Possibly Crohns?

[Monkeypuzzler]

My Son became ill a couple of years ago on holiday after being stung in the sea (could be coincidence). His symptoms were overwhelming nausea, fatigued, unable to eat much, drink only water and rapid weight loss. He had blood tests, Coeliac test (I am a Coeliac) also tests for parasites etc and endoscopy & all showed nothing apart from high amount of acid in stomach. He was put on Omeperazole for a few months to decrease acid and consultant said he worries too much (he really doesn’t, only about being ill). He also had an mri (but couldn’t drink the 1.5 litres of gloop) but this showed nothing. It took him a year to recover & his life was totally affected - GCSEs, social life, unable to play sport, travel etc. He was then back to normal for a year and eating and drinking most things he used to but then had another flare up in November 2018. Same symptoms, nausea, completely debilitated, couldn’t eat, couldn’t go to college etc, lost one and a half stone. He was able to eat better after 7 weeks & slowly recovered but now left with a ‘pressing’ cramp type feeling in upper abdomen, doesn’t feel great, needs to eat little & often, no weight gain, avoids going out. Four GP’s thought it was all in his head or just one of those things they don’t know why happens(!) but the fifth GP, after I implored for action, as a last resort did a calprotectin stool test which came back as 230 so referred him again. Consultant has asked for another stool test to measure calprotectin and trace mineral blood test. If inflammation markers still high he will then do a colonoscopy but he is not convinced of IBD. I am hoping this does show something so we can get an answer and treat it and be ready for the next flare up as he goes to Uni in September. He has now seen 4 consultants in 2.5 years and feel we are getting nowhere. Meanwhile I have a skinny lad who has no life apart from going to college and watching tv. Does anyone have any similar experience or symptoms to this as I have read that depending on affected area of your intestines depends on the symptoms you get and the same gene responsible for my Coeliac is also responsible for Crohns. My brother was diagnosed with Crohns aged 50. Sorry for long essay but important to give all the facts as I am now a desperate Mum! Thanks.

[willow24 Administrator]

An abnormal calprotectin test result simply indicates that there is inflammation. There are several intestinal diseases and drugs (eg, NSAIDs such as ibuprofen) associated with low-grade intestinal inflammation with average calprotectin levels between 50 and 300 μg/mg, with values of 50-150 μg/mg regularly seen in IBS. However, only untreated IBD and certain food infections are associated with very high levels with values of 500 to 600 μg/mg nearly always have pathology findings. It is normal to repeat the test with findings of slight elevation in a few weeks/months to rule out food infections. So whilst it is a great non invasive test, it is still only part of the diagnosis puzzle.

Other than nausea, poor appetite and weight loss has there been any bowel symptoms?

[Monkeypuzzler in reply to willow24]

Hi Willow24. Thank you for your reply. His bowels are a bit variable and sometimes has constipation and doesn’t feel great afterwards. Other times he says it is normal. He usually goes every couple of days but can be every day or 3 days but on average every 2. He kept a food diary a couple of years ago and it didn’t show any pattern but I have asked him to start again. When he asked the consultant if he had other patients with his symptoms he replied yes he does but they have never got to the bottom of the problem which was really frustrating to hear. In desperation I had a holistic type practitioner analyse a hair sample and this showed yeast overgrowth in the stomach but I am sceptical this is an actual problem as if you haven’t been eating and have lots of acid this could be the reason for raised yeast rather than the original cause of the problem. He was so poorly I can’t think yeast overgrowth was the reason. I was close to taking him to A&E and the consultant agreed if he has another flare up that is the best thing to do to get investigated whilst he is so poorly. Thanks.

[SORRELHIPPO in reply to Monkeypuzzler]

I agree that A&E good idea, I was only diagnosed, when so ill had to go to A&E and all could see how ill I was. Also meant I was admitted, which means the tests are all done more quickly. Mine is Crohn's, some symptoms same as your son, but not all. Very rapid weight loss, diarrhoea 8 times/day 10 at night (needed Dioralyte for fluid replacement), only when I had an endoscopy, with samples taken of lining for testing, and these backed up the inflamatory markers, was the diagnosis given. The big problem is the non-specific nature of so many of our symptoms.

[Monkeypuzzler in reply to SORRELHIPPO]

Thanks Sorrelhippo that’s useful to hear. I think him not having acute bowel issues is what is confusing doctors in trying to diagnose.

[willow24 Administrator in reply to Monkeypuzzler]

constipation usually occurs in people who have had IBD for years and have had several bad flare ups that has caused strictures in the bowel from thickening and scar tissue. I think A&E may be an option when he is in a flare as hopefully they will do bloods etc and refer urgently to gastroenterology team