Got my blood and stool test results at long last

Emailed the IBD nurse; she gave me these results:

ESR - 27
Platelets - 781
Faecal calprotectin - 1338

No mention of CRP oddly enough; I find it hard to believe that would be normal if all the others are elevated. My IBD nurse said they indicated a Crohn's flare up and asked if I was having symptoms. Symptoms? Hell yeah, I'm having symptoms -_-. To be honest, I'm actually relieved my results weren't all normal because I have felt for weeks now that something is going on. Last night was my lowest ebb yet. It's not just that my GI should take me more seriously now; my parents should too. It's horrible alternating between feeling like the world's biggest hypochondriac and being absolutely convinced that something is wrong.

If the Crohn's has come back this soon, though... sh!t, that's a pisser. I still have a slight hope that it may be an infection - I'm not facing reality until I absolutely have to.

Aww, I'm sorry. I understand your wish to have your symptoms validated by the test results, but still, it really sucks if it is a Crohn's flare! So what happens now? What kind of testing/ treatment are they going to do? They better get you in quickly or I'm flying to England to knock some heads!!!

Can they give you anything for the pain in the meantime? I really just want to cry for you right now.

I've got some tramadol and codeine in reserve, particularly codeine - my dad could set up business as a dodgy online prescription drugs seller with how many meds he's got in his study. But I'll still try to get some painkillers from my docs when I next see them, 'cos anything stronger than paracetamol is a rare and precious commodity on the NHS.

In the meantime, my pain is a bit better now and I can sit up and type, so don't be too sad for me... :-( I'm trying not to take it every night, but 30mg codeine at night does really take the edge off.

Edit: Sorry gumby, I replied to scifigal before seeing your post. Let me read it now!

Thanks for the article! I got bored and couldn't finish it either....must be feeling better so it is less interesting!

I hope they order the MRI very soon and you figure out what's up. Maybe it would make sense to try the Entyvio, or did you ever do Humira? Try to hang in there!!

If you want to be tested for it (MAP) but can't swing it right now, email me and I think I can make the arrangements for you. Would be interesting to know because you seem to similar to me in a lot of ways. I would just want you to compare your results to mine to be honest. The whole Crohn's-Colitis thing and all.

At least that way it would give you an indication of what you might want to lean towards.

An option to consider.

I didn't think you were dismissive NCOT. I was just throwing the idea out there.

I seem to be someone who has consistently responded well to antibiotics, so the whole MAP thing has me intrigued.I seem to get crazy bacterial overgrowth....confirmed Salmonella once, and c.difficile twice, but then there were other times like my last bout, where stool studies are normal, but I take antibiotics and magically get better. I have never taken biologics, but my CRP has never risen, even in flares, and I read somewhere that if your CRP doesn't elevate then you are not as good of a candidate for biologics. I can't remember now where I read that or how to retrieve that info.

Anyway, I was thinking that because biologics didn't work for you (and there seems to be a big population of Cronnies for whom biologics don't seem to work) then maybe the antibiotics would. I have zero science background, so although I read a lot of articles, I don't always clearly understand what I'm reading. You seem better at all that than me....I was just thinking out loud. But your thought that maybe you took the biologics too late in your disease process has a lot of validity.....so then maybe Entyvio is the best next step. But I guess you first have to see what's up. Are you still having fevers?

Urgh, codeine gave me a massive itching attack last night - that's not a welcome return. I'm a bit braindead this morning, but at least the pain has gone. I'm pretty sure it had been a partial obstruction.

Gumby, as far as I know, I've never had an intestinal infection. Whenever I was in hospital my stool always came back negative for bacterial infection, including c. diff, salmonella, e. coli, etc. Surgery may make me more prone to SIBO now, though. As for the CRP and biologics, that does ring a very faint bell but I have no idea where I saw it either. When I'm feeling a bit less washed out, I'll look for it.

I'm reconsidering MAP again. To be honest, I think you might have a better case for anti-MAP therapy than me. And now I have this nagging thought that AMA works better for small bowel Crohn's than large bowel Crohn's, but I don't know if that's true and I'm too lazy to google it! I'm sure Canada Mark can tell us.

As for fevers, no, those seem to have gone. I'm not even getting night sweats at the moment. I'd find that encouraging, if everything else wasn't worse, though =/

scifigal - I agree with you. This is a small but really nice little community. Group hug? :p

cdinhyd - I reckon the rectum and the surgical join between the ileum and rectum is affected - above that, I'm not so sure, but obviously I hope it hasn't spread upwards into my small bowel. I most definitely do feel its presence :-/ Some days are worse than others though - it seems to go in a bit of a cycle for me. I'll have one or two 'good' days, then a few increasingly bad ones until it reaches its pinnacle, then it goes back to a 'good' day. Yesterday, I was in so much pain I skipped dinner and went almost 24 hours without eating a bite. At around midnight last night I could feel things starting to move again, then an hour or two later the gurgles began - it sounds and feels like a blocked drainpipe clearing itself.

Thank you; the same back to you.

Disappointing reply from the IBD nurse. She didn't know anything about a scan and suggested 1g Salofalk for my "flare up" - **** off.

She also thought I didn't like pred because of the side-effects (not true - I didn't like them because they don't work for longer than 2 seconds after you taper down), and suggested Budesonide instead - again, **** off.

I'm gonna end up asking for surgery sooner rather than later if this is the best they can do. I literally don't have the patience for this sh!t.

No, it's impossible to speak to a hospital consultant outside of appointments in this country - you can get a GP to call you back, but consultant, forget it.

Everyone from my mum to the IBD nurse herself seems to think I should get in touch with the stoma nurses, so that's what I've done. I've typed the email but I haven't sent it yet, because honestly I don't want to hear any more suggestions that I should take rectal meds or pred. But it feels too soon to say I'm thinking of surgery already, even though that's exactly what I'm thinking of.

Thing is, I just can't face trying all the same old useless, pointless meds again. I can't even pretend to go through the motions. I know mesalazine is useless in Crohn's, even if the IBD nurse obviously doesn't know it. I know that Pred doesn't work for longer than 2 seconds, even if once again the nurse doesn't know it. I don't know how to explain myself calmly and without seeming like I'm neurotic or chucking my toys out of the pram.

I also feel like the IBD nurse doesn't have a clue how bad I feel physically.

Post Edited (NiceCupOfTea) : 10/5/2015 8:31:03 AM (GMT-6)

Thanks gumby, sincerely... Every time I think I've reached my lowest ebb, it's followed by a new, even lower, ebb... :-/

Well by 'surgery', I meant a return to the ileostomy and removal of my rectum. But yeah, you're right - small bowel inflammation above the join needs to be ruled out first. If I went to A&E (that's the British ER, yeah), they'd have to admit me before they did any tests and I just don't think I would be admitted - not severe enough. (I wish the nurse had told me what my CRP was - ESR and platelets don't really mean a whole lot to me.)

I went for a walk in the rain - it couldn't have suited my mood better. It hasn't lifted my depression but it has calmed down my agitation a bit. I'm gonna try making my chicken broth now.

Can you tell by your symptoms where you suspect the partial obstruction? I think if you continue to be in a lot of pain and especially if your fever comes back, you might get the quickest answers going to the hospital. I'm really frustrated for you.....so sorry! One thought to hold on to is that eventually things do move forward and get figured out, even if you don't know exactly how that's going to happen at the moment. I really hope you don't have to go back to the ileostomy just yet. I hope your chicken broth came out yummy!