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OK that is totally baffling. Well you can request from the hospital what number was your fecal calproctectin and post on here and we can tell you what it means! It’s as simple as that not sure what your GPS difficulty was. Maybe bring this up to your IBS nurse as if there is blood in your stool...

Your GP shouldn’t be carrying out the fecal calproctectin test. You hand the sample into the GP and they transport it to the hospital and the hospital’s pathology lab and will analyse it. You could bypass the GP surgery entirely and hand the sample in at the hospital. I think you need maybe a...

I would probably say there’s no point getting a flexi sigmoidoscopy. If the blood was coming from the lower end of your colon it would be bright red. Plus you have already had a negative colonoscopy. My advice: 1. Get blood tests done - check your iron levels and check to see if your blood is...

Yes they could work - you don't build up antibodies to them like you do with biologics so you can stop and start them. However, they may not work for you given that I'm assuming they failed for you before since you needed to start remicade?

He doesn’t actually say she was diagnosed when she was 5 years old, just that she has had Crohn’s since she was 5 years old. I’ve had Crohn’s since I was 16 years old, a perforated bowel when I was 22 years old and formally diagnosed when I was 26 years old. My disease started before diagnosis.

I can’t believe you haven’t had a colonoscopy before now, especially with your dad. I strongly suspect you have Crohn’s too. You have been unnecessarily messed around for years. It sounds like you have finally found a GI where your history has clicked for her. I think these tests are going to...

It sounds like on its own it isn’t enough to keep you in remission.

Hi Milly, how long were you on mercaptopurine for? There is a reason your doctor wants to put you back on this medication and that is because it is very cheap to prescribe. However, this drug comes with some rare but very serious side effects, such as cancer. There is a consensus among us with...

The next step would be a colonoscopy

Definitely not IBS. I would say sounds pretty classic Crohn’s but there could be other potential causes.

Hi Milly, I am so sorry this has happened to you. It is so frustrating that Humira was working and could have helped you all this time and possibly for many many years to come but instead they took you off it. There are drugs available to you but they are of similar expense to Humira. I...

My biopsies showed no evidence of Crohn’s but that’s what I have. Your scan showing a thickened ileum I would say is key. But hopefully the pill cam will finally give you the definitive answers you need. Sometimes with Crohn’s you can’t get conclusive answers. My GI diagnosed me based on the...

It shouldn’t make much of a difference having the tests when you feel well. It might be that the problem could be more in your small bowel unable to be visualised by the colonoscopy. I have ulcers in my small bowel and the MRI didn’t pick them up. You could try a pill cam.

IBS would not cause that fecal calproctectin result

Have you had a colonoscopy recently? What did it show? Have you had an MRE recently? You could try methotrexate? Why won’t your insurance fund stronger medications? They are the go-to meds in the USA

https://www.prnewswire.com/news-releases/new-serum-test-is-first-to-measure-and-monitor-mucosal-healing-in-crohns-disease-300536178.html http://www.empr.com/news/prometheus-monitr-crohns-disease-test-noninvasive-assay/article/700360/

Waves of intense pain and waking up at night - I would be worried about possible blockage

Just want to add as well - the majority of people with Crohn's do not have "positive biopsies" from their colonoscopies. I did not have positive biposies but my GI was able to diagnose me based on her visual appearance of my bowel during the colonoscopy (she saw ulcers and inflammation) and...

That all makes sense. I am sorry to hear of your situation regarding a lack of insurance and the extremely expensive tests. I live in the UK so I am only vaguely familar with the USA medical model. It is difficult to differentiate between ulcerative colitis and Crohn's disease confined to the...

Good grief if you don’t think all that is urgent then I would hate to see what you think is urgent! You absolutely need a colonoscopy, it is a necessity and it is urgent. One big concern is this could actually be Crohn’s, which would mean your current treatment is useless. You need to know what...