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Help, I'm a Newbie

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  • Help, I'm a Newbie

    After about 6 months of trying to figure out what was causing my pain and pressure, I was diagnosed with IC March 1st. I am now going twice weekly for treatments for 2 weeks and have been taking Elmiron for 1 week. I am also trying to follow the diet very closely. Boy has it been hard to give up my caffeine. I feel like I never wake up til about lunch time. I feel so bloated also. I think the treatments are helping some. I am also diabetic. So using no artificial sweetners and using sugar works against that. I am also concerned with weight gain from the Elmiron. I am a Weight Watcher and was doing so well before all this started. Now I am up about 10 lbs and feel so bad. I was doing Zumba for exercise and now that is out. I want to continue my walking. All my clothes feel so tight in my belly area. Thanks for any advice you can give me.

  • #2
    Welcome to the ICN.

    Elmiron is not known to cause weight gain so I wouldn't worry there at all. Some ICer's do suffer from the swollen belly when their IC is flaring, hopefully that will go down after some time. I use splenda or the other brands of it for my sweetener as it is made directly from sugar and I have never had any problems with it either. I am insulin resistant and take metformin so I try and watch those things as well. Try walking or some light yoga just to keep moving until you feel well enough to do more strenuous exercises. Not sure if zumba will be back but you could very well get things under control and be find with zumba. It looks like a lot of fun!

    Be sure to give the elmiron time to work, it can take weeks or months to help. Are your instills helping? Hopefully you are seeing some good relief. Sounds like you have found a good Dr that is on top of things.

    Once again, welcome to the ICN.

    Link to the patient information, everything from What is IC? to Disability

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


    • #3
      I figured I would give you a welcome first of all. I happen to be a male, by the way. The other person did mention Elmiron is not known to be a weight causer. Besides, I actually weigh the same as I did once I was diagnosed back in 1997. Of course, I eat like a big dog and still can't gain 10 lbs now. I have never read or heard any male IC'ers mention about having the "IC belly". (and not me, either) Oh! We are all different in ages, gender, in my case, symptoms, and medications. By the way, I must not be fimiliar with Zumba. Oh, well! None of us enjoy having IC, or any chronic illness, at all.


      • #4

        I'm diabetic and can uses a little bit of stevia for a sweetener.



        • #5
          to the IC Network. I'm also diabetic and I have found that I can tolerate Splenda. Just use caution at first until you know.

          Warm hugs,
          Stay safe

          Elmiron Eye Disease Information Center -
          Elmiron Eye Disease Fact Sheet (Downloadable) -

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          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


          • #6

            Thanks everyone. I am so glad I found this network. My Dr. assured me that there are many people with this problem even though it is new to me. I feel like my family and friends just don't get it. Most have never heard of it and just don't understand.

            Yes, the instills are helping some. I seem to be really tired the day I get them. By that night I am exhausted. May not have anything to do with it but just seems that way. As far as the weight gain, I am a stress eater as well. I guess I just freaked out when I read something about Elmiron and weight gain. I don't need any help gaining that's for sure.

            Thanks for the support. Happy Weekend everyone.


            • #7
              Welcome, I believe everyone above summed it up, but what ever you do don't cheat with the diet I did and regretted it. I had two cups of coffee 2 days in a row by the 3rd day big flare had to have 6 weeks instills again, I will not cheat again. I know its hard I miss my coffee so much I wish they would find a cure or a pill so we all can eat normal again.
              <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


              • #8
                Where can you find low acid coffee? I have been drinking some decaf and also some decaf tea? Should I not be drinking these? I feel like I should just drink water.....that is so hard for me. Thanks for the advice ladies and gentlemen


                • #9
                  i think everyone is different. Caffeine doesn't bother me too much, but boy if I eat something spicy, I will certainly pay for it! Just try out different things and see, but like she said above, use caution! Good luck!
                  I am the mother to my beautiful son Parker Thomas.
                  I have had IC for 10 years, and I also have migraines, endometriosis, pelvic adhesions, osteopenia, peptic ulcers, fibromyalgia, and PFD.
                  I am currently prescribed Effexor XR 150 for depression/anxiety, 50mcg Fentanyl patch, Percocet for breakthrough pain, Klonipin for sleep and anxiety, and d-amphetamine salt xl for ADHD and excessive daytime sleepiness due to my pain meds, Pyridium, 10 mg of Valium (inserted vaginally to relax pelvic floor muscles, and I do bladder instillations once a day consisting of a mixture of 3cc Sodium Bicarbonate, 5CC Lidocane, & 22cc of Heparin. I also regularly use a prescribed TENS unit for pelvic pain, along with lots of rest in bed with my four, four-legged furry friends. (I once heard called "fur-therapy")
                  There is always something beautiful around you, sometimes you just have to look for it!


                  • #10
                    I can drink 1 cup of decaf coffee daily with no problems.I was using Splenda but it caused burning in my intestines so I had to quit that. I use sugar in my coffee now.Imipramine(like Elavil) for pain caused me to gain weight.I have been on Elmiron for almost 3 years now.It does not cause weight gain for me.
                    I came off the Imipramine in November and lost all I had gained while on it.


                    • #11
                      Coffee and tea

                      Originally posted by bshphar View Post
                      Where can you find low acid coffee? I have been drinking some decaf and also some decaf tea? Should I not be drinking these? I feel like I should just drink water.....that is so hard for me. Thanks for the advice ladies and gentlemen
                      Puroast makes great 50% reduced acid coffees and they even have flavored coffee if you like that. You can order through here or their website directly. Stay totally away from black and green tea and alot of herbals too. The safe ones are chamomile, peppermint and rooibus (african red) tea. They sell some wonderful ones here that are flavored, kinda like dessert teas. Its hard to find anything in the stores other then the chamomile and peppermint. Everything else is either herbs that will irritate your bladder or black/green tea.

                      Plain water is of course ok but be wary of flavored water and/or sparkling water as both are irritants to your bladder.

                      Gelnique for frequency/urgency - works great
                      Macrobid after sex
                      Prilosec, continuous birth control pills
                      synthroid .088mg, mucinex-d, restasis

                      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                      IC Diet Link:
                      AUA 2011 Guidelines to diagnosing and treating IC overview-
                      AUA 2011 Guidelines to diagnosing and treating IC PDF:
                      Great treatment flowchart on page 19 of the pdf