Were You Informed After Diagnosis

[DJW]

The last couple of years has really got me thinking. After my diagnosis 35 years ago (mind you no internet back then) I realize how little I knew; Government programs, resources, etc.

So in the information age do you feel informed or is the internet one giant scavenger hunt?

I'm very thankful for this forum.

 

[Orchid]

The internet in general is a deeply mixed bag: you can find any information you like almost instantly but it doesn't provide context. You can learn nearly anything but what it actually means in a greater sense. It leads to people with piles of facts and no system holding them together. People lost in piles of senseless gibberish.

 

[nogutsnoglory]

I feel informed with a disease that is extremely deceptive and confusing and challenging. What I mean by that is I know what this illness is capable of and I know the symptoms but it can be tricky because many times there are scares with pain and I don't know how seriously to respond to them. The Internet and this forum is a blessing when I'm in those situations.

 

[Erb]

My view is that if someone doesn't inform me, it's because they don't know. People who really know something, are dying to share it. I learn more from untrustworthy blogs than I do from WebMD or other trustworthy bull sites that just parrot the same crap over and over. When I get hold of something good like vagus nerve or gastroparesis... I go to pubmed and look it up for several hours until I understand it.

In that sense, no, I wasn't informed, and the internet has been the best place for me to learn about my disease. Doctors don't have time to do what I just described. They are too busy dividing their days into 15 minute increments and seeing patients, making snap decisions (usually accurate, sometimes not) about what illness they have, and making treatment decisions. I'm not blaming them, but expecting them to be an expert on your disease is not rational. Unless they're a special Crohn's-only expert, who only sees 4 patients a day, that's not happening.

I just want to add that WebMD isn't useless to me, I read that type of website (Medline, etc..) first because it provides a baseline, but I keep in mind that it's only the minimum information available. It's like a patient info brochure, meant to shield you from the yukky details. I live with yukky details, so I have a right to know what they are.

 

[Kero]

I am definitely thankful for the information that a regular person can access. If I didn't have access to the info I can get, I would have taken my doctor's diagnosis of IBS and just dealt with it. Because of this forum and various other sources online, I managed to put the pieces together and realized there is more going on, and has probably been going on for years. Still not diagnosed myself (Canadian healthcare is a hurry up and wait situation, ugh) but I know to keep pushing now till I can get answers

 

[Tuff]

Back in 2010, I was in the hospital for three weeks after I almost died of pulmonary embolisms. On my last day, a gastroenterologist stepped into my room and said, you have Crohn's. He said he was sorry, but he did not have time to talk to me, and left. I went home not even knowing what Crohn's was. I was not given any information on how to look after myself, just a list of meds worth $500 I had to pick up. Since then I have spent a lot of time reading about my condition, and visiting this forum. Without the internet, I would have felt lost.

 

[SarahBear]

I feel informed, yes. However, the internet is definitely one big scavenger hunt with ignorant people spouting nonsense all over the place. I consider myself lucky to have found the forum and obtained information in a place where the staff works to maintain the quality of information given out.

I was given virtually no information by my doctor when I was diagnosed and was frightened by a lot of what I found on the internet, so I didn't begin actively searching until I found the forum. Information isn't presented in a facts-only, worst-case-scenario manner as it is if you look Crohn's up on, oh say, wikipedia.

 

[vonfunk]

I was fairly informed by my doctor, my diagnosis came during a 3 week hospital stay. However the only thing he forgot to inform me about was regarding NSAIDs, I had mentioned during my follow-up that I was having a sore back and had been taking Advil, and then he apologised for that bit of information slipping through the cracks.

 

[shamrock15]

I was given a good stack of information to go through. However, mine has changed significantly over the years. It's difficult to really educate someone on what to expect as everyone reacts differently. Still, I had some basic information that others apparently haven't gotten.

 

[theOcean]

Crohn's runs in my family, and as a result I had my father to turn to. The frustrating part about this, though, was that he never really educated himself about the illness, so I had to turn to the internet anyway.

I at least knew about his diagnosis before I was diagnosed, so when I started getting symptoms, I knew what I had right away and started doing research online from then on. I definitely felt like I had access to all the information I needed.

 

[chicky402]

I find the internet to be very informative, however everyone has different experiences and triggers with Crohns. My GI doctor told me to turn to the internet for answers, which I found to be highly unprofessional. I am in the process of finding a different doctor who will be more informative about crohn's, especially since I was just diagnosed after a major surgery. I still don't know my triggers. :-(

 

[NitroNeal]

I have learned more from reading this forum and others then I have from my doctors .....

I had no idea fatigue was associated with crohn's till 2 weeks ago when I read it here on this forum.........

I had no idea so many others had so many of the exact same symptoms that I do...

In general with my diagnosis i was given very little information from my doctor, I am sort of surprised by how little information there is thru non internet channels......

this forum made me feel good...finally other people who actually understand what I am going thru...

 

[theOcean]

That's so great to hear, Neal. I'm glad this forum has helped you. :ghug:

 

[NitroNeal]

That's so great to hear, Neal. I'm glad this forum has helped you. :ghug:

No thank you !

the issues we face with this disease is stuff that most people probably wouldn't wish to talk about... So that leads to a bubble of silence surrounding the disease that leaves many of us in the dark.. For me maybe I didn't want to know, or just didn't want to accept I was actually sick...but I had no idea how many of my issues are directly related to this disease.