Announcement

Collapse
No announcement yet.

One year anniversary

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

  • One year anniversary

    I was diagnosed a year ago, and now have been officially in remission for ten months! I am one of the lucky ones that are triggered by what I eat. As long as I stay away from my trigger foods and take Prelief when I eat anything acidic, I don't have flares. I did have one minor UTI a few months ago after a bad bout with diarrhea. I usually take a macrobid when I have diarrhea just to prevent any bacteria from getting up the urethra (I'm 72 and everything is pretty loose down there ) but I was out of the antibiotic. My Dr has me keep it on hand and take one if I go swimming, hot tub, tub bath, etc...anything likely to allow bacteria into the bladder. I got careless and ran out. So I wound up with a UTI but a few days on an antibiotic and I was fine. That'll teach me to keep track of my meds!

    I first went to the urologist because I was having what I thought were UTIs every weekend, but on Monday when I went to the Dr. there was no infection. Turns out I was going to the movies with a friend on Friday and drinking a HUGE diet cola. Three of my triggers...acid, caffeine and aspartame! I can tolerate a little caffeine...one cup of half caff coffee a day, but NO aspartame...it'll get me every time. Prelief takes care of the acid. I can't tolerate spicy foods any more...pepperoni really messes me up! No more Mexican, Thai, or Indian food. Oh well. Sometimes I will get something that has a lot of hidden MSG and will start to flare, but if I force fluids, I can usually get rid of it in a couple of days. I've only had to resort to AZO a couple of times when I've accidentally got hold of something that is a no no. Dehydration will also cause me to start to flare, but if I rehydrate quickly, I can abort the flare in a few hours. I am on vaginal premarin, which seems to help a lot, not only with the IC but with vaginal dryness, dry skin, etc.

    I can live with this. It is just one more dietary limitation...I'm hypoglycemic, so I am already on a low-carb diet.
    Last edited by Sharon in AZ; 07-19-2015, 07:01 AM.

  • #2
    Re: One year anniversary

    Congratulations! So great to see success stories.
    Diagnosed via cysto/hydro 2/6/2015
    Symptoms: frequency, urgency. uretha discomfort, mild bladder pain (a raw sore type feeling.)
    CURRENT TREATMENTS:
    IC Diet (2/15) , Elmiron 100-300mg (3/15-5/16) insurance issues switched to PPS-DR (5/16-present) 2 150mg capsules daily (pentosan polysulfate sodium same formulation in Elmiron) DH Aloe 3-6 capsules daily (3/15), Schiff Digestive Advantage probiotics 1 pill daily (3/15), Amitriptyline 25mg- (5/15-8/16)attempting to wean down due to suspected weight gain side effect. Hydroxydine 25-50mg as needed at bedtime (5/15) Quercetin 2 pills daily to help immune system and body inflammation. Cystoprotek 4 capsules daily (8/15). Prelief as needed.
    USE DURING FLARES: Heating pad, ice packs for PFD, Vaginal Valium 10-20mg, Uribel, Pelvic floor stretches.
    PAST TREATMENTS: PFD physical therapy (6/15-10/15) & Counseling for stress mgt (9/15-12/15) both very helpful. GNC brand progesterone cream (not sure if this made a difference). Too many different diets and herbs to list.
    TRIGGERS: STRESS STRESS STRESS. BCP. Hormonal fluctuance (ovulation/period). Coffee, artificial preservatives and dyes.

    Comment


    • #3
      Re: One year anniversary

      Thank you for sharing your success. I'm diabetic along with IC so I do understand diet limitations --- but as long as I can keep the IC controlled, it's well worth the effort.


      Donna
      Stay safe

      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


      • #4
        Re: One year anniversary

        Congratulations! I hope you stay pain free for many many more months! You are lucky you were able to find out exactly what your triggers are. It makes it so much easier to deal with when you know exactly what not to do and what not to eat. I'm still going strong with my remission- over two years now. Keeping my fingers crossed!

        Comment


        • #5
          Re: One year anniversary

          Thank you for posting! Because you were diagnosed 1 year ago and have been in remission for 10 months does that mean you had IC for 2 months?

          If not how long did you have undiagnosed IC? Sorry I'm just a bit confused

          Comment


          • #6
            Re: One year anniversary

            Originally posted by stamen View Post
            Thank you for posting! Because you were diagnosed 1 year ago and have been in remission for 10 months does that mean you had IC for 2 months?

            If not how long did you have undiagnosed IC? Sorry I'm just a bit confused
            Yeah I was curious about that too.
            Diagnosed via cysto/hydro 2/6/2015
            Symptoms: frequency, urgency. uretha discomfort, mild bladder pain (a raw sore type feeling.)
            CURRENT TREATMENTS:
            IC Diet (2/15) , Elmiron 100-300mg (3/15-5/16) insurance issues switched to PPS-DR (5/16-present) 2 150mg capsules daily (pentosan polysulfate sodium same formulation in Elmiron) DH Aloe 3-6 capsules daily (3/15), Schiff Digestive Advantage probiotics 1 pill daily (3/15), Amitriptyline 25mg- (5/15-8/16)attempting to wean down due to suspected weight gain side effect. Hydroxydine 25-50mg as needed at bedtime (5/15) Quercetin 2 pills daily to help immune system and body inflammation. Cystoprotek 4 capsules daily (8/15). Prelief as needed.
            USE DURING FLARES: Heating pad, ice packs for PFD, Vaginal Valium 10-20mg, Uribel, Pelvic floor stretches.
            PAST TREATMENTS: PFD physical therapy (6/15-10/15) & Counseling for stress mgt (9/15-12/15) both very helpful. GNC brand progesterone cream (not sure if this made a difference). Too many different diets and herbs to list.
            TRIGGERS: STRESS STRESS STRESS. BCP. Hormonal fluctuance (ovulation/period). Coffee, artificial preservatives and dyes.

            Comment


            • #7
              It's been almost six years now since I was diagnosed. I had bladder problems most of my life, but wasn't diagnosed with IC until I was 71 years old! I'm one of the lucky ones who can control it with diet, and within two months of going on an IC diet, I was in remission, and have been in remission ever since. I've had a couple of bladder infections, and every once in a while I will eat something in a restaurant, or not read a label carefully and get one of my triggers and have a small flare, but drinking LOTS of water, taking Prelief, and going back on the diet brings me out of it in just a few days. Aspartame is my biggest trigger. Even a small amount will make me flare, and that is usually the culprit if I have a sudden mini-flare.
              I Take 1 Prelief every morning and night because I have RA and have to take a large dose of folic acid every day because one of my meds messes up my folic acid balance, and the Prelief keeps it from irritating my bladder. The diet is easy for me...I only have a few triggers...mostly acidic foods... and I avoid them or take Prelief with them. Ibuprofen and Aspartame are my main triggers. The Ibuprofen is easy to avoid, the aspartame, not so easy...they hide it in a lot of things. Since I am hypoglycemic, I eat a lot of sugar free foods, and have to really watch for the aspartame. I also don't tolerate saccharine. but the sugar alcohols don't bother me, and splenda is ok, too.

              Comment


              • #8
                Originally posted by Sharon in AZ View Post
                It's been almost six years now since I was diagnosed. I had bladder problems most of my life, but wasn't diagnosed with IC until I was 71 years old! I'm one of the lucky ones who can control it with diet, and within two months of going on an IC diet, I was in remission, and have been in remission ever since. I've had a couple of bladder infections, and every once in a while I will eat something in a restaurant, or not read a label carefully and get one of my triggers and have a small flare, but drinking LOTS of water, taking Prelief, and going back on the diet brings me out of it in just a few days. Aspartame is my biggest trigger. Even a small amount will make me flare, and that is usually the culprit if I have a sudden mini-flare.
                I Take 1 Prelief every morning and night because I have RA and have to take a large dose of folic acid every day because one of my meds messes up my folic acid balance, and the Prelief keeps it from irritating my bladder. The diet is easy for me...I only have a few triggers...mostly acidic foods... and I avoid them or take Prelief with them. Ibuprofen and Aspartame are my main triggers. The Ibuprofen is easy to avoid, the aspartame, not so easy...they hide it in a lot of things. Since I am hypoglycemic, I eat a lot of sugar free foods, and have to really watch for the aspartame. I also don't tolerate saccharine. but the sugar alcohols don't bother me, and splenda is ok, too.
                New Smyrna Beach.
                That is so great. Thank you for sharing.


                Donna
                Stay safe

                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

                Working...
                X