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glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 3/7/2009 9:54 AM (GMT -6)   
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.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
LDN - 2/17/09 1.5 mg.
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/7/2009 10:09 AM (GMT -6)   
I have a FB account but I HATE FB! Just for that very reason LOL Knowing what everyone is doing - it's sort of TMI. lol I much much prefer Myspace over FB.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 3/7/2009 10:19 AM (GMT -6)   
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. wink
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade

Post Edited (Sweetie31105) : 3/7/2009 8:22:06 AM (GMT-7)


Sweetpea17
Regular Member


Date Joined Jan 2009
Total Posts : 73
   Posted 3/7/2009 11:43 AM (GMT -6)   
I just got on to facebook about a month ago. So Im still trying to figure everything out on it. I have always had myspace. But I always want to do the same thing. But I know that everyone I got on there would be like what are you talking about or something like that. Or they would be like are you ok?? I had to tell some people at work last night about my uc because it was acting funny and I didnt know if and when I was going to have to go. And the girls there were like are you ok?? Is there anything I can do?? And Im like yeah if i have to go to the bathroom I have to go right then. And I know it would be the same on fb or ms. And I would just rather not deal with anything like that.

AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 3/7/2009 12:12 PM (GMT -6)   
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!
31 yr old female currently breastfeeding
Diagnosed 2/29/08 with Mild Universal UC
I've had UC since 2000 but was in remission for most of those 8 years med free
Lialda Colazal & Asacol made symptoms worse, MUCH worse
Not taking any meds for now. May be on 6mp soon?


nucid
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 3/7/2009 12:28 PM (GMT -6)   
That is so funny, glamour girl!
Female 33 Married
diagnosed January 2009
mild pancolitis
Sulfasalazine 500mg 3X

"The Lord is my Shepherd"


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/7/2009 12:40 PM (GMT -6)   
AMK - can you send me the link to this group via email?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 3/7/2009 1:21 PM (GMT -6)   
I haven't ever said anything about it because I've been in remission since I joined it but I'm not afraid to. Its a part of my life now.
Sam(antha)
20 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
4 400mg Asacol 2x daily, 10mg Elavil, 75mg Effexor XR for GAD, ortho lo

"Life is what happens when you are busy making other plans"
John Lennon


Sweetpea17
Regular Member


Date Joined Jan 2009
Total Posts : 73
   Posted 3/7/2009 1:37 PM (GMT -6)   
how do you find links on there?? I cant figure it out and its driving me crazy.....

jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 3/7/2009 3:02 PM (GMT -6)   
I love facebook. I also belong to a UC group on there and I love it.
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium


mommypoopoo
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/7/2009 4:44 PM (GMT -6)   
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.
Mother of 9 year old with right sided and transverse UC
Diagnosed  2/25/09
Current meds: Asacol 400 mg three times a day, adult multivitamin, zinc, vit. c, folic acid, B12.


mommypoopoo
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/7/2009 4:50 PM (GMT -6)   
Oh, i thought i could private message on here. Sorry!
Mother of 9 year old with right sided and transverse UC
Diagnosed  2/25/09
Current meds: Asacol 400 mg three times a day, adult multivitamin, zinc, vit. c, folic acid, B12.


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 3/7/2009 6:25 PM (GMT -6)   
Sherry - I e-mailed you the link.

The group is called "People who live or support people with Ulcerative Colitis".
31 yr old female currently breastfeeding
Diagnosed 2/29/08 with Mild Universal UC
I've had UC since 2000 but was in remission for most of those 8 years med free
Lialda Colazal & Asacol made symptoms worse, MUCH worse
Not taking any meds for now. May be on 6mp soon?


James l
Regular Member


Date Joined Jul 2008
Total Posts : 95
   Posted 3/7/2009 7:33 PM (GMT -6)   
Ugh. I should join the group but kinda embarrassing to tell my friends that I have UC.
only 2-3 of my friends know that I have UC :(
Diagnosed with UC in Feb 2008. Lost 25lb in three weeks. Bloody hell diarrhea
Flare up in june 2008. took more antibiotics. Harder flare
Took prednisone for two months then 6mp. But I decided to get off on both.

10/08Started drinking hard liquors and once drank 15 shots in an hour.
Next day flare up.
11/08 Started anti-yeast regimen. I crapped out so much yeast. still crapping out yeast.

On: No med but zinc, cod liver oil, coral calcium, probiotics, threelac, alpha lipoic acid, chlorella, sea salt, garlic, aloe vera

2-3 times a day to the bathroom. A little bit of diarrhea(detox) then nice stool comes out. no bloating. good digestion.


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 3/7/2009 8:40 PM (GMT -6)   
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.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


James l
Regular Member


Date Joined Jul 2008
Total Posts : 95
   Posted 3/7/2009 8:52 PM (GMT -6)   
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.
JAMES - 19 Years old. 2nd year in college.
5'11. Pre-med student
Was bodybuilding for middle weight class at 175lb with 6%bf. then BOOM. UC kicked in for the first time in my life
Diagnosed with UC in Feb 2008. Lost 25lb in three weeks. Bloody hell diarrhea
Flare up in june 2008. took more antibiotics. Harder flare
Took prednisone for two months then 6mp. But I decided to get off on both.

10/08Started drinking hard liquors and once drank 15 shots in an hour.
Next day flare up.
11/08 Started anti-yeast regimen. I crapped out so much yeast. still crapping out yeast.

On: No med but zinc, cod liver oil, coral calcium, probiotics, threelac, alpha lipoic acid, chlorella, sea salt, garlic, aloe vera


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 3/7/2009 9:37 PM (GMT -6)   
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. wink
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 3/7/2009 11:19 PM (GMT -6)   
No one outside my family knows about my UC, so I definitely will not be posting updates on Facebook about it or be joining any IBD groups. Most of the people I'm "friends" with on facebook are really just acquaintances, so it's not their business about what disease I do or don't have.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/7/2009 11:25 PM (GMT -6)   
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.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/8/2009 9:49 AM (GMT -6)   
One of the main things I don't like about FB is that it displays your full name. I am not too keen on that. But I only have friends that I personally know on FB anyway so I guess it doesn't matter much.

AMK - thanks! I got the link :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 3/8/2009 10:44 AM (GMT -6)   
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!
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
LDN - 2/17/09 1.5 mg., increased to 3 mg. 3/3/09
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


tooth fairy
Regular Member


Date Joined Jan 2008
Total Posts : 98
   Posted 3/8/2009 2:31 PM (GMT -6)   
A friend of mine on FB re-named her disease "Harvey," which makes it easy for her to update her status..."Harvey needs to stop his party downstairs!", and "Harvey is making me late for work--again!" Funny to those who know her situation, but still not TMI for those who would rather not hear about the bathroom escapades of friends from elementary school!
Erica, 32
Pancolitis, diagnosed July 2006, at age 29
(Colonoscopy January 2008 showed active disease just in sigmoid and below!)
Imuran & colazol daily; Rowasa and/or canasa rectal meds as needed for maintenence
Currently pregnant-due October 2009


Sweetpea17
Regular Member


Date Joined Jan 2009
Total Posts : 73
   Posted 3/8/2009 4:43 PM (GMT -6)   
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.

glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 3/8/2009 5:17 PM (GMT -6)   
That's hilarious about Harvey! I think mine would say - Today I'm going to kill Harvey! lol.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
LDN - 2/17/09 1.5 mg., increased to 3 mg. 3/3/09
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/8/2009 6:50 PM (GMT -6)   
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.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

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