Possible Crohns Diagnosis (please help!)

[RaulP1]

Hi,

I am new here and wondering if someone could help me. So 5 years ago I had a very bad stomach issue, with severe diarrhoea with mucus and blood and stomach pain. This lasted for a few days. I went to A&E and they did a blood test. All I was told at the time is that I had an infection which my body was fighting and they wouldn't give me any medication.

My stomach settled itself, however since then has always been sensitive.

So since end of July, my stomach seems to be more unhappy. On and off diarrhoea with mucus (no blood) that would last a day (couple bowel movements) and then calm down. I now have days where I will need to go about 4 times a day. It's not watery but more mushy (sorry TMI). I went to my GP and did a stool test on 25th Oct. The Calprotectin test showed my inflammation level was 64, I know it should be below 50.

I had a colonoscopy on 11th Nov, where they found very mild patchy erythema at the end of my colon, going into my small bowel. The consultant doing the procedure asked if I take a lot of NSAIDs, which I don't but he did not seem to overly concerned. He took some biopsies and I am still waiting on the results for this.

Generally I have fatigue and sometimes issues with my appetite but I don't have bleeding, weight loss or fever.

I wouldn't say my symptoms are severe but they are enough to make me feel unwell. Does this sound like Crohn's? I am terrified of getting this as a diagnosis, as I am so scared I won't be able to live a normal, carefree life and I will be in and out of hospital for the rest of my life!

[willow24 Administrator]

Hi, Erythema basically means redness which can be caused by inflammation and infection. As no obvious ulcers were seen and calprotectin is under 100 μg/mg, it sounds promising. Do you have any other medical history or on medications ? and have you had a blood test to check your inflammatory markers?

An abnormal calprotectin test result simply indicates that there is inflammation in the bowel. There are several intestinal diseases and drugs (eg, NSAIDs such as ibuprofen or aspirin, and PPI's (proton pump inhibitors) like omeprazole and lansoprazole used for reflux) that are associated with low-grade intestinal inflammation and can give average calprotectin levels between 50 and 300 μg/mg.

Values of 50-150 μg/mg are regularly seen in IBS, and this is why a result between these values often leads to a diagnosis of IBS. Over 150 is when IBD is considered a possibility and further tests are carried out along with a a repeat fcal test, so you are very fortunate to get a colonoscopy so quickly. A result of 250μg/mg usually calls for urgent scop and gastro referral. Although guidelines do vary slightly between NHS trusts (Im assuming you are in UK)

IBD, esp when active, is usually seen on a scope, and involves the bowel tissues at a deeper level, this is where the biopsies come in as the samples will show crypts and granulomas which are seen in IBD but not in normal inflammed bowel.

Fingers crossed its not IBD xx

[RaulP1 in reply to willow24]

Thank you so much for your response willow24!

In answer to your question, I do not having any other medical history and I'm not on any other medication. I was taking Ibuprofen a good few months before my colonoscopy for muscle pain but surely this would not still be showing? I have not had a blood test to show inflammatory markers.

My GP referred me for the stool test and colonoscopy on the 24th Oct, the same day I did the stool test. I didn't know that the Calprotectin levels can be raised with IBS, I thought there is no change, so that makes me feel a bit better.

I am still waiting on my biopsy results which is exhausting. I really hope it's just IBS but I tend to get very weird stomach discomfort, like my insides are inflamed. This in turn makes my back hurt.

Could other things cause an inflamed bowel but is not IBD?

I have an intense worry that the disease is in my small bowel and that it why it was not picked up on the colonoscopy.

xxxx

[willow24 Administrator in reply to RaulP1]

It wouldn't be the ibuprofen then!

Biopsy results can take up to 4-6 weeks Im sorry to say

Small bowel crohns symptoms when in a flare are frequent diarrhoea, pain which is often triggered on/very soon after eating, weight loss, malnutrition and anaemia. Any bleeding is unlikely to be seen or is black. mucus is not a symptom of small bowel crohns either which is reassuring. Small bowel crohns is also predominately found in children and very young adults.

Have you been a bit stressed or worried - other than waiting for diagnosis. IBS is very sensitive to change in emotions/hormones so this can cause abdo pain/discomfort and loose stools.

[RaulP1 in reply to willow24]

Hi Willow24

Argh! That is so long, they told me 2-3 weeks. Hopefully I will get them back soon.

I can't tell if it's a real flare or not. I tend to go from about two weeks feeling normal, to a few days to a week not great. Symptoms are not severe, mainly having to use the loo more with some urgency and the mucus. It's good to hear that mucus is not a symptom of small bowel crohns because I tend to get that the most and this was a big worry of mine.

Stool test didn't show any blood.

My symptoms are quite random and are not always after I eat to be honest. So I could not have eaten anything and I would still feel like I need to go to the loo like the food from the night before has upset me. Symptoms are worst in the morning and tend to settle in the afternoon.

Yes I have been very anxious and stressed since July (long time I know) but I have had other health concerns since then that have made me continuously anxious and quite depressed.

Sorry to ask again, but IBS could raise the Calprotectin level?

Thank you for your help!

xxx

[willow24 Administrator in reply to RaulP1]

Yeah ibs causes slight increase. Mucus is naturally produced to help move the stools along the large bowel, but like the nose when irritated or inflamed extra mucus is produced as an inflammatory response.

Hope you get your results back soon, and please let us know too. We are all here for advice and support xx

[RaulP1 in reply to willow24]

Thank you so much willow24, really appreciate the support.

It's good to know that IBS can cause a slight increase. I know that IBS can cause mucus but as I have quite bad health anxiety I always worry when I see it. I guess because IBS doesn't cause an inflammatory response?

Thank you so much for the support - I will let you all know the outcome. Just hope its IBS but I'm leaning more towards IBD, maybe a mild version.

xxx

[RaulP1 in reply to RaulP1]

Hi willow24

Hope you're well!

Just wanted to ask you a quick question.

I got my biopsy results back and my GP said it just showed mild inflammation and the notes said something like check for possible infection. There was no granulomas or anything and the biopsy was take from the area of the erythema.

My GP has decided to refer me for further checks. She is less concerned but she's still not sure why I have inflammation.

While I'm fine with being referred (well I lie, I hate medical tests), I'm still worried what's causing my inflammation.

Could it be possible that I have Crohns in my small bowel? My symptoms don't seem to be getting worse. They are about the same.

My next appointment is not until March, so I am concerned as I have to wait a while for a proper diagnosis.

Thank you for your help and I hope you have a lovely Christmas!

[SORRELHIPPO]

The main area for absorption of B12 is small bowel area going into large, could account for fatigue, also are you taking re-hydration when having diarrhoea, I take Dioralyte to balance the body salts, which go up the spout with the severe runs, otherwise I get very fatigued. Chrohn's can be a pain in the neck (ha ha) but does not have to ruin a life. I have had it for 30 years and am still going, yes been in hospital 4 times in those 30 years, so not that bad.

[RaulP1 in reply to SORRELHIPPO]

Hi SORRELHIPPO,

Hope you're well. I am taking B12 supplements only because I kept getting twitchy eyes haha and it was really irritating me. My fatigue is not extreme as some people can have with crohns, I know of people who find it hard to get out of bed. I'm actually not so bad but if someone gave me a blanket and pillow now, I could easily sleep for a few hours.

I don't take Dioralyte when I have diarrhoea as its not so extreme. If I do get diarrhoea when it's very watery, I would go about 2 times and then it stops but contains a lot of mucus. Generally I just have mushy stools. On a bad day or when I'm on my period, I got about 4/5 times a day, on a general day, I have stomach discomfort but tend to go about 2 times. So it's not so extreme but of course I worry this is just the start. If it is, I've been suffering for 5 years now with a very unhappy stomach.

I think the raise in the Calprotectin in the stool test is what's worried me the most. Most irritating symptom I have is the gurgling in the stomach and urgency to use the loo.

Bless you for dealing with this for 30 years - I know many people live normal lives and happy lives even with Crohns but the idea of it terrifies me. The thought of having to be in and out of hospital or the constant medical tests. I have really bad health anxiety, so don't fare well with doctors and medical tests. I always assume it will be worst case scenario.

[NL88]

Try Niacin enema. You can search for it. Also, for Crohn your calprotectin would have been much higher. Try PCR Parasites test. Maybe it is Blastocystis

[RaulP1]

Hi NL88,

Thank you so much for your message. Ah really? I didn't know that. Would it need to be higher for even a mild case?

They did do a stool test but it was checking for H.Pylori and E.coli. I'm not sure if they checked for anything else. Would I have to request this or is it a standard check in stool tests? Thanks!

[RaulP1]

So I got my biopsy results - doesn't really show anything but mild patchy inflammation. No granoulmas or anything like that. My doctor thinks it's IBS but because there is slight inflammation she is referring me to gastrointestinal department to make sure. She said she would feel comfortable but I shouldn't worry. That it's not really indicating IBD. So I'm a bit calmer then I was before. Just wish these tests would end but at least it's not as bad as it could be.

I’m still concerned what the may find with further tests!

[DLGJ]

Hi I don’t no if this makes you feel better but I have my gastro appointment and my calprotectin is astronomically off the scale over 2000, with your levels I wouldn’t be that concerned. Just so you have something to compare with! They are thinking definite IBD with me as my levels are soo massive. I was told it’s only serious over 300 today with a different consultant x

[RaulP1]

Hi DLGJ,

Thank you so much for your message. I’m sorry to hear that yours is so high but thank you for telling me. It does make me feel better for sure. I just thought any raise above 50 was IBD.

Didn’t know it could be raised for other reasons too. Are you currently going through tests then? My referral appointment isn’t until March. So long to wait!

[Gjkas]

I have the same problem as you. I have had IBS for quite a few years. But these last few months my pain have been much worse. I had a Colonoscopy which showed up Severe Diverticulitis, query

Crones Disease. They also removed a polyps . In April i was admitted to hospital with Abdominal Pain They did an ultrasound, then an MRI and then I had a n MRCP SCAN. I was told that I had an Enlarged Liver, Blocked Bile Duct, Cyst on the Pancreas, Cysts in the Kidney and Gallstones .They thought that i had Pancreatic Cancer. My Mum had Pancreatic Cancer and she passed away 6 months after diagnosis, BLESS HER.

But these last couple of months my Liver is nearly normal and my Bile Ducts seem to be clear.

I don't know whether I'm coming or going with it all. I have now been told that it's not Pancreatic Cancer but my Gallbladder is a major issue as far as the pain is concerned. I have a Pre Admission Appointment next week because apparently my Gallbladder etc. has to come out. I have already met the Surgeon that is going to do the operation.

Now have to meet the Anaesthetist, because i have Valvular Heart Disease, COPD and Asthma. I'm not a very good Candidate for a General Anaesthetic.

Can't wait for it to be over and done with.

Don't be too worried if they do say that you have Crones Disease. A Friend of ours have had it for over 20 years..

I hope your Biopsy Results aren't too much longer. It's such a worry when you have to wait for something like that.

Then worrying about it will only make your Tummy Pain worse. 🤞🤞🤞

Fingers Crossed you'll have good news.

[RaulP1 in reply to Gjkas]

Hi Gjkas!

Thank you so much for your message! Sorry you’re having such a rough time with all this and so sorry about your mum! Bless her.

I got my biopsy results back.

Nothing really showing but mild inflammation. There’s no granulomas or anything. My GP is less concerned now but as I have a bit of inflammation, I’ve been referred for more tests but the appointment is in March.

She doesn’t think any of this indicates IBD, which is a good sign but I am still worried. I just hope it’s nothing but IBS. My symptoms aren’t as severe as yours but there days where I feel absolutely awful.

I hope you’re feeling better and thank you for taking out the time to message!

[Gjkas in reply to RaulP1]

You're welcome, So glad that youve had your Biopsy results back and there aren't anything sinister going on there..

But even though the inflammation is mild at the moment. If it gets any worse you must still go back to your G.P .Don't let it grab hold of you.

You Take Care of yourself 😊

[RaulP1 in reply to Gjkas]

Thank you,

Yeah my next appointment is in March. I do still hope it’s nothing like crohns but will have to wait and see.

You take care too.

[Gjkas in reply to RaulP1]

Thankyou RaylP1.

Hope things work out for you. At the moment I feel absolutely terrible.

Between my stomach cramps and having the Flu. UGH.

You take Care and hope you have a Lovely Christmas and all the Best for the New Year..

[RaulP1 in reply to Gjkas]

Thank you Gjkas!

Sorry to hear that you're feeling unwell - I hope you feel better soon.

I am okay thank you, symptoms are still the same. Cramps and discomfort but the diarrhoea etc is better.

I hope you have a lovely Christmas and wishing you all the best too for 2020!

xxx

[RaulP1]

Update: So over a year on I finally have a diagnosis and doctors are saying it’s severe IBS. In 2019 I had a colonoscopy as mentioned which showed very mild unspecific inflammation, biopsy of the inflammation was also unspecific, a stool test that was level 64 (I did do this stool test a little while after recovering from a stomach bug). This year I’ve had a blood test that showed no inflammation or malnutrition and a MRI which was clear and a another stool test which the levels were <12. Just wanted to say thank you to all of you who have responded to my thread and helped me keep calm