Announcement

Collapse
No announcement yet.

I am FRUSTRATED

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • I am FRUSTRATED

    I am new, and frustrated. I was diagnosed last Thursday. I immediately started the IC diet STRICTLY. I've eliminated everthing on the bad list for 7 days. No caffeine, no acids, Prelief before eating my non-acidic foods. The problem is, my IC isn't frequency and urgency its pain. My pain level is the same. How will I know whats a trigger if I'm not responding any differently? I'm hardly eating anything!! Today I had plain oatmeal, that's it. You'd think I'd be feeling good but I still have pain/pressure. How long does it take?!?!!? I HATE THIS!!! I even had an instillation done on Monday. My bladder was numb, but I still have pelvic pain.

    Sorry for my vent. If it sounds like I'm yelling at you, I don't mean to.

  • #2
    It takes time for your body to get rid of the garbage in your system before you start feeling better... or like me it doesnt matter what you eat... I had the same problem I tried the diet for a long time and I still felt like poop no matter what I ate! Everyone's body is different.
    ***Rachel***

    Dance like no one is watching
    Love like you've never been hurt
    Live today like it's your last

    Dxd with IC in June '06

    Comment


    • #3
      Have you also switched to a high ph water such as Evian or Arrowhead? Also, try taking Prelief with every meal. For me, it has made such an incredible difference in the burning pain experienced. I hope you feel better soon.
      Peace
      Danica


      Stopped taking Elmiron for the time being-- could not tolerate side effects

      ADARAX 25mg at night and at times morning
      Calcium mag citrate w/ vit.D
      Prelief 8 to 10 a day
      Cystoprotek 4 a day
      MSM

      ~God's mercy and grace are infinite~

      Comment


      • #4
        It is very normal at this stage for you to feel frustrated. You have just been diagnosed and everything is so new.

        What's happened over time is that more than likely your bladder has become very irritated by what foods/drinks you have put in your body. It can take several weeks for your bladder to calm down and rest enough from those things that have irritated it. Being on the diet for one week may not be enough for you to feel the effects of the diet. Stay with it. Give it a chance to work. Try to eat more things besides oatmeal. That is not healthy, nor is it necessary. Do stick to the usually okay items on the list. Once your bladder feels better to you and your symptoms seem to have calmed down, then you can go on to adding one new thing at a time.
        Sharon

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

        Where I can be found most days.



        Link to the ICN Patient Handbook:
        http://www.ic-network.com/handbook/

        Link to the IC Diet:
        http://www.ic-network.com/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.

        Comment


        • #5
          I can absolutely relate to what you are saying. I felt the same way. After 7 months on the diet I am very much in the same place I started. I feel like I don't want to eat any of the bad foods just because they might make me hurt more. I haven't cheated on the diet a lot, but I noticed a half glass of white wine causes me to be in more pain. Also, one time I ate some peanuts and chocolate which had a bad effect. I think maybe, big maybe, if you stay on the diet you will slowly learn to detect more pain when you eat something wrong for your body. For me it happened in about 2 months I think. It is very hard to tell though because I'm constantly on pain killers.
          Please keep up your spirits. I rely on this site a lot!

          Comment


          • #6
            Also, some people's bladders are much more food-sensitive than others. I found that I can eat some things others can't (most fruits, except for citrus, raspberries and grapes) and chocolate. However, I can't tolerate the fruits I listed, any type of processed tomatoes (spaghetti sauce, tomato sauce, etc.), soy or soda. Even when I wasn't eating ANY of my trigger foods, I still had constant symptoms. Since I started taking Elavil I rarely have pain anymore, but still can't eat my triggers. Today I am having the worst flare I've had in a couple of months, and I think it may be the ibuprofen I took.

            I agree that it's super hard to tell what your food triggers are when you have everyday symptoms. It was only when I got the pain under control with Elavil that I could really see what affected me -- even with the Elavil I can't eat the things I listed above, or if I do it has to be in very small quantities.

            For some people, diet alone does work, and I, like the others, encourage you to stick with it. But you might want to look into other avenues for pain control as well. I was in constant everyday pain before I started the Elavil and was frustrated, as you are, because even though I was careful with my diet, it didn't help completley, it just kept me (sometimes) from having bigger flares.

            Comment


            • #7
              My only problem is frequency for the most part. But everything that is acidic, spicy, or powdery is bad for me. That includes all pills. And that includes prelief. And I have to eat every 4 waking hours. Hunger makes me worse. For me the safe foods are white rice with butter, mashed russet potatoes with butter, cheese fries, and pillsbury biscuits (believe it or not). I can eat meat cooked with only salt as the spice, but only if I eat it with potatoes. I can only drink bottled water and diet soda (most people cannot have soda).

              I'm no expert, but the easiest way to start might be to start with potatoes with some meat. And bottled water. I think most people can tolerate those foods and you'll get protein and vitamins with that combination. I don't know about oatmeal. Afraid to try until I get better. Anyway, maybe you'll feel a little better in 2 weeks and can add on a new food every 3 days and see what bothers you. For me it takes 3 days for a bad food to bother me.

              But there are many others with more experience on this forum than me. Good luck!

              Comment


              • #8
                Thanks everyone for your replies. I would not survive right now without these boards!! WHAT did people ever do without the internet? I took a Hydrocodone around 5pm and I'm still feeling pain free now at 9:30pm. I just wish it wasn't taking pain medicine to reduce my pain, ya know? My doctor assured me it was okay to take and that he WANTS me to take it for pain. I just want instant results I guess.

                I see him tomorrow b/c i have an instillation treatment. (My poor urethra ) He didn't want to put me on Elavil since I've been taking Wellbutrin for so long. He didn't put me on Hydroxine b/c I take 50mg of Benedryl everynight anyway. Some of these meds that are helping everyone else I'm not one yet. He didn't want to throw my body into a tailspin on all these different meds all at once.

                Thanks everyone. You are all sweet & wonderful. I hope one day I can help others and offer them help on the boards. Right now I'm all misery and questions, LOL.

                Comment


                • #9
                  Soccermom,
                  I know exactly how you feel, I was diagnoised back in Nov and I still don't feel like I'm much different. I have pelivc/back/bladder pain everyday. I really try to stick to the diet but it doesn't seem to help me much. My gyn was the one that orginally diagnoised me and she, like your dr didn't want to throw too many rx's at me at once afraid that we wouldn't know what was working and what wasn't. I went to a uro on my own(without talking to my gyn, I have a PPO and don't need a referral) and he hasn't even given me any meds yet other than macrobid (crap forgot to take that, running to kitchen to get pill) to rule out bacterial causes of my problems. I've been on that for over a week and don't feel any better. My hubby thinks that MY biggest trigger is stress not food and w/ 4 kids, a hubby a mother in law all living in the same house and a full time job there is ALWAYS stress. Sorry, not trying to take over your thread, but you are definatley not alone. If you ever need someone to comsierate with PM me
                  Christine



                  I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                  1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                  2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                  I have tried every oral medication as well as rescue instills and DMSO.

                  I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                  Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                  Also proud mom to the best Bullmastiff on earth, Claus

                  Comment


                  • #10
                    Unfortunately, oatmeal is a problem for some ICers. The diet can be a real challenge. At the time I was diagnosed, little thought had been given to a diet connection so I ended up finding my own diet triggers, which took a long time without having any kind of a list to follow. I did end up finding that all of my trigger foods and drinks are listed as being "usually a problem."

                    Hugs,
                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    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: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    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]

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

                    Comment


                    • #11
                      I am sorry you are still in so much pain. Unfort. with IC sometimes it can take a while to find the right combo of treatment, meds and diet to see what works for you. It is a game of give and take. Donna mentioned she had to find different food triggers that bothered her. With IC we are all so different, this is why there is not one single med that works for everyone.

                      Someone else mentioned stress. There are many other triggers that bother IC, not just food, and for me like the others stress is a hugh flare factor for me. I have consit IC symptoms on a daily basis, but when I am stress or eat something I should not have I flare up big time. Also exercise, illiness and other factor can flare up IC. I am sick right now, and my bladder is also acting up. In fact I had a kidney stone and bladder infection about 3 1/2 ago and my bladder has been haywire ever since then.

                      Maybe you can try some of the other meds your doctor mentioned but have not put you on them yet. For some the Hydroxine (atarx) works better than Benedryl. And for some they take the Elavil. But being on the Welbutrin I dont know if you can take both.

                      Unfor. with IC there is not a overnight bandaid fix and it can take a while to find something to help you, and I pray that you will find something that will help you. Good luck
                      God grant me the serinity to withstand the days ahead!!!

                      My myspace link...
                      www.myspace.com/patricia_luvs_matt


                      Patricia

                      In Memory of My Father (Lawerence) 1/25/2007

                      Procedures:
                      Interstim Sept 2001
                      1st InterStim Removal May 2005
                      2nd Interstim Implanted May 2005
                      2nd InterStim Removed March 2007
                      Hysterectomy 1999
                      Tubes Tied 1997
                      C-Section 1996


                      Me and my kids


                      Taylor (my daughter) Me and my daughter My son Cody and Taylor

                      Comment


                      • #12
                        I'll echo the sentiment on the the stress factor. I can drink beer...actually, I can drink a lot of beer...and I can have a glass or two of red wine with no symptoms. One argument with my boyfriend, on the other hand, can guarantee a night hanging out in my bathroom instead of sleeping. My job isn't usually that stressful, but when I get one halfway difficult project to do when I'm already feeling a little burnt-out that day, I'll be back and forth to the restroom the rest of the afternoon. The irony is that IC by default will cause stress, so it's easy to get into a self-repeating cycle with it.

                        May I recommend trying some yoga, or if you hurt too much for that, some basic stretching to calm your nerves? I find it does wonders for be before bedtime, more so than anything thus far.

                        Comment


                        • #13
                          diet ddesperation

                          oh, i feel it all again! That first year trying desperately to figure out what made me worse, when infact I think that NOTHING would have made me feel better since my poor gag layer in my bladder just hadn't healed yet. BUt then, slowly, SOOO S L O W L Y I started to feel little teeny tiny bits better. And then one day I realized that I had woken up pain free and gone to bed pain free and I was lying there in bed crying cuz it was possible in my mind that I might not feel better the next day!

                          Give yourself time and lots of room for trying again and trying again. We all get so stressed trying to MAKE ourselves better by not eating bad things and then when we feel bad we beat ourselves up for not being able to figure out what made us bad.

                          hope you feel better tomorrow!

                          Comment

                          Working...
                          X