Well this is the information age that's for sure. Sometimes it's good and bad! I know what you mean though. I have learned more from the good people on this site than from any doctor I could have asked!

About the stricture...my surgeon was up front with me about the fact that it would take several (6 to be exact) dilations for the stricture to stay open so I will give him 2 points for that one!

I think you are your best advocate. I think internet research is a wonderful tool that should be considered alongside what a Dr. says. Be warned though that you might meet some resistance from your doc if you keep doubting what they tell you. I've had docs stop seeing me because I questioned what they said. Turns out in the end, I was right and they were wrong. I sure felt like I was in the wrong at the time though! No one wants to be rejected by their own doctor. Let me give you an example: I was going to start 6mp or imuran. My GI said that because of the chances of birth defects on the med, I should "get at least two forms of birth control that don't include a pill or condom and he would feel better if I just had a hysterectomy!" I was so convinced I needed to listen to my doc so I could feel better, I went to an ob/gyn to ask about this. She said "you've had 10 years of infertillity...one form of birth control would be plenty... don't feel like you have to do everything a doctor tells you to do, that would be insane"
Needless to say, she helped me snap out of my "follow doctor's orders fog" and I found a new GI.. the new GI gave me the drug with NO birth control requirements, I took it once, threw up 4 times and couldn't take it anymore! Now imagine if I had gone through a hysterectomy surgery only to discover I couldn't take the stupid drug! Close call!
Another... I had doctors in the hospital insist I needed to take steroids for my UC even though I knew that steroids didn't work for me. Only to find that it hindered my recovery from surgery later on. Whether a doctor has all the answers or not, we should at least be able to have one that won't get defensive when we ask all the questions we have and challenge their thinking.

wow, that is crazy.... yeah i google a lot of what my doctor says just to 'cross-check'. I think the more I do that, the less trust i have in my doctor and the more i question. guess it is a balance of doctor advice, support system and your own research, plus 'gut instinct'.

my doctor told me there are no long term side effects being on cipro and that people are on cipro for 1-2 years. i don't know about that one either.....

I think if a dr isn't open to hearing what is going on with the Jpouch community ie lots of patients with these problems they are not a very good dr. My dr is always happy to hear. "news". She can't possibly spend as much time on the specifics of each patient as they can themselves. If your dr disagrees, find another dr. Your approach is important too. Try not to sound like you know better or that you are telling them what to do. There are respectful and reasonable ways of presenting your position without being condescending. FOr example, present it as a question,"have you heard about this latest research?"

I have a friend in the medical field who actually gets annoyed by patients who trust internet knowledge and brings this knowledge to the office ---he thinks they're crazy (not to put anyone down but just being honest). He deals with patients like this all the time and rolls his eyes in his head (inwardly)..and deep down thinks "Oh know...here we we go again...another patient gone on the other side..."

The internet has a lot of information, some is good and useful, some is nonsense, some is personal experience and most of it is not scientifically proven or based on scientific fact where studies and experiments prove something. and to doubt the doctor over internet information is a dangerous mind game. Patients have gotten worse by not following the doctor. He has seen this too...

The fact that we live in a time where we do have science and medicine compared to years before (what did patients with UC do before etc)...or even now in third world countries...wishing they could see a doctor or traveling miles to see the village on a donkey (I'm picturing a donkey) to see a doctor to get some relief. ..and here right at our fingertips where educated doctors are here, we doubt what they say or the proven facts of medicine.

I can only reiterate the risk of doing this internet game. Too much information makes you second guess anything...do you really trust who is on the other side of the screen and believe they are who they say they are? Are they crazy? Or really genuine vs looney? The internet is full of fraud and spam too. Would you trust someone you were talking to while dating on the internet and believe everything they say and believe what they say?

okay so you don't trust your doctor fully or have a doubt...go get a second opinion. a third opinion, but ask the doctors... the specialists..not the internet where the information can make you mentally second guess everything...

-someone who has been there and hears about it with her doctor friend during lunch hours....

As I said, my Dr. is happy to hear what I've learned and if she wants more info she will pull it up on the internet on the spot. I won't deal with jerks like that guy. They can either do their homework or listen to me. I know I am really fortunate to get a Dr. that is as open as mine. They are out there.

quote:

to doubt the doctor over internet information is a dangerous mind game

There is a lot of nonsense on the Internet but good information as well. One has to be able to sort it out. I see many people taking what they read on Internet boards to the bank as if it was unadulterated truth and they end up finding out the hard way it is not. One must be a critical thinker and not accept everything one reads in an unadulterated fashion.

My Doctor is younger and internet savvy and I have frankly discussed with him theories and strategies on this board. For example I discussed with him fecal transplants which I read about on this board and he said that this is another theory about attempting to get the correct bacterial levels in the intestine and some people subscribe to the theory and others do not. I think he mentioned it may be of more utility for those with colons.

There is nothing wrong with using Internet and Doctor as dual resources. But if you go in to the Doctor and start cross examining him/her on things you read about on the Internet and second guessing him or her, you may erode the trust in the relationship. Doctors, like attorneys, want to feel they are being trusted. They are humans. Patients are either good communicators or not. A good communicator throws it out as for whatever it is worth and you let the Doctor comment. Do not use it to second guess. I have always been able to have intelligent conversations with my Doctors based on my own research. There is no reason to make someone agitated, it's just an exchange of information.

I am a personal injury attorney and I read my clients' medical records all the time. I hear things from them that I do not read in the records I am getting. I then question them about what they are and are not telling their doctor. All I can say is I have some clients who are flat out terrible communicators. I wish I could be in the room with them when they see their doctor, but I can't be. I have on some rare occasions had to call Doctors for patients who were horrendous communicators. I have also found that it is the poor communicators who complain the most about their medical treatment.

Some very interesting points, thank you!!! I liked reading it.

I guess the internet is in some ways still in its "infancy" stage. Trying to search and find valid, reliable information is not always easy. it's like a maze, and i get lost reading so many forums, so many different experiences. Like if someone says they had a j-pouch problem and it HAD to be fixed with surgery. I google some more and find similar stories.

What happens is that if i have the SAME problem they have, I immediately freak out and think I will also need that surgery! I private message the forum member and they tell me, yes, I will likely need more surgery!

Who is that person on the other side of the screen? A well-meaning forum member? A disgruntled person who is disappointed in their j-pouch? Someone who thinks they know a lot about j-pouches, including my own? A misguided adviser who is basing something on their experience? Or a j-pouch expert? Or even doctor or nurse?

you're right, i am second guessing my doctors, which may not be good. Because I feel that patients that live with the pouch may "know" more than some doctors because surgeons see patients from time to time and may not know the regular struggles?? Or they may not want to scare the patient, so they withhold information until a later time? Only share when the patient really needs to know?

I tell my doctor I heard some bad news on the internet about the same issue I have, and they said no, wait, we don't think that will be your case. And I don't believe them!!! I tell them that I read 75% or whatever number cases require surgery. What I fail to remember is my doctor has my records, has examined me, and is looking at each patient uniquely. I think that's when a 2nd or 3rd opinion would indeed help.

However, I would like to be able to go to my doctor and cite such things. Even if he thinks in his head I am crazy and paranoid, I think a lot of patients must be doing that in today's internet age? (maybe not to the degree that I do....)

I was gonna start internet dating soon....that should be interesting!!! gotta be careful with that one too!

quote:

I was gonna start internet dating soon....that should be interesting!!!

One of my colleagues at work met two of his three wives via internet dating websites (wives #2 and #3). So far he is 1 for 2 with the "internet wives"............a .500 batting average.

okay since everyone is quoting here's my 2 quotes I picked

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samantha1803 "As I said, my Dr. is happy to hear what I've learned and if she wants more info she will pull it up on the internet on the spot. .... They can either do their homework or listen to me"
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My comment: wow, your doctor actually has time to pull up information on the internet to answer your questions...she really has this much time? or not enough patients? or has to listen to you to get to the next appt? I don't know if this is a good or bad thing when the doctor is doing what the patient does and goes online to search the same stories for discussion... the only time my doctor pulled up the internet was to find the nearest pharmacy of where to send my medicine!

Doctors do regularly read journals and the updates on science/surgeries, etc. They do stay with the times so to speak and are aware of current information.

_____
fq: "Trying to search and find valid, reliable information is not always easy. it's like a maze,....I google some more and find similar stories."
______

I understand what you are saying, but this is a cycle...you are searching and searching for the stories --so in a way you are diving further and further into the negatives or the "scary" stuff when it might not even apply to you but you get hooked, so keep searching...instead my advice is to search for the positive stories.. in general search for "how to do people get back up after surgery" "how do people heal themselves mentally"..."what can i do to get out of bed and live day by day and do something"..basically positive stories, encouraging stories about people overcoming obstacles..(not necessarily surgery) but rough times in life, etc. Inspirational stories...this is a better way to go searching online instead of going through this endless "maze" to find something that you want to hear which does not help or even apply. It's counterproductive and brings you more down.

Ironically you mention patients know more than doctors because they live with it...etc. I think they don't know more, they just know too much random information from having the time to read about it online!

and the cycle continues....


yes internet dating is good. why not? i have heard many successful stories!!

I have learned a lot from the internet, but the value of the information depends on where it comes from. Medline, journal abstracts, association websites (such as CCFA) and other sites where information is vetted are generally more useful than anecdotes from other patients. I would rarely, maybe never, give any discussion board story as much weight as a doctor's opinion. That said, I learned about VSL#3 on this board before my son's GI knew about and began recommending it. I think I may even have been the first to mention it to him. As DJBHusky said, it's great to be able to educate yourself online, but you have to use some discernment in what you take to the bank. I have been known to print out abstracts or studies and ask doctors about them, but the last thing I would do is regale a doctor with endless individual discussion board stories.

I think Connie offers good advice here. The quality of your information depends upon the quality of your source. The challenge many of us face is finding high caliber and thus trustworthy sources.

One possible source I have found useful is UpToDate. It is a subscription service that provides access to the same recent medical research that health care providers utilize. As it says on the website "After you read the information in UpToDate, you will have the tools to ask the right questions and have important conversations with your health care provider".

I think the cost is something like $20/week or $45/mo. This may seem like a lot, but if you have a specific research question you can dig up a ton of current information within a subscription cycle.

Well, you have to filter the bad from the good but the information I've gotten online has been far better than what my doc gives me.

thanks everyone for the great advice! i truly appreciate it, and will think about this next time i go on a google frenzy for each and every health problem!

I wish I could marry a doctor so I can pick his brain all day hmm...second thought, that union might not last!

Fq,
My surgeons have always listened to what I have to say, what I believe may or may not be right for me and alternative treatments that I may have heard of here or on other boards or from more savy members...They are always willing to at least consider new information and have even done certain procedures on me that we have elaborated together...I often tell them what is being said or done on the board and works or doesn't...I am fortunate that I have doctors who medical skills depass their egos and they are open-minded and willing to learn.
One doesn't know how to log onto the net and the other surfs constantly...I guess it just depends...as for my opinion? I believe that you have to use your common sense and follow your gut...but you also have to trust the doctor that you work with and believe in him/her.
I have fired doctors minutes before surgery and have walked out of exam rooms screaming and insulting a doctor for his incompetence because he was too buy being a bigshot to be a good doctor (pulled the stitches out of my stoma when I told him that I wasn't healed and my stoma sunk!)...so it just depends...what I have learned is that you are the owner of your body and nobody is going to care for it as much as you do.
Sharon