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I can't believe it -- I'm not healthy any more!

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  • I can't believe it -- I'm not healthy any more!

    Hello to everyone!

    I'm called Miu, I'm 30 years old and live in Finland (the EU). I'm married and have a son who's 2,5 years old.

    I was diagnosed with IC a week ago. My symptoms started (and quickly got worse) a month ago. The doctors thought I had a normal UTI and I got the antibiotics and nothing helped. I also tried to self-medicate myself with cranberry juice and vitamin-C. Little did I know that I was actually making myself even more sick.
    After seeing a few doctors it became clear what I had: IC. I was devastated. I had not been sleeping more than 4 hours each night for a month. I was in pain all the time during the day and nights especially (does someone else notice an increase in pain while lying down?). I was starting to get really tired and depressed.
    I have a very allergic son who has not slept well ever since he was born. He has been waking up 5-30 times per night every night for 2,5 years now. I always thought that when he got a bit older I could sleep then (I am the only one who takes care of him at night). And now I have my own pains. I am also worried that my lack of sleep might have had something to do with me gettinc IC. For two years already I've told my husband that if I don't get to sleep soon my body will fail to function. And here we are.

    I am really worried of the things I have done to cause this. I DO NOT WANT TO BE SICK. I want to be pain-free like I was more than a month ago. Just normal, healthy, well. I am having a very hard time accepting that I have IC. I do not want to accept it.
    I have for all my adult life been very stressed. I try to avoid stress as much as I can but people around me do not share my concern on what stress does to my body. I've already had one ulcer and I have IBS (tho I've had no symptoms of the latter after my pregnancy with my son). People around me bring a lot of stress into my life by pressuring me to live like they want me to live. I am now very very sad and frustrated that I did not follow my own way.

    I am very mad and frustrated with the diet changes I have to make. My absolute favorites, foods and drinks, are: pineapple juice, chili, dark chocolate, red wine and champagne, tomatoes, sparkling water, bluecheese and brie/camembert. I am just worried that my favorites are actually partially responsible for this illness.
    I'm also a vegetarian and lactose-intolerant and this is why all these changes are quite challenging to me.
    I would willingly give up everything else except for red wine and chocolate. And I'm very angry that I would have to give them up for the rest of my life.

    I'm back to yoga now. I was so busy for 2 years that I had no time for it (been doing yoga for 8 years now). I'm mad now that I had no time for that either.

    Please tell me that I can have a glass of wine one day again, like normal people, like I was before. Or a lovely piece of chocolate cake. Has anyone ever been healed?

    Thank you for all the help and support you can give me. I am overwhelmed with all of this.


  • #2
    Hi Miu and Welcome to our great site here!
    Sorry to hear that you have IC. It's SO difficult to deal with and to admit that we have it and have to change our lives to deal with the symptoms of IC. Maybe if you follow the IC diet.....and take the IC meds you can live a more normal life.
    I don't think anyone has totally healed from IC but many are in remission and eating many more foods than they could before. I can eat a tiny bit of dark choc each day with out having a maybe you will be able to also.
    This is a great site to learn about IC and how to live with it.
    I'm sure all the stress in your life hasn't helped the IC. I've always thought all the IC in my early years is what brought on my IC. I'm doing MUCH better now with hardly ever a flare.
    Did your dr. put you on IC medication? Besides the normal IC meds there's Freeze Dried Aloe Vera and AZO that are both over the counter and help tremendously! So you might check those out.
    Good luck to you....and please feel free to PM me if you'd like! Take care.....Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


    • #3
      I am not food sensitive. I have always been able to eat anything without problems. Actually I tell everyone that is my problem. Because I can eat it I do.

      We are all at different stages. You will find lots of people that will support you here. Anything you have questions about just post. I know you are not the only person with that problem No question or concern is a "dumb" one.

      We can't share with you unless we know what you need. I'm not saying there is one "answer" but there are 100's of experiences. Just keep posting.

      I truly feel fortunate. My IC was diagnosed early, it is mild and my treatment is 100% effective.

      I know that one symptom of IC is lack of restful sleep. I sometimes need a little something. I take anti-seizure medication and when I need sleep I use a small does of an antipsychotic, klonopin. Lack of sleep can aggravate all problems, not just IC. Everyone deserves a good night's sleep.
      TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
      My Helpful Hints for Home Instillation:

      Institute of Female Pelvic Medicine (J. Dell, My MD)
      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


      • #4
        Hi Miu!
        I'm sorry you are feeling horrible and I understand your frustration. I too was under an ENORMOUS amount of stress when my IC hit. I thought I was healthy, but really, I wasn't. I was in SEVERE pain from Nov 06 until
        March 1 of this year when I got my diagnosis. I was devasted and posted every day looking for anyone who could tell me I would get better.

        I did get better.

        I followed conventional treatments with medication and also physical therapy. You have to have a good doctor to get your through these early days. From then on, I got myself a life coach nutrionalist and have gotten super healthy. I do not follow the IC diet - but I do eat whole natural foods. I drink tons of water and blueberry leaf tea and that is it. I believe at this point I could have a cup of coffee or wine, but I don't even want it. I can eat whatever I want, but I have chosen to stop putting artificial ingredients and chemicals in my body. I eat organic and whole. I am in remission and feeling better than ever. I have learned how to deal with my stress and am walk/running 5 miles a day, everyday with no pain. My next venture is to ween off meds, but I'm not ready quite yet.

        You will get better. First you have to believe you CAN get better and then take the necessary steps to get healthy again. On March 1st I was devastated and thought I would be like this forever.....thank GOD that wasn't the case!!

        Post here, people are awesome and will get your through a very tough time.

        Good luck!!


        • #5
          Thank you, everyone, for your support!

          Thank you for all your messages. I'm really feeling low and depressed. That would be sort of ok if my son would be ok. But he knows when mom is not alright and I can't keep pretending all day. I feel enormously guilty because he gets so upset when I'm unhappy. He's very sensitive (he's 2,5 years old) and I think he tries to take care of me altho I always tell him that that is not his role and not his job. Adults take care of adults, children are meant to be children and play and have fun. But of course this affects him too.

          My doctor was a bit odd, did not tell me that she was going to examine me and suddenly poked around. She also gave me this really strong sleeping pill which is meant for people who are psychotic (as I know learned afterwards from another doctor). I tried it once and I was completely unable to function in any way for 24 hours --- and I'm a stay-at-home-mom with a small child! I will never try it again.
          I got some prescription parasetamol and it helped last evening when I had a flare (I think from a small amount of smoked salmon I ate or ibuprofein -- I have the flu now as well).
          But no other medication. I do not like to use medication either, artificial ones either. I love the YOGI-herbal teas but I guess I can't drink those now either?

          Right now life does not feel like it's worth anything. I've always enjoyed food almost above anything else (except for my son). I am normal-weight btw if someone is wondering But I do love food. Especially the ones that are now forbidden.
          And I do understand on some level how stupid it is to be so fixed on food. What a riot Freud would have with me and my oral neurosis!

          I was just on a fieldtrip with other mom's and their children in a local forest and I had to leave because I was in tears -- there was nothing for me or my son (very allergic) to eat. And everyone else was just munching away. It felt so unfair.

          I have no idea if these Aloe Vera-things can be purchased here in Finland.

          Have the rest of you been able to go cycling or swimming? I really miss riding my pretty pink bike.
          Yesterday I decided to treat myself and go to a restaurant (have not been to one in months I think). The waitor got mad at me for taking such a long time to look at the menu. I tried to ask questions about the foods but she got even more irritated. I had no wish to inconvenience her so I just ordered something. And when the order came it had smoked salmon, parmesan cheese and tomatoes in it! The tomatoes I did pick out but...

          I am most grateful for your support, and most of all for the fact that someone who knows about this is listening. It's just useless to talk to people who do not know IC. It just makes me more upset and sad.

          Thank you.



          • #6

            I'm so sorry to hear that you got diagnosed with IC. It is hard to deal with the symptoms, but you are fortunate that you were diagnosed so quickly. I hope you get meds that help you symptom wise and also that repairs the bladder. Try the diet. A lot of people feel better by following the diet and avoiding "triggers". You may thing everything is a trigger at first, but as your bladder improves you will be able to eat more foods (hopefully). You really need to learn to reduce your stress because I hear that sends people into flares too. I'm sorry that you have had to deal with so much stress. I have seen how it bothers people, who don't have a chronic disease.

            Take care of yourself. Get meds. Get a low-trigger diet. I hope you feel better soon!
            [SIZE="1"][B]Be well, Alyssa :hi:[/B]



            • #7
              Soccermom32 -- about your diet

              Hi soccermom32!

              I wanted to ask about your diet, spesificly about what you eat. Can you give me any examples on what you have for example for lunch or dinner? I am really confused on what to eat right now. Do you eat dairy products, chocolate, tomatoes or fish/meat? I was a vegetarian before my diagnosis but now have been forced to eat meat since I am very confused about how to make my diet work for me. But I would not wish to eat meat, as good as it may taste.

              Finding organic food is quite difficult here in Finland. I hear you guys in the US have it better there, and I envy you. In Finland you can find a few products that are organic but creating a whole meal out of those is impossible. We also have a very short growing season and they import a lot of vegetables from Spain and other countries that do not quite understand anything related to "organic" issues. They use pesticides and others as much as they can.

              Had a really rough night, was up 'til 5 am with pain (went to bed at 11 pm). I was quite devastated last night. Having a hard time to fall asleep 'tho I'm really really tired.




              • #8
                Hi Miu,

                Welcome to the ICN, I'm so sorry you were diagnosed, but so glad you found us so quickly!!! Some of us have gone years and years without knowing why we were in so much pain. I had IC for about 8 years or more, maybe even since I was a young girl, without knowing that it was IC. It's very difficult not having a name for your pain, and not knowing ways to curb your pain.

                I until just last week had to take high doses of morphine to help with my pain, 120-180mg of morphine a day and I was still in pain! I just started taking Topamax and all of my pain is gone now! Also it makes me have no appetite so maybe that would help you too? Perhaps that is something you could ask your doctor if you could try and see if your pain goes away? That would be wonderful if it would go away that quickly and without narcotics wouldn't it?

                As far as foods go, there are lots of good foods you can eat and still be a vegetarian. You can eat rice, potatoes, white chocolate is okay for some, I can eat parmesan, I can eat brewer's yeast, whole wheat bread, beans, lentils, garlic, and nut milk, millet, butter made with millet.....and please check out the IC Diet cookbook found here on the website. Also I am putting together an IC Member favorite recipe cookbook that will be printed and for sale soon so that will be a good option.

                Hopefully others will pop in here soon and give you some good answers. Everyone here is wonderfully helpful. I know you will get lots of good help.

                Take care and hope you get some good rest!



                • #9
                  Hi Moonheart!

                  Thanks for your help! I am so tired all the time due to lack of sleep and the pain that it is an immense struggle for me to try to find out information about how to carry on and avoid causing more symptoms. My husband has been very helpful with this, he was the one who found this IC-network for me.
                  I also have a big exam at the univ coming and I'm trying to study...which is very hard 'cause I'm so tired that it's hard to remember anything I've read.
                  But thanks to my husband I'm at least coping. He's been really helpful and loving, altho I am afraid that the quality of his life will not be very good with me.

                  I now have new sleeping pills, I hope they will help.

                  I am really sorry that you have been in so much pain that you've needed morphine! I have a prescription for some kind of opiate meds but I don't want to use them.

                  I now hope that I will one day be painfree and perhaps one day they'll find a cure. If I think about the rest of my life without dark chocolate and good red wine I just feel deprived.

                  Thanks for your help! I will try the lentils to get my daily dose of proteine.