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  • ICN posting guidelines

    We get so many new faces every day and coming to a new site can be very confusing. I know when I go to a new message board or new site it takes me quite awhile to find my way around - and sometimes even to find information that is second nature to people who have been there a long time.

    It's easy for us "veterans" to forget that information we access with ease is hard to find for someone new to the site --- and especially for someone new to surfing the web and figuring out how to use message boards.

    ihurttoo had a great idea in May to re-post icnmgrjill's list of guidelines for the ICN boards and I thought I'd steal the idea and do it once again for anyone who is new:

    We expect our users to conduct themselves as they would in any support group..with courtesy, kindness, and respect for each other. We do not appreciate posts that promote conflict, that include personal attacks, or that are resentful of others postings. We expect our users to debate the message not the moral character of those involved. Ultimately, when someone leaves our boards, we want them to feel encouraged by the experiance, NOT discouraged.

    WHAT'S NOT ACCEPTABLE

    1) Swearing or Profanity

    2) Personal Attacks

    3) Mentioning any doctor negatively...(lawsuit city here!!!)

    4) Posts that encourage suicide. (Yes, that's happened once or twice!)

    5) Posts that attempt to provide medical advice.

    6) Posts that solicit for products without permisson from Donna or myself.

    7) Posts that insult other users on the basis of race, creed, religion, etc.

    8) Posts that are insensitve to other cultures.

    9) Posts that are insensitive to 9/11.

    10) Posts that attack the ICN or any ICN staff, member, or volunteer. If anyone has a beef about the ICN, those should be e-mailed directly to me.

    WHAT'S BORDERLINE AND SUBJECT TO A CASE BY CASE REVIEW:

    1) Posts that are consistantly negative, disturbing, scary or appear to have other serious problems. We may instruct that user to use other boards that can help them with their problem, such as web sites that offer family counseling, suicide support, depresson support, or mental illness support. We may also instruct that user to step away from the ICN for a period of time until they resolve some of those issues.

    2) Posts that are filled with anger. Users who are always "angry" draw away from the support and encouragment we hope to offer. We are not here to serve as the personal anger management tool of our users. If someone is having a bad day, we want them to NOT visit the ICN first! They need to talk with friends, write in their journals, or talk privately by e-mail and calm down before posting on out site.

    3) Posters who have no respect for others. If you post on the ICN in our "public" forums......you must expect comment!!! If it is negative, you should NOT come back and blast those who replied. By posting anything on the boards, you invite comments, both pro and con. If you do not want comments, DON"T POST!!!

    Hope this helps. We've run message boards for many years now. We've seen consistantly that some posters fall into the above traps.....in particular, in respect to personal attacks and anger. We sincerely understand that IC can bring out the worst in all of us at times. But like any support group, we expect the overall tone of posts to be encouraging, uplifting, and hopeful.....because that is how we want to end the day ourselves. If you have any doubt about what you want to post, save it for a day and reread it before posting it on the boards.

    Lastly, we reserve the right to remove anything that we feel crosses the line. That's reality. If you ever have any questions about a posting, you are welcome to contact me personally, and I will be happy to explain the circumstances, and to provide some type of advice, resolution, or guidance. -Jill O.
    Last edited by icnmgrjill; 09-18-2006, 09:08 PM. Reason: just fixing typos = how did I make so many!! Sheesh!
    Kim

    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

  • #2
    Thanks Kim.....it is always important to remind us all!!!!!!!!
    Faith, Hope, and Love,
    Katrina


    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

    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.
    or find me on facebook http://www.facebook.com/kat671?ref=profile
    Be the Miracle! & Pay it Forward!

    [email protected] please contact me...I am here to help!

    Comment


    • #3
      Thanks for reposting the rules I'm sure this should be helpful to everyone.

      Rhonda
      Medicine taken daily or as needed:
      1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
      2. MS.Cotin 100mg 3x daily
      3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
      4. Fentanyl 100 mg Change every 48hrs.
      5. Gentamicin 80mg install after each rescue treatment
      5 Leviquin 500mg self start as needed.
      6. Klonopin 1 or 2 daily as needed.
      7. Prosed/DS as 1 every 6hrs as needed.





      I have IC, but IC doesn't have me anymore!

      Comment


      • #4
        Kim, thanks for posting. I for one, need the reminder.
        Was diagnosed with IC in 1993 after extensive endometriosis and total hysterectomy.
        MEDS: Attarax, Zantac, Zanaflex, Oxycontin, Lortab, Urimax and daily instillations of Lidocaine, sodium bicarbinate and heparin (lifesavers)
        Have used Elmiron & Elavil w/o any improvement

        Now have a possible dx of fibromyalgia. Working on confirming that or hopefully ruling it out

        Comment


        • #5
          Kim thank you. The other day I wanted to give out a particular website address, not for sure if I could or not, so I ask Donna about it. She said "no" it was not allow. She did not get mad about me asking if I could or not. And because of it, I did not do something that was not allow. What I am saying, if you don't know, ask. I know sometimes we don't know the rules or maybe forgot it and they take care of it, but they really need to do this in order for this board to run properly. They are doing it for us, so we can talk and help each other.

          Trishann

          Comment


          • #6
            Elmiron efficacy

            I was dignosed with IC in February of this year. I was given Elmiron 200 mg twice a day. I have a new urologist because my other one was too far away and I felt he was not proactive enough and didn't understand the pain involved in IC.
            When I told my new urologist that the Elmiron was not working, he said he was not surprised. He stated the original clinical trial only had a 30% success rate. Most clinical trials must have an 80% success rate before approval of a medication by the FDA. And that people with IC were so desperate, the FDA approved Elmiron even though the success rate was low.

            I told him I had been reading more and more online that Elmiron is not as effective as they thought and that it is probably less than 30%. He agreed.

            Has anyone else heard that as well?

            Comment


            • #7
              I have not heard that. Interesting. Elmiron did not help me at ALL
              Was diagnosed with IC in 1993 after extensive endometriosis and total hysterectomy.
              MEDS: Attarax, Zantac, Zanaflex, Oxycontin, Lortab, Urimax and daily instillations of Lidocaine, sodium bicarbinate and heparin (lifesavers)
              Have used Elmiron & Elavil w/o any improvement

              Now have a possible dx of fibromyalgia. Working on confirming that or hopefully ruling it out

              Comment


              • #8
                I have heard the same thing from my urologist and to be honest I don't know if it works or not. My problem is I've been on it for 8 years, and I'm afraid to stop taking it. I do know that it makes no difference in the shape of my bladder which according to my uro, looks like hamburger, with all the hunners ulcers. I'm very fortunate because it is covered under my medical here in Canada. I'm going to be seeing him next week, and will be asking him if I should continue taking it. And the Elavil - I had a terrible reaction to it to the point it did the opposite that it should have - it made me suicidal. That was many, many years ago, and I'm glad it's behind me.
                Weezer
                British Columbia
                Canada

                Comment


                • #9
                  Hi Kim..I'm new to the message boards and learning protocol and the different words such as Thread, Post, Links, etc. I'm so thankful that it's here and I've read so many helpful things.

                  I was diagnosed with IC Nov 05. It seems like my history with the disease is very similar to everyone else on this site. Several different Dr's, tests, suggestions, many different meds. My pain is most days, even with IC Diet and meds. I've recently ordered Algonot+ and am experiencing much relief. I understand I'll need to take this for 3 to 4 months to see if it works. Of course like everyone else, I'll try anything.

                  I've been looking for a post or thread that would tell me how long after I've eaten something would I experience pain if it wasn't something that I should have. I asked my primary Dr and he said in 24 hrs. That seems like a long time as several meals could go by without knowing which food caused the pain. I'm keeping a better log on food since I started taking Algonot+ to see if I can narrow it down.

                  Thanks for your response...

                  Comment


                  • #10
                    Hi Judith! Have you checked out the Diet and IC board? The time it takes for food etc to affect your bladder unfortunately varies amongst all of us. For me it was usually about an hour or so after I'd eaten or drank the offender. Some it can affect seeming immediately or up to 3 days after it was eaten.

                    Definitely keep a food/voiding/pain diary, that was one of the MOST useful tools that I could have ever used. I logged everything in - foods: when and what I ate; reactions: if I started to feel different, I logged what changed and what time; Meds - what and when I took them, if it was an analgesic I noted the time I started to feel some relief etc; voiding: I logged every trip to the bathroom and rated the pain on the pain scale here on the site in the handbook; I logged if hubby and I had sex that day; where I was in my cycle as for me ovulation and right before my period can be annoying times; how I was feeling stressor-wise, since stress is a potentially huge bladder irritant - you name it, it was written in my log, lol.

                    What I did was basically an "elimination diet", I ate strictly out of the "Usually Ok" column, for about 3-4 weeks or until I felt my bladder starting to calm down. Then, I would add in a new item about every 3 days from the "Maybe Ok" list. If had no increase in symptoms, it was a keeper. If I did have troubles, it went on my temporary no-no list to be retried at a later date. If a few months later I still had increase in symptoms when I ingested it, it went on the permanent no-no list. It was a sloooooooow boring and frustrating process (learned the hard way on too many new foods in one day - never knew who the troublemaker was) but definitely worth it!!! You probably will discover like I did and like most of us do, that you can eat way more things then you thought you'd be able to.

                    Hope this helps a bit and look forward to seeing you around!!

                    Hugs,
                    Tracey
                    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


                    • #11
                      Traceann gave some wonderful info. My only other suggestion would be to look in the ICN online Patient Handbook at: www.ic-network.com/handbook for the diet section.

                      If you would like to search through the entire message board and all its posts, look up towards the top of the screen for a blue bar with several choices in white - one of them says search. If you click on it and enter key words like : "diet flare" it will pull up posts related to those words.

                      You can also do a google search of the entire ICN website at:

                      http://www.ic-network.com/search.html

                      Just make sure to "check" the "box" for "icn network" so it will just search this site for info.
                      Kim

                      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

                      Comment


                      • #12
                        Hi Tracey..Thanks for the response and good info. Yes I did copy the Patient Handbook, Elimination Diets and Understanding Diet and IC. Now I just need to do what it says. :o) I've been doing the "usually ok" list for a very long time now. In July of 04 I started having kidney stones and pain in my bladder and abdomen. After 4 trips to the hospital over several months (twelve episodes) with extreme pain I began to realize that something different was going on with my bladder. As soon as the pain would start in my bladder I knew it would move up my stomach into my kidney, just like clock work. I had Dr's appts, Uro's, and MANY tests but none came back with an answer. And one beautiful day at church, a gyno nurse who I was discussing this with
                        said "sounds like you have IC", never having heard of it before, she explained it to me. I went to my Uro and asked him if that could be it. "Well, it could be but you don't have all the criteria." DAH! When I was leaving the office two nurses came up to me and told me about checking on the internet for the ICN site. That I could get more info there than anywhere else.

                        During all this time I was watching my diet and stopped all foods that had oxylate because of the stones. They kinda lap over. So I haven't had cola, chocolate, citrus, etc for 2 years now. Like most women, chocolate and diet coke were my mainstays. I didn't eat much meat and loved veggies/fruits.
                        I went from hardly drinking water to drinking 65 to 85 oz daily, to neutralize
                        acids/oxylates. Now I need to begin following the "usually ok" foods more carefully. Of course I do all the experiments with pain medications and have such intolerances to so many meds that it gets very frustrating.

                        I could go on and on but I think you get the picture as it's so much like everyone else. I feel so blessed by the IC network for addressing the needs of so many including myself.

                        Thanks so much...Still Hopeful...Judith

                        Comment


                        • #13
                          Thanks Kim, I'll do that.

                          Judith

                          Comment


                          • #14
                            Thank you Kim. These guidelines and rules seem very fair and good for a group and I appreciate the reminders you have listed. I just joined a few weeks ago, and it helps me to read what is acceptable and what is not. Afterall, this website is here to help IC sufferers get and offer support. I was welcomed almost immediately and felt SUPPORT from the Administrators and Moderators, as well as many other members. I have had IC for a long, long time, but did not think of joining until I got a flare that reminded me of the horror and FEAR of years ago when I first got sick!
                            What a great group of people who try to help each other through the rough times and always give hope. That has been important to me.
                            Thanks to ALL~
                            Katheryn

                            Comment


                            • #15
                              Well, we're glad you found us, too.

                              (Jill actually authored the giudelines so credit goes to her. )
                              Kim

                              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

                              Comment

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