What have you learned on the forum?

[Crohn's 35]

What have you learned from being on the forum?

Since I have been on here almost 2 years, I have learned everything I needed to know about the Biologics and was good to see blogs of those who had them. Lessens your fears and questions you may have to know side effects, risks and needles.

I found alot of you have so much compassion for others. I also found some of you are pretty funny! Good clean fun. Lets face it we all need to laugh at times when this disease takes over.

Share your learned experiences on here!

 

[Guestly]

Hi Jetta Lady,

I think I have learned more about my condition here than in any book or from any doctor.

And, like you I have learned about incredible compassion - that people genuinely care for each other even if they have never met and are on the other side of the world is both astounding and wonderful!

Lishyloo

 

[CrohnieCarolyn]

I've learned that you're all just a bunch of bums! LOL Sore bums that is... Seriously, I too have found an increadible amount of understanding and compassion - NO ONE really understands this disease except the few unlucky souls who have it...I've learned that I am NOT ALONE! It can be such a lonely disease when we are sick and flaring and it goes on and on without relief and we just have to wait it out...I've learned we have to have more tolerance for those who have differing opinions whether it is concerning treatments, diet, whatever, as this disease is different for everyone and finally, I have learned that it COULD BE WORSE in the case of Mud Girl who is in my thoughts as I go about my day...

 

[Crohn's 35]

Hi Jetta Lady,

I think I have learned more about my condition here than in any book or from any doctor.

And, like you I have learned about incredible compassion - that people genuinely care for each other even if they have never met and are on the other side of the world is both astounding and wonderful!

Lishyloo

This is true, it is like a male Doctor trying to tell you what labour pains and giving birth is all about. I wished computers were around when I was first dx, books were outdated and not much info, so I think anyone who does get the disease now, help is here and technology has come along way.

 

[imisspopcorn]

I've learned to be thankful.....there's always someone else in more pain, sicker, or sadder than I am.
I've learned that supporting others with a kind word goes a long way in making their day brighter.

 

[fenway1971]

I've learned so much:
1. I'm better educated about drug treatments here. The stories on prednisone and 6mp were uber-helpful and made me able to ask my GI great questions. No doc prepared me for the side effects of pred or offered good advice on supplements, etc. Nothing like hearing the truth from fellow sufferers.
2. I learned that there are lots of compassionate people in the world. You are all the most amazing folks I could ever meet. I'm blessed to have your support. I seriously don't know where I'd be if I hadn't found you in my dark days last August.
3. I learned not to be embarrassed about this disease. It's ok to laugh about it.
4. I've become a stronger person too. Seeing how many of you suffer yet keep your heads up and spirits strong is awe-inspiring. If I can be half the person that some of you are, I'll be proud.

Yay, CF!

 

[shazamataz]

I have learned heaps as well. like someone else said, more information and support here than one gets from the medical world! Makes me more confidend in making deciions based on others 'real' experiences rather than doctor info from a textbook.
I have also learned how wonderful 'sick' people can be. I think being ill gives people more compassion/tolerance/understanding of others. I am always amazed that people who are really ill can find it in them to offer support and kindness to others and gain great pleasure from being able to do this myself.
Makes me kinda sad that I'll likely never meet any of you wonderful souls

 

[braveheart]

...I think I have learned more about my condition here than in any book or from any doctor...

I totally agree. After years of suffering this disease, having tried different treatments and searching for information on the Internet I think we know more about CD than any gastroenterologist.

...I have learned that it COULD BE WORSE...

I also agree with this, and it is kind of depressing me.
Sometimes I consider stop reading this forum but I've found very useful information and a bunch of supportive crohnies here.

 

[Crohn's 35]

I have also learned not to make plans too much, because something always comes up. I try to live my life one day at a time. I am grateful for the fact that I live out in the beautiful Country. I have learned no matter how much I think positive, sometimes Crohns has no rhyme or reason. I have learned that the best place to get answers is here, with all you great people!

 

[Peaches]

Hmmm, missed this thread somehow.

Well, I have learned that even after being diagnosed for 13 years - there was a heck of a lot I did NOT know about this diease.

I didn't realize how differently people react to foods and meds. It just amazes me how we are all in this thing together - but we are all so different! It makes me more understanding of what the doctors have to go through in dealing with all of us.

I have also realized how much better it feels to know that people who understand exactly what I have and am going through are RIGHT HERE. It has been such a comfort - like a big burden has been removed - to be able to talk to all of you guys and have you understand. I am lucky that I have a very supportive family, but there is just nothing like talking to people who have been there.

I have had to learn the hard way not to "stick myself all the way out there" as well. While the internet is a great place - I have learned that, well, there are crazy people out there LOL! I have also learned that everyone here can be forgiving......which is nice

And I have learned that there is a lot of compassion on this forum. I am amazed at how helpful people want to be for complete strangers. I am glad to be a part of this place :O)

 

[uab grad student]

Wow, I'm glad this thread got bumped since I wasn't on the forum in November...

I have learned that we all have a lot in common even if our disease manifests itself differently (I was amazed at how many of you also didn't get diagnosed for years after your first symptoms...), strangers CAN be your good friends, and like imisspopcorn said, it can always be worse so I have to be thankful for right now.

 

[bethyd78]

I have learned that alot of people have EMPATHY they understand what it is to live with this disease. You talk to people in the outside world and they so it's just something you have to live thru or with and they don't want to hear you. They just close the door and say too much info.

 

[pb4]

I've learned that not all forums are the same, this forum in particular in one of the very best because of the format you can go to parts of the board and just let loose and lets face it, that's more realistic than the forums that expect you to be a "certain way" all of the time, some really silly and hard-ass rules on some other forums and it's not near as fun. Sometimes people going through pred-rage write things that they normally wouldn't write and actually get banned for writing stuff that isn't even that bad.

I've also learned that this disease can change people emotionall and mentally and that real support is accepting people even when at their worst, just as it's done at this board.

You guys deserve a pat on the back for being such a great and true support to one another, and for having the best sense of humor and being able to share it and not get smacked across the knuckles for it...being able to talk about medical MJ would be completely against other forum rules and just simply discussing it is completely harmless yet other boards freak over it and totally erase threads about it. This board is much more open and realistic to our needs...Thank you Mike for that and to all the members here that are able to discuss everything openly and honestly and still with tact and respect.

 

[tamesis]

I haven't been on here long, but i have learned that i need to be more assertive with medical professionals. i'm still working on that, but i recognize the need for it.

i've also learned that everyone has something different to offer. Even though i don't have a diagnosis, and haven't been dealing with things nearly as long as others, i still feel like sometimes i can be helpful towards others.

 

[Crohn's 35]

I have learned quite a bit from my own disease, to not give up and never say it won't happen to me. I was NOT a bleeder until recently and I thought it would never happen.

 

[CrohnsHobo]

Have not been here long, but so far:

I have learned how this disease effects people in so many varied ways, not two people are alike when it comes to Crohn's
Other people get PG too
What LDN is
What SCD is
How supportive everyone here is

 

[ameslouise]

I have learned TONS about Prednisone side effects!

I have learned that my current condition isn't really that bad compared to so many others.

I have learned that I while I have the support of my wonderful, amazing husband and family, nothing compares to the compassion and understading of those that share this disease. Thank you all.

-Amy

 

[Fog Ducker]

What a great idea for a thread, how have I missed it??

I have learned so much!
That I souldnt be ashamed of this disease,
That there are other people in this messed up world tht actually understand,
How to deal with the mental part of this and not be in denial,
What my doctor is actually trying to tell me in his medical lingo, you guys explain it in real world language.
I could go on and on.

 

[D Bergy]

I have learned that sick people are lots of fun to be around. Nothing quite as humbling as a disease like this.

I have been pointed to more good research here than most any other place I frequent. And the support is better than anyplace else.

Dan

 

[Crohn's 35]

I actually learn alot from you too Dan! Sharing your knowledge is important. NO one can be researching all the time 24/7 so it is nice to get information from all over the world!