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RE: Some questions for fellow colitis sufferers (includ... - Aug. 17 2007 15:50:07
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richyd
Posts: 1863
Joined: May 17 2003
From: Wales
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nxt drug which im now being put on is not sure how u spell it cyclosporine? Do u know much bout this box? Sorry to keep pestering u i just havent got luxury of surfing net on my phone be little expensive. Ive been asking specialist as much as i can just nice to have bit info off some1 with colitis thanks very much.
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 17 2007 16:02:48
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b0x
Posts: 203
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From: London, United Kingdom
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It's not one I've heard of but from my 10 second research it looks like another drug to control the immune system, a lot like 6MP.
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 26 2007 19:15:12
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Valleylad
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From: Cwmbran SouthWales
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Sorry to here your not well butt hope everything picks up for you soon.
I dont know much about the licensing for medication but ill ask around a few people who might when i get back m8!
I use to work on a colorectal ward before so know the problems (both physically & mentally) having a colostomy can cause m8..... but hopefully it wont come to that but it is reversable and people can live normal active lives with a stoma.
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 26 2007 19:35:27
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Valleylad
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Well im back to work wednesday m8 & ill enquire asap for you & let you know how i get on.
Well 50% chance is better than 49% m8  and as your a fit guy hopefully you'll respond.
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 27 2007 12:25:30
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b0x
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Joined: Jun. 17 2003
From: London, United Kingdom
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Oh and it might be worth asking if he'd put you on the elemental diet to give your colon chance to heal.
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 27 2007 15:54:59
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youngitalianbabe
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Very good thread. I've got UC and still sufferring from it.
I've asked my first GP to give me something to help but he outright refused to. Now I know about some of the things you guys have tried, I'll look into it further and ask my new GP to give it me. What should I tell him to give me? Or should I see a specialist first to see what he/she says?
Mine has gotten worse lately but certainly not as bad as some of you lot. One of the main things I have a problem with is the absolute constant tiredness. No matter what I do I feel tired. Never thought my gut would be so much to blame really. I got my GP to do some anaemia tests and my levels are fine so it must just be down to my gut really as I don't appear to be losing any blood - though haven't had any stool samples tested.
That SCD diet looks interesting. I have looked into it and definately don't agree with some of the things said but I may buy the book anyway to see what else its got in it. I definately think I have to play with my diet even more - unfortunately my circumstances don't allow me much control over what food is bought.
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 27 2007 16:05:13
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b0x
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From: London, United Kingdom
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YIB, first thing to try is usually a 5ASA drug, Asacol or Pentasa are the first on the list for UC suffers normally as they actively target the colon.
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 27 2007 16:26:19
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youngitalianbabe
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From: There
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Any bad sides?
Any one in particular I should ask for first over the other?
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 27 2007 16:52:20
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b0x
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5ASA is NSAA like asprin so most people tolerate them very well. More information here: http://en.wikipedia.org/wiki/Mesalazine
Personally I'd probably try Asacol first.
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 27 2007 17:04:43
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youngitalianbabe
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As long as I can take it as a suppository  and not as an oral. I can't take any aspirin orally due to past stomach problems!
Any particular dose?
My GP is a bit of an idiot so I'll have to tell him what dose to give me and how many monthsworth. I had to stop him giving prescribing me a yearsworth of codeine per month 
Thank you very much for the help!
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 27 2007 17:11:49
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b0x
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You should be ok, Asacol and Pentasa has a special coating that only release the 5ASA once it's in your large intestine meaning transit through the stomach is seamless! Most IBD suffers have problems with Asprin.
I believe the dose to be 2.4g/day which is 6 tabs of Asacol or 8 tabs of Pentasa.
Don't take some random internet guys word for it though! All these options should really be discussed with a health professional that knows your history.
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 27 2007 17:12:03
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Gothic_Muscle
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quote:
ORIGINAL: youngitalianbabe
Any bad sides?
Any one in particular I should ask for first over the other?
The worst sides I got on this was it worsened my symptoms (it says it can happen on the literature for the drug) I tried asacol foam first and eded up in hosp last jan for 2.5 weeks( I was already bad when I started taking it so trying something new at that point wasn't the best thing to do, especially as I knew a high dose of pred does the job for me) Next I tried the tablet version while in hosp and that made me worse, I then tried a milky enema solution which made me worse and finally I was given slow release pentasa tablets in May which again made me worse so all in all, I can't take mezalazanine drugs which is a shame as they work well for a lot of other people. I'm now on Azathiporine long term (8 months and counting) to supress my immune system and I take pred when I falre up, typically start at 40 mg although last may/june I had to whack it up to 60 for 3 days but it eased up a lot after that. After last January's massive flare up I've only had one small relapse in May so, so far so good! Worth giving asacol et al a try, might work a treat for you!
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 27 2007 17:24:56
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youngitalianbabe
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Well to be honest some random MT guys seem to be a lot more informed than my GP. I tend to research things myself now anyways after my Canadian GP screwed me up.
I'll try it and see how it goes. I'm not very bad now that I don't go near milk but I still suffer from on-going medium symptoms because most foods are mild triggers. And the tiredness, bloatedness and random spasms is getting unbearable and seriously preventing me from doing things. I'm getting tired of just having to 'live with it'.
Gothic, how quickly did you notice your symptoms getting worse after using the drug?
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 27 2007 18:16:28
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Gothic_Muscle
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quote:
ORIGINAL: youngitalianbabe
Well to be honest some random MT guys seem to be a lot more informed than my GP. I tend to research things myself now anyways after my Canadian GP screwed me up.
I'll try it and see how it goes. I'm not very bad now that I don't go near milk but I still suffer from on-going medium symptoms because most foods are mild triggers. And the tiredness, bloatedness and random spasms is getting unbearable and seriously preventing me from doing things. I'm getting tired of just having to 'live with it'.
Gothic, how quickly did you notice your symptoms getting worse after using the drug?
I was pretty bad before taking it, making upto 15 trips to the potty in a day and after taking asacol foam It got really bad in the space of 24hrs, I was up to 20 visits, 2 days later I was up to 26 visits in a 24hr period (my current highest number of potty breaks!). Afer this I checked myself into casualty and I was admitted that same day and taken off asacol (thank god!!)
I did try Pentasa slow release tabs when I was free of a flare up but a couple of days into taking it my symptoms came back so I took myself off it and haven't gone back to mesalazine based products since and if my consultant treis to put me on it again I will tell him non!!
Like I said above, these didn't work for me but they do work for the vast majority of people so all you can do is give them a go and see how you get on with them. I gave each one a fair go for as long as I could bare the reoccurence of my crohn's symptoms, at least then I knew and could tell my specialist that they defo don't work for me!
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 27 2007 18:34:51
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b0x
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About 80% of people tolerate Mesalazine without issue.
Interestingly I can't tolerate Asacol orally or as a suppository (predfoam is really good though) but I seem fine with Pentasa. Mesalazine has free radical scavaging properties so I feel it's important to be on it to reduce the risk of colon cancer (us IBD suffers have an increased risk)
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RE: Some questions for fellow colitis sufferers (includ... - Aug. 27 2007 18:58:05
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James
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I notice many of you mention the tiredness.
Wasn't really a problem for me
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