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View Poll Results: How much information do you know about your disease
I know its name and let the doctors worry about the rest 0 0%
I know what is going on with me, but I need to be told about changes by the doctor 2 4.44%
I am quite knowledgable about the disease 9 20.00%
I go through anything and everything I can get my hands on about IBD 34 75.56%
Voters: 45. You may not vote on this poll

08-31-2006, 05:11 PM   #1
mikeyarmo's Avatar
Join Date: Feb 2006
Location: Toronto, Ontario
How much information do you like to know about your disease?

We all handle situations differently, and the same can be said about managing and learning about our diseases. While some people take it upon themselves to learn anything and everything they can about what they have, others are more than happy to just go on living a normal life (as much as possible) and let the doctors worry about the actual disease activity and controlling it.

There is no right or wrong answer here. Truthfully, I know I did not do much research until a bit more recently, so I went at least a good year knowing only what the doctors would tell me about the disease (and a bit of CCFC readings). Now though I have read a lot about it, and feel I am quite competent about IBD.

So how much do you know about your disease?
09-01-2006, 04:26 PM   #2
i have to know everything to prepare myself to deal with the disease and the possible futuer.... i drive my dr insane with my knowlege and questions
09-12-2006, 10:47 AM   #3
I used to think ignorance was bliss, but I was bound to pick up a few things here and there after a while
09-12-2006, 11:59 AM   #4
Senior Member
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
The old saying 'a little knowledge is a dangerous thing' is a double-edged sword. I recall all too well how people with a 'little' knowledge of computers would take a small issue with a 'puter' and turn it into a nightmare. Think the same can be said for medical knowledge... but there is a slight difference. A doctor may know what a disease looks like, what the symptoms are, what the optimal treatment may be..
BUT that is all objective knowledge. I suggested to my latest GI that staff who are
involved in colonoscopies undergo them at least once 'firsthand' as a patient, with periodic updates. Just to put that objective knowledge into true perspective. She laughed nervously at the idea.. BUT I wasn't joking. I came away from my last scope with almost total amnesia of the post procedure process, but no one who has had one will ever truly forget the preparation. Think hospital staff need some first hand exposure to the process themselves. So they could truly see it through our eyes. ... But enuff of that. I think we owe it to ourselves to ask as many questions as we feel we need to ask, from as many reputable sources as we can find... WITHOUT fixating on it (like, do you want your disease to eat up every part of your life? Personally, I don't).. Think it will do a number of very positive things for us. Med staff will treat you more seriously IF you display a serious, informed knowledge of your illness - will stop a lot of their inadvertant condescending ways
that they treat a 'typical' uninformed patient with... For instance, I had an elderly night shift nurse who would wake me periodically from a sound, drug induced sleep to tell me she was just going to put this armband on me to check a 'few' things... she'd go on and on about how it wouldn't hurt, how it would only take a few seconds, etc. etc.. I didn't know which I took more offense to... her waking me up when getting to sleep in a hospital is such a problem anyway OR her modus of talking to me like I was an toddler in the pediatric ward.. I knew she didn't mean to offend, she was just doing her job.. Yet despite repeatedly telling her that it was ok, she'd go thru the whole spiel each & every freaking nite. So, I finally said.. So, you are putting on the sphygomamometer and checking both my systolic & diasstolic pressure by listening to the stop & start of the pulse in my arm
(OK. so maybe my spelling sucks... BUT it stopped her from inadvertantly treating me like a child despite the fact that my little outburst was pretty childish) and from then on she'd come in, wake me for my (as she started calling it) BP check, and we'd talk about the weather, politics, whatever.. have a little pleasant chat w/o a lot of needless explanation. etc.. AND she'd tell me my current vitals.. BP, temp, & heartrate, respiration, etc., (something she'd never confide to me before then) so I knew each day how much better I was getting without waiting for the 'official' word from the doctors... And, there are 'booby' traps we can avoid if we do some homework... Whether ill or not, lots of folks pop herbal supplements in themselves without thinking about it.. Nightshade & hemlock are herbal, but you don't want to go eating them.. And you might stumble upon something that can make a difference... want to try it... Well, do your homework, talk to your doctor,
have an informed discussion. It doesn't mean that you wrestle with your doctor over who's in charge of your treatment... and if you feel comfortable (best) with letting your doctor take charge, making all the decisions, fine. Great. If it works for you then God Bless... But, if you'd feel more comfortable taking a more active approach, by all means pursue it. If your doctor is less comfortable with the idea,
then you need to examine WHY. Doctors are only human.. they've been trained, tested, licensed... Have years of experience... But they can make mistakes too. I personally feel the more I know, the more I understand why my doctor offers me such and such as a treatment, suggestion, recommendation.. the more comfort & faith I have in her. And she in me. She knows I'm interested enuff in getting well to follow her advice, follow my treatment plan, stick to my depressing diet... etc..
Why is that important? Welll, she's off now for 6 months maternity leave.. she has tons of patients, most of who are in a 'stable' condition.. approx. 6 dozen+ who aren't yet.. There's a critical shortage of GI specialists here, and an almost overwhelming number of IBD patients. She'd arranged with another GI to have him periodically monitor her 70+ patients who needed attention for her while she was away... Unfortunately, the GI had to suddenly quit practice due to cancer. It meant that those 70+ patients had to take 'pot luck' with other available GI's. My point... GI's volunteered to take her top 40... the rest would have to wait for her return or go the ER route... I made the top 40... Was it because my condition was
worse than 30 others. Or because I showed I was actively participating in my own
treatment? Who knows.. But, if I were the doctor, who would I want to take on as an extra, shortterm patient? Someone who cares enuff about their health to follow treatment, to keep appointments, to follow their diet, or one who doesn't?

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
09-13-2006, 01:07 PM   #5
Cara Fusinato
Sarcastic Forum Comedian
Join Date: Sep 2006
My first Gi doc was -- "here, don't ask why, just do what I say. Don't eat food, ever. And if you do eat food. Don't! Oh, and fiber and raw veges will kill you. And you are a time-bomb and it is a matter of days, weeks, maybe before you are having surgery. What, you need to wait a couple weeks for your husband to be able to take care of things? Well, good luck!" That prompted me to research the illness AND find a better GI doc. Once I understood what it is, why it happens, how it happens, it makes it feel much less scary and helps me feel more in control and makes things make more sense.
09-21-2006, 09:31 AM   #6
I guess I only knew what my doctors were telling me for about a year, in which time I became very knowledgable because of them. But since then I've read everything I can get my hands on. I've bought books. I've read online books. I get updates sent to my email. I check several sites, and theres alwaays good ole' google search!
02-02-2007, 01:14 PM   #7
Senior Member
Join Date: Jan 2007
I also try to gather as much infromation I can find, started as cursosity, because nobody knew much or wasn't talking about it.Found out that lack of infro is a big problem here anyway

02-02-2007, 02:17 PM   #8
Senior Member
KCMike's Avatar
Join Date: Nov 2006
Location: Kansas
There is no such thing as too much information. The more I know, the less FUD(fear, uncertainty, doubt) I have with Crohn's.
10-09-2007, 09:37 AM   #9
hanaa al baydany
i try 2 find any information about cronhs. specially i can't find much about my case.
10-09-2007, 06:30 PM   #10
D Bergy
Senior Member
Join Date: Apr 2007
As a business owner and a blue collar worker, I am so used to solving problems that I could not just leave everything to the doctor. Especially since it has cost my family dearly by questioning our own judgment instead of the doctors.

If we would have relied on past doctors recommendations, my wife would be crippled with arthritis with possible heart problems and unable to function normally. She would also be on any number of pain medications.

When I finally decided that the two of them were absolutely wrong and we knew the correct diagnosis and took the treatment into our own hands, she rapidly improved and now can function normally. She still has Lyme disease since the time we wasted trying to get a diagnosis cost precious time, and the window for a cure was slammed shut. Now we have to find an alternative method to try to cure her disease. This was our payment for trusting the professionals. If I seem a little bitter it is because I am.

Then when it was my turn all the appropriate tests were run and feeding me antacids that did not work was the answer given. I actually cured myself of the horrible reflux problem by eliminating H Pylori that three tests said I did not have using an alternative method that officially does not work. That took care of half of my problem but not the stricture that was in me that they could not diagnose. They even mentioned the thickening but said it was in normal range. Come back if it does not get better, here are some new acid blockers.

The smartest thing I did was seeing a GI specialist who knew what he was doing.
Thanks to him and an excellent surgeon I am now, much better.

The GI doc recommended I go on Imuran for life. I already knew what the drug was and decided against it. I would no longer go along with anything that I felt was not in my best interest. I will say that out of all the medications for Crohn's that are commonly used, Imuran would be my first pick. I knew too much to go back to my previous ignorance. We had already paid too high of a price doing that. Needless to say I use multiple sources, both reliable and unreliable to find and test various methods of treatment.

I am testing one on myself right now that is totally new in its application, untested in any kind of meaningful study, and while I am still assessing results, it appears to be an extremely effective killer of pathogens in the body. I will not even say what it is because I do not want others testing this since there is so little hard evidence of safety or effectiveness. This is how I find out what works. It is not without risk in this case, but the potential for my wife is too great for me to ignore or wait 20 years for an official opinion.

I did not want to get into medical issues as much as I have, but necessity is the mother of invention, so I reinvented my way of thinking and doing things to solve the problems at hand. I will not do it any other way if it is within my ability.

My personal opinion on the medical system as it is today, is that the system is at least twenty years behind in treatments. And I am being generous in that estimate.

I will give credit also. If you find a good doctor, the diagnostics they use are second to none. I am impressed with level of sophistication in the diagnostic end of things.

Dan Bergman

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