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Internet = dangerous


Tue, December 01, 2009 3:52 PM

Hi everyone,

I wonder if anyone has any tips for keeping "googling" in check. What I mean is, sometimes when I'm feeling worried about my colitis, I'll google every little symptom and find myself on the internet for hours, making myself nervous and reading horror stories or sob stories, etc. I waste so much time this way and I know it's not good for my mental health, but I just get sucked in. I feel like I don't have a lot of places to go for information.

Any tips for coping with colitis in general would also be appreciated. I'm a 21 year old college senior who was diagnosed this past September and I'm SO sick of thinking and worrying about my COLON!! The scariest part of this condition to me is not knowing what is going to happen - I hate the unpredictability of it. I'm just having a hard time with all of this. I've made an appointment with the counseling services at my school but could use all the advice I could get.

Thanks and best wishes to all of you.

FPO acm1218
Joined Sep 9, 2009

Mon, December 14, 2009 1:00 AM

 Reply posted for acm1218.

My 19 year old daugher was diagnosed with UC 3 years ago.  She was going on the internet also like you.  I told her first pediatric GI doc about it.  He said so many sites have such old outdated information that can scare her so much.  He said this website, ccfa, is a great site.  So is this forum.  He also said there have been so much research on IBD that there should be a cure in 10 years.  She is currently seeing a new IBD specialist since she turned 18.  My daughter really loves him.  Do you have a really good doctor?  He told my daughter that many UC patients have "bacteria overgrowth" and probiotics really do help.  My daughter is on the probiotic called Ultimate Flora Critical Care 50 Billion.  She's also on Women's One a Day vitamin and Oscal.  She also takes Azathioprine and Lialda and has her blood tests every 3 months.  Are you feeling ok right now?  Keep us posted.

FPO ez
Joined Nov 9, 2008

Mon, December 14, 2009 1:00 AM

 Reply posted for acm1218.

Use "Google Scholar" if you really want to get into the deep medical info.

 If you just use regular google you get a bunch of junk.

But if you are going to google I would recommend googling "Jini Patel Thompson" buy her book.  Read her book and never google again for IBD.

FPO patman75
Joined Feb 8, 2009

Wed, December 09, 2009 4:03 PM

 Reply posted for acm1218.

Hi there,


I was in a similar situation that you were in a couple of years.  I got diagnosed with Crohn's 2 weeks before my senior year of college began.  I was a mess and like you began googling and searching.  I know that it is hard not to look for stories about UC or Crohn's but you should look for positive stories and information on the disease that is going to help you get through it.  I found that it is really important to trust in your doctor and family as well.  They are there for you and they care about you.  
Live your senior year as best you can, focus on getting healthy, classes, and fun.  Remember to stay positive and lean on those that you love.  If you need someone to talk to please feel free to e-mail me.  jlepri9783@yahoo.com

Jess

FPO jlepri9783
Joined Sep 9, 2008

Sun, December 06, 2009 7:16 PM

 Reply posted for acm1218.

The internet is a great tool for informational purposes other than medical.   You can truly make yourself crazy.  When my daughter was very sick as an infant, I would turn to the internet for answers often because the docs weren't cutting it.   After 4 yrs. and her CD diagnosis, I practically lost my mind.   I finally stopped the googling and began educating myself of the disease and focusing my attention on cooking and baking in a lifestyle that will benefit her.  I also found a support group (through her doc) that was helpful too.   It isn't easy to do, but you should STOP THE GOOGLING!!! and START LIVING!! 

Really, this is your senior year.  Enjoy every minute of it.....this part of your life is incredibly short.....you shouldn't waste it on worry. Continue to do your best in everything you do....in school, with your health and in your personal life. 

Best wishes to you.

Lizzies Mom 

 

FPO lizzies mom
Joined Sep 9, 2009

Sat, December 05, 2009 1:00 AM

 Reply posted for acm1218.

Googling

My guess is your looking for an answer that isn't there. Your hoping to come across that cure... that obscure remedy. It's not there.

Googles a wonderful tool but remember you don't need any qualification to be  on google. Try to just visit ligitament sites. learn all you can about your desease. Then take this knowledge and manage your own desease. No one is going to do it for you.

FPO jim
Joined Nov 28, 2009

Fri, December 04, 2009 5:12 PM

 Reply posted for Titan1.

 I too find myself googling, it doesn't help seeing all the horror stories but at times there are some very hopeful stories. I was also thinking that worrying or stressing doesn't help our situation. I am diagnosed with UC, I was diagnosed two years ago, I'm 25 almost 26..I find that I have the most flares when I am stressed about work and school... I'm a workaholic and UC reminds me that I need to take time to relax and no over do it... I mean my stomach will choose act up at the most inconvenient times...

FPO mnqshann
Joined Nov 27, 2009

Thu, December 03, 2009 10:02 PM

 Reply posted for acm1218.

I am the same way! I'm a college junior, 21, and I was just diagnosed with Crohn's about a month ago. I CANNOT STOP GOOGLING! I feel like there is no answer, so I just keep looking. Then I'll find something scary, and google even more. The worst part was, before I even had my colonoscopy I was googling symptoms and one of the, of course worst case senario, answers was megacolon, and I freaked out. I called my mom and was like "I think my colon is going to explode!" I feel so stupid, because at 21 we shouldn't have to think about our colons...

Don't worry, your not the only person with IBD addicted to googling.

FPO pirategirl
Joined Nov 24, 2009

Tue, December 01, 2009 9:34 PM

 Reply posted for Titan1.

Yes, I do the exact same thing. It's so egocentric but I imagine myself as every one of those people. And then I go around googling things to "confirm" everything I've found. In general I've always been a hypochondriac. I've convinced myself that I have everything under the book at some point or another. I'm so much better off when I'm busy and don't have time to do all of that, but it's so easy to get sucked in.

FPO acm1218
Joined Sep 9, 2009

Tue, December 01, 2009 7:30 PM

 Reply posted for acm1218.

Getting counseling is a good step, the Googling thing isn't. There is a lot of information out there and that's good. The problem is it's not necessarily in any context. It's number and side effects, symptoms and disasters. I think what happens (at least to me) is that I imagine myself as everyone of "those" people- at the same time. I get every symptom, complication, medication reaction, surgery etc.---vicariously.


I finally put a halt to it and realized I am who I am and I'll deal with my body, that's all I can do. If you trust your doctor(s) that's a good first step. You may step back from all the research for a while because it can drive you crazy. I know it's not easy but every time you go to look for something out there, try and choose a different topic and look for that- like a hobby or something. 

Information is important but it can soon overwhelm you. You'll learn a little at a time and be able to process it. Less stress and you may even have fewer flares, who knows? In any case you're not alone. You may have to do a mental getaway!

FPO titan1
Joined Sep 1, 2008

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