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  • Change in "guest" privileges for viewing this forum


    We've had what I believe is a serious violation of our board policies with a "guest" who was trying to stalk another member online due to a pending legal case between the two. Thus, I've decided to reduce the privileges of "guests"... now requiring that they must register and log in to view postings. This way, if someone is stalked, I have a legal e-mail address that I can provide to the authorities, if needed.

    I'm sorry for the inconvenience here but the safety of our members is the deciding factor.

    Your comments??

    Jill O.
    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.

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    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.

  • #2
    I think this is a wise decision on your part, Jill. I commend you on making it. Thank you so much for putting our safety first.

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.

    Link to the ICN Patient Handbook:

    Link to the IC Diet:

    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.


    • #3
      I think it's great! Thank you Jill!
      *IC-- Summer 2004; PFD--October 2005
      *Fibro--Fall 2000; CFS-- Fall 2000
      *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

      Total Abdominal Hysterectomy--adenomyosis--9\08

      04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


      • #4
        It's wonderful! Thank you! I've been stalked all over the net by a couple of competitors in my area and they've done their best to ruin my reputation. Thank God you care!


        • #5
          I think the change is great too. I would like to see it stay this way.


          • #6
            Thanks so much for the change Jill. We talk about some pretty private things at times. Good to know that only members can view the posts

            I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
            1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
            2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
            I have tried every oral medication as well as rescue instills and DMSO.

            I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

            Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
            Also proud mom to the best Bullmastiff on earth, Claus


            • #7
              I think this is great..
              'The will of God will never take you where the Grace of God will not protect you.'


              • #8
                How creepy but doing it this way makes sense. If they really want to be here reading then they can join. Nice protection in a way.


                • #9
                  I think we should all be careful not to reveal our identities in ways which could be regretted or hurt us in the future. Jill goes the extra mile to protect our privacy and is a kind to take this step, but we shouldn't post information in a way we wouldn't want the whole world to see it because in all truth there is no way to completely hide message board posts. Let's all remember Even employers could come to this board see pictures and information and not hire us due to our health or as in the case causing Jill to take action a member was attacked with posted information in a legal matter.

                  Most of us wouldn’t allow our children or young relatives to post their pictures, any indication of living location, or addresses on a website or message board because a sexual predator could potentially track them down. Perhaps we should be just as protective towards ourselves.

                  On the other hand, I think it is a bit sad that people can’t just come across the messages board and browse before joining. My track record has been not to join message boads where I can’t see what the postings contain because without seeing it there is no way to determine if it would be a good fit for me. As I said before, ultimately it is our responsibilty to protect our privacy.



                  • #10

                    I think this was a great move. Thank you for looking out for the saftey of all. Hugs, Amy


                    • #11
                      Hi Jill,

                      Thank you for all that you do to help our members and I think it is a great idea as we do get some weird and strange people on the boards and I do know that from lots of experiences..

                      It is kind of hard to get on the boards as well but I manage to get on but it does take awhile to get on here.
                      Jill does it have a timing when your register to take a few minutes to get on the message board as when I try to come on I see my name and I can not view any of the posting.. or is just me I been having not a good day today so I thought it was just me ..

                      Cheers Debbie
                      Thinking positive has got me through to another day!!


                      • #12
                        Thanks for keeping us safe
                        Miss Bessie

                        Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                        Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                        Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life


                        • #13
                          Thanks Jill for all of your caring and concern.

                          (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                          [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                          :angel: IC Angel Volunteer Coordinator :angel:
                          :) Contact me via PM or e-mail if you would like to help
                          I have learned all about life in 3 words: It goes on! :D--Robert Frost
                          PCOS 7/85
                          RSD 7/94 :headbang:
                          Endometriosis 9/98 :toilet:
                          Antiphospholipid antibody syndrome 9/99
                          Kidney stones--too many to count
                          Factor V Leiden mutation 10/02
                          IC 6/03 :evilsmile
                          Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                          "Spirit is an invisible force made visible in all of life"--Maya Angelou
                          "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]


                          • #14
                            Considering the level of sharing done here and the intimate detaiis often posted it sounds like a smart move.

                            Diagnosed August 2001

                            Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

                            Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                            I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


                            “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                            “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


                            • #15
                              I think it is a smart move as well. I liked the fact that the other boards ( were private; I really appreciate you doing this here as well.

                              I am one who is very open about my disease (I've even done an interview for the local paper about IC and my life with it) but there are many who need to keep their conditions private here for their own reasons, and that is okay too. We need to do all we can to provide that safety for people... it would be a shame if people were to decide not to join or to stop posting because they were afraid that someone could easily read the board.

                              *Diagnosed with severe IC in 2004
                              *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                              *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                              *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                              **I am not a medical authority nor do I offer definitive medical advice. 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.