Please help! Confusion over diagnosis

HIya,

I was diagnosed with Crohns fairly quickly after developing symptoms. My brother on the other hand had been sick on and of for about 10 years before he was diagnosed with Crohns. They only label it as Crohns if inflammation shows up in the terminal ileum, where the large and small intestine join. For me it was there for day one but my brothers only appeared in that specific area recently.

I do remember trying to cut things out and it made no difference. How this last year I have gone lactose free and it has helped with some symptoms, but I developed the intolerance as a result Of The Crohns. The inflammation didn't change. I recently had the terminal ileum removed.

I think try what the doctor says, it will strengthen your case when You See them again. Also if by some miracle your health improves, not having Crohns could only be a good thing

Sorry, not sure anything I've said will help.

Hasna

Hi Laureate20,

I have Crohn's disease just a few years ago which I discovered through colonoscopy.

Before that I suffered IBS which is similar symptoms like yours. I went to emergency room many time if I had eaten something unhygenic or allergy.

The best thing is to avoid stress which trigger of those symptoms. You may have Crohn in mild form. I had it in mild form. If it is Crohn disease, it will make to go toilet during the night near morning or midnight. That what happen to me. My Crohn is in remission thanks to yogurt and probiotic which I mix with it. I used to stay away from process food which is biscuit and bread which help. I have small meal and avoid raw vege and fruit for a few months. I had yogurt each meal before eating for an hour. It also good if you stop coffee or wine and drink ginger tea or eat ginger pickle the ones like in Japanese restaurant have. I did not take any med even the specialist told me for it gets worse.

I hope it will help you. I also think you need multivitamine to back up your health or once you become deteriotate and it will lead to other illness.

All the best,

Sorry to hear you're having a rough time of it.

Unfortunately it's reasonably common for diagnosis to take persistence and time. I had what was diagnosed as IBS that 4 years later was diagnosed as Crohns. The symptoms were horrible.

Raised calprotectin can mean infection or Crohns. There's no Crohns test as such. Instead they look for functional symptoms/markers and work it into a diagnosis.

Around when you became ill - had you travelled or had food poisoning? Could be an area to explore.

My challenge was where they found a few ulcers but my consultant said it probably wasn't Crohns but he couldn't rule it out. He believed six or seven ulcers or more is Crohns territory, or the more obvious symptoms such as fistulas. This also depends on how far they get the colonoscopy. Terminal ileum is a common place for Crohns to be seen, but not the only place. It can be hard to reach. A capsule endoscopy would be worth suggesting.

If it does turn out to be IBS, I'd highly recommend the low FODMAP diet (I have IBS and Crohns, fairly common).

Good luck x

Thanks everyone for your replies and kind comments 😊😊 no I didn't have any food posionig or anything just my symptoms seemed to get very bad May last year and have worsened ever since 😐

All very helpful well the samples have gone off so now have to wait and see what happens

I just want to know if it's ibs or crohns once and for all and then at least I know what sort of diet to try and have even though it's a struggle to eat anything at the mo 😐

Thanks again everyone and I wish you all the very best xxx

Hi, I had crohn's for 8 years. They are the syptoms for crohn's, i suggest you get a second opinion from another doctor and more tests.

Sounds like crohns. Granulomas is a clear indication I would of thought. U don't usually have Blood in stools with IBS and u don't have inflammation with IBS. The calproctecin would also be normal on every occasion. Maybe it was normal wen u were in remission. Try doing a stool sample wen u have symptoms. Its not easy to diagnose crohns but I do know that IBS don't cause bleeding. The pain with crohns is also usually on the lower right side of abdominal. I've heard that some people are treated for crohns without a diagnosis of crohns. Maybe ask your doctor about treating you as a crohns patient and see if the medication works?