Sorry you're feeling scared but glad to hear you are feeling great physically...
That said, you would not be the first Crohnie to be feeling great immediately before feeling really, really bad and needing emergency surgery. Unfortunately.
I can tell you a couple horror stories about
people/kids I've known - as in, feeling fine, labs even great, stop all meds and then bam - bad pain goes to hospital has perforation and abscess and fluid in abdomen and more bad, bad things. But you probably have already heard those stories right?
It is very hard to understand how you can feel great and still have serious damage happening in your gut. Know that eventually you will start to feel really bad cause you're right - you can't keep feeling great when your guts inflamed.
Part of the reason a lot of people don't feel "pain" even though their guts are inflamed is because the main kind of nerves that report pain from the intestines are stretch receptors. so you get bad pain when you have gas because it's blowing up your intestine and the stretch receptor nerves go "ow, ow, ow". But bleeding? Ulcers? Run of the mill inflammation? No stretching for the most part so no or little pain until it's really advanced.
There are a few other things you can do - I think. I had a little trouble reading your post cause it was all spaced out funny. Not sure if that's my computer or what.
Anyway, you can add probiotics if you're not already doing that but you may have to experiment to find one that works without problematic side effects.
You can do a completely liquid diet of formula all the time but that is a pretty extreme solution I think.
Some people have found Chinese Herbs helpful, some the SCDiet.
My son did not have diarrhea. He had severe constipation. He was on the same drug for a couple of years with no apparent side effects when he was 10.
catching illnesses - generally most people who practice good hand hygiene have little problem with this. That's because of the part of the immune system that's affected by the CD meds.
Simplified info on immune system: there are two basic parts: the acute or fast-acting part that races into action when you get a cut or are invaded by viruses; and the chronic or later responding part of the system. The chronic part responds when that cut gets really infected or when the virus has moved from cold to pneumonia. It is not your first responder so to speak.
CD drugs, for the most part, only suppress that chronic part. The acute part (assuming it's normal) goes along functioning pretty much the same as it always has - defending you from the everyday viral illness and bacterial invader when you get a paper cut.
And the chronic part is presumed to be on overdrive - that's what's making your guts inflamed right? So suppressing it some means you're moving it back toward normal rather than turning off the engine.
I greatly simplified that explanation but it's largely correct. I have found that it helps people make sense of what's going on in their bodies and give them a way to think about
the meds that helps them feel less worried.
I'm sure others will reply with reassurance and personal stories. It's true that you will need monitoring cause any drug - even many herbs - can have dangerous side effects develop unexpectedly.
But I don't think you need to worry too much about
catching every little bug - if you wash your hands a lot, encourage those around you to do the same and generally practice good hygiene. Wiping down surfaces with bleach and water now and then won't hurt either.
Hope the MRE goes smoothly - my sister had one 2 weeks ago and she was fine.
Post Edited (rlsnights) : 11/23/2010 11:33:52 PM (GMT-7)