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  1. #1
    ICN Member Pumpkinsmom's Avatar
    Join Date
    Apr 2008
    Huntington, WV

    Questions about the IC Belly

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    I haven't been diagnosed with IC as of yet, but I do think I have it. I was just wondering about the IC belly. I have read that it causes your abdomen to be tender. Is the whole abdomen tender or just certain parts and does it stay tender even after an IC flare? My abdomen stays tender and bloated all the time even after the flare (which lasts several months) is over. And it is mainly from my belly button down (pelvic region I suppose); the worst being just below my belly button. Has Aterax helped anyone with these symptoms? Several doctors have tried to tell me it's IBS. Not a symptom from what I've read. and one even tried to say it was endometriosis, which I had already been checked for. So how exactly is the IC Belly diagnosed? Or is ATerax just prescribed based on symptoms? I have taken gas pills and Dicyclomine for the bloating and "IBS", but nothing works and I stay miserable!
    Oh, and has anyone who has the IC belly ever gotten pregnant? I have had fertility problems and have considered invetro, but I'm scared to death I'm gonna have a miserable pregnancy due to the sore abdomen. And I definitely can't imagine not being able to be treated with any kind of meds if a flare does arise!! AND....I am beginning to get better from a flare; there's still something there; but definitely much better. I wonder if I see a urologist if I can still be diagnosed with IC if I'm not in a "flare" at the time. As with a cystoscopy or the potassium test. do they only work during flares?
    Last edited by Pumpkinsmom; 04-27-2008 at 05:41 PM. Reason: added a question

  2. #2
    ICN Member
    Join Date
    Dec 2004
    I've had IC belly that has come on before, without, or even outlasted a flare. It did encompass my entire belly region...from navel on down. I've used cold packs of frozen peas to help relieve the sensitivity. Have never tried Atarax or any other antihistamine for that symptom, but luckily I don't get IC belly much anymore, and definitely not nearly as bad as I did my first 18 months w/ symptoms while I was in the dx process. My symptoms are much improved since that first year or so (2003-2004), so don't give up hope that with time and treatment and an accurate diagnosis that your symptoms will always be so bad. I don't know of any treatment that will cure IC belly for sure, but cold packs have given me a lot of relief when things were really bad. Hang in there and keep us posted on how you're doing thru the diagnosis can be very frustrating but things can and do get MUCH better for the majority of us once we find the right treatments and sometimes it just takes time...also the IC diet can be very essential in helping your bladder is a crucial thing for many of us to get on the road to recovery. Best wishes!

  3. #3
    Support Volunteer traceann's Avatar
    Join Date
    Nov 2004
    Hello and to the ICN!! I too had the IC Belly and it was darned frustrating! Not only did my clothes not fit, but were extremely uncomfortable. If you haven't yet, or if your regular doc isn't up for diagnosing/treating (I see my gyno), I think you should find a good uro - they can perform the tests or even just diagnose on symptoms if what they hear adds up to IC for them etc. (I was diagnosed based on my symptoms alone).

    If you haven't yet, I would check out the Patient Handbook here on the ICN, it really helped me get information on medications, testing etc. Here's a couple helpful links to Hydroxyzine (Atarax/Vistaril) information that helped me out!

    Hope these help a little bit!

    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:

    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
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS

  4. #4
    ICN Member
    Join Date
    Jan 2002
    Memphis, TN
    For me, IC Belly comes on when I am flaring. I think it is a reaction to my bladder being irritated. When my bladder is irritated, it is tender to the touch. It seems to swell a bit which seems to cause my belly to "pooch" out a bit more than normal, even when I am laying down. Like when you cut yourself. The tissues around the cut "swell" because of the injury. I don't take anything for it. I do use cool packs to help reduce the swelling. Once the flare reduces in intensity or goes away, the swelling goes down because my bladder is no longer swollen and the IC Belly is gone.

    I do hope you will make an appointment with a Urologist and talk about your symptoms with the doctor. It was very important for me to learn what was causing my symptoms when they appeared.

    Oh...and to the ICN...

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.

    Link to the ICN Patient Handbook:

    Link to the IC Diet:

    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.

  5. #5
    ICN Member
    Join Date
    Jan 2004
    We have a home in Texas and Louisiana!

    IC Belly

    I'm not sure when my IC symptoms started because I have had urinary problems all my life, but I am 48 and I think the IC belly started for me somewhere around the big 4-0! HA At least it's a good excuse. I did lose 40 pounds 3 years ago and have kept it off but I am only 5 feet tall so I needed to lose it. Figure this out: I lost 40 lbs. - got almost to my target weight and had to TRIPLE my blood pressure medicine. (It took me a while to realize pain drives my bp up like crazy and this was during the height of my IC).

    Tell me these bodies aren't fearfully and wonderfully made? God has a sense of humor...I'm sure of it. Every time I look at this post 4-0 body I am reminded it's true!
    Prayerful blessings, Sheryle

    Good, Better, Best - Never let it rest...
    Until your Good is Better and your Better is Best!

  6. #6
    ICN Member Pumpkinsmom's Avatar
    Join Date
    Apr 2008
    Huntington, WV
    So, do you have the IC belly all the time or just with a flare? Mine seems to be there all the time! At least I think that's what it is. I don't think it would have anything to do with my colon; like IBD (inflammatory bowel disorder). I wonder how that would be distinguished? I haven't checked out the handbook yet, but that's where I'm headed. After 4 yrs. of getting nowhere with my doctors, it can be a LITTLE frustrating! Thanks for your imput!

  7. #7
    ICN Member
    Join Date
    Sep 2005


    I guess everyone is different, but for me i have the belly all the time. Swells a little more when i flare but even when i am not in a flare it's swelled.
    This does not mean everyone does.
    At one point one of my doctor's had mentioned it to me, i explained about the IC belly but they still made me do the colonoscopy ( thought i was backed up ).
    Well i showed them huh....after all that they were surprised the belly was still there, MY primary ( the 1 who made me go to the GI ) Now understands IC a little bit better, so i guess there is something positive that came out of that.

    However there is absolutly nothing wrong with having it checked out, I just went through all of this with my GI. They can't actualy look into the colon since as my GI explained to me it is a colapsed organ, but by the catscan they can rule out other things that could cause chronic pelvic or abdominal pain, and even though they couldn't see right into my colon the doctor was able to put my mind at ease that i was not backed up either.

    I hope this helped rather than confused you.
    Diagnosed w/IC 7/18/05
    Dx'd w/Endo 5/5/06

    Current Treatments:
    Elmiron-100mg 4x's a day
    Atarax-10mg's 2x's a day
    IC Diet
    Oxycontin 40mg-Only when i can't take it anymore!

    Laparoscopy done, Endo lasered, Let's pray it stays away!

    "If you haven't gotten all the things you want, be grateful for the things you don't have that you don't want."

  8. #8
    ICN Member camackin's Avatar
    Join Date
    Dec 2007
    Vancouver, BC
    I have the belly almost all the time. Sometimes I wake up with a flat tummy and am amazed, but mostly, my clothes don't fit anymore and it's pretty tender too. I do notice that when I eat a lot in one sitting or eat certain things the belly is worse. looks like i'm 3 months pregnant!
    - Diagnosed Oct 2007
    - Dextroamphetamine has improved my symptoms and given me more energy
    - Prelief allow me to have some bad foods, but I follow the diet as much as possible
    - Physio for pelvic floor dysfunction has helped a little
    - Bladder distention Jan 2008 made me worse
    - Elmiron didn't help after 9 months
    - very slow improvement of symptoms, still in pain every day.

  9. #9
    ICN Member
    Join Date
    Apr 2008
    I have the IC belly most of the time too....After I had my hydrodistension in April my stomach was flat for about 4 was wonderful! I can`t remember when the last time I wore a pair of jeans(mostly sweat pants, scrubs at work)because they are just too uncomfortable for me....

    And sometimes it is embarassing to have the IC belly because I have been asked if I am expecting....depressing too...

  10. #10
    ICN Member
    Join Date
    Apr 2007
    It's so comforting to know that I'm not the only one who suffers from IC belly. I didn't even know it HAD a name until I came to this site. I have 3 different sizes of work pants all stashed in my closet for the different days of bloating from this stupid disease. Ahh... Thanks for recommending the ice packs. They are a blessing!


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