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RE: Some questions for fellow colitis sufferers (includ... - Aug. 7 2007 23:46:51
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James
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Hi b0x - yes I do remember you - I was looking for an association between creatine and colitis. I also remember you and the SCD. Good to see you back and glad you're offering your wisdom to the guys
thanks
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 9 2007 11:51:54
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groovemeister
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OK, got another question - as has been established in thus thread, I love coffee. Now, I had weaned to 2 cups a day and had only 1 yesterday. It's also a mood enhancer and I'm so damned depressed ATM that it really perks me up. But as I sit typing here now, I wonder - how is it that coffee is bad for if you have colitis? What I mean is it 'bad' in that it can upset you, or can it prevent things getting better? It gives me probs occasionally on empty but with food I'm fine, so if it doesn't actually affect the condition then surely I'm good to drink it?
< Message edited by groovemeister -- Aug. 9 2007 11:52:07 >
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 9 2007 21:19:36
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James
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It's one of those, may-exasserbate-symptom-foods. It may be fine. Some anecdotally report that it upsets them. Caffeine can stimulate smooth muscle to contract (the gut is smooth muscle - so this may not be good) - but the amount of caffeine for this to have a notable effect is probably more than 1 cup of coffee
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 10 2007 0:47:17
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groovemeister
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Thanks James, but to clarify I am asking if it will have any possible long term consequences or just as-and-when it's drank?
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 10 2007 14:41:27
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James
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quote:
ORIGINAL: groovemeister
Thanks James, but to clarify I am asking if it will have any possible long term consequences or just as-and-when it's drank?
Well in theory, no. But if symptoms in colitis persist long term, then dmamge may increase. So....
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 10 2007 15:40:45
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richyd
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Box??
Any1??
What is next step after pred??
Still losing a lot of blood, formed but a lot more blood than stool. Also the cramps are back and sickness.
Did you or do you find your at your worst early morning?? I found im my worst early morning on both flair ups.
THANKS
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 10 2007 23:04:05
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groovemeister
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Cheers for that James - zero coffee it is. :(
rich, if pred doesn't clear it up, I believe there are other steroid treatments already mentioned in the thread - Wikipedia has some info on the colitis page here. If pred doesn't work this time, I'll be kicking up with my specialist to go on some other ones.
You could badger your specialist for anti-nausea medication but this is sedative - but I guess it's good to have for when you're really bad, just in case.
Yes mate I am also really bad in the morning for a few hours, not necessarily poo-wise (but usually am), but also in terms of gut ache and tiredness. Nausea is there first thing but dissipates then returns in evening. Not too bad today though (touch wood).
< Message edited by groovemeister -- Aug. 10 2007 23:05:29 >
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 11 2007 14:44:37
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groovemeister
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My mum had colitis as a kid and my dad suffered from these sorts of symptoms when he was around the same age as me. He became bed ridden and ended up eating a diet of just plain rice for months on end. Scary stuff.
He also took up yoga and other relaxation techniques, reckons it was stress related. IMO that isn't the case with me though - the only thing that stressed me out was this damned condition!
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 14 2007 10:09:26
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b0x
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Sorry guys, I stopped getting email notifications for some reason so assumed the thread had died.
James, any association made?
Rich, yes, my dad has crohns (I have UC).
The next step after pred is normally an immusuppresant, usually either 6MP which is a board suppressor but very safe or remicade which specifically targets the TNF associated with inflamation (modified rat DNA IIRC, clever stuff) but there's no real long term usage profile with it yet.
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 14 2007 11:56:22
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b0x
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My fingers will be crossed for you.
Read up on remicade (we call it infliximab), nearly all I've read about it has been extremely positive.
I can't remember if I've said this, but I find when flaring sticking to easy to digest protein helps no end (what a shame) so eggs and chicken soup is nearly all I eat!
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 14 2007 12:00:01
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richyd
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Cheers box
Im gon write that drug down and ask him about it. I bet it will be a case of that to expensive to give you non the nhs or something similar.
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 14 2007 12:09:44
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b0x
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The good news is they started offering infliximab on the NHS about 20 months ago to crohns patients and more recently to UC people too, though each infusion (every 6 weeks IIRC) costs multiples of thousands so they probably don't offer it too quickly.
Knowledge is power, the better you understand your condition the better you can control it. It's gotten to the point now me and the gastro just discuss the options and I pick what i want to do, we've had a few arguments when he doesn't agree but I've always won ;)
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 14 2007 14:45:30
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b0x
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 16 2007 12:53:48
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b0x
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Took me 4 days to respond to the IV stuff!
I expect the next drug is 6MP but that takes about a month to kick in so it probably isn't! Usually works very well though. Certainly don't let them OP before trying infliximab!
Sorry to hear about your hard times, it does get better.
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 16 2007 16:49:21
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richyd
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yep think that was the one it had a number at the start. Is it an i'v drug then? Are we talking a month in hosp? Jesus please say no. This is my 3rd day on i'v im down to 8 but the amount of blood is not funny. Im gon start praying it work cant take much more of hosp. As for operating id have to consider permanently living like this rather than have op. I just couldnt live with a colostomy bag im really image consious as it is that would kill me!
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 16 2007 16:52:45
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b0x
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Apparently in most cases they can reconnect you inside now and give you some sort of normality, but that's a conversation to have with a surgeon IF the time comes.
They'll never keep you in for a month, don't worry, just demand to speak with your gastro and find out what the score is.
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