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diagnosed this morning and need advice(and sympathy)

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  • #16
    You're welcome- let me know how you get on and also if you want to have a moan! (PM if you want) I'd be interested to see if the acupuncture helps.
    I'm going to start trying some new things (actually the question is where to start as I'm very impatient and want to try them all and I want them to work NOW!) so perhaps we can swap notes.
    Hope your next doc's appointment goes well!


    • #17
      Welcome leonielane,

      Hahaha - I say that like I have been here a while. I just recently joined too - although I've been diagnosed for a year.
      But - I feel like it was only last month to be Dx's because I had to quit Elmiron (made my hair fall out and break off) and so I feel like I am starting all over and new to IC.

      Because of quitting the "solve all" Elmiron....... I started flaring and having urgency/pain issues again. I too had a brick wall/ smack in the face of "Step away from the Good Food!" I am finding it very difficult to cook for 2 with the exemptions of every darn thing in the IC hazard list being relatively normal stuff. This is NOT easy, and I am struggling myself. Heck - I went through headache withdrawls cutting soda, cofee, and chocolate out cold-turkey! I was a B#&%* for 2 weeks, I swear. I recognize that I am still grieving myself, and struggling with this crippling feeling of "incurable condition" diagnosis. But as much as I wallow in my puddle of pee from time to time, I am determined to not let it define me.

      I am trying hard to stick to the diet, whilst beginning Enablex and Atarax.....but I don't feel normal yet, and so I can't introduce anything on the no-no list. But I will. You can bet on it.

      I am maybe in denial of my condition, but I am part Cuban, and REFUSE to live this way forever; Not being able to have cuban black beans with vinegar, or mojo pork and pico de gallo is not who I am.

      My goal is to find the right medication combo to get me normalized so that I can eat what I want.... in moderation. I would rather live that way with IC, then cut out normalcy of living and restaurants for the rest of my life. I refuse to inconveinece everyone I meet with my exorbitant dietary needs, and live a half life myself. Not if I can help it.....

      Anyways - I hope that you can find the right combo of medicines for yourself and de-stress to help "calm the beast-bladder" within. I am a little different than all the ladies on here though....... while I hope that you can find your triggers through diet, I don't personally support submitting to it forever - unless every medicine known to man has failed me. I hope you find what works for you so that you can live life fully your way.
      Last edited by QueenMellyBee; 09-20-2011, 05:10 AM.

      Dx'd IC : 9/2010 Dx'd PFD : 4/2012

      Currently on:
      *Back on Elmiron [100mg] + *Elmiron/Bicarb/Lido INSTILLS 2x weekly----*Nortrel Birth control--*MagOx400--*Nitrofurantoin (1 after intercourse to avoid UTI's)--*Prelief--*Prosed--*Clonizapem--*Flexeril 10mg--*Zyrtec
      *PT for IC&PFD - Both hands on/all-up-in-there approach, and the breathing techniques/stretching approach--- helpful, but difficult to continue at home and make time in daily life

      Didn't work:
      *Nexium ,*Sanctura , *Enablex ,*Atarax ,*Allegra,*Arginine
      *Elavil (2 pills and I passed out, cold on the floor....)
      *Hydrodistention - Done by the best Dr, but did not prove to relieve any pain over long term at all
      *Gabapentin (DANGER - Caused suicidal thoughts, inconsolable crying & erratic behavior when mixed with Clonazepam & Flexeril)

      Hair loss/thinning/breakage Elmiron 300mg daily caused to my hair.... it is NOT a slight side effect


      • #18
        Did you ever have a heart palp from Elavil. My pain virtually disappears but the heart skips is annoying and I know I probably will have to give up on it.


        • #19

          You have gotten so much good advice here! This is honestly such an amazing place to come when you are feeling low, and feeling like no one else in the world gets what you are screaming!!

          I came here tons when I was first having a hard time, and I read all of the success stories! Gave me HOPE, and that was enough for me to carry on and stay on the diet.

          I have been feeling very good for the most part for awhile now! I can eat almost EVERYTHING again! excluding chocolate, pop, tomatoes and coffee- of which I have not tried and don't really have the desire too!!
          I even had a few cups of regular tea last week on my holidays! AMAZING

          I recently just got back from a surfing trip to the island! Had an amazing time and didn't give my bladder two thoughts either-- because I didn't have to So it does get better with time for most of us.

          Now the only time I have trouble with my bladder is when I eat things I know will hurt me sometimes I have to be bad... lol , but I am telling you, the diet DOES work.

          BTW. I suffered pretty bad in the beginning for about 6 months until I started the diet and started elmiron. Now that I feel GOOD most of the time, nothing stops me either now. This summer I worked TWO jobs, so close to 14 hours a day sometimes working and I WAS OK. so yes it is MORE than possible to work when you have IC.

          My next goal is to join a swim club and start the gym three times a week!

          Hang in there and never give up.

          28 yrs old,

          I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

          What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

          Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!

          Me in my graduation gown!


          • #20
            My question is, How do you just accept that you have this? I feel like my whole life has done a 360. I was in remission for 12 years. 12 years ago I was never told that there was not a cure. I had a hydro and felt good. I had things over the years but never related them back to IC. This July my IC returned and I am having a VERY difficult time dealing with this. Also, over the 12 years I developed IBS. I had no idea that this is the other side of IC. I take rapaflo, Elmiron, Thryroid pills for low thryroid, Zoloft, and Klonopin. I think the Zoloft is effecting my IBS too! I feel like I can't catch a break. I have been doing the diet and go for instills that are helping. I started counseling but I feel somehow that guilty for this. That why did this happen? What did I do ? I must have done something wrong? Just very sad and I started trying the foods on the try list but slowly. This is one of the hardest things I ever had to do. Everyone tells me I am not dying! I feel that a piece of me did die because who I was has to change!


            • #21
              How we accept this condition is still pretty elusive to me even though I have been in remission for a good while now. The questions still never end as to why I have it, or what really brought it on in the first place. I find the link between bowel problems and PBS pretty interesting as I have just now developed a bowel disorder that is possibly microscopic colitis. My bladder problems have gone away but a bowel problem has now started. I wonder if anyone has found a link between the two?