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Crohn's Disease
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Posted 8/15/2017 8:49 AM (GMT 0)
Hello All!

It's been a long, long time since my last post (I am sorry - I've been trying to ignore things!), but alas I am back..

I have been struggling on with Remicade infusions, before my last one (31st July), I started having minor flare symptoms (pain, more regular/urgent BMs) around two weeks before the last three infusions. My bloods at the time of infusion showed 'good' amounts of remicade (though I had lost 3kg in two weeks at the last one..). That was two weeks ago, and I am now having regular (2x/hour) BMs, soft, with urgency and no control, and am utterly exhausted.
I'm trying to get an appointment in clinic but that's almost impossible.
I've started eating low residue foods, I can feel myself losing weight. I don't have any pred in the house to start taking.. Is the remicade finally failing (I've been on it 17 months)? If the levels in my blood are good, could this just be a fluke?
I am at a total loss and don't know what to do - I am so tired, work is proving tricky, my home life isn't great right now anyway... I need to just run away!
Any advice?

Thanks for reading smile
Posted 8/15/2017 8:57 PM (GMT 0)
Going twice an hour is exhausting and painful! Poor you. Maybe c-diff?

Can you call your GI and ask for a stool test and let him/her know what's going on? Your doc may provide you with an abx or pred but either way this flare may require a hospitalization.

Eat foods that you can tolerate, keep hydrated etc etc.

As far as running away.....let me grab my things and a large bottle of gin and I'll hit the road with yousmile

I'm so sorry. Life is rough with this horrific disease. Too much suffering.
Posted 8/15/2017 10:57 PM (GMT 0)
Twice an hour is a lot - if it's watery and foul-smelling it could be c. diff; less likely if it's not. Your doctor, when you finally get to see him/her, should automatically order a stool test to rule out pathogenic causes of diarrhoea, such as c. diff.

Either way, you can't carry on like that, so keep on pushing for an appointment. Don't downplay your symptoms or say stuff like "it's not that bad really". If worse comes to the worse, go to A&E (if you are from the UK) or ER if you are from any other country. You could also go to your GP and persuade them to prescribe a course of pred for you, but even if you have a GP willing to do that, it's just putting a temporary bandaid plaster over the problem. Better to see your GI and get some tests done to see what's going on.
Posted 8/16/2017 7:29 AM (GMT 0)
Thanks both.. I got an appointment on 6th September, but the lovely IBD nurses have said to go in and see them if I need to in the meantime. Last time it got bad I took myself to A&E and was admitted for a week over Easter..!

I've only had a stool test once since being diagnosed, and that's when I was in hospital - I don't think they believe things are as bad as they are sometimes.

It's been better this morning, but then I didn't eat yesterday, just drank water/black tea (with no sugar - yuck!), so it's grumbly, but I've only been 4/5 times since I got up at 5am.

U B Tough - if you're bringing gin, I'll pick you up on the way!
Posted 8/16/2017 9:06 PM (GMT 0)
How are you feeling now? I really think you should get checked for an infection....
Posted 8/17/2017 8:03 AM (GMT 0)
Well, I had a very early night last night, and feel better this morning, I've even brought some lunch to work (just a basic sandwich..!), so I'm going to see how that goes down. I feel quite delicate, still fatigued, that's the worst.

I will ask my GI to do a stool test, but I bet he'll say no..!

Considering going down the self-referral CBT route, to try and get my head in a happier place..
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