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  • the only one???

    well it's good to see that i'm not the only non-menopausal person with ic. at my doctor's office i sometimes feel that's the case. i was wondering how you guys deal with friends, etc when you are out and are limited by your ic? for example, i'm a college student and alcohol is a really big trigger for flares, so i try to stay away from it for the most part (which really SUCKS because i like to go to parties). i know i can still go and not drink and have fun, but it's really hard to have everyone wondering why you've suddenly stopped drinking. also, i no longer eat chocolate or drink anything caffeinated. i really don't want to tell the world about my strange bladder issue but i don't want people to think i'm a picky freak, either!! it seems like there's no easy solution here, but i'm really just sick and tired of explaining over and over what ic is and why i'm so limited etc, etc. any help? thanks a bunch!
    "Those who dream by day are cognizant of many things that escape those who only dream at night"


    21 year old Boston College student
    Communications major
    Women's Studies minor

    Diagnosed IC and PFD December 2007
    Also have: Lyme Disease, Hypoglycemia, recurring Ovarian Cysts, and high cholesterol.


  • #2
    I understand how you feel. I LOVE beer. Im a small town country girl, and beer is just something I like. Unfortunately, my mild IC prevents me from having any. Its hard. When Im around strangers, I just tell people Im on medication that I cant have alcohol with. Most people dont ask many questions passed that.
    Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

    I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

    Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

    I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!

    Comment


    • #3
      I just turned 21 in Jan and am also in college. alcohol also causes a major flare for me. My friends always asked why I didnt drink and I wasnt sure what to tell them at first. So a couple of times I was stupid and had a drink anyways and I paid for it. Its just not worth it. I finally told some of my closer friends what was going on and they understand and sometimes they wont drink eaither. You dont have to tell everyone if you dont want to. just tell them you dont want to drink. You dont owe anyone an explanation. College is already hard enough with IC. Haha I was the DD on my 21st. Have you had any problems with classes?
      [COLOR="black"]Diagnosed:January 14,2008.
      Hydro:January 14,2008.
      Currently taking:Sanctura XR, Ultram 100mg, Ultracet or Percocet as needed for pain.
      Tried: Flomax, vesicare. Six Instills weekly, cocktail of heparin, lidocaine, AB and steroid also added DMSO. Following IC diet.Urgent PC/Tibial Nerve Stimulation Interstim Trial: Nov.3, 2008 Permanent Implant: Nov. 17, 2008
      ~Tara~

      Interstim Implant removed Nov. 24, 2009. Currently on Elmiron and doing PT every 5 months

      Comment


      • #4
        hey!! yea sometimes i try to drink, and it just makes me miserable later. i'm going to the cape with a bunch of friends and my boyfriend today for the fourth of july, and i know it's going to be a problem. *sigh* my boyfriend knows and understands but it's still really rough. actually, my problems in the classroom are what made me finally seek help in the first place. i was getting up to go at least once during every class, and uti's often made it impossible for me to even go. i never connected my bladder issues with the pain i was having (i thought i was having cysts - that's what the doctors told me) but the nurse at my school suggested i go see a specialist. so yay now here we are. i just started getting treatment over the summer, so it will be interesting to see how next year goes...
        "Those who dream by day are cognizant of many things that escape those who only dream at night"


        21 year old Boston College student
        Communications major
        Women's Studies minor

        Diagnosed IC and PFD December 2007
        Also have: Lyme Disease, Hypoglycemia, recurring Ovarian Cysts, and high cholesterol.

        Comment


        • #5
          i know how you feel. i am usually the youngest person at my urologists office. i had kept my ic a secret from people for awhile and would just say i was allergic to caffine and "didnt feel like drinking" finally one day i just explained why i ate different and was too tired to go out. everyone has been super supportive and i usually says ic is a painful bladder disease that is considered autoimmune. most people dont ask too many questions beyond that. i have found its easier to be honest then to keep thinking up excuses. i found once i accepted ic, it was easier for me to discuss it w/ others. good luck.
          Jenn


          IC, endometriosis, vulvodynia, PFD, kidney stones, migraines, chronic uti's, ovarian cysts, seizures.

          Meds:
          Elmiron 300mg a day
          a day)
          Singulair 10mg a day
          Seasonale

          Prevacid OTC
          Xanax-helps pain at times.

          too many pills for my age!!!







          "If it wasn't this it would be something else"

          "There's a happiness to be gained from being able to accept that there are some things that cannot be changed."






          Comment


          • #6
            I'm not that young at age 33 but the youngest IC patient that any of my drs have. I am also currently pregnant and my drs do not have much experience with pregnant IC patients because all their IC patients are menopausal. I also get tired of explaining to people what my bladder issue is. No matter how many times I explain it people still think it's a bladder infection. . my boss even thought I was talking about my gallbladder for a few months . . ha ha.
            The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
            First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
            Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
            Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
            Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
            BABY GIRL 10/28/08 *** BABY BOY 7/8/11

            Comment


            • #7
              Our cases sound similar. I always had to pee more than usual but I never thought is was abnormal. Everything got worse my first year in college. My first problem was pain and my gyn kept saying it was cysts on my ovaries. I do have pcos but during the ultrasound all they found were small ones. They gave me BC and said that would fix things but it didnt. The pain got worse and my frequency got out of control. I started peeing every 30 minutes and sometimes every 5. Thats when I got referred to a uro. Its been a long road but I finally got a diagnosis. Its good that you started treatments this summer. Im also doing a long one this summer. Classes can be really difficult to sit through but if ya gotta go ya gotta go. Last semester when I found out it was IC I was having a really hard time managing doctor appoitments and classes so I dropped a class leaving some room open. Then when I was scheduling and had to meet with my advisor I told her that I had to have a day open for doctor appoitmnts and I told her why. She looked at me like I was crazy but ohhhh well. Just remember its your health and dont over load yourself with classes. Feel free to PM me if you ever want to talk or I have AIM. I hope your treatments are going well
              [COLOR="black"]Diagnosed:January 14,2008.
              Hydro:January 14,2008.
              Currently taking:Sanctura XR, Ultram 100mg, Ultracet or Percocet as needed for pain.
              Tried: Flomax, vesicare. Six Instills weekly, cocktail of heparin, lidocaine, AB and steroid also added DMSO. Following IC diet.Urgent PC/Tibial Nerve Stimulation Interstim Trial: Nov.3, 2008 Permanent Implant: Nov. 17, 2008
              ~Tara~

              Interstim Implant removed Nov. 24, 2009. Currently on Elmiron and doing PT every 5 months

              Comment


              • #8
                I'm super anal about classes so I will sit the entire hour and a half just so I don't miss a second. I try and go before and in between classes, and I don't drink anything before school. It's hard on me, but I'm trying to live as if nothing is wrong with me.

                In regards to drinking, I recently tried a bottle of water and 4 prelief before any alcohol and it helps a lot.
                Without it, holy cow, it hurts so bad the next morning!
                I always thought that pain during urination was part of having a hang over.
                I would ask people, do you get hung over from one beer? Does it hurt when you pee?
                People would look at me like I was crazy!
                Now when I think about all the stuff I used to assume was normal, I look at myself kinda crazy!

                How was the cape?
                (I'm a CA girl, to be honest, I have no idea what the cape is)

                Comment


                • #9
                  You know whats funny...i used to think that it hurt and burned everyone when they peed. i thought it was perfectly normal. its always hurt me since i was a little kid...
                  Jenn


                  IC, endometriosis, vulvodynia, PFD, kidney stones, migraines, chronic uti's, ovarian cysts, seizures.

                  Meds:
                  Elmiron 300mg a day
                  a day)
                  Singulair 10mg a day
                  Seasonale

                  Prevacid OTC
                  Xanax-helps pain at times.

                  too many pills for my age!!!







                  "If it wasn't this it would be something else"

                  "There's a happiness to be gained from being able to accept that there are some things that cannot be changed."






                  Comment


                  • #10
                    well my boyfriend just came and visited for a week (he's working in the cape for the summer) and it was pure misery. i love him to death and we have such a nice time together, but the underlying tension is there and i could tell the whole time he was trying to be on his guard. we are really young, and i know i can't expect him to just deal with this, especially at this age - i don't want him to have to he's my everything, though, and i feel like without someone as understanding as him i'll just be alone forever.
                    "Those who dream by day are cognizant of many things that escape those who only dream at night"


                    21 year old Boston College student
                    Communications major
                    Women's Studies minor

                    Diagnosed IC and PFD December 2007
                    Also have: Lyme Disease, Hypoglycemia, recurring Ovarian Cysts, and high cholesterol.

                    Comment


                    • #11
                      I'm 31 one and I'm like all of you, I'm very young to have IC!! My symptoms started 10 yrs ago. Diagnosised in 2004 but only bc I was urinating 50 times a day! I never had the pain of IC until March of this year, honestly! I might have a little pain before my period, but pop a AZO and I was good to go!! But, since March it has been HELL!! Nothing has wased my pain!! It has seemed like an endless process! Monday I'm have another cysto/hydro to see if maybe I have developed Hunners Ulcers, Lord I hoped not!!!
                      But, Back to the alcohol thing!! I have not touched alcohol in 4 yrs!! It alwayed seemed i stood in line with all the drunks or if I was home i spent my time peeing!! So, I never got to enjoy the party!! Back then I didn't have the pain so there was no after effects. Well, last weekend my friends had a keg party for his brother bc he's going off to med school this fall and I have been in so much pain the past few months I said what the hell!! Well, I didn't pee like I usuallly do and my bladder didn't hurt for 2 1/2 days!! It was a miracle. I tried it again this past weekend to see if it was a fluck! Same thing, my bladder didn't hurt for 2 1/2 days and I was able to have sex with my hubby that night without pain! Usually, sex is so painful the thought of it makes me cringe, but I had fun!! I talked to my therapist and she said go for it! just be careful with a view of my med's!!
                      About a month ago there was a thread about alcohol and a few women tried to convience me that beer and red wine wouldn't hurt the bladder!! I refused to believe them!! I guess I had to get in enough pain to say what the heck! It helped me, but I know it may not help everyone! And, yes all of us need to be careful drinking!! But, if it helps during a bad flare or it helps relax you to have sex go for it!! Just do it moderation!!

                      Comment


                      • #12
                        Hi! I would say something like "I've been diagnosed with an autoimmune disorder so I can't drink" to your friends. Your health should be more important than what people think.

                        Also, I don't know how close you are with your boyfriend, but if you are in a serious relationship, I would get him the "Please understand" book from this site. I focuses on family and intimacy issues, so it will clarify a lot for him if you live together. I got the book for my husband even though he claimed that he understood the condition and was already being supportive (and he was). After reading the book, he was able to emphatize more with what I was feeling.

                        By the way, I have a story about how my IC bladder reacted to alcohol and saved our lives That was when I had frequency but was not yet diagnosed and didn't even know what IC was. My husband and I went to Bangkok to celebrate the New Year 2007. I had 2 martinis at the hotel bar and then we went to the main plaza where all the activities were taking place. Twenty minutes before midnight, I had an IC flare and really had to pee, so I insisted that we go back to the hotel and watch the fireworks on TV at the hotel bar. We did, and a couple of minutes after midnight some terrorists set off several bombs on that plaza, one of which was close to where we had been walking by. My IC bladder just may have saved my life! Anyway, now I don't drink but we don't have an active social life so it's not a problem. I hope you'll be able to find a good excuse for your friends! Remember that if someone has a problem with your condition, it's their problem, not yours.
                        Let's help move IC research along! Do you flare when taking a prescription or non-prescription drug that may be unrelated to IC? Suspect a link between how your IC started and the medications you were taking at the time? The FDA wants to know about this so that they can investigate any possible links and make medications safer. Report IC to the FDA as a possible side effect: https://www.accessdata.fda.gov/scrip...tch-online.htm


                        I am on the path toward remission!
                        Had symptoms since 11/2007
                        Diagnosed with Ulcerative IC on 8/6/2008 (age 25) via an office cytoscopy

                        My symptoms:
                        Urgency, Discomfort, Nocturia, 2 Hunner's ulcers visible without bladder distention, Occasional pinching pain that goes away quickly

                        My flare triggers:
                        Fermented foods and stress

                        IC supplements and lifestyle adjustments:
                        IC diet w/addl restrictions (high protein, low yeast/no fruit, low histamine)
                        Oil pulling with coconut oil
                        Candida cleanse with a Solaray product and diet
                        Cystoprotek
                        Sea buckthorn oil - 1 tbsp daily - this product helps heal wounds faster
                        Magnesium - helps the body produce hyaluronic acid, which is responsible for connective tissue health
                        Flax seed oil
                        Organic Manuka Honey - 2 tsp daily - heals wounds and has anti-bacterial properties
                        Melatonin as a sleep aid for evening flares
                        Stress management & positive affirmations
                        Bladder training
                        Cardio workouts 2-4x weekly
                        Food, exercise, medication and sleep pattern diary to identify flare triggers

                        Other things I tried:
                        Elmiron - took it for a month without side effects but decided to try natural treatments first
                        Elavil - drowsiness & heart palpitations
                        Urine pH testing - mine was in the range of 5.5 to 6.25; did not see any correlation w/flares
                        IgG Allergy testing by Immuno Labs - found food sensitivities

                        On my to-do list:
                        Get tested for vitamin/mineral defficiencies
                        Try passionflower extract for stress management

                        Comment

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