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New to this so have some questions..........

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Crohn's Disease
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Posted 11/27/2007 8:48 PM (GMT 0)
Ok, well firstly i have what may sound like a silly question. What is the maker's diet? Also- what seems to be the best probiotic?? Preferably one that doesn't need refridgeration.

And my main question: I had surgery about 8 yrs ago and the worst of the crohns seems to be under control. Yet i still get really bad days with D and it can last for 1 day or 1 week. I can't figure what causes it to happen, there is certainly no obvious reason anyway. But what i can't get doctors to answer is whether the crohns is back, or whether it's coming back gradually. I know nobody is ever fully cured but i am just so confused. I am also wondering should i be on some sort of medication even if it is in remission to help reduce the chances of flare ups etc.

I live in Ireland and i can honestly say that the medical system is crap. The doctors here have only a basic knowledge of crohns (it took my doctor 7 yrs to diagnose crohns)  and when you ask them a question they cannot give an educated answer. I live in quite a big county and there is only 1 specialist for IBDs. Plus to get to see him takes months, and when you do get to talk to him he has absolutely no interest in advising or suggesting anything to help. I am not exaggerating but unless you are dying in front of him, he will just say "Hello, you seem fine, come back in 6 months, BYE".

I am at my wits end, from what i am reading it sounds like there are alot more specialists in america who actually want to help their patients.

So if there is anybody reading who is in remission and knows whether or not it's the norm to be on medication to help stay that way, i would be delighted to hear...........Many thanks

Posted 11/27/2007 9:07 PM (GMT 0)
You can google the Makers diet and get info and read the book. I am not on it, but a lot of people oin this forum find it helpful. From what I have read, the current thinking is that you should be taking some kind of medication to maintain remission. A whole week of diarrhea doesn't sound good to me, so I think it would be good to be proactive and concerned. If you go to the Crohn's foundation website at www.ccfa.org they have a nice summary article about all of the different classes of medications to maintain remission, and can explain it all in much better detail than I can. your next challenge will be to get a doctor in Ireland to prescribe what you need. I am in the US, but I think there is someone else on this forum from Ireland...maybe she can give some advice. Good Luck
Posted 11/27/2007 9:09 PM (GMT 0)
Hi Lila do you have regular scopes every so often? Lots of people here seem to be on mainteance meds. I am on pred. but lots seem to manage on Pentassa .Asacol, and other meds. Gee just one GI doesn't sound like alot . I would think the Dr. could be a little more informative but I guess he is what he is. Glad to hear your not doing too bad. THe Maker's diet I don't know much about I follow low roughage easy to digest foods. I am sure there will be others who know about prob. I don't take them as of yet. Nice to see you here again. lol gail
Posted 11/27/2007 9:47 PM (GMT 0)
Hey gail,
This site is better than any doctors surgery. Plus i realise how unbelievably lucky i am to not be doubled over in pain anymore after every meal. But yes, i still feel i should be taking something to maintain a somewhat normal existence. I have not had a scope since i had the surgery in 99' Yes i know that's a disgrace but as i said if the specialist thinks you look reasonably healthy then he sends you on your way plus there are major waiting lists here for any type of scope. It's a national crime if you ask me.
BUT here is my worry - when i had the colonoscopy (in 98') before they diagnosed me there were polyps in the large intestine. Now i know they can be harmless but i also know they can become cancerous. Nonetheless, surely any doctor with a brain would have a patient back at least once every 2 yrs for a colonoscopy, especially with the crohns too.
I am actually now terrified about going for a colonoscopy now- i should have an appointment coming up in a few months. I'm convinced that the diarrhea i have and the major bloating is something more serious than crohns ie. cancer - god forbid. I am a natural worrier too and all the stress over thinking about it is doing my health no good either. I am becoming increasingly morbid day by day and am convincing myself of the worst. It may even sound a litle funny to read, but i swear, i am at my wits end and don't really know what to think anymore.
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