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Difficult diagnosis and future monitoring - how?!

Hi Crohnies, I'm back again. I'm newly diagnosed and I wanted to canvass the masses for a bit of a conundrum that has just occurred to me. Apologies once again if I'm creating an unnecessary new thread (I tried searching, and didn't find an answer to what I was after).

One of the reasons I was so determined to get a diagnosis, and didn't stop chasing scans and tests (except for a three month period last year when I had diagnosis fatigue and just couldn't take it any more), was not just that I wanted treatment for increasingly severe abdominal pain. It was so that the disease could be monitored. If I have a progressive condition, I damn well want to know how it's moving around in my innards!

The thing is, I have small bowel Crohn's - and it's not anywhere near the proximal end. It's middle and distal (I'll get more detail from my GI on Friday). It's in the BLACK HOLE of the small intestine. It didn't turn up in a colonoscopy. It didn't turn up in a gastroscopy (a couple of mild spots of benign, inconclusive inflammation). It didn't turn up in an MRI. There was something *slightly* funny in the barium CT enteroclysis, but it wasn't conclusive. I've had a slightly high FC (95), a really low FC (12?! but I took laxatives, and I'm now realising that was probably stupid), and high FC (376 - which I know isn't high for a lot of people, but made my GI's eyebrows hit his hairline, and is why we're progressing treatment).

I finally got a pill cam, and it came back positive and useful. Which was exciting.

So here's the thing - I've read a few papers on FC and how useful it is for diagnosing Crohn's in various parts of the digestive tract. It turns out it's the most useful way to diagnose ileitis, compared to most other tests, but also that ileitis is prone to a lot of false negatives (yay, Type II errors. GDI!). I only got that 376 number because I took the sample when I was in actual agony (that was a fun day).

It turns out my Crohn's needs to be catch red-handed, not just active, but REALLY bad.

Here's my question. If I'm going on Imuran, with the goal of getting into remission, how the HELL can we monitor a disease that was so damn hard to diagnose in the first place? I mean, it took eighteen months to *find* it, and I know it's possible to have serious Crohn's and be asymptomatic (which is not good, because obviously long-term damage is happening in the background).

Am I going to be having a pill cam every six months? I presume FC, for sure, but with something prone to Type II errors, I'm not getting a lot of peace of mind out of that idea.

Anyway, for those of you that had a rough diagnosis road, I'd love to hear how your disease is monitored and how reliable that is for you.

Thanks in advance, and I hope you are all having a splendid, pain-free day. :)
This is a very interesting question, because for the past few years my flares have been confined to the jejunum and ileum, and I've been admitted to the hospital twice for partial obstructions. I will think I'm okay, and "managing" when everything goes haywire and I go to the ER, get a CT scan and they discover a LOT of inflammation. I can't take Imuran or 6MP because they give me pancreatitis, and my GI doesn't want to move up to biologics yet. I had a consultation with an IBD specialist but he wanted to do his own set of tests before giving me any advice, which seemed completely unnecessary; I also really like my GI. I take Entocort, but still have a fair bit of abdominal pain.

You would need a capsule endoscopy in order to visualize the inflammation directly, but would the health system cover one if you were asymptommatic? I have good insurance and they would probably refuse to cover one unless I were showing symptoms (for me, abdominal pain, nausea, and vomiting).

I'm looking forward to reading what others think.
Yes interesting question!

When I was initially diagnosed with UC, it was easy as the inflammation was clear to see throughout my colon. Since then I've had many years of issues that were much harder to pin down, despite changing GI's a few times and the only reason I was finally (re) diagnosed to CD was because I ended up in hospital with an obstruction in the small bowel. This was not the first blockage or ER visit but this one didn't relsolve by itself so warranted more investigation afterwards.

Now I'm in a similar boat as you are because my CRP and most other blood values are rarely high, even in mid flare and the inflammation is too far up the TI to see much. The only thing that does show something is an MRI. Even with insurance I'm only allowed 1 a year so my GI basically relies on how I feel.
Having had this disease for more than 20 years I've learnt to recognise which symptoms mean what and how severe things are. I rarely suffer from pain so that's no help and the fatigue is pretty constant too so no help either.
The only things that consistently show up in blood tests are low HB and low protein/albumin but they're slow to change up or down so they really only serve as backup to how I think I feel.

So I guess what I'm saying is that it pays to have a good relationship with your GI and to learn to recognise the signals your body gives you. As you've just been diagnosed this won't be easy but you'll get there eventually, it will need patience!

I also get all my blood test results emailed to me by the lab and record them in a spreadsheet. This helps me decide if I need to see someone (GP/GI etc) or not.

Hi. Newbie here. This was a really interesting read & I was about to post a similar question. I've had Crohns 30 years, been in remission 20 years. Last few months have got sicker & sicker. Was on imuran since November, bloods all ok, MRI was ok, colonoscopy again ok yet I was loosing weight, in agony & spent most days stuck on the loo. They said I had bile salt malabsorption as all my tests were normal. Few weeks back ended up in the ER in so much pain & they checked my FC which was at 600, CT scan showed slight small bowel swelling as did an x Ray, yet MRI was normal?! Liver had also inflamed so stopped the imuran, started prednisone which helped initially now I'm on the taper at 30mg & already symptoms are flaring like mad. Due to start biologics soon but I don't get how I can be this poorly with only the FC confirming it & not being able to see hardly anything on scans. Feel like I'm going mad & the Drs think I'm a nuisance! Have really had enough now as can't see any light as like you said, how can they treat something they're struggling so hard to find (should add my initial diagnosis took them 3 years to confirm). Clearly we're not text book Crohns patients but I know when I'm sick & this is just flooring me right now 😞
Hey guys, sorry for the delayed reply - I actually wrote a nice long one and of course, it was eaten by the mighty Kraken of the Forums (and I didn't do what I usually do before I post, which is Ctrl+A, Ctrl+C so that if that happens I can just repaste it). So I got cranky and left it.

Here's take two!

@Jabee & @Layla: I had a chat with Surgeon Sam last Friday. He doesn't think I'm going to need a regular pill cam for diagnosis. I think that, based on my symptoms and my FC of 376, he was happy to use FC for monitoring. Even when it was only 95, he said that, since calprotectin degrades as it moves through, a low number indicates it was higher at the site of inflammation. And it's still over 50, so there's that. He mostly wanted the pill cam to absolutely confirm the diagnosis and work out how it was distributed. So I think my FC doesn't have to be *that* high to indicate problems, just higher than 50 (I assume).

This is good because using my symptoms to track inflammation is going to problematic for me. I've never been in remission and it's all just been slowly getting worse over the last few years, so I don't actually know what normal feels like! The other issue is that I also have hypermobility syndrome, hence I'm always in some kind of pain (which I cope with, it's not so terrible, and I manage it all pretty well), which means that my brain just blocks out pain below a certain point and I don't notice until it gets ridiculous!

Still, maybe when I experience the fabled remission, I'll be able to tell the difference :D

Layla, I'm super impressed with your spreadsheet! I should get on that.

@Hollaka79: I'm sorry to hear that you're not doing well! It's funny, it doesn't seem like there are many "textbook" Crohn's patients until it gets super severe - as near as I can tell. My main problem is that my condition is actually quite mild, which is why it doesn't show up on scans, and yet those tiny lesions are enough to cause horrendous pain! It seems bizarre, but that's how it works. Immune system dysfunction is really hard to track. I'm sorry as well that doctors are treating you like a nuisance. I'm lucky that my guy took me seriously from the word go - even when things weren't showing up in scopes and scans, he believed that I was having serious issues. I think having had perianal abscesses since I was fifteen might have contributed to that though!

I mean, take home message is that you can have serious inflammation that doesn't show up on scans, because - correct me if I'm wrong - it only shows up when it's beyond severe and there's thickening and scarring and penetration and damage at the sub-mucosal level, and when it's in the small bowel it's basically the black hole of medical imaging. So you can have your FC of 600 (yikes!) and be in serious pain and horrendously sick, but if you don't have scarring, it'll come back negative.

So I did some research back when I had my MRI, and in terms of a Crohn's diagnosis, it will never give a false positive, but it will give a false negative at a rate of 1 in 6. That's really high. It is *really* common that you'll get that horrible Type II error. I feel like doctors, and particularly specialists, should know this. That's why you need to run a ridiculous number of tests to nut it out.

As ronroush7 says, keep at it, dude, and push the doctors for your diagnosis. See if you can qualify for a pill cam (in Australia, you need either FOB (faecal occult blood) or low iron). Hopefully that will show something, even it's just the weird titchy ulcers that I have.

Bile salt malabsorption is also a common side effect of Crohn's. Sometimes they steal your gall bladder away at that point - do you still have yours?

Anyway, I hope you feel better soon!

Addendum for my own condition: apparently, I'm allergic to Imuran. YAY. so I'll be calling Surgeon Sam on Monday and trying to make a new plan. I'm off to the doctor today (it's a Saturday, so it's either that or the ER) to make sure that this facial rash and cold symptoms don't indicate more severe toxicity.

Cheers all, and as always, thanks for the conversation. I learn a lot, and it's good to know I'm not alone.
San Diego
If your CRP is elevated (>5.0) when you in a flare then a CRP blood test may be useful for monitoring the progress of your therapy. CRP is more systemic and less susceptible changes do to disease location that FCP is.

Unfortunately, CRP doesn't work for me because it never gets elevated in the first place. But for those in which it does CRP can be a decent disease Crohn's inflammation monitor.