Long Interstitial Cystitis Remission Ends

Chronic – I hate that word and I hate what it means. Every time I find out I have developed yet another chronic illness, it is just another slap in the face of how I’m going to have to live the rest of my life with yet even more problems.  The word  means being doomed to a lifetime of medications, side effects, and more chronic illnesses from taking medications to treat the current chronic illnesses.  It’s a maze I can’t even fathom getting through even on a good day.

I know that I do not talk a lot about the fact that I have Interstitial Cystitis on this website, even though I was extremely sick with the illness for a few years.   Again – like CFS & Fibro, I believe that I always had IC, but just not a severe form until it got really bad in 2003.  I was always having bladder and urinary issues from the time I was a child up until I was diagnosed.  When my body starting shutting down in 2003 was when I began having the severe symptoms that left me lying on the bed writhing in pain in the fetal position.  I was barely able to walk more than a few feet because the pain & pressure were so severe in my lower abdomen and vaginal area. I was going to the bathroom up to 60 times a day due to all of the pressure as well.

I did not respond well to any of the treatments the urologist had me on and I was even catheterizing myself daily with numbing medication directly into my bladder to try and get some relief.  I didn’t go into remission from the Interstitial Cystitis until I started receiving the IV therapy from the Fibromyalgia & Fatigue Centers in Philadelphia in 2005 – 2006.  From that point – up until the past month, I have only had mild flares of my Interstitial Cystitis for a few days here and there, nothing too earth shattering to get upset over and nothing really life changing.

Ever since I became sick with this sinus problem the other month, I noticed that my bladder was acting up again and pretty bad, too.  The doctor checked for a bladder infection but found that there was no bacteria, so it was from an IC flare.  I assumed that because I was sick, I would get over it quickly and that the infection was working it’s way through my bladder, as sickness sometimes does for those of us with IC.

But the longer time goes the worse it feels the flare is getting.  I am drinking water like crazy trying to keep the burning in my lower abdomen and pelvic area to a minimum but it is getting unreal.  I am starting to find it difficult to walk very far because of the pressure and I fear that if I don’t get this under control somehow, someway very soon, I will be in really bad shape to where I won’t be able to walk more than a few steps at a time.

When you go through a remission for that many years, the depression sets in when the chronic illness comes back and takes over your life again.  That’s why I hate the “chronic” in everything that I have – it’s like it’s always there, lurking around the corner, just waiting to jump out at me at any time, anywhere.

I have three months until we go on our cruise and I have to have myself in good shape by then.  I have worked so hard over the past several months to try and get my health on track, harder than I ever have before.  But that doesn’t matter to chronic illnesses like Interstitial Cystitis.  They will come in and take over whenever they want, however they want at any time.

I haven’t been to a urologist for four years so if I don’t get this under control and in remission soon I will have to get back to him to get put back on Elmiron.  Elmiron is a medication that I took for IC before that helps to coat the lining of the bladder wall.

I am also trying to drink at least 5 – 6 bottles of water a day and I bought some marshmallow root from the local health food store.  Marshmallow root can be made into a tea and it helps to soothe the bladder and it helps with the pain and burning a lot.

I have a great deal of information on Fighting Fatigue about Interstitial Cystitis.  If you or someone you know suffer from this illness, you can click the link below and it will take you to the IC category:

Interstitial Cystitis on Fighting Fatigue

 

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Comments

  1. I was diagnosed with IC 2 1/2yrs ago and treated periodically with heparin,
    sodium bicarbonate & lidocaine bladder installations. These have helped
    as well as diet, marshmallowroot tea, cutting way back on saccharin(diet
    coke, my favorate) and caffeine as well as tomatoes and citrus. The best
    help for me is taking 1 tsp. of either baking soda in 1/2 glass of water
    daily or only 1 tsp. of organic cider vinegar in water. It seems to settle
    my bladder down immediately. Also tried cystex 2 daily for 3 days occas.
    I really am greatly improved. I drink lots of water. Am able to tolerate
    milk and ice cream as well as apples, pears and bananas almost daily. I do
    exercise daily and walk as much as possible. Did I mention I also have
    fibromyalgia? My greatest aid has been B complex sublingual vitamins
    every morning as well.

    Hope this helps someone.

  2. I just want to say that I’m sorry that you are going through so much pain. I was diagnosed with Interstitial Evil Cystitis 3 years ago. The first year I lost 30 pounds just from not eating much; only what was listed on the acid free food chart. It did get better and for about a year and a half I ate pretty much whatever I wanted, I did stay away from foods that had chemicals. I was doing really well until I became sick with the flu or something this past Christmas and ended up in the emergency room being pumped with IV fluid and medication. The doctors took a blood and a urin sample and told me I had a UTI because there was white blooc cells in my urin. My bladder was not hurting at that time and I knew that I did not have a UTI, and found it very strange that there was white blood cells in my urin. They gave me an antibiotic for UTI, but I didn’t take much of it. As I begin to get over the flu I noticed that my bladder started to hurt, so Back on the acid free food again. I did go to the doctor to see if I had a UTI and didn’t. I asked why the emergency room lab found the white blood cells if there was no infection and she told me that the bladder was irritated. I am trying to get my body back to an alkaline state so that my bladder will quit hurting, but it is not happening very fast. I have spent the last two months sitting on a heating pad and crying. I have never taken medications for my IC, but this time I’m trying an antacid, which is helping, but has not relieved the pain completely. The only good thing about IC, which I despise, is that it helps me to loose weight. I think I would rather be fat. I wonder if when something triggers a flare up and we have to stop eating as much as before that the toxins that are stored in our fat cells release them and they are flushed out through the bladder. So until we level off with the weight and the body detoxes the bladder will continue to hurt. That is just my theory, but I really do believe that is what is happening with mine. I lost 30 pounds before it got better the first time, but then gained most of it back eating all the things I should stay away from. Now I wonder how much weight will be lost before it quits hurting this time. Anyway, that is a theory. I believe the best thing us IC sufferers can do for ourselves is eat as all natural as possible. That is when I felt the best and that was without medication. I hope you feel better soon. Pull up the alkaline-acidic food list and try to stick the alkaline foods. I would stay away from fruit until your bladder calms down. I feel your pain and I will be praying for you. I hope you are not as depressed as have been. If, so just ask the Lord Jesus to help you. I could never make it through this without His help. And one day I pray that He heals me.

  3. My story is almost the same as yours…I was in remission for 9 years!! I am seeing a Neurologist for a nerve pain in my mouth (we don’t know what it is yet) ..All the meds I’m on for my mouth have made my IC flare up!!!!! I feel like I’m losing my mind with pain in 2 places. I’m glad I found you ladies who understand……I’m so depressed right now…..

  4. I had severe IC for 2 years, and had to quit a job I dearly loved. My urologist told me that I had the smallest bladder he had ever seen, and more scars than he had seen in 30 years of practice. He gave me 30 botox injections in my bladder, and after taking Elmiron orally,and it tearing my stomach up, I began giving myself rescues at home, twice a day. I don’t know if it was a cumalation of treatments and low acid diet, but I have been in complete remission for 3 years now. I do not take this for granted, but can only pray that IC doesn’t return .I was urinating 60-80 times during the day, and up every 10 minutes at night. Never give up!

  5. I’m new to ic and was wondering if anyone tried to cure it naturally with just exercise pt and herbs? I’m at work right now and am in such pain. I heard symptoms could be controlled is that true?

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