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  • Newbie: My story

    My name is Gail. I live in Minnesota. Back in 1997 I was having terrible bladder symptoms. Urgency and pain. Went to the doctor 6 times and the emergency room twice...thats how bad the pain was. They kept telling me I didn't have a UTI and to go home. No one would listen to me. Finally the clinic gave up and sent me to Rochester, MN to the big Mayo Clinic. I saw a specialist who did the camera thing. When I went back for results he told me I had IC. My bladder walls had completely deteriorated. The exposed muscles were causing the urgency and the exposed nerve endings were causing the pain. I passed out twice on the way to Rochester when we stopped at a rest stop for me to visit the bathroom. Finally I had an official diagnosis. It wasn't all in my head (or caused from stress as one dr tried to tell me). I was put on Elmiron, Atarax, pyridium, oxybutrin, elavil and B&O suppositories. After 6 months of pain it went away. Unfortunately about 6 months later it came right back, but at least this time I had some information and what to tell the dr. I have had a few bladder distillations...some worked. The last one did not. I have a urologist that has absolutely NO bedside manner..would not give me B&O suppositories. I went to my primary care doctor. He is an older doctor and had dealt with several IC patients. He gave me everything I asked for. I'm flaring bad right now..but I just got the B&O suppositories as no one in 2 states carried any. They are so hard to get..no one carries them. But they are the only thing that even remotely helps. Doesn't take all the pain away..but makes it a little more tolerable. This has been a crippling disease for me. My husband is so understanding...he knows when I'm flaring that I am in terrible pain and keeps the house up and does the cooking. So many years I kept telling the doctors it wasn't a simple UTI...no one would listen. I felt relief when I finally could put a name to this. I am so thankful I found this network. I dont feel like Im crazy...there are thousands out there going thru the same thing. Everyday I hope, this is going to be the day I make it thru the whole day without pain. I just keep praying maybe it will be tomorrow. In the meantime I take all my meds...hot baths once an hour (my only saving grace), but the relief doesn't last long. I am confused....my urologist said walk every day that would help...but I walk at least a mile (sometimes more) and exercise for an hour and wonder if its doing more harm than just resting and not juggling things around. If anyone has ANY things they have tried, please please let me know. Willing to try anything to get back to somewhat of a normal life. Thank you all for being there...until I found this site I felt I was suffering alone. Gail

  • #2
    Hi Gail

    I'm sorry you're in so much pain. I really can understand. I read your post and wondered if you are on the IC diet. Our stories are very similar except that I would have symptoms 3-4 times a year for at least 15 years before last Oct when the symptoms started again but never (haven't yet) stopped. I truly believed that with the pain I was experiencing a simple diet couldn't make any difference. So it took me a while to quit fighting it and start following it strictly no (almost no) cheats. When I do eat something that I know I shouldn't my pain skyrockets. I definitely know the difference.
    Also, when I'm in a lot of pain (like right now) I LIVE with my heating pad on my bladder and a frozen bottle of water between my legs. I'm not sure why the water bottle helps but I don't question it, I just do it. I know you have a lot of meds but have you tried Azo? I never thought an OTC could help me as much as that does. I have to be careful with it because you're not supposed to take it everyday. But it does seems to, in combo with my my Rx's. I'm still in the process of trying to find a treatment plan that works for me. And it's been very slow going as I had to weed my way thru several uros and 1 gyno that just didn't want to take the time to treat my IC. Hopefully, I've found a doc now and we will get things moving in the right direction. I just say that to let you know that your uro works for you. And if he's not willing to help you, your responsibility is to yourself to fire him and find someone who is willing. I know sometimes living in a small town that can be difficult, but not always impossible. Take care of yourself and I hope your pain eases soon.

    Sorry, I just reread your post and saw that you are taking pyrdium. Skip the azo info.
    Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
    Lexapro-20 mg
    Aciphex
    Ambien-as needed
    Percocet-7.5 up to 3 per day as needed
    Valium-10 mg x2 per day
    Phenergan-1 at night
    Prelief w/everything
    Now recovering from acute pancreatitis

    Currents treatments that help somewhat:
    Heating pad
    Hot baths
    Ice
    Being VERY still while lying down with legs elevated

    Comment


    • #3
      Exercise or Stay still?

      I see that you sit and relax during a flare. My uro told me to walk to help. I'm wondering if I'm doing more harm than just sitting still? I don't want to do anything that aggravates it more than it always is. Oh wow, the B&O must have kicked in...the pain is not gone, but certainly not to tears as usual.
      But, I only have 10 left...although my primary said he would authorize 2 more boxes. God love him. For some reason doctors (like my uro) don't want to give them out. I think they see Opium and go ballistic thinking no no. But its only 30mg. My problem is they are almost impossible to get. No one ever has them in stock. I don't understand...if they work, why not let the patient be as comfortable as possible.
      I just started on Prelief when I found it at the drugstore waiting for my suppository to be filled. I haven't checked out the actual IC diet, but the doctor told me to stay away from coffee, soda, tomatoes, orange juice (anything citrus). Right now though....it doesn't seem to be making that much of a difference as I have been in pain so long I've lost my appetite. I've lost 25lbs since Christmas. Good for the waistline, but hoping today will be the day that I can stay up all day and join the living world again.

      Comment


      • #4
        Hi Gail,

        to the ICN!

        Boy, I sure could relate to your post. I tried doctor after doctor for years trying to tell them that something was horribly wrong with my bladder only to have them look at me like I had three heads. -Or brand me a nut-case. Or drug seeker. Or? Terribly frustrating! Like you say, it was such a relief to learn I was not crazy. (I was beginning to wonder myself!)

        I, too, wondered if you have tried the IC diet? Here's a link to the diet pages: http://www.ic-network.com/diet/ The link on that page, "IC Diet at a Glance (Cheat Sheet)" takes you to a list of items categorized by how well they tend to be tolerated by those with IC. It was a life-saver for me. While not all flares are triggered by diet, for me diet was a major cause for the pain I'd been in. That one change made a huge difference.

        Again, welcome to the site. I hope you find some lasting relief soon!
        Vicki
        "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

        Comment


        • #5
          I can understand the weight loss. I've lost a LOT of weight that I didn't really have to lose since Oct. I haven't used the B & O supps but you might try to find a compounding pharmacy. I think some people have had luck with that. They're not your usual pharmacy, like Walgreens or whatever, so you may to really look for them and call around. If not, I know that if I give my pharmacy a heads up, they can usually order a medication for me so they can have it when I need it. I usually have to tell them about when my refills for oxycontin are coming up. It really helps.
          As far as me "resting", yes, I have unfortunately had to spend a LOT of time in bed. It seems as though ANY vibration of my bladder hurts so bad, it's just not worth it due to pain and spasms. Although, some people say that mild exercise really helps them. Everyone is different so I urge you to find what works for you.
          And also, check out the Diet page. There are a LOT more foods that can cause problems besides the ones you listed. If you see something on Caution list that you normally eat, you might cut it out and see how you feel. Right now, until I can get an actual treatment plan going, I'm sticking almost exclusively with the Safe foods.
          Good luck and I'm glad your pain is receding.
          Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
          Lexapro-20 mg
          Aciphex
          Ambien-as needed
          Percocet-7.5 up to 3 per day as needed
          Valium-10 mg x2 per day
          Phenergan-1 at night
          Prelief w/everything
          Now recovering from acute pancreatitis

          Currents treatments that help somewhat:
          Heating pad
          Hot baths
          Ice
          Being VERY still while lying down with legs elevated

          Comment


          • #6
            Try to find a compasionate uro and downlosd the IC diet and stick to it and you should get some relief. I wish you the best and pray things get better for you.
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            Comment


            • #7
              gail i know exactly how you felt about going to tons of drs and being in SO MUCH PAIN,them telling you ''oh its just a uti" or we cant seem to find anything wrong with you and looking at you like you were crazy. i am a newcomer to this forum. i posted my story on the newcomers section.my solution was finding a compassionate gyno/urologist who would take the time to listen to me. he is helping somewhat but i am still in pain and hate having to take the prescription pain meds all the time.i will pray for you.
              Last edited by flowerangela; 02-07-2011, 08:05 AM. Reason: needed to add more.
              Newly IC diagnosed as of February 2011.

              Medications I'm on that seem to work:
              Zoloft- one once a day
              Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

              Failed Meds:
              Elmiron-after 4 months,digestive side effects got to be too much
              tramadol-allergic
              DMSO treatments(5-6)
              probiotics

              THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
              AROMATHERAPY-candles,incense
              Village Naturals Aches and Pains Peppermint Bath Salts
              Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

              ACUPUNCTURE/HERBS
              Significant pain relief so far.

              MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
              ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

              Add me on facebook Angela Hasic

              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
              Lord, make me an instrument of your peace;
              where there is hatred, let me sow love;
              when there is injury, pardon;
              where there is doubt, faith;
              where there is despair, hope;
              where there is darkness, light;
              and where there is sadness, joy.
              Grant that I may not so much seek
              to be consoled as to console;
              to be understood, as to understand,
              to be loved as to love;
              for it is in giving that we receive,
              it is in pardoning that we are pardoned,
              and it is in dying [to ourselves] that we are born to eternal life.

              Comment


              • #8
                Gail, I know how you feel. I've lost weight too, but it has helped because my bladder is pressure sensitive, so tight clothes are not possible. The installations never helped me either. Walking really aggravates my IC. The only thing that helps with the pain and flares is a pain pill and lying down. Warm baths are helpful, and using a heating pad. You're not alone. I hope you find a dr.

                Comment

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