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Thread: Coffee

  1. #1
    ICN Member
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    Sep 2012


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    Just tried regular coffee (latte) after a month and don't seem to be in pain...Is that possible?

  2. #2
    ICN Member dg2901's Avatar
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    Sep 2004
    east coast, USA
    I drink coffee quite frequently. Ocassionally it'll increase frequency for a little while. Other than that, no issues.
    (o.O )
    (> < ) This is Bunny. He's on his way to world domination.

  3. #3
    ICN Member cia's Avatar
    Join Date
    Aug 2006
    I wouldn't be able to drive to work without my morning coffee. I thank God every day that coffee is not a trigger for me
    I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

    DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.

    I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

  4. #4
    I have no problems with coffee. I think that some types of IC are not affected by food and drink, while others are severely affected.
    Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

    Medical research addict.

    Likes: hot baths and naps with cats

  5. #5
    ICN Member
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    Oct 2010
    Wow, I had no idea some people could get away with coffee. It's one of the worst triggers for me.

  6. #6
    ICN Member
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    Sep 2012
    One of my favorite drink

  7. #7
    ICN Member
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    Sep 2012
    For me it seems like I only have to stare at a cup of coffee to get a flare - so I avoid it It is a struggle when I feel better though, because I then think "maybe coffee will work this time". Never did. So I guess I will have to live without it.

  8. #8
    ICN Member
    Join Date
    Jun 2012
    Oh I am so jealous of you who can drink it without a problem!! You lucky dogs. I'm with missisola.. thinking about it flares me. I drink it I am addicted and I pay for it all morning with urgency and pain. Why can't I just give it up? I'm trying...have been for 6 months. Just need a new morning routine.
    Current Therapy: IC diet,Physical Therapy,Elmiron 100 mg 3 x day,Loratabs 500 2-3 x day,Celexa 10 mg 1 x night,Riperidone 1 mg 2 x night (for bipolar),Prerelief a lot,Probiotic,Smoothlax for constipation

    Tried and didn't work:Oxybutinin (Ditropan) horrible drug!!,Amitriptyline 10 mg (was helping but caused insomnia),Kertolak,Topamax for anxiety.. was causing hair loss,Rescue instillations,Antibiotics short term

    My IC started with a bladder infection that took 13 days to cure. Usually gone in 3 for me. After that I had a burning in my vagina for 3 months that progressed to my bladder and now I suffer from bladder pain, pressure, urgency, frequency, and low back pain.

  9. #9
    ICN Member
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    Feb 2012
    WA, Australia
    Black coffee is a severe flare. I have found I am OK with a cappucino (soy milk for me). Maybe the milk dilutes the acidity?

  10. #10
    ICN Member
    Join Date
    Sep 2012
    new york
    A cup in the morning and one in the evening is what you should take it won't affect you.

  11. #11
    ICN Staff ICNDonna's Avatar
    Join Date
    Mar 2000
    I can have ONE cup of low acid coffee in the morning --- definitely no more than that --- especially late in the day.

    Have you checked the ICN Shop? for US & Canada for all others

    Patient Help:


    Diet list:

    AUA Guidelines:

    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.

    Anyone who says something is foolproof hasn't met a determined fool

  12. #12
    ICN Member
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    Mar 2007
    I can drink one large cup of regular coffe in the mornings no problem.

  13. #13
    ICN Founder icnmgrjill's Avatar
    Join Date
    Mar 2000
    I will tell you, hands down, that 90% of the people who call our office crying in pain admit that they have that one cup of coffee in the morning. It is, BY FAR, the worst trigger for IC flares and long term, prolonged discomfort.
    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.

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: 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.

  14. #14
    ICN Member Emily3wst's Avatar
    Join Date
    May 2012
    Giving up caffeine was the biggest impact to my QOL. I am a writer and researcher and I am not as sharp or motivated without it. I know that I have developed new skills without it, but once we solve this illness it will be the first thing that I do! A soy latte. A green tea. And then a bunch of reading. I can't wait!
    Suspected IC
    Diagnosed with PFD Jan 2012, Major Bladder Infection Aug 2011
    SI joint dysfunction and piriformis syndrome since Aug 2008

    Pain: my only real symptom.
    Frequency: <5x a day, has never really been more, except with certain foods.
    Urgency: Feel uncomfortable pressure sometimes. No nocturia.

    Current Treatments:
    Semi-Strict IC diet, Lorazepam oral + Valium cream as needed, Pelvic Floor Physio weekly, Magnesium 500mg/day. Massage and relaxation.

    Past treatments: Codeine (GI side effects seemed to exacerbate symptoms), Zoloft and Pristique (Too many side effects)

    Very grateful for this forum!

  15. #15
    ICN Member nekura's Avatar
    Join Date
    May 2007
    I can't even eat potatoes or parsley. Coffee was literally the only food I used to "eat". Without.. three years without it.. I should be placed as an extra on The Walking Dead.
    • 27 year old student
    • Had symptoms since I was 5
    • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
    • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
    • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
    • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..

    Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

    What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

    What didn't work: Elavil, vistaril (12/22)

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