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  • #16
    Cranberry juice is a big no-no for me. Before I was diagnosed with IC I was given the same advive by my first uro. He thought I had OAB. Sometimes I had uti's somtimes I didn't. But the cranberry juice always made me feel worse. I had to change uro's before I got the correct diagnosis. Both of you gals doctors should read these boards look at this website to learn about IC!. This is another rediculous example of how this disease is misunderstood.
    TexasHoney

    Let's keep praying for a cure.
    IC Symptoms began in early 2001
    Divorced : Sept 2002 (Partly due to IC)
    Diagnosed with IC in April 2004
    Most recent injury - Rupurtured Left Achilles Tendon
    Wed Jan 28 2009
    (Ice Storm Accident)
    2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
    Other Injuries
    Broken Left Ankle - July 2004 ( fell off ladder)
    Broken Left Ankle (Again) - May 2005 (car accident)
    Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

    CURRENT MEDS
    Elmiron, Pyridium

    Comment


    • #17
      I don't know of any ICer who can drink cranberry juice. We call it the "acid bomb" --- I definitely wouldn't touch it --- and I would let that nurse know about the pain her advice caused for you.

      Donna
      Stay safe


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      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]

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      • #18
        I agree with Donna, and Jilly I'm sorry about your ankle. It must be so hard getting around and having to get up constantly for the bathroom! Feel better.

        Kari
        Kari

        I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

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        • #19
          To add to Donna's post, I'd let the DOCTOR know about the pain the nurse's advice caused you. I hate to say it, but if she is so ignorant about IC, she may be defensive & disregard what you say to her. The doctor needs to know & educate his nurse before she harms some other IC patient with bad advice.

          Reading all these posts, I've also had experiences with medical people who when they hear "interstitial cystitis", if they don't know what it is, they figure we're using some weird word along with "cystitis" and figure we're talking about infection. I'd ask some serious clarifying questions if someone told me to drink cranberry or vit.C to make sure we really are talking about the same thing.

          Yikes!
          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!

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          • #20
            Thanks everyone!

            Oh make no mistake I will let my nurse and DR! know about her advice to me.

            I am still in such agony and hurting so bad am ready to scream. Hobbling along so often to the bathroom with my walker because of this darn broken ankle and cast is making it more stressful for me. I don't need ANY more stress. I have enough for a few dozen people at this point I believe Trying to keep positive but it's so hard when you keep getting knocked down at every turn. My IC really was doing really well until I broke my ankle. It took about 1 1/2 weeks before the IC pain started coming back and now it's full blown.

            I just don't understand how that nurse could give me such stupid and hurtful advice KNOWING full well I have IC. She has always been really nice to me and seemed to sympathize with me. Now I have my doubts. Wait until she see's me hobbling in with my cast and walker for my appt. this Monday! I will do my best to keep my anger in check. Thank god my husband will be with me as he is my driver until the cast comes off. He knows me and will keep me from screaming at the nurse but he will defend me and help me get my point across should I need him to.

            Thanks for listening all I am just overwhelmed right now

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            • #21
              PS. Kadi I have had several people say the same thing to me, like oh it's just an infection and I try and explain that it is not.

              My daughter works at a pharmacy and she told one of the pharmacists what I had. You know what they told my daughter? Oh your mom just has a urinary tract infection!


              They are NOT dr.s and that bugged me to no end! Ok done venting

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              • #22
                as I posted before my mouth dropped. Then I was thinking, everytime I go to get a hydro done at the Uro Surgery Center, when I wake up they are like you want a coke? So even though they are urology nurses I think they really do not know about this disease. As I posted on another post, my urologist told me she like talking with me because I am so knowledgeable (from this website) that she thinks I would be a great educator. I am going to speak with her about maybe meeting with their staff at an office meeting and talking with the nurses about IC from the viewpoint of a patient. If she agrees I will post so everyone can email me with their own experiences from nurses or surgery centers and I can put them together in a handout for them. I really think it is a good idea. I know that there is not enough education in nursing school for them to be that knowledgeable and if their URO doesn't see that many IC patients they really don't know how to handle our phone calls. My uro's last nurse was great, she knew when I called and said I needed pain meds, she was right on it, had them called in within the hour, unfortunately she left to go teach and the new nurse is not so great. ugh.

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                • #23
                  Littlemyrn,
                  I think that's a great idea you have. I agree the nurses and and staff are just not educated about IC, as are alot of doctors. I had to go to the ER recently because my pain was so bad, and when I told the doctor I had IC, he made a face and said, Oh, you just need some antibiotics and you'll be fine! I walked away so frustrated and feeling like no one understands. I wish we all could educate the medical staff on this disease. I moved to a new State and just recently went to a new MD/GYN and told her I had IC. She didn't know what it was and had never treated a patient with it. So when I went back I printed out some information I got from this sight and gave it to her and asked her to read it. She seemed really nice and willing to learn more about it, I hope so. Well good luck with your educating the staff, I think that's really great.

                  Kari
                  Kari

                  I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                  Comment


                  • #24
                    Wow my uro never told me these things for IC. I got change your diet to the IC diet, and take Cystoprotek, Elavil, and Atarax, and a few other things, but never that. Blueberries can still flare me so I have to be careful about those too.

                    Comment


                    • #25
                      Before I was diagnosed with IC I did have quite a few bladder infections and I noticed Cranberry juice didn't seem to help and most of the time made me my burning worse.

                      Jilly, I hope you ankle and your bladder get better soon
                      Natalie

                      I am multi-diseased with : MS, IC, IBS, and PDF

                      Diagnosed with IC - May 2006 IC symptoms : burning and frequency

                      Diagnosed with MS - March 2004 MS symptoms numbness in arms and legs, muscle weakness, major lack of bladder control and increasing bowel control problems. I wear Depend underwear 24/7.

                      Diagnosed with IBS - Sept 23, 2008

                      Diagnosed with PFD - Oct 1, 2008

                      Divorced Oct. 2009

                      IC Meds

                      Elmiron
                      Hydroxyzine
                      Elavil
                      Lortab for pain
                      Uristat

                      MS Meds:

                      Betaseron
                      Novantrone
                      Corticosteroids
                      Skelaxin ( muscle relaxer)
                      Neurototin for pain


                      "For God so loved the world, that he gave his only begotten son, that whosoever believeth in him shall not perish, but have everlasting life." -John 3:16

                      The Serenity Prayer:
                      God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

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                      • #26
                        I can understand about UROs not knowing much.. I ask my URO about rescue instills and he had never done one and was not knowledgeable about them either, my GYN knows lots more about IC than my URO so she is the one who basically treats me like with the Cymbalta and Topamax..URO didnt even know what they were for..All he knows is how to Dg IC and to put you on Elmiron and muscle relaxers or spasm medications..And you know thats sad..I think I am going to do a print out on IC and leave it with his nurses and staff and give him a copy to..lol Think hes from the old school of IC and not kept up to date with any progress of medications that has helped..
                        Hugs
                        Ronda

                        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                        Link to Patient Handbook:
                        http://www.ic-network.com/handbook/

                        Diet Reference Sheet:
                        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                        Meds I have Tried:
                        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                        Lexapro< Bad reaction to this med!
                        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                        Dx With IC in Nov 2006 with Hydro/Cysto
                        Hydro/Cysto Caused Bladder to Rupture.

                        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                        ICN 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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                        • #27
                          just to say that to try and increase emptying the bladder i was given a tip to lean back on the seat as apparently this helps to completely void...worked for me with normal cystitis but since i dont have the frequency i dont know whether this is useful for ic? good luck!

                          Comment


                          • #28
                            I have been reading recently about IC and found that if the vitamin c is coated a special way, it is fine. I do not know much about it, but am hopeful because I feel that I do not get the vitamins I need now. On the other hand, who wants to take the chance of hurting yourself?

                            Everyone pretty much said it, cranberry juice hurts.
                            Has your doctor read this site? Or read about the dietary guidelines on here?
                            Maybe that would help?
                            I don't want to die, I just want to go to the bathroom.


                            www.myspace.com/rockandrollclub


                            I am 23 and have had IC for about 3 years now.
                            I have also had rheumatoid arthritis for about 21 years, I like to think I am used to pain.

                            I am interested in hearing from people with similar circumstances as I am in, like having IC and RA, being in college, etc. I feel it helps.

                            Comment


                            • #29
                              I think Ester C is suppose to be ok.

                              Kari
                              Kari

                              I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                              Comment


                              • #30
                                Cranberry juice, continued

                                I've been looking at your replies, thanks for all your information and support. It's So true that each person is different. So sorry Jilly, to hear about your foot. I was scheduled to have Bunion surgery on May 30th, but I had to put it off indefinitely because of my bladder stuff. I can't imagine foot pain and bladder pain!
                                When I went to my Uro last week and she told me about the cranberry juice and Vitamin C, I gasped and said "No Way!" She said to just try it and if I couldn't tolerate the cranberry and Vitamin C, to make sure I ate 1/2 cup of blueberries 3 times a day.
                                Well, I tried the cranberry for 3 days, then switched to just the blueberries for 2 days, and I think I'm better with the cranberry then the blueberry. I've been keeping a voiding journal(on Dr. recommendation) and I'm peeing less with cranberry juice then blueberries. I still feel like I have to go a lot, and I get mild pain but it doesn't seem to matter what I drink. I would think that if I couldn't tolerate drinking cranberry juice 3 times a day, I'd be in agony, wouldn't I?
                                Oh yeah, I'm also using Urelle twice a day. Yesterday ( a day without cranberry juice), I was in pain all afternoon until I realized I hadn't taken a Urelle. Within a few hours of the Urelle, I felt much better. This morning I had a little pain ( a day with cranberry juice) and I took a Urelle and I'm feeling better again. Can the Urelle totally numb my bladder?
                                I haven't tried the Vitamin C yet, but if I continue to do alright with the cranberry juice, I'll try it too.
                                Maybe this means I don't have IC, I'm still so confused about everything. My family is supportive, but they don't actually understand what I'm going through, so in the meantime, all of you and this website have been a godsend to me, to be able to share and realize people are going through what I am, is wonderful.

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