Facebook updates...

For those that have Facebook accounts do you ever want to update your status with stuff about your UC? lol.  We should have a Facebook group where we could feel comfortable updating with what we're really doing over the course of a day - like:  "Jane is in the bathroom for the 10th time today" or "Jane wishes the bleeding would stop" or "Jane is afraid to leave the house today". lol.  I take my laptop in the bathroom with me since I'm often in there for 10-20 minutes at a time.  I usually check my FB account and think about updating my status honestly. lol.  Just a little humor to go along with this wonderful disease, I'm sure my FB friends would not like seeing such lovely updates about me over the course of the day.

I have both, but really prefer Facebook over Myspace. When I started a Facebook, all the stuff I was using ended up switching to Myspace. I feel like Myspace is trying to keep up with Facebook. I feel like Myspace is becoming a copycat. Facebook is more fun anyways.

Along with the update thingy on facebook. I sometimes use it like I'm complaining about my UC. I only have friends on there that I know pretty well, along with family. But I don't "complain" about my UC all the time on there. If I do, I will have a ton of friends and family wondering if I'm ok. Don't really want that.

I'm on FB but I don't say anything about my UC on there. There is a UC group with over 1,000 members that I belong to though - you should join it!

AMK - can you send me the link to this group via email?

how do you find links on there?? I cant figure it out and its driving me crazy.....

Sometimes i want to talk about how this disease is taking over my life on facebook and how much i worry for my daughter....but i have no "friends" who understand the disease in particular, other than my nurse friends and they don't have much personal knowledge of it. Glamourgirl, let's be friends!! I'll personally message you. I feel facebook is a little more mature than myspace, although i have a myspace too. I also get sick of all the ads on myspace, although facebook has its share. As far as the UC group, is that CCFA? That's what i'm on, but would love to find others.

Sherry - I e-mailed you the link.

The group is called "People who live or support people with Ulcerative Colitis".

James L.

I'm not really ashamed of it. I just find the right moment. I'm sure everyone is different. But, I go to friends houses who provide food, so my husband and I try to make sure that I can have the food there. I talk about it because I want people to know how serious this thing is. Especially since I work with children. My whole family knows, both sides, my co-workers know. Basically eveyone knows. I'm ok with it because it is reality in my life. It's something that has kind of given me a bit of a fear due to the foods I cannot have. I went to Starbucks today, and the gal kind of messed up on my drink. Minor stuff, but I didn't watch her put soy in the drink. So, when she messed up on the other part of my drink I got scared because I had a mistake on a drink in the past and had a reaction due to not having soy in there. So, I talk about it so everyone knows so I won't have a problem with my food intake.

James L. said...
I see. Thanks for the response, sweetie31105.

After reading what you said, I think it's more like a guy thing for me. probably pride related.
A couple of friends who know that I have UC started to pity after telling them about what happened.

But I don't want them to pity me. Even the people who I wasn't close with started pitying me and it's just way to awkward.
I want them to treat me like a normal person and not judge me based up on what I have.

When I'm out eating with some people, some go "Oh right. You can eat these food"
It sometimes gets me aggravated.
Oh right You have a flare up. You shouldn't be working out or playing basketball. Go rest.

As a guy, these are sort of things that I want to avoid when it comes to social contact and activities.
I just tell my hallmates at my dorm that I had colitis and lost some weight. So I need to eat healthy food, etc.

It's understandable that everyone is different, and everyone deals with it differently. When people ask me about this disease, I try to sum it up to where it's a simple answer and not much detail. It is a disgusting disease, but I guess for me with my friends, I treat them like they are close to me. I agree about the "oh! you can't eat this" comment. My husband is very careful about what I eat and where we go. Sometimes it makes me feel annoyed, disappointed, and angry at having this disease. But it's life.

I started to explore the facebook UC groups, then realized it would apparently reveal which group I joined, so I backed out of that pronto!

My doc says her observation is people who think everyone should know they have UC find it usually backfires on them, regarding success in all aspects of life. That said, it's a very individual thing, and I'm not going to judge anyone who wants to tell (just give advice, sorry).

I'm with you James, my friends don't know and I would never tell an employer. Even with family who know, it drives me crazy when they think they know what I should be doing.

Most of my "friends" on FB are old friends from elementary school and some other old friends. They aren't people that I'm close to now. I choose to keep this disease private and would never post about it in FB. When I started this post I meant for it to be funny to be able to update our status based on our UC symptoms. There are days where I feel like total crap and I would love to say "I'm feeling like hell AGAIN today." It's annoying sometimes to see everyone's updates about how they're out doing things and living life when I'm not feeling well. I just thought it would be humorous to do a play by play of the day in the life of someone with UC. lol....not for real, just in theroy!

Thats such a great idea tooth fairy. Its funny I never thought about doing that. Mostly because I do that with just about everything I dont want people to know about.

Yes. I have updated my Facebook status about my UC? lol.

I just joined the group "People who live or support people with Ulcerative Colitis."

Someone posted a photo of their colon. It's absolutely gross. You have to check it out.