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  • Trying to see through the haze!

    I was sort of diagnosed with IC on 12/21/06. Since there is a lot of frustration trying to figure out what exactly is going on with me, I decided to consult those of you that deal with IC everyday. Please read my story and give me your opinion, as I’m starting to feel that my doctor is just as confused as I am.

    I started having bouts of frequent urination after I had my first baby 10 years ago at the age of 18. Before that, I can’t remember ever having problems. I would just go through phases of making frequent trips to the bathroom, which lasted a couple of days. Every time this happened, I would automatically think I had a UTI. I worked at a doctor’s office and would do a urine dip and I usually did not have a UTI, and the symptoms would go away just as quickly as they would appear. My symptoms were very sporadic and mild until 10/12/06. It seemed my frequency had increased the week before so when I went to the doctor for a check-up to start back on my anxiety medication after weaning my baby from breastfeeding, I talked to her about my frequency problems in the past. She said that it was probably overactive bladder and gave me samples of Detrol LA to try once I was completely done breastfeeding. The next day (10/12/06) was horrible! I was going to the bathroom every 15-20 minutes and I had a lot of constant pressure, but no pain. I decided to wait it out to see if the symptoms let up, but by the next day, I was really miserable! I called the doctor with my symptoms and they called in an antibiotic for a UTI. Yup, you guessed it, it didn’t work. They had me come in to give a urine sample for culture and it came back fine. I was referred to a urologist who told me it was overactive bladder, and since I had completely weaned my baby, he started me on Vesicare. I took it for almost a month with no relief. I called the urologist and told him I wasn’t feeling better and he scheduled a uro-dynamics test. The next day I was talking to my aunt about my symptoms and she said I had symptoms similar to my cousin who has IC. When I went to my urologist for my consult after the test, he said my test results showed a suggestion of overactive bladder. He said he wanted to try me on Detrol LA. To that, I asked him about IC. He looked confused and said he didn’t think we were to that point yet and asked me if I wanted to have a cystoscopy done. Of course I did… I was going out of my mind trying to find out what was wrong with me… I thought I had bladder cancer or something! So I had the cystoscopy done on 10/21/06. During the test he filled my bladder with fluid, which I later found out was water, and I did not respond to it besides feeling full, then he filled it with another fluid, which was potassium chloride, and I felt a way more intense pressure and fullness, but no pain, just discomfort. After the test, the doctor came in and said he thinks I may have a mild case of IC, but he still thinks I have overactive bladder too. He prescribed me Detrol LA and Elmiron to take together, but after reading the side effects and the percentage of Elmiron helping me, I don’t think I’ll be taking it. I’ve been taking Detrol LA for the last 2 months with no improvement. I’m almost positive I have IC, but I’m just not real sure since my doctor doesn’t seem sure that IC is what it is. Below are some of the things I’ve noticed about myself and I now recall from the past:

    - When I eat or drink anything with an artificial sweetener, I have to go to the bathroom more often.
    - Sometimes when I hold it, I will get stomach cramps and feel really bloated and gassy for hours after I go.
    - I have some days where I’ll only have to pee up to about 10 times, but other days I have to go way more.
    - The only overactive bladder symptom I have is the frequency… I don’t have the sudden urgency or urgency incontinence
    - I constantly have the pressure or the sensation that I have to pee; even after I just went… it is ALWAYS there.
    - When I have caffeinated drinks, I have to go frequently.

    Your opinions would be so helpful to me. I’m just trying to figure it out! Thanks in advance for your help!

  • #2
    Hello Sdg and

    Your symptoms sound alot like IC.. You could try the IC diet and see if that helps..
    Also, To have a true dg your doctor would have to do a Hydo on you, Thats where the put you to sleep and the exstend your bladder..
    With my IC, I have the pressure you are talking about and when I eat something does not agree with my bladder. I have frequency and when I go it still feels like I have to go again..

    Also you should check out the IC handbook, it has a lot of helpful info in it
    http://www.ic-network.com/handbook/

    Hope this helps..
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


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

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN 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


    • #3
      hi

      Your symptoms do sound like IC. I know for a long time I used to enjoy a large diet soda for lunch and would notice that my bladder symptoms would act up after that. Of course, drinking coffee is a huge no-no for me. You may want to try cutting out the artifical sweetners and caffeine for a while and see if that helps. For several months I have been drinking only water because it don't want to risk it. It was hard to get used to giving up my sodas for lunch, but I now find that my symptoms have gotten better.

      Comment


      • #4
        Ok, so do you feel like you ALWAYS have to go, no matter what, or is it only when you eat trigger foods? I'm just trying to figure out where I should go from here. Should I go ahead and try the Elmiron or should I hold off and try everything else first. Here lately, I've had good days and then boom, I'll have a bad day (like today). I've also started Slim Fast like 3 weeks ago to lose the pregnancy pounds and I think maybe that is a trigger for me. Yesterday I didn't have any Slim Fast products and I had a REALLY good day. I had Slim Fast today and I have been miserable! One other thing is people keep saying to drink lots of water, which I do, but it makes me have to go to the bathroom a lot. My urologist told me to cut down on my fluid intake, but that doesn't seem healthy to me since I don't usually drink the recommended daily intake of fluid anyway. What do you think?

        Comment


        • #5
          Looks like Slim Fast could be a food trigger for you. Stay off it for a little while to see.

          Water...The reason we say drink plenty of water is that it will help dilute your urine and flush it out of your bladder quickly.

          Elmiron...I don't take it but those who do say that it can take up to 1 year to get the full benefits.

          I have to go more than the "normal" person but I always have and it seems normal to me. Trigger foods/drinks causes my bladder to burn. I drink more to dilute my urine which in turns makes me go more.
          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


          • #6
            I have mild IC. With cysto you can see the "bloodshot eye", but it is not completely red. I have needed only one thing to control my problems..bladder instillations.

            I was treated for overactive bladder and all Detrol did was slow the urine steam to a trickle. The urge and frequency was still there.

            welcome
            Keep your chin up.
            TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
            My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

            Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
            Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
            I post to encourage and offer total support for rescue instillations.
            Find me on facebook: L. Clark Thomas
            Louann

            Comment


            • #7
              Your symptoms sound very similar to mine when my IC started up in 2001. You can read my story if you click on the link in my signature line.

              On the water, it is very good to drink enough through the day so that your urine stays diluted. If you don't drink enough it can get concentrated and then that is irritating to the bladder. The trick is to stay hydrated by taking sips through the day and not chugging down big amounts all at once.

              Detrol may or may not help. It leads to retention in some people - but really helps others. It has been helpful for me and I've been on it for 5 years.

              Taking Elmiron is a personal decision. I was worried about the side effects, too, but I am SO glad I went ahead and tried it. It's been my miracle and I basically have had no symptoms for a couple of years now. I take Elmiron along with a few other meds and they seem to do the trcik. Elmiron does NOT help everyone, but there are those of us out there for whom it makes a huge difference.

              Good luck! So glad you found us.
              Kim

              Diagnosed August 2001

              Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


              Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

              I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

              *****************************

              “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

              “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

              Comment


              • #8
                One thing you might try is the IC diet. You'll find it in the Patient Handbook. Some ICers find that single thing helps more than anything. And if it turns out you don't have IC, it hasn't done any harm.

                Warm healing thoughts,
                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


                • #9
                  I just wanted to say thank you so much for all of the advise! It really helps to have people there going through similar circumstances. I really appreciate it! L. Thomas, I now know what the doctor was talking about when he told me that my bladder looked more vascular than normal... "bloodshot eye", now I can picture what he was talking about. Thanks again for being there!

                  Sharon

                  Comment


                  • #10
                    Hi, Sharon! You've come to the right place! This board has been extremely helpful to me over the years, and I know others feel the same way too.

                    It sounds to me like you might very well have IC, too. I don't know enough about overactive bladder so I will defer to your doctor on that one.

                    Please, please, please don't let statistics or the possibility of side effects convince you not to try IC meds. I think the latest I read, Elmiron causes hair loss in only 4% of patients, and although it causes gastrointestinal upset in many patients, it often subsides in a couple of weeks or so as the body adjusts to the new medicine. And some have found relief by taking it out of the capsule and putting the powder into some water to take it.

                    It's true that different studies have shown different success rates for Elmiron - some studies sound promising, others sound discouraging - and it's true that it might not work for you, but - what if it DOES work for you? What if it gives you your life back? Wouldn't that be wonderful, if it did?

                    Of course, we all have to take or not take medicines, as we feel is best for us, but I wanted to say, Elmiron really does help some people, to the point where they hardly even know they have IC.

                    Blessings,
                    Lori

                    Comment


                    • #11
                      I agree with those who say to try the diet. Even if you take the Elmiron, it can take months and months before you get any significant relief. In the meantime, try getting the trigger foods out of your diet. I was amazed, and saddened, to find out some of the foods that were bothering me. But once I got my bladder calmed down, I felt so much better.

                      And yes, I did have frequency/urgency just about all the time before I went on the diet. Even after completely going on the diet I was going to the bathroom 18-24 times a day.

                      You say the water is making you go to the bathroom alot. I was shocked to find out that I could flare from water! My issue was acidity, others have problems with the chemicals in the water. Trial and error helped me to find out I did better with spring water with a higher ph than tap water or many other bottled waters.

                      Just keep trying to learn all you can. There is a lot to know to get to a place with relief. Good luck!

                      Comment


                      • #12
                        Ok... so I'm going to start the IC diet. I'm sitting here pondering how to get started. This all is very overwhelming and it's getting kind of hard to step back and look at everything that has been shoved into my brain these last couple of months. I am in flare all the time... I always feel the sensation to go to the bathroom. Sometimes the sensation is stronger than others, but it is always there. This makes me think that I am always putting chemicals into my body that my bladder is rebelling against. SO, I'm thinking maybe it would be a good idea for me to start by just going on a water diet (I know that sounds drastic, but I've had to do liquid diets before and survived, besides it is for the good of my bladder, right?!) until my bladder is calm enough for me to notice even when it slightly flares. Then I'll start adding foods back in a little at a time. I already track everything I put in my mouth because I've been trying to lose my post-pregnancy/post-breastfeeding pounds, so that's a step ahead of the game. So, when I have a flare, I'll go back, look at the possible culprits, and stop eating all of those foods until my bladder calms down again, and then add them back in individually until I flare. Does this sound right? Is this a good way to do this? I'm seriously at a lose as to another way of doing this. Any other suggestions?

                        Comment


                        • #13
                          Absolutely do not try going on a diet where all you ingest is water --- unless you have the approval and supervision of a physician.

                          Have you read the diet section in the Patient Handbook? You'll find information there about which foods and drinks you need to avoid.

                          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


                          • #14
                            Water only may be a little too drastic, there are a number of foods that seem to be generally ok in IC. Look at the diet section in the patient handbook, and a good goal might be to stick with only foods in the "usually ok" column. You can get a balanced diet just from those foods. You'll know when you can start adding other foods.

                            I would recommend going to just drinking water for your fluid intake for a couple of weeks. Just that can make a big difference. Good luck!

                            Comment


                            • #15
                              Thanks!

                              I don't have a lot of time in my day (three kids, full time job, new house to unpack, husband working and going to school - I'm sure a lot of you know how it is) and I just haven't really had a chance to read a lot out of the patient handbook. My goal for this weekend is to sit down and read it, but I want to thank you for the suggestions you gave. I have just felt so overwhelmed trying to find a place to start! I understand that just water is a bit ridiculous , but I just wanted to get my bladder calmed down so I'll be able to tell if something is irritating it. Hopefully the foods on the ok list doesn't upset my bladder. I don't know... I'm going to start this weekend and see how it goes. Thanks again for pointing me in the right direction!

                              Comment

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