful surgeon tracked my fistula from my rectum up all the way past my pelvis. This never showed up on any scans! It was only down to my surgeon in 2013 that I finally got diagnosed, and that was by pure chance I met her, she took me on and did everything possible to find out what was wrong. I was relieved to find out I had crohns and then went and did the whole ‘told you so’ to my family and doubters. And by being relieved- I finally had a diagnosis and knew what was wrong with me.
Clare: I was very ill and my bloods were not that great but gastro doc didn’t listen or care, my hubby took me to hospital and I had emergency colectomy.
Andy J; My bloods never shown anything untill about 18 months ago when my body went black, my bloods showed something but with Crohn’s my bloods never change it. Gp not really but my IBD team do now, never used to.
Wendy: Docs always say my bloods are okay when I am ill but they don’t tell you CRP is raised or that inflammation markers are high, sometimes they make you feel like a hypochondriac.
Just by talking to these people and reading what their experiences have been like and the physical and emotional affect that it has on them and their families, it’s clear to see that blood tests aren’t always as accurate as doctors like to believe. Sometimes we even believe that when they say all bloods are ok, that we simply must be and it’s in our heads. This isn’t the case and if you suffer from this PLEASE know that you are not alone and one day after fighting this that times will change in medical practices or training. It’s one of the most difficult fights a person has to face when suffering from an illness, whether they know what it is or not. But the real question is “where do i go from here?”. I might not have that answer but what i can advise is that you stick to what you believe and you don’t give up fighting for an answer! All it takes is for one doctor to believe in you and finding one that does feels like a prayer being answered. Finding that doctor can take months or years, many people even decades. I hope that one day this changes and by sharing this blog it can help and reach medical professionals. One of the main reasons why i wanted to do this blog was for someone to read it and think “this is me and has been for a while, i need answers and i need help” to then show a medical professional my blog- sharing peoples stories and experiences and to be taken seriously. Some doctors take a few times to listen but if you make it your mission to get them to listen then you are half way there!
If the false negative and false positive blood tests has an interest to you, click here. Or simply google it and there are lots of website that provide this information.
Please share this blog and use it if you need to when seeing a doctor. Most importantly, keep fighting.
Thank you to everyone who took part in this blog by sharing their stories and how i cannot emphasize enough how strong, brave, courageous and incredible people you all are.