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  • New here need help

    Hi My name is Debbie. I am 55 and have Primary Progressive MS (and a host of other disease processes). I actually had an InterStim done back in 2005 for Neurogenic Bladder. Around April 2010 I started getting UTI symptoms almost as soon as I finished a round of antibiotics. It went away then came back with a vengenance June-Aug (yes lots of stress going on). The dipsticks would be positive (both red and white blood cells, color, acidity, odor, etc) but most times when culture came back it was very low. One of the nurses at the Primary Care office told me I should think about seeing a urologist as it might be IC. Well I started taking CranMax supplements and increasing it when I got symptoms and until Oct that worked WONDERS! Then it started all over again. So I had to go back to my gynourologist for eval. Of course I was told when I had interstim..to come back if problems.. the doc I saw this time said I should have been coming back annually!

    Initially all concentration was on the Interstem as they could not get their equipment to read it correctly. Also I had the same positive dipstick with catherized urines but hardly any bacteria on cultures AND quite a bit of retention. It was after I saw manufacturer rep (and had another horrendous UTI symptoms which cleared up after antibiotics only to come back within days of stopping)... when I called the office I almost felt like they weren't taking me seriously (brushing me off). I had an appt for that Thurs and I was NOT going to let them think this was all in my head.

    I spoke to the nurse who took me back.. showed her my void diaries .. noted when I had symptoms, etc. She took it to the doc...they decided then it was either IC or PBS. They did an instillation procedure that day and it was like WOW .. no more symptoms! I went back last week for a cystoscopy..for the first time since I returned I had hardly any retention. During the cysto she showed me quite a few areas of sores on the bladder. She sad I could try and biopsy now but am concerned it would be too painful. I am to do a void diary, follow the diet (which they gave me 3 separate sheets WHICH ARE VERY CONFUSING!), contact them problems and she will see me in 3 months. She also said I already have the Interstim so the only other thing she would do is add a daily low dose antibiotic which she would prefer to avoid.

    Now here are my questions...concerns...
    1. If I have a vice (besides my crafts) it is coffee...but I use a blend of decaf and organic ... I actually add salt to the coffee grounds before I start brewing. I have noticed if I don't have that coffee (diner coffee or out at a friend's) I start with bladder spasms, etc.
    2. Never saw I was to stop aspartame (which I use in coffee and some cereals).
    3. Never gave up mayo (again didn't see it) and did not notice any problems.
    4. I LOVE LOVE LOVE spicy food. Really did not give that up...didn't notice any problems
    5. Some of the foods I had sparingly (like tomatoes...but my tomato gravy I always add some sugar to cut the acidity of the tomatoes)...again I had spaghetti gravy at daughters and between the coffee and the tomato gravy had problems!
    6. Don't understand why no yogurt!

    I have a ton of other disease processes/medications which require potassium. I had been using smoothies with bananas, yougurt, berries, etc to help with increasing fiber and getting potassium in. I probably need to see a dietician to help me waddle through the various diets and do/don't food.

    My meds include:
    Copaxone 20mg/1ml injection
    Baclofen 10 mg (up to 100 mg a day)
    Valium 5 mg 3x day (painful spasms and have been aspirating choking)
    Diovan HCT 160/25 (contains diuretic)
    Lasix 40 mg 2-3x/week (diuretic)
    Synthroid 112 mcg
    Plavix 75
    Vytorin 10/40
    Tricor 145
    Cranberry supplements
    Fiber Supplement (Chewable tablets)
    For pain (various parts) I have Tramadol 50mg and Tylenol#3

    I cannot take any product that contains salicyclic acid (even natural forms such as aloe, white willow bark, etc) as I AM HIGHLY ALLERGIC.

    Sorry to be so long! I am going to download my Nook Happy Bladder Cookbook and pick up Interstitial Cystitis Survival Guide

  • #2
    Hi, Welcome to the board!

    Did you look at the diet here? (see my link below). I think it is easy to read and figure out. In my case its the same foods my urogyne gave me a list of to avoid.

    I can't answer all your questions but coffee is never good for our bladders. Maybe try switching to low acid? The puroast is good and there are others you can order on-line. Pretty sure Walmart sells one too.

    Try switching to splenda, its on the "try it" list and would be better then aspartame.

    Mayonnaise is on the "try it" list and some people can eat it, I'm alright with a little myself.

    I don't know why yogurt is a no-no but I have figured out it definitely gives me symptoms and I have only recently grudgingly given it up but am hoping to add it back in someday when my symptoms are better. Some people can eat greek yogurt but that bothers me too

    I think really you need to try the diet and be strict with it, even giving up spicy food for a couple of weeks. When your bladder calms down, try adding in one food at a time that you like and see if it bothers you. Its really the only way to tell.

    Also, a dietitian would help if you have multiple diets to follow.

    Cranberry is a huge bladder irritant and if you have IC you should never take it. It might help keep bacteria from sticking to the wall but it gets in our irritated walls and causes pain.

    And lastly, there are some medicines out there to start on for IC such as elmiron, elavil (amitriptyline), hydroxyzine (atarax). Maybe talk to your doctor about those meds too as some are very helpful

    Good luck!
    Cindi


    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: http://www.ic-network.com/diet/2009icdietlist.pdf
    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    Great treatment flowchart on page 19 of the pdf

    Comment


    • #3
      every icer is different some icers can tolerant certain foods or drinks. me i can tolerant light mayo on tuna or chicken breast sandwich. i stick with ic diet coffee put me into a flare.
      <center>
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      </center>

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      • #4
        Thanks Cindy. I did a sample download of the Cookbook but need to check it out. I think my main concern is needing potassium (diuretic) and it is against everything that I have read.

        I also know that if I don't insure that I go to bathroom every few hours that seems to bring on symptoms...one thing they found when they were testing me for neurogenic bladder is that my bladder I can hold in excess of 1000 cc (this was seen with the void diary I did back then and the urodynamic test). That was what actually caused my symptoms Friday night and Saturday but they were minimal and back to no symptoms today (THANK GOODNESS!).
        For coffee.. I should mention that I cut back from minimum 2 pots/day to about 2-3 cups.. mind you my cups are about 2-3 cups from the normal size pot.
        Today was my husband's birthday we went to an Italian restaurant but I made sure I had a green tea with peach flavoring; and a chicken dish with mushrooms, whole wheat penne, a cream sauce and a side of asparagus (which I added to the pasta). So for me I was VERY good...no tomato and no spicy food. I will try the link (but I think one of the diets that the doc gave me was from the website.. that was the one I found the least confusing).

        I did forget to mention that I had been on Elavil many years ago as I was diagnosised with Fibromyalgia.. it didn't change any of the symptoms so I stopped
        Last edited by dacollari2; 03-06-2011, 12:40 PM. Reason: forgot something

        Comment


        • #5
          Originally posted by Linda May View Post
          every icer is different some icers can tolerant certain foods or drinks. me i can tolerant light mayo on tuna or chicken breast sandwich. i stick with ic diet coffee put me into a flare.
          Thanks Linda.. I only use light mayo.

          I will look into the coffees from the website. My concern is how to get the potassium I need for the diuretics because without it can create severe cardiac problems and other problems. I can usually tell when my potassium is low as I start with a different type of leg spasms (other than my MS spasms).

          Comment


          • #6
            Originally posted by dacollari2 View Post
            I will look into the coffees from the website. My concern is how to get the potassium I need for the diuretics because without it can create severe cardiac problems and other problems. I can usually tell when my potassium is low as I start with a different type of leg spasms (other than my MS spasms).
            I think people can take the prescription potassium supplements without a problem. Did you read differently? or were you told differently? You could start a new post on it but I'm pretty sure I have read that from users here.

            Also green/black tea are not good either. I threw mine all out when I started the diet so I wouldn't be tempted Rooibus tea is wonderful and safe, peppermint is good and so is chamomile.
            Cindi


            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: http://www.ic-network.com/diet/2009icdietlist.pdf
            AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
            AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
            Great treatment flowchart on page 19 of the pdf

            Comment


            • #7
              Potato skins have more potassium in them than bananas. Not many people know that. We can eat potatoes and if you eat the skins you should be ok. Some other foods have good potassium in them as well, not sure which one's right off hand but you can probably google it. Google has all the answers! Except what can cure us, unfortunately.
              Link to the patient information, everything from What is IC? to Disability
              http://www.ic-network.com/patientlinks.html

              American Urological Association Clinical Guideline
              Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
              http://www.auanet.org/content/guidel...ent_ic-bps.pdf

              Comment


              • #8
                Originally posted by sailawaygrl View Post
                Potato skins have more potassium in them than bananas. Not many people know that. We can eat potatoes and if you eat the skins you should be ok. Some other foods have good potassium in them as well, not sure which one's right off hand but you can probably google it. Google has all the answers! Except what can cure us, unfortunately.
                Thanks I know Sweet Potatoes have lots of potassium .. we have them cooked.. mashed (using honey & chicken broth), baked, roast, and fries (but baked). I do baked potatoes for lunch sometimes with veggies and love the skins

                Thanks

                Comment


                • #9
                  Last time I saw my uro he said there was evidence showing that potatoes could be a problem for people with IC. I seem to be able to eat them but I would not eat too much of them now.

                  MG
                  My are with you all. May you all find a way to peace and joy in your lives.

                  Comment


                  • #10
                    It may feel like you are walking through a minefield when you are first diagnosed, there is so much info to wade through, but you'll get through it fine.

                    Bob as well has to take diuretics daily and watch potassium levels. Potassium rich foods are listed on google, just go through it and cross off the ones that are contraindicative of the IC diet. Some friendly foods are squashes, cabbages (which is also an alkaline food good for the bladder), carrots, most greens, cauliflower, broccoli, milk, eggs, cottage cheese,and a lot more. The diet on this site is good to print out so you can cross reference as you do your research. Coffee and black or green tea seem to be triggers for a lot, but maybe you are one of the lucky ones. Mayo, maybe not so much, Bob can use sparingly and not every day. How much are you going to use anyway?

                    If you see a dietician or nutritonist, take the list with you and make sure she/he knows your allergies and sensitivities and extra needs. Everyone is different, and if you can tolerate something most cannot, good for you! Hang in, you will find what works for you. Jill, wife of Bob

                    Comment


                    • #11
                      There's a link to the latest food list in my signature below. There are many IC safe foods that are rich in potassium: Potatoes and avocados are both okay for us and both are rich in potassium. Some other potassium rich foods are cereals, dried peas and beans, fresh vegetables, fruits, nuts, fish and poultry.

                      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

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