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  • IC for me too?

    Hello Everyone,

    I am a new member to the forum, after having been an active member on the IBS forum. But here is my story. I need to see what you all think.

    About a year ago I was hospitalized for a week with what appeared to be a nasty case of food poisoning. And since that time, my GI has been problematic (IBS). Have had multiple conoloscopies, CT's, SBFT's, etc. and I think we have pretty much ruled out IBD.

    Over the last several months, I have been noticing almost constant lower abdominal/pelvic pain with more frequent urination of much less volume. I am a male (41) and have had cytoscopy, urodynamics, ultrasound of prostate, PSA, etc. performed recently. They tell me my bladder muscles are weak. My urine stream has been less strong for a while. They tell me my prostate looks pretty good.

    The pain is like a burning feeling, like my bladder is full most of the time even though I don't believe that it is. My docs have not yet said cystitis. Does this sound like cystitis to you?

    Please know that over the last couple months I have been having drenching night sweats, along with difficulty in sleeping. Does anyone else get night sweats, guys?

    My Uro thinks I have pelvic floor issues and is sending me off to physical therapy.

    Now since I can no longer tolerate the pain, which used to subside somewhat toward evening, I am wondering what drugs the doctor can give me to alleviate some of these symptoms. Any help would be appreciated.

    This is really starting to control my life. Now I have to deal with this on top of the IBS. Thanks!

  • #2
    Hi funkyic...like the name...anyways .

    Sorry about all the problems you have been having. I cant say for sure that you would have IC. Has your uro suggest either a cystoscope with hydrodistention or a PST (potassium sent. test)? for me with my IC I have the pelvic/bladder pain, urgency and frequency. I also have the burning you are descrbing. Everytime I go to the bathroom it burns when I urniate. I also have the "gotta go" feeling all the time. Even when I have emptied my bladder and as soon as I am done I still feel like I need to go. I have had IC for close to 11 yrs now. And for me it took over 5 yrs just to get my diagnose.

    I find that Ultram for my pain works really well. But there are a bunch on here that it does not work well for them. What it is, is a non-narcotic pain med, but works with the brain like a narcotic would. One thing about it though if you take on a daily basis, like I do, and just stop it, you will have withdrawal symptoms similar to narcotic pain meds.

    I dont have problems with night sweats, but I do have problems with a good night sleep. Due mainly to have to get up a go to the bathroom.

    Have you tried looking at the IC diet and maybe trying this. It could help with your IBS to. Also alot of people with IC tend to have problems with IBS also.

    Again and I hope things start looking up for you
    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


    • #3
      This could well be interstitial cystitis if no bacteria has been found in your urine ... note that just plain "cystitis" usually means a bacterial urinary tract infection, so we differentiate ourselves here by using the full name, or just "IC"

      I would keep pushing for a formal diagnosis. Have you had a cystoscopy with hydrodistention under anesthesia? IC can hide from the in-office type of cysto, but signs that point to it can become apparent when the bladder is stretched. Now, patients are often diagnosed via the potassium sensitivity test... in this test, a solution of saline or water is put into your bladder via catheter, and drained, and then a solution containing potassium chloride is inserted. If the potassium insertion mimics your symptoms or causes pain, it's a good sign your bladder lining is damaged, and that points to IC. Note: They do put an anesthetic in your bladder after the potassium test so you won't be in pain all day as a result.

      You can also try the pelvic floor physical therapy your doctor has recommended in the meantime, since many of us here on the boards also have pelvic floor dysfunction along with our IC... they seem to go hand in hand, likely because your muscles tense up against the pain and urgency the IC produces.

      Also try the IC Diet if you haven't yet -- it's in our Patient Handbook at http://www.ic-network.com/handbook. This diet is an elimination diet that removes all sodas, coffee, citrus fruits, chocolate, and other things from your diet, as these can make bladder pain worse. It's tough to stick to in the beginning, but if it helps your symptoms, it can be well worth it.

      As for night sweats -- definitely talk to your doctor about that as it can be a sign of an infection brewing somewhere in your body or several other nasty things. I will tell you that I get night sweats sometimes but we do not know why, since every test I've had to date is normal.

      And on the pain question, have you tried things like Pyridium or UTA capsules? These are urinary tract anesthetics... they do turn your urine funky colors (Pyridum = orange, UTA = blue) but they can help many with that burn feeling. There are also antispasmodic meds that can help, some low dose antidepressants, and of course, opiates as a last resort. Check out the "Treatments" and "Pain" sections in the Handbook for a good, complete listing....maybe there is something you can try there.

      ****
      Jen

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. 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.

      Comment


      • #4
        Thanks All!!

        Wow, the responses are very quick and thorough. I appreciate all of you!

        I will print these messages out for reference when I go back to the Cleveland Clinic next week. Forget to mention that is where my GI and Uro docs are. So I feel I am in the right place to get to the bottom of all this finally. Yet I am still frustated at how slowly things move along.

        I have not had the cystoscopy with hydro under anesthesia, just the urodynamics when awake. The potassium has also not yet been tried. They also did an ultrasound of my prostate. These are good questions.

        Dr. Shoskes, my uro, felt all of my muscles were pretty sore down there, hence the physical therapy. I agree that I need to go forward with it too.

        I am thinking the night sweats could also be from an infection, or just the stress of all of this. But I worry about a form of cancer that has been missed. My wife used to have drenching night sweats from Non-Hodgkins Lymphoma...

        Am going to explore the IC diet. I would guess it is similar to an IBS diet.

        It helps to be able to talk to all of you, and get ideas. I feel like a veteran with IBS, but this IC thing is new (but equally disappointing).

        Comment


        • #5
          Hi Funkyic
          Sorry to hear of all your problems. Its not fun at all. But some of ito me sounds like most of us here though.
          I myself, an going threw some of the things your talking about. Now my doc also thinks I have the Pelvic Floor Dysfunction. ANd wants me to go to PT for it also. I also have a hard time to urinate, or to even start to go. And I am haveing really hard time lattly to empty compleatly. Some times i have to just come aback after a while and finsh going. I had been straining to try to finish to go, but its not a good idea to do it.
          After reading the read defination of the Pelvic Floor Dysfunction(web site is http://www.northshorelij.com/body.cfm?id=920 ...just copy and past this it will go right to it.) This also had info for men with pelvic floor dysfunction.
          IF your getting infections a lot,then maybe ask about precautions, I have been placed on an antibiotic for 6 months. Its really helped me a lot.
          Also you can get over the counter, Prelief, it helps with the acid in the urine. helps to control the pain also.
          And for one major thing people tell you to drink cranberry juice, DONT! if you have IC it wil just make it worse.
          IF you go for the PT, let me know how it goes for you. I am not sure if i will be able to go cos of my insurance, but wondering what they do for it.
          thanks good luck and take care
          stacy


          Current Conditions:
          Endometriosis,1995
          IC,Feb 06
          IBS-C

          Prenecious Anemia
          Stomach Ulcers
          Duodenitis
          Acid Reflux
          Low Blood Sugar
          Hypothyroid
          Migrains

          Surgeries
          Laporoscopy-1995
          Gaul Bladder-1996
          Laporoscopy-2005
          colonoscopy2005
          cysto/hydro-2006
          cysto/hydro-2007

          endoscope-2007

          Meds:
          Elmiron,100mg 2am 2pm
          Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
          Elavil, 150 1pm
          Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
          Prilosec,20mg 1am 1pm
          Zoloft,100mg 1 pm
          Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
          Reglan, 10mg, 1 3xday with meals-for duonditis
          Ultram 50mg 1 every 4hrs as needed for pain
          Pyridim,100mg as needed
          Vicodin 5/500 as needed for pain
          Heating pad
          Ice Pack
          Arthritis Pain Equate brand 650mg usualy 2 at a time
          Stool softeners w/stimuli, 2am 2pm[/COLOR]

          Hopefuly no more gets added to the list!!!

          I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
          Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
          My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
          When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
          Dont forget to take care of you!
          Take care

          Comment


          • #6
            Hi Stacy,

            I am starting PT this week at Cleveland Clinic. They already had me on the biofeedback machine to show me my tension levels, and they are high. They sent me home with 3 exercises. But this coming week is where we really get into it. I think my insurance is covering al of this pretty well, but one never knows until the bills come it. But I have already resigned myself to the fact that none of this will be cheap. But at this point, I don't care so long as I get answers and relief.

            It's funny what you say about Cranberry Juice. I have been drinking that nasty stuff lately because I thought it would help. I did take a couple Pyridium per a previous recommendation and so far, I notice some relief. I will look into Prelief.

            I worry about going on another antibiotic because I also have IBS and those meds really bother my GI. I have been on many antibiotics over the last year, mostly rifaximin, but also Erthromycin, Clarothromycin, and Levaquin.

            I'll keep you apprised of my PT progress and details, but I am also going to insist on some more positive testing to diagnose (or not) this IC. I don't look forward to being diagnosed with IC, but I need answers.

            Thanks,

            Rich from Indiana

            Comment


            • #7
              Hi Rich;
              Thanks for the info also. I also have IBS to. But i have it with constipation. The antibotic i take is just for the bladder its called Macrodantin, an i take 100mg. I Was also afraid to be on an antibiotic fo such along time 6 months is so long! but so far no problems.
              Ohh yeah about the cranberry juice, its got a lot of acid! if youjust have a regular urinry track infection, then it works great. But if it is IC, You have to stay away from acidic things. And cranberry is a big nono! alng with orange jucie and lemon and lime. I personly do not have much food restrictions, but i cant have any thing like orange juice, and deffinatly not the cranberry juice.
              The prelife is a good thing to try out for some it makes a big differance.
              Good luck, and i hope the pt wilhelp things for you.
              stacy


              Current Conditions:
              Endometriosis,1995
              IC,Feb 06
              IBS-C

              Prenecious Anemia
              Stomach Ulcers
              Duodenitis
              Acid Reflux
              Low Blood Sugar
              Hypothyroid
              Migrains

              Surgeries
              Laporoscopy-1995
              Gaul Bladder-1996
              Laporoscopy-2005
              colonoscopy2005
              cysto/hydro-2006
              cysto/hydro-2007

              endoscope-2007

              Meds:
              Elmiron,100mg 2am 2pm
              Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
              Elavil, 150 1pm
              Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
              Prilosec,20mg 1am 1pm
              Zoloft,100mg 1 pm
              Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
              Reglan, 10mg, 1 3xday with meals-for duonditis
              Ultram 50mg 1 every 4hrs as needed for pain
              Pyridim,100mg as needed
              Vicodin 5/500 as needed for pain
              Heating pad
              Ice Pack
              Arthritis Pain Equate brand 650mg usualy 2 at a time
              Stool softeners w/stimuli, 2am 2pm[/COLOR]

              Hopefuly no more gets added to the list!!!

              I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
              Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
              My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
              When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
              Dont forget to take care of you!
              Take care

              Comment


              • #8
                Back from Cleveland Clinic

                Hello again everyone,

                I am back from spending a week at Cleveland Clinic doing a lot of physical therapy. My therapist, Betsy, is very good.

                The PT does help. My pain is significantly reduced or even gone following the therapy. It does come back after a while because I have a bad habit of tensing my pelvic floor. My PT is training to teach me to not do this using trigger point release and exercises (mostly stretching). Most of my pain is on the right side of my body. Weird.

                The PT is rather invasive as it involved an extended DRE. Trigger points within the pelvic floor are pressed until the muscle loosens. I can feel this happening. External trigger points and muscles are also worked.

                I know this is not the quick fix, but it is also the least invasive and very holistic. Besides, my condition did not occur overnight. It has been progressive for about a year.

                I do feel like this is my best shot at ridding myself of the pain. I am tired of medications and all their side effects. I just have to stay committed to the PT and exercises.

                Regards,

                Rich

                Comment


                • #9
                  Just wanted to say I think these girlys have answered your questions pretty well
                  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


                  • #10
                    Hey Funkyic,
                    Sorry you are dealing with all this. I am glad the PT seems to be helping you. I hear Cleveland Clinic is suppose to be one of the best. I have a friend who her daughter goes there for her severe health issues she has and says they are the best. ( Geez, I wish I lived near cleveland )
                    I read about you getting the night sweats, I get the cold sweats actually. I can be in bed and freezing to death with awful chills, and yet I am all damp all over. Really weird.
                    Anyhow, Glad you found this site as there are lots of wonderful people on here. Hope you continue to get better.
                    Jen

                    Comment


                    • #11
                      Night Sweats

                      Hi Jen,

                      Actually, mine are cold sweats too. I wake up dripping in cold sweat. I towel myself off and try to go back to sleep.

                      Rich

                      Comment


                      • #12
                        That is great that the PT seems to be helping relieve your symptoms. Awesome. I hope it continues to helps more and more.

                        I just had to come read your thread when I saw your username - it is GREAT!
                        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


                        • #13
                          Originally posted by funkyic View Post
                          Wow, the responses are very quick and thorough. I appreciate all of you!

                          When I was diagnosed with IC I couldn't even pronounce the word. I had no idea what the symptoms were. I just happened to be referred to a urogynecologist by my gynecologist. He just happened to be a specialist in IC.

                          I didn't have any of the symptoms of IC before extensive pelvic reconstruction. Very soon after surgery I began to show the symptoms, but it started with the "walking musical farts".

                          My gyn thought he had caused the problems so he referred me to someone that he felt could solve the problem or could refer me to someone who could.

                          I think most of the experiences with IC are just glazed over and that leaves most of us needing to feel we are not insane but IC normal. You will always find support here.
                          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


                          • #14
                            Hey Rich.
                            Wow, I thought I was the only one who had those cold sweats. I wonder what causes that. Maybe it is just the immune system doing it. Anyhow, sorry to hear you have to deal with that too. I guess though out of all my symptoms, that one I can tolerate. It is the severe relentless pain that I have all the time That I cant deal with.
                            Anyhow, I hope that with the PT you get better and better. I am glad you found this site as it was a godsend for me.
                            Jen

                            Comment


                            • #15
                              Cold Night Sweats, Bladder Retraining, etc.

                              Not sure what causes the cold night sweats. Could be that the body is just worn down and it causes some sort of hormonal imbalance. When I am worn out, lots of strange things happen with me.

                              My doctor started me on Elavil a few days ago (low dose) and my night sweats seem to be resolving. I don't know if this is the placebo effect or if it is really doing something. My guess is that is makes me drowsy (taken a couple hours before bed time) and it allows me to get the deep, recuperative sleep that I have been lacking for so long.

                              But through all of this, I am determined to the balance in my life that helps me to help myself become as healthy as I can be. I think I have let life run me over for the past year and now it is my turn to shine.

                              And yes, you guys are all great. It is nice to know I am not alone. Because when I am at work, I do feel I am the only one with this problem. Mr problem seems to be exacerbated by urinating in public, like in a line of urinals. I am envious of those around me who can urinate with high pressure and infrequently too. I am always the first to go the the restroom and the last to leave. Not fun.

                              How does everyone feel about bladder re-training? Is it healthy to resists the burn to urinate and only go by the clock? Can that make matters worse?

                              Rich

                              Comment

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