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  • New to IC and full of questions.

    Let me give you a little background first. I am a 37 y/o male that has been having frequent urination for a few years that built up to a more urgent feeling and getting up two to three times a night. What finally made me get seen was one day at work we got tied up on a job and the urge got to be too much and I wet myself. To make a long story short I was treated for overactive bladder, BPH and prostatitis. After a change of meds that left me unable to urinate they showed me how to self cath till the meds wore off. Before I left the office I asked the NP if it was normal to still have the urge to urinate after being cathed and knowing I was empty. She sad no and that was when I was scheduled for my cycto with hydrodistention. That is when they told me I had IC. That was a week ago.
    So some of my questions are: How normal is it to have this without any real pain? After the hydro, I am now having more of what I call discomfort rather then pain, how long will this last? Is the pain you guys feel a sharp pain or a feeling of spasms gone wild. I seem to have a lot of "spasms gone wild" if I go longer then about 2 hours without a bathroom trip. Also I get this feeling if I drive down a bumpy road and get thrown up and down. Also when I get to this point I find myself having the strong urge to go about every 15 to 20 minutes till things settle down. It has been so bad my wife said she could feel the spasms by laying her had on my lower belly. Is this just the early stages of IC? If it is, how much worse will it get? I am a firefighter and there are a lot of times where we go on a call and are gone for 2 or 3 hours. The way things are now I know this bathroom thing will be a problem.
    Another question I have is Will thing like riding a lawn mower or atv cause this spasm feeling? I was trying to mow some today and the bouncing around got very uncomfortable and I had to stop after only an hour and a half. I also had to go urinate 4 times while I was trying to mow. Was it because of the IC or because of the hydro last week? Is it possible that the hydro has cause more symptoms of IC that will now by more of a problem?
    Sorry to run on and on but I just have a ton of questions and I can only surf the internet so long without getting compleatly freaked out.
    Thanks for any input and hope to hear from someone thats has been there and done that.

    Rope

  • #2
    First of all, you should be taking it a little easy for a couple of weeks after a hydrodistention. One thing you might try for the irritation from vibration is the IC cushion available in the ICN Shop. It helps take the vibration away from the perineal area.

    Have you looked at the IC diet? You'll find a link to the latest food list in my signature below. I do think it's worth a try for you.

    My IC was diagnosed in 1975 and I am doing much better than I was then. I think the reason is that I have learned which foods, drinks, activities I need to avoid. You will get there.

    Sending 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


    • #3
      Every icer is different, you and your Uro need to find the right treatment plan for you. Make sure you stay on the IC diet, then later you may try different foods to your list. I wish you the best and you came to the right place for info and support. Do not hesitate to ask questions or vent we all know what you are going through. It seems more and more people are getting this desease. If I were you I would also drink only purified water.
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      • #4
        Hello and Welcome..

        I strongly sugest the IC diet.. And when I was first diagnosed I read so many post on here and got lots of great info.. I do think its a good idea to check with your doctor to get on some meds that might help..Elmiron is a good one and there is others that can help urgency and pain.. I was helped most bu MSM/Glucosimine and Lyrica..But we are all different so it is really a trial and era thing.. I do hope more will chime in, but please keep reading you can learn a lot on here..
        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


        • #5
          Thanks Donna for the cushion suggestion. Unfortunately for me a riding mower bounces around way more then the cushion could help. Driving a regular car is not a issue until we get on a dirt road. Again unfortunately for me I live one mile down a dirt road. This is only an issue if I have to go to the bathroom before we start up the dirt road going home. I will try to take it as easy as I can but it will be hard. Because of work and home life with a 4 and 5 year old, I can't slow down to much but I will try.
          To leelee, when I see my uro, I will ask about a change of meds or maybe adding something to what I am already taking. The only meds I am on are VESIcare for the urges and Uroxitrol for the prostate. I am not sure if he will leave me on the Uroxitrol seeing the new IC diagnosis but my prostate is large for a person my age so we will see. To everyone I have started the IC diet stuff and have begun cutting out things. Biggest blow will be the loss of my soft drinks and pizza.
          My question for everyone is what dose the first onset pain feel like? To me I feel the "spasms gone wild" that quickly builds up to the cramping feeling. Is this how it starts out?

          Comment


          • #6
            Rope wrench,

            This web site is a great place for encouragement and info. (And there are guys with IC that post on here, even though more women have IC). There will be days where you feel bad and there will be many when you feel great. And you can get better. Everyone is differant with symptoms and treatments. Frequency and mild irritation or feeling I have to go again 20 minutes after I go sometimes are my biggest symptoms. Just don't give up.

            I was diagnosed with IC November 2010 and I even drive 3 hours to a specialist. I understand your busy life. I am a 34 year old male. I work 50-55 hours a week and I have a 7 month old and 2 year old at home.

            Ask for Elmiron and and you can even have instill treatments done thru a catheter. You can try Antihistamines or Overactive meds. Just look up alot of blogs here. Take Care and many prayers to you on your healing.

            God Bless,
            Jonathan

            Comment


            • #7
              Hi Rope - I'm so sorry to hear about your problems, but thank goodness you have now been diagnosed properly. One of the things that I have taken that takes the edge off the discomfort (and no, for me it isn't pain per se either, just an unbearable tingling/pressure/irritation - almost indescribable) is OTC pyridium. Ask for "AZO standard." It will turn your pee flourescent orange, but the relief is well worth it. I have taken it for so many years, I'm pretty sure that my kidneys are bright orange by now, but every urologist/gyno that I've been to assures me that there are no long term effects from taking it. Obviously check with your uro first, but when all else fails, I have found that it will get me through a few hours. And do be religious about the IC diet. It made a huge difference for me. As the flare dies down, you will be able to add food back (but make sure you do it one food at a time so that you can determine what's a problem and what's not). Right now I'm coming off a flare, so I'm adding things back to my diet and thoroughly enjoying the "indulgences", but trust me, as soon as another one starts, I'm back to bland, bland, bland - and it works! Keep posting here too when you need some moral support. It is an amazing network of IC survivors! Good luck!
              Last edited by Aromanut; 06-27-2011, 12:59 PM.

              Comment


              • #8
                Aromanut,
                Thanks for the reply. I'll try my best to stay with the diet. I'm figuring since the diet is THE first thing everyone says to do then it is the single most important thing to stay true to. I do have a question for you, you mentioned to try pyridium. I just finished a 10 day run of it I started the night after my hydro last night. Now it is over, can I expect a flair up? I have had more symptoms since the hydro but assumed it was normal due to the trauma to the bladder. What do you think?

                Comment


                • #9
                  Mine started with painful spasms that caused frequency. I was diagnosed with pelvic floor muscle spasms at first and then later on with PBS/IC. I had both bladder and pelvic floor problems and no one really knew which one came first. Muscle relaxers, warm baths with epsom salts, and pt helped with the pelvic floor problems. Diet, medications, prelief, and supplements helped with the bladder irritation. I have been pain free for quite a while now and have only been using the supplements and watching my diet.

                  Comment


                  • #10
                    Rope - I'm sorry, I don't know whether coming off the pyridium will mean more of a flare - from what I understand, pyridium only treats the symptoms, but if it was Dr. prescribed, know that you can also buy it OTC. It only provides temporary relief, (and when my flares are really bad I admit it doesn't really take too much of an edge off), but the rest of the time when I have something to do that's either prolonged or really important, taking AZO will help get me through it. Hopefully it will help you get through your day. BTW - you will develop a taste for pizza without tomato sauce, I promise!

                    Comment


                    • #11
                      Just an update to my new friends, I got a call from my uro's office today. The results for the three biopsies taken during my hydro. All came back negative for cancer but positive inflammation which the nurse said is a confirmation of the IC diagnosis. Happy about the cancer but still kind of bummed.

                      Comment


                      • #12
                        Originally posted by Rope_Wrench View Post
                        Thanks Donna for the cushion suggestion. Unfortunately for me a riding mower bounces around way more then the cushion could help. Driving a regular car is not a issue until we get on a dirt road. Again unfortunately for me I live one mile down a dirt road. This is only an issue if I have to go to the bathroom before we start up the dirt road going home. I will try to take it as easy as I can but it will be hard. Because of work and home life with a 4 and 5 year old, I can't slow down to much but I will try.
                        To leelee, when I see my uro, I will ask about a change of meds or maybe adding something to what I am already taking. The only meds I am on are VESIcare for the urges and Uroxitrol for the prostate. I am not sure if he will leave me on the Uroxitrol seeing the new IC diagnosis but my prostate is large for a person my age so we will see. To everyone I have started the IC diet stuff and have begun cutting out things. Biggest blow will be the loss of my soft drinks and pizza.
                        My question for everyone is what dose the first onset pain feel like? To me I feel the "spasms gone wild" that quickly builds up to the cramping feeling. Is this how it starts out?
                        Rope Wrench, you can still eat pizza, I order white sause with chicken from pizza hut and it's great.
                        IC diagnosis 3 weeks ago.
                        Vesicare 10 mg once daily
                        IBS and Gerd-Zegerid
                        IC diet
                        Elmiron 100 mg three daily
                        Hydroxyzine 25 mg at night
                        Amitriptyline 10mg at night
                        Diovan 60/12.5 daily
                        Topral 50 mg daily
                        Zoloft 100 mg at night
                        Klonopin .5 twice daily

                        Comment


                        • #13
                          Okay - so now you have a diagnosis, which is half of the battle. Say a little prayer that it isn't cancer, and get focusing on treating your IC. It is managable, I promise! (although I too have days when I think I must be the only person in the world feeling this crappy)..has the doctor got you on Elmiron yet? It has been very helpful for me (and it seems a lot of other folks on this forum). I'm just finishing month two and there has been a noticeable difference. Do the AZO when you need an emergency fix, and start to ease up on yourself! I know, you macho fireman have a tough time with this stuff, but taking it easy now might make a difference down the road. And if the Mrs. Is up to it, have her surf a few of the threads here. My hubby did and he said it gave him a much better appreciation of my issues....heating pads work well too for me as I get a flare by laying down. And I know I'm starting to sound like your mother, but diet, diet, diet, my dear - it really help!
                          it easy (hire a neighborhood kid to sit on your riding mower for a few bucks! You need to save your strength to fight fires!! Take care Rope!!

                          Comment


                          • #14
                            To greeneyes,
                            I tried the white sause pizza. Not bad but whooo, the garlic is a bit strong. Thanks for the heads up on the pizza.
                            To Aromanut:
                            I have not been put on Elmiron yet. I have an appointment in a few days and I am assuming it will be then. If it goes there, I hope I see a change as quick as you have. My wife has been looking up stuff on the net. She feels better having an idea of what I am dealing with and we both are concerned with what the future may hold fro us. The biggest thing we have talked about besides the diet (which I am doing) is the sleep issues. She has been worried for awhile now with me being so tired all the time and the changes in me from the lack of sleep. We are now planning on trying something kind of extream but at this point we are willing to try anything.
                            Just wondering what things have others tried to get some sleep when the normal stuff has not worked.

                            Comment


                            • #15
                              The sleep deprivation was the worst part. I had to use Ativan now and then. When my pain and frequency diminished I didn't need the Ativan anymore. Nothing else helped and I hated to resort to a benzo, but I had no choice.

                              Comment

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