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Reminder ---posting rule

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  • #1

    Reminder ---posting rule

    I have noticed throughout the last few months that occasionally a doctor will be named in the body of a post when the patient has had an upsetting visit with this doctor. While I understand the urge to post the doctor's name to warn IC patient's who may eventually go to this doctor, we simply can't name name's here. It can become a liability for the ICN and we sure don't want to lose this great resource.

    Please use discretion when posting about unpleasant experiences with a hospital as well.

    Thanks, Sandy
    *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.
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  • #2
    Thanks for bringing this up Sandy. I never post my dr's name but I believe I have seen some. Good point to bring up.
    Christine



    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

    Comment

    • #3
      I think it is ok to post our doctor if we love them to death for helping us so much.
      'The will of God will never take you where the Grace of God will not protect you.'

      Comment

      • #4
        Yes, positive remarks are good, as far as I know. It's just not ok to say that "Dr So and So treated me badly and I really can't stand him/her! Don't go see this doctor." Imagine the legalities of that if a doctor caught wind of it.
        *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.

        Comment

        • #5
          Thank you for the reminder, Sandy. And it is okay to post your doctor's name if the comment is good. We just can't post a negative remark naming any specific person.

          Warm hugs,
          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

          • #6
            I've not posted the names of the doctors gyn/urolg specialist who are old and mean and in the business so long that they know everything about you on one visit, then tell you its in your head and come back when your quality of life gets better. The White Knight Symdrome. I think it's what it's called.

            I will also mention Dr. names that are positive Dr. P at Stanford in Palo Alto. Is this ok.
            Last edited by ICNDonna; 06-05-2007, 05:58 AM. Reason: Negative comment removed.

            Comment

            • #7
              Originally posted by CCB View Post
              I've not posted the names of the doctors gyn/urolg specialist who are old and mean and in the business so long that they know everything about you on one visit, then tell you its in your head and come back when your quality of life gets better. The White Knight Symdrome. I think it's what it's called.

              I will also mention Dr. names that are positive Dr. P at Stanford in Palo Alto. Is this ok.
              If you want to warn someone about a paticular doctor specifically, you can email people off the boards.

              There have been many doctors I wanted to warn people about in my area and I do it off the board because this is such a public forum, we don't know who's out there reading what we write. Also, there is a site called rate this doctor or something like that. You can find it by using google. It's a great way to get your opinion of a doctor off your chest, and it's great for patients who want to see other's opinions.
              *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.

              Comment

              • #8
                I know that for the most part people just get swept up in the moment and fingers are flying across the computer---if I see someones posted a name I've just sent them a quick pm and pointed it out so they could correct it. I've done this a couple times and both times the person didn't get mad. I would appreciate it if someone did that for me so I don't get in trouble or cause trouble for the ICN.

                Comment

                • #9
                  Originally posted by **Angie** View Post
                  I know that for the most part people just get swept up in the moment and fingers are flying across the computer---if I see someones posted a name I've just sent them a quick pm and pointed it out so they could correct it. I've done this a couple times and both times the person didn't get mad. I would appreciate it if someone did that for me so I don't get in trouble or cause trouble for the ICN.
                  I don't think anyone would get in "trouble" so much as it could definately cause problems for the ICN. It's very nice of you to send pm's when you see that someone has mentioned a doctor's name like that. I appreciate the help.
                  *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.

                  Comment

                  • #10
                    I also appreciate help. It takes all of us to keep the IC Network a safe haven for everyone.

                    Hugs,
                    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

                    • #11
                      Just to give you an idea of a real incident that occurred here on the ICN last year. Someone created an identity with a doctors name in the midwest. He was not a urologist nor involved in the IC community at all. Then that user used our boards to confess that "he" was a child molester.

                      Of course, we caught it very quickly and I took action immediately. We did an IP trace, email trace and discovered that it was a fake email address registered on a free service.

                      I then had the unenviable task of contacting the doctor and asking "are you being stalked?" Much to my amazement, he said yes. I then talked with the attorneys involved, provided all of the evidence that I could from my end with the hope that this internet based stalker would be put to justice.

                      Why they chose the ICN?? No reason.. this person was just going from medical board to medical board posting horrendous allegations.

                      So... nuff said.

                      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/

                      Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

                      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.






                      Comment

                      • #12
                        That is a reminder you can't always believe what you read on the internet. But I have to say I feel more confident on this site. Thanks for trying your best to make this a safe place.

                        Take care, Trishann

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                        • #13
                          Is it ok to ask..."Has anyone used Dr. So and So?" as long as the replies are emailed? (Or positive!)

                          Thanks!

                          Missy

                          Comment

                          • #14
                            Originally posted by missychan View Post
                            Is it ok to ask..."Has anyone used Dr. So and So?" as long as the replies are emailed? (Or positive!)

                            Thanks!

                            Missy
                            A lot of people here have done that and as long as there are no negative comments in the public forum then it should be fine.
                            *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.

                            Comment

                            • #15
                              Thanks for clarifying that, Sandy. I was wondering myself.

                              Comment

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