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UnXmas: You could use batteries if you wanted to. The item in question is sort of irrelevant. If you've ever read the original story behind spoon theory, Christine (the creator) explains it. She happened to be sitting at a restaurant at the time, and spoons were just something that were readily...

torrent

I've never gotten so sick that I've vomited, but I start getting nauseous about halfway through every infusion, and it usually lasts the night. Try asking the nurses to slow the drip down. I've found that slowing down the drip almost always keeps the nausea from getting worse, and my GI...

I would say for me, having a support group in person, if possible, or online like this forum, if not, can be really helpful. I felt quite alone after I first was diagnosed, especially as a child, and it was hard to understand why other people could go off and do all kinds of things that I was...

Remicade hasn't, but Imuran has caused me eye inflammation in the past, and I've had to go for yearly ophthalmology visits since I started on immunosuppressants when I was diagnosed at age 11. I recently was restarted on Remicade, and I've had some issues with blurry/double vision from time to...

I personally love the spoon theory. I use it all the time to help my friends understand why I can't always hang out with them, even for stuff like watching movies that they think of as "easy." For me personally, I would probably feel a little weird including it in Christmas cards...not that...

If I'm not in a flare, I can tolerate pretty much any kind of tea in moderation. If I am in a flare, even a cup of black tea sends me to the bathroom.

I've always been given 50 mg benadryl and almost 600 mg tylenol orally, and that's been enough for me, though they do the solu-medrol through IV. Personally, I'd rather have at least the benadryl orally, because if they give me IV benadryl there's no way I'd be fit to drive. If it fixes the...

The first time I took Remicade, they always gave me benadryl. Then I switched meds for a couple of years and came back, and now they double dose me with benadryl, as well as Tylenol and Solu-medrol, and I've never had any bad reaction as long as I've got my pre-meds. Definitely ask about it!

rsilverlining, I definitely understand that. I was on MTX (which gave me the worst thinning) from about ages 15-18, and it's no fun. For me, I have pretty thick hair to start with. So, my close friends and people who knew me really well could notice, but I don't know that it was necessarily...

Ooh, custard. Hadn't thought of that one. Don't know how it would react on my stomach, but I might give that a shot next time I'm on a full liquid diet and getting desperate for some "real" food.

Oh, yeah, I know in a lot of cases they say that Remicade in combo with another immunosuppressant works better. This is my second time on Remicade, with a several year gap in between, and my GI said if it wasn't working well enough that they would put me on Imuran as well, because I guess...

Jay - I'd be interested to hear how the Remicade + MTX combo goes for you. I'm on Remicade right now, and have taken MTX in the past for about 3 years, but unfortunately it gave me such horrible side effects that I ended up having to drop out of school and only do online classes. Hopefully it...

I try to make my infusions a positive thing. I usually consciously avoid bringing any electronics with me, and only bring, say, a book I've been wanting to read, or a sketchpad, etc. That way even though I have the nasty side effects for the few days after, at least during my infusion I get some...

Well, let me start by saying that I hope you find some answers soon, and that I hope you have something easier to treat than Crohn's! I will admit that I don't know very much at all about the Prometheus test - I'm not sure that it was even around when I was diagnosed, so I'm going to leave that...

Just happened to me. I've been in the midst of a bad flare, horrible symptoms, and my scope still came back clean. The biopsies showed inflammation though. I'd wait for those results. At least for me, my scopes never showed any visible ulcerations, etc. unless I was sick enough to be...

They always give me benadryl/tylenol/solumedrol as premeds, so I usually sleep through at least part of the infusion. My mom is a quilter, and hospitals are always cold, so when I first started Remi infusions as a kid, she would always bring along one of my favorite quilts to make me feel more...

Don't go off the meds. I had my all time worst flare when I was 11, was finally diagnosed, but still took a good 6-7 years of going through all of the drugs trying to find the right fit for me. I finally went into remission for about 2 years, hardly any symptoms at all. Then I got a little...

I'm not sure why the sudden onset, but maybe it's just the fact that your body had adapted to drinking it, and after quitting cold turkey, you lost that? I've known people who've had similar things happen with alcohol. Coffee can be a big problem for a lot of Crohnies though...I know for me, I...

I would definitely say drink Ensure/Boost type drinks slowly. They make me crazy sick if I try to drink them down too fast. I also like to try to get some "savory" things in there, like veggie broth. Just having something that isn't pure sweet somehow makes me feel like I'm actually having a...