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  • Is Facebook a good place for IC support?

    I confess that I haven't used this journal as much as I should have in the past year mostly because I was exploring Facebook and how we could use it for IC. It was a good year. We have several groups on Facebook and an official Interstitial Cystitis Network page. I've got about 1400 IC friends over there but, to be totally honest, I don't like Facebook very much. It's time consuming. But, more importantly, it's a bad platform for health information.

    Facebook has significant problems with quality of information and the lack of moderation. For example, I once saw a patient ask an IC patient if she should have heart surgery. Yikes! Still other patients don't cruise the web, they don't read books. They just read Facebook chatter and think that that is good information. Unfortunately, it's often not.

    A good example is something that happened on one IC group where one patient reported that "end stage IC" was a fatal condition... terrifying patients that IC could kill them. Absolutely NOT TRUE. Yes, there can be a very rare case of an "end stage bladder" but even that could be treated with surgery.

    One of our own moderators read a posting on Facebook from a patient who was have serious suicidal thoughts. Unfortunately, there was NOONE moderating that page and some else unbelievably posted personal information about this patient, completely violating their privacy. It took 24 hours to find someone who could do a welfare check on this patient. Facebook has few effective controls that can reach out to teens or anyone else struggling with serious depression.

    But, what makes Facebook scary at times are the "trolls" people who go on power trips by hurting or putting down others. We've certainly had this happen a few times on the ICN over the years but the advantage we have is that we can shut them down immediately. Facebook, on the otherhand, has few controls. This isn't about controlling content... it's about protecting people from others who, in many cases, may be mentally ill.

    So, for the past few months, we've been having big debates about how to use Facebook for support and, honestly, many credible groups, businesses, pharma are backing away from Facebook and, if they use it, are only doing so for basic announcements. I refer to Facebook as the "wild wild west" of the internet and it worries me.

    What do you think??? Are you using Facebook?? Have you ever been upset by things that you've read or experienced on Facebook. I would love to hear your opinions and experiences, both good and bad. Make no mistake... I love being able to meet so many IC'ers over there. They are great but the format just seems flawed.

    Jill
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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  • #2
    I think Facebook is a very good place to carry on daily chatter --- like talking about a good show or a good book --- or even recommending restaurants. As a place to get valid information about any medical condition, or to give and receive support, I would have to give it a "D minus."

    I rarely go there any more.


    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      I use facebook mainly to keep up with international friends or local friends I don't get to see often. That's it. I don't do much IC stuff on there because it just isn't as private as here with my screen name.
      Kadi

      -------------------------------------------------------------
      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      ------------------------------------------------------


      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
      Source - Pinterest
      "


      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!

      Comment


      • #4
        I use FB to keep up with friends but certainly not for medical advice. I don't even take medical advice from my friends without checking with my Dr first.
        Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
        Lexapro-20 mg
        Aciphex
        Ambien-as needed
        Percocet-7.5 up to 3 per day as needed
        Valium-10 mg x2 per day
        Phenergan-1 at night
        Prelief w/everything
        Now recovering from acute pancreatitis

        Currents treatments that help somewhat:
        Heating pad
        Hot baths
        Ice
        Being VERY still while lying down with legs elevated

        Comment


        • #5
          I hate to admit this and don't think I'm a bad parent, but I use FB to see what my 16 year old daughter and her friends are up to. I made her friend me, I look at her pics and wall stuff. These kids say some really nasty stuff on FB! I would never talk about personal stuff like we do here on FB because too many people can see it and don't really understand what we are going thru.

          Suzanne

          Comment


          • #6
            Like Suzanne, I use Facebook to keep up with what my daughter is up to. Though my daughter is 29.

            Even though I know the ICN has a presence on Facebook I rarely have posted there. I suppose I consider my health issues a private matter only to be shared with those of my choosing. Facebook is way too public. I limit my FB exchanges to topics that fall under the heading of drivel.

            Vicki
            "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

            Comment


            • #7
              Kids!!!

              LOL!! That's how I started on FB was checking on my kids, 19 and 21!!! I used to post a lot of daily funny things on my own page for my friends but since the "Flare of 2010 & 2011" there's really nothing to talk about. Nobody wants to hear about my uro appts and my pelvic floor therapy. And frankly, I don't want to tell them about it. BUT, I do still read my kids pages!!!
              Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
              Lexapro-20 mg
              Aciphex
              Ambien-as needed
              Percocet-7.5 up to 3 per day as needed
              Valium-10 mg x2 per day
              Phenergan-1 at night
              Prelief w/everything
              Now recovering from acute pancreatitis

              Currents treatments that help somewhat:
              Heating pad
              Hot baths
              Ice
              Being VERY still while lying down with legs elevated

              Comment


              • #8
                Like others, I only use facebook for superficial chatter, would never mention anything about my IC there.

                Those of you who are on there to watch your kids, I don't think most parents or people realize that you can totally customize who sees your posts. For example you can create groups of your facebook friends. I have a group of High School friends, alot of these people I barely remember and don't want them seeing my status. So my default status excludes this group and a couple others. My status posts NEVER appears on their newsfeed.
                So if your kids are very pc savvy they could easily do this. Might be better to actually have them give you their password and login and just check their profile once in awhile.
                Cindi


                Gelnique for frequency/urgency - works great
                Macrobid after sex
                Prilosec, continuous birth control pills
                synthroid .088mg, mucinex-d, restasis

                Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                Great treatment flowchart on page 19 of the pdf

                Comment


                • #9
                  Cyndi

                  I know about the privacy stuff and I'm sure my kids do too. But I still like to be a little nosy and I'm close with them so it gives us something to talk about!!
                  BTW, they are WAY more computer savvy than me, lol!!!
                  Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                  Lexapro-20 mg
                  Aciphex
                  Ambien-as needed
                  Percocet-7.5 up to 3 per day as needed
                  Valium-10 mg x2 per day
                  Phenergan-1 at night
                  Prelief w/everything
                  Now recovering from acute pancreatitis

                  Currents treatments that help somewhat:
                  Heating pad
                  Hot baths
                  Ice
                  Being VERY still while lying down with legs elevated

                  Comment


                  • #10
                    What I was trying to say, and didn't say very well, is that Facebook may be fine for social networking, but not as a place for support.
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    Have you checked the ICN Shop?
                    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                    Patient Help: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                    [3MG]

                    Anyone who says something is foolproof hasn't met a determined fool

                    Comment


                    • #11
                      I have met some great people on FB w/IC some are even local which is what i was hoping to find. I take everything w/ a grain of salt but, I also belong to a private chat group where I can ask if someone has ever had the symptoms that I have had b/c well some of our symptoms are "strange". I have often, well just about every day felt as though I'm a freak for having these strange symptoms and I can see if they have them too. But I also have the Endo Research group,the ICN, The Interstitial Cystitis Association's . We also talk about other things too. It's a way to meet people across the country. I know it can have good and bad things but I can always delete someone if i don't agree or there is a problem w/someone/something. I try to research everything, my husband often complains i type too much. Thanks to all. Have a great day

                      Comment


                      • #12
                        I highly agree with Donna on this one. I am a member of the ICN on facebook and it says so on my info. However, I never look at it. I would never share any personal information about myself on FB. It's fun to see what other friends are up to, and share some funny or interesting stories and pictures of relatives or close friends. This is the only place I feel safe and comfortable to turn to if I want to share or ask advice or even just vent. This is where I come to learn about others experiences and the latest reliable information on research, and I appreciate it very much. My uro/gyn has asked me how I know so much about IC, and I always tell him it's because of the ICN. I don't know what I would do if it did not exist. Thank you Jill, Donna and all the others that work so hard to make it what it is.

                        Dakota

                        Comment


                        • #13
                          I love my FB - but only as a social tool. :-) Being a stay-at-home (erm, or not so stay-at-home) mom, it's my link to my social world, lol. Keeping up with my friends and relatives when I normally wouldn't be able to - takes a few minutes of my time and I am up to speed with everyone. BUT - that said, I really don't like to discuss health issues on there, even though I love being a member of a couple of the groups and the ICN on FB - it just feels "off" to me for some reason - I think I've been spoiled by this place I don't worry about who sees what or if some moron is going to start trouble of any sort here. I've seen those trolls in action and it's appalling. Most just want to get you riled up and reply to them so they can keep on perpetuating their nastiness, lol.

                          So, I'll be social and chat away when I can, but for me - this is my main go-to for IC stuff! For me, I use FB as a pick-me-up with everyone, I like chipper and fun stuff - even if I am cranky and let people know, my FB friends cheer me up and I've not aired my dirty laundry, lmao!
                          Hugs,
                          Tracey
                          How do you eat an elephant? One bite at a time...

                          Harry arrived 2/23/09!



                          *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                          IC Diet Cheat Sheet:
                          http://www.ic-network.com/diet/2009icdietlist.pdf



                          Dx's:
                          IC dx'd Nov 2004
                          Lymphocytic Colitis dx'd July 2005
                          Possible IBS
                          Current IC Meds
                          Vistaril 25mg in the evening
                          Previous IC Meds taken:
                          Cystoprotek - 2 caps 2x's a day
                          Elmiron, 100mg 3x's a day
                          Ditropan, 5 mg 3x's a day
                          Others:
                          Wellbutrin 150mg 2x's a day for Anxiety/IBS
                          Pepcid 40mg a day for GERD
                          Zytrec for Nasal Allergies
                          Align Probiotic daily for IBS

                          Comment


                          • #14
                            I think that FB is a terrible platform for discussing anything private. I am one of the few people not on FB because after reading through their privacy policy, I learned that I would have none. I would never share anything there and I have asked friends not to post pictures of me on their pages. Once you post a pic, FB keeps it forever. And not just one copy of, but like 7! FB can share your information without your approval. FB is basically one huge data mining source. Sure, you aren't likely to have your identity 'ripped-off' but that doesn't mean that it isn't possible.

                            My partner and I are extremely web-savvy as it is how we make are living. We are extra careful of what we put on the internet, not because we are paranoid, but because we fully understand the risks of having our lives put out there for anyone to see.

                            We should be teaching our young people that what is done on-line stays on-line. It is incredibly hard to permanently delete information and pictures. They will live on forever in some corner of the web for most people. I find that a scary thought!

                            The IC Network is way better for support and info than FB any day.
                            Me: Canadian. 31.

                            IC symptoms: Cramping, burning, frequency. Pain!

                            Pain management: Ibuprofen. AZO. Marijuana. Prelief. The IC Diet.

                            My IC-safe, Gluten-free, Lactose-free food blog:
                            Good for Your Guts

                            Comment


                            • #15
                              I also love FB for the social aspect. Every now and then I will post a little bit about my IC but I have used it as a tool to educate some of my family and friends. My mom is on FB and she sees that some of the things I have said all these years are being confirmed by my friends.

                              I have had IC for 35 plus years now and back when I was a teenager and diagnosed not much was known about IC. I was told more often than not by my family to just not think about it. So now I have do admit I feel some validation because it has shown family and even some of my high school friends that remember I was in the bathrooms all the time that there was indeed a reason for it.

                              Support though is far better to get here on the ICN and medical information is much easier to find on here.
                              Jolene

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

                              IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

                              Information for Patients can be found here.
                              http://www.ic-network.com/patientlinks.html


                              Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




                              Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

                              "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

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