IBD Diagnosis

[ibddbi]

Hi everyone.

I'm currently going through an IBD diagnosis, though that hasn't been 100% confirmed as I've only given a stool sample and had bloods taken.

My bloods appear to have come back as normal, as I had to reach out to my doctor's to find out the status of them, and I wondered if anyone else with IBD had nothing show up in their bloods?

With the amount of blood I've lost recently, I'm surprised they haven't highlighted an iron efficiency at the very least. My GP have put in for a callback on Tuesday, but my symptoms are almost unbearable at the moment so I'm finding it hard to see the correlation with having 'normal' bloods. I assumed they would show something?

Any advice or experience with IBD would be great. I'm 22 and the whole diagnosis process has felt so invasive, frustrating and exhausting. I thought the bloods would allow me a proper diagnosis so I could begin medication... 😕

The blood results really won’t give a diagnosis I’m afraid. They might show up raised inflammatory markers such as ESR and CRP, or certain deficiencies, but it’s all quite general. The stool sample test for calprotectin is more specific if it’s elevated, but realistically I imagine you will need a colonoscopy/gastroscopy or/and some type of imaging to be able to give a diagnosis. It’s important to differentiate between types of IBD, as treatment that is effective for say ulcerative colitis might not work as well in people with Crohns.

Also, I hope you get some answers soon

Yes it’s the stool sample that is most likely to show it. I have IBD and bloods were fine.

Both kids have IBD and you definitely need a colonoscopy and gastroscopy to confirm. Hopefully this can be done quickly, think adult scopes waiting times is much better than for kids which is good. (Dd just waited for a year) DS bloods usually normal but calprotectin is high so definitely need that test as well. You need to push the gp for a referral to gastro. Don’t be afraid to keep on pushing (politely) until you get answers.

Thank you @2022sucksalready - that was a very succinct answer, and appreciate your support too.

@Zebee, very glad to hear that waiting times for adults should be fairly quick. Thankfully my GP have been great, I was worried as a young female I would be dismissed but they've been pretty on the ball with it all. My Doctor actually called me back soon after I made this post to tell me that my white blood cell count was high, indicating either infection or inflammation.

My stool sample has been away for 9 days now, and I'm told to call back next week. I'm waiting to receive a letter from the Gastroenterology unit at my local hospital. Very nervous but very much looking forward to a proper diagnosis.

@ibddbi Do you mind me asking what symptoms you had? I’m about to have the same tests as you, so wondering if there’s any commonality in symptoms. I’ve had loose (foul smelling) poos and a bit of pain for several weeks. I’ve also been going multiple times each day.

@WhoopItUp Of course, I am not a medical professional by any means but here are some of the symptoms I had before going to my GP - urgency to go to the toilet, but not always doing a number 2, excessive bowel movements (8-14 times a day), a ton of blood from my bottom, both constipation and diarrhea, cramps and fatigue. I have began to feel very nauseous since (but haven't actually been sick).

I am in Scotland so this may be useless to you, but it's now been 24 days since I first called my GP, and within the 3 days following my call I had a rectal exam, two vials of blood taken and a stool sample done, all at my GP surgery.

My doctor wrote 'urgently' to the gastroenterology unit at my hospital on the 20th of May, but I haven't had a response yet.

AFAIK, if you are having no blood in your stool, it could be IBS. I hope your GP give you the support you need, keep in touch if you'd like🌻

@ibddbi
Just checking in to see how you are OP. Are you feeling any better? I hope so!

Hi @WhoopItUp, thank you very much for thinking of me, I appreciate it 💗

I returned to my GP and was admitted to hospital on 06/06 for 5 days. I had lots of tests done, got my official diagnosis, and am now back home following my treatment plan before I return to work on Monday.

Can't believe how quickly everything happened once I was admitted. Feeling like I'm about to get my life back together again!

How have you been? Have you had your test results yet?

Oh wow, that’s fantastic, I’m so pleased for you. Are you actually feeling any better or is it a bit soon for that?
I thought I was starting to get a bit better but my symptoms are suddenly back with a vengeance. However, I’m not as bad as you describe. My diarrhoea is awful but I’m only going 3-4 times a day. I’m still waiting for my first lot of test results - things are really slow here at the moment….

@WhoopItUp Thank you, I felt better immediately after the IV steroid began. Since being at home I've had a few not great moments but they pass quickly, and I feel more capable of dealing with them now I know what is actually going on in my body.

Any level of discomfort should be seen to - four times a day is still far too much to be left to wait around for results. Do you know what your next steps are, or is it just a waiting game?

I would call again and urge your GP to listen to you as your symptoms aren't easing... going to the toilet so many times a day really does put a strain on your mental health too. Not to mention the stress of trying to get people to listen to you.

@ibddbi Just stumbled onto this thread, I’m glad you got your diagnosis and are feeling better with treatment. Do you mind me asking which IBD you were diagnosed with?

I’ve been struggling with awful rectal pain for 2 years now. During the first lockdown I was seen by a colorectal surgeon who said he couldn’t find anything wrong with me, said it was ‘probably neuropathic’ and sent me back to my GP. Over the Christmas holidays last year I had blood in my stool, GP didn’t know what to make of it and referred me back to the colorectal department (still on the waiting list). Last year I also developed pain under my ribs (had bloods and stools done and also an ultrasound for gallstones done, couldn’t find anything, was diagnosed with gastritis and given omeprazole).

By chance I spoke to a different GP last month who seemed much more on the ball and when I complained about my symptoms seemingly getting worse, he immediately said he thought I might have IBD so I had bloods done again (inflammation is usually high) and stool sample which found the calprotectin to be 128 (was 20 last year). So now I’m nervously waiting to be seen in the Gastroenterology department for an urgent colonoscopy 😕 I also have psoriasis, which I know can go hand in hand with IBD. The thing is, I’ve had IBS symptoms for years but now I’m wondering whether it’s been IBD all this time? 😫 Thankfully if I do have IBD then it must be mild as I’ve read of some people who lose lots of blood, are anaemic and also go to the toilet countless times a day. I’m fortunate that that isn’t the case for me, it’s mostly just the awful rectal pain and occasional blood in stool. It’s still worrying though 😕

Hi @Pregnantandinshock, sorry to hear how long you've been suffering. It definitely takes a toll on you mentally and physically when you're having to wait so long for a reason behind your symptoms. Hopefully the colonoscopy will finally give you the answers you need to both start treatment, and begin to live your life again.

To answer your question, my IBD team think that I have Ulcerative Colitis, but I have an MRI booked to see if the ulcers have spread to my small bowel. I was also very frightened about having a colonoscopy (I have quite the fear of sedation of all things!) but actually ended up having a flexible sigmoidoscopy. My consultant said that no matter if I have Crohns or UC, my treatment would be the same, so I'll likely have a colonoscopy once my bowel has healed.

I'm sure I read that you can have both IBS and IBD at the same time, though I don't know much about IBS.

If it helps, my experience in the Gastroenterology unit was incredible and if I knew that before I was admitted, I think a lot of my stress would have been eased. I started treatment an hour into my 23rd birthday in a state of utter panic and within hours I was feeling like a new person. I asked an abundance of questions, noted everything I was told down in a little book, and was open and honest about how bloody scared I was. Everyone was so warming and I really felt like they knew what they were talking about which eased my concerns.

Hopefully hearing a positive story will ease some of your worries, but equally its natural to be scared. It sounds like you're finally on track to a diagnosis though which must be such a relief after waiting for so long!

How are you both doing @WhoopItUp & @Pregnantandinshock?

CRP never raised for my DS even when he was going 12 times a day and passing pure blood. His HB was 7 (5'11" 17yr old at the time). He was dx by symptoms and then confirmed with colonoscopy and biopsy (pancolitis - Colitis of entire bowel).

I know this is an old post but wondering if anyone could shed some light on what might be going on.
I had a stool sample done back in the summer which was normal.
I recently had another stool sample done which showed no blood but my calprotectin level was 270. The only time I get diarrhoea is when I eat spicy food and I find myself rushing to the loo the next morning. Some days I don’t even go for a Poo. The only time I get blood is when I get a pile but it’s such a small amount. I notice this after taking iron tablets and being constipated.
I recently travelled to Egypt 3 weeks ago and had a bad gut while there and when I got back, so did the rest of my household, could it be because of that maybe?
I wouldn’t say I get a lot of discomfort but did have mild iron anemia deficiency while pregnant ( son was born in may this year) iron levels are fine now and so are blood tests so I’m confused what’s going on.
they said it’s not celiac but will be doing a follow up stool sample in two weeks. Ps I went through private medical.

Hi @Jadejack, sorry to hear you're finding it hard to get answers. To be honest, it doesn't sound like IBD to me. I know iron tablets can cause black/red streaks in stools, and can cause bleeding due to the constipation.

Could you request additional blood tests in two weeks time to check for inflammation? A FBC is typically used alongside stool samples to build a bigger picture, so I'd push for both at once. Hope this helps.

Thank you

I went through private and they did a FBC and all was normal along with a normal abdominal ultrasound.
They want me to do another sample before the 10th January to see what happens with the numbers. i also have a phone consultation on the 2nd January. I think if they don’t change or get higher then I will have a colonoscopy.
I have bad health anxiety so have convinced myself I am dying :/
my iron levels at current are fine and no blood in stool , just my calprotectin were elevated

Hello @Jadejack
Did you ever get a diagnosis?
I am the same as you I have apparently slightly elevated calprotectin but normal bloods. Need to repeat stoll sample in 3 weeks to see if has returned to normal or not. I have terrible health anxiety half the time i think it will be IBD and the other half i am convinced I have cancer and can stop stressing.

@DaintyDaughter hope you’re ok! Did your next sample come back normal? X