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IC Belly - HELP!!!

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  • #1

    IC Belly - HELP!!!

    I was recently diagnosed with IC in late March, 2011. Since then I have looked like I'm about 4-5 months pregnant. I am always being asked when my baby is due. I am absolutely MISERABLE. The belly is ALWAYS there. It doesn't seem to matter if I'm having a flare or not. None of my clothes fit me anymore, and I have had to resort to wearing maternity clothes. I am only 5 feet tall, so just a little bloating makes me look huge. I am EXTREMELY depressed and have no idea if there is anything I can do about my IC Belly. I am being treated with all of the typical IC medications, plus medicine for depression, and large weekly doses of Vitamin D. Is there anyone out there who can give me some advise? I need to hear more than just, "Are you on the IC Diet?", because it just doesn't seem to be working for me. Any advise would be GREATLY appreciated. Thanks!

    Age: 39
    Medicines: Elmiron, Hydroxyzine, Amytryptiline, Norco 325/5 mg for pain, Prescription Potassium pills, Microgestin FE (birth control), Vitamin D, Uribel, Prelief, Cystoprotek, Risperdal (depression), Adderal (hyperactivity), an occasional Tramadol for pain
    Tags: belly, bloated, bloating, ic belly, inflammation
  • #2
    Sometimes an ice pack on my pelvic area would help me when the Ic belly would appear. I also had to make sure I wasn't constipated from the different meds, because that would really make me blow up like a balloon. Miralax worked well for me for that. Some of the bladder meds can really slow down the elimination process. I decreased my sodium intake too, since some meds seemed to cause some fluid retention.

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    • #3
      Sometimes as we begin to find which treatments work best, the puffiness does at least lessen. Fortunately, the clothing styles this year include some loose, long tops. With the slim cut pants, it can help conceal the IC belly.

      Warm hugs,
      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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      • #4
        I can Relate to Exactly how you Feel

        Sorry you feel that way. I understand exactly how you feel and what your going through. My stomach swells and rounds like I am pregnant as well. What's worse with me is I also deal with constipation and sometimes don't go for 3-4days which makes my belly look so much bigger. When I'm having a flare my belly is tender to the touch and hurts so much and I know it's bigger than normal because I know my belly. I also do not fit into my normal jeans/skirts anymore because my belly has swell so much. The thing with me is I'm also swollen all over because my wedding rings no longer fit so it may be retention from medication as well, but still it dosn't make sense as to why my belly is so much larger than normal.
        Please please if anyone hears about any Treatment or anything that may help with the IC Belly please please let me know by posting it here.
        Today I started a 17 day diet spoken about on many TV shows that I got from my sis and hopefully I can stick to it and lose some weight. I'm short also and on the chunky side (not huge but chunky).
        I don't know if it's my eating habits or if it's Inflammation from my "IC Belly" since I am on the chunky side. Unfortunately my Mom and sister thinks it's Food related nd not the IC, though I feel it's the IC. I know I can lose some weight but I also know my stomach, and my stomach never looked and felt like this before IC. Jeans buttons just are tighter than normal.
        If I do stick to eating right & lose a little bit of weight and yet continue to have this BIG BELLY than I'll know for sure it's because of the IC. I'm hoping I can find out and Post it here as Real Living Proof.
        Like I said I am also constipated from Pain Medicine which dosn't help. I also have Chronic Back Pain that I'm dealing with, I know losing weight would help overall for my health. The truth about it is I've never been good at sticking to diets & I'm not sure If I'll ever know if it's my IC or just eating too much.
        Well I hope I can change my eating habits/Lifestyle so there's one less thing to worry about. If I do accomplish this jump start 17day diet and lose weight I'll list info in 17days after today, if not than I didn't stick to it I won't know for sure.
        I do believe it's Hot/Inflamed; Inflammation, Water Retention, Bladder or something like that.
        If anyone else has the belly from IC, Inflammation or Urine Retention please Post info. Also if your on the thinner side but have grown a large belly since having IC symptoms please also post so I know were not alone and it's not all in my head.
        Also today I had the DMSO Treatment done for the first time (no cocktails just DMSO since first Treatment done) and so far so good.. No negative side effects and no pain to note like normal or any flaring like normal. Next week I will have second Treatment done. They said if everythings okay than they mix the cocktail and other medications in for Treatment.
        Elmiron, Hydroxyzine, Ditropan didn't help so Doctor suggested DMSO or Bladder Distention and I thought this would be best to try first. If anyone can Relate strething the Bladder/Distention please do.
        My husband did come home and say what's that awful smell, He says I smell like rotten milk,,, ewww. I can't smell it but he does, they said I might reek of a strong odor but I didn't know I would smell like rotten milk. Well I hope this DMSO helps but too soon to tell.
        Another thing I could not hold it in for 20min I had to Go So Badddd there was no way I could hold it in for 20min so held it for hmmm 12-15min. How do you hold it for 20min? ,,,
        Last edited by hoping4change; 05-16-2011, 04:24 PM.

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        • #5
          I have huge swelling, my husband can clearly see the difference. People often ask me when I am "due," but I try not to let it bother me. I have to wear yoga pants. I have way too much pain with anything that fits tightly around my belly.

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          • #6
            I can relate.. I'm 5' 4", 100lbs with a small bone structure.
            This is clinically underweight so you can VERY MUCH notice my huge bloated belly.
            I drink 8 to 12 8oz glasses of water a day, try to stay away from too much salt, and exercise (yoga and strength training). The problem with that, is not having enough electrolytes, causing a storm of IC-unrelated symptoms, but that's another story all together.

            Drinking lots of water and lowering sodium intake is what most people say helps with bloating. Too much water could just make frequency worse... and that's dreadful to say the least..
            I use benefibre to try and help my constipation, and it does help the bloating go down a bit...
            21 years old
            dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy

            ♥ looking for a way or medication to help stop spasms ♥

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            • #7
              Thanks for everyone's responses

              Thanks to everyone who have responded to my post!

              I am a tiny person, only 5 feet tall and around 110 pounds, at least before I developed IC symptoms. I have always been on the thin side, so ANY degree of bloating makes my belly look huge. The bloating from the IC is very alarming in my case. I can actually feel my skin stretching because my belly is so big. My psychiatrist, who treats many women with IC, says he has NEVER seen anyone with such severe bloating problems like mine. I am hoping and praying that the swelling goes down soon, but based on what I have been reading it looks like the IC belly may be with me for good. It is terribly depressing and destroying to my self esteem, and knowing that my belly may always be huge is emotionally crippling. When the bloating is especially bad, I don't even want to leave the house because I don't want anyone to see me like this. (If one more person asks me when I'm due I'm going to have a nervous breakdown.)

              I wouldn't wish IC on my worst enemy... however, it is good to know that other people with IC have this problem as well.

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              • #8
                a long shot

                I think it is a bit of longshot but if you read the thread on dextro... under the experimental section here you may come across to the link on the study about 2 people with IC who responded to this drug and those 2 happened to have edema so maybe there is a connection. I have not followed the thread too much so don't know how many on this forum have benefited and this drug is a very controlled substance. Didn't help me because it is a stimulate and so it hurt me. My belly sticks out a little because I eat too much and don't exercize so I don't have the as bad an IC belly that some people with IC have. I think if I lost weight it would go down. Best of luck -----P.S. Swelling = inflammation in my mind.
                I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

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                • #9
                  I had read a doctor's response to a patient who had asked what caused the "IC belly". His opinion was that the swelling was due to an inflammatory response which causes more blood flow to the area which causes the expanded capillaries etc. Sounds like a logical explanation in some cases.

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