UPDATE- I have a page you can go check out with more info.

Interstitial Cystitis, not easy to say So we call it “IC” a lot simpler. I have noticed a lot of people searching this subject and ending up at my site to read my past posts. So I am going to do an update on the subject today. Reason for this is because I am having a bad flare up again.

Since last week when my sciatica nerve acted up it also started up my IC. I thought that it might go away after a day or two, but it has only gotten worse. I think its also related to the fact that I am getting a bit stressed about my dad’s condition. I know he is going to be gone any day now and its hard to think about much else.

So, what are the symptoms of IC? First you might think its a bladder infection. It does feel similar. You feel the need to pee constantly. Even when you have just gone. When you pee it’s painful. It burns on the way out and as the urine moves out of your bladder, the bladder starts to feel like its throbbing. There is a medication you can take to help with this pain. In Canada you can only get it from the doctor. As far as I know there is no over-the-counter pill. (In the USA its called “Uristat”).Ask your doctor for a pill called “Pyridium” (phenazopyridine). This pill is red and about the size of a smartie/M&M. You feel a difference within 30 minutes of taking it. Take it and drink a big glass of water with it to help it move through your system and into your bladder as fast as possible. Now the next time you go pee dont get worried about the bright orange color. LOL…its just the dye from the pill. It helps you to know when its in the system and when its gone. When your pee is back to normal that means the pill is out of your body. One pill will last up to 4 hours depending on how bad your IC flare-up is. I find that when mine is really bad I need to take another pill at 3 hours. Its best not to over do it on these pills. I have taken up to 5 in a day for 6 days in a row, but that was when my IC was at its worst. There are other symptoms like low back pain and all over body aches. For me its hard to tell since I have all over body pain on a daily bases. I do notice that my lower back and pelvic area hurt far worse when I flare-up.

There are many medications that help treat IC. I had to go through a number of them till I found the right one for me. The most common pills given for IC are antihistamines and antidepressants. I’ve used both and found that they both worked, but the antidepressants stopped working after a year. I now use my little green pill called hydroxyzine. This has been a life saver for me. I usually only need to take one pill before bedtime but on flare-up days I take one in the morning too. I’ve been on this pill for about 4 years now. As I understand it from what my Urologist has said, I am one of the lucky ones that this works for me. I guess it has no effect on certain people.

There are some things you can do to help prevent a flare-up or to lessen the pain. I have experimented a lot with the things I eat. I noticed that there are foods that will trigger my IC within 20 minutes of eating it. These are a  few.

  • Spicy foods
  • alcohol
  • tomatoes (except roma)
  • caffeine
  • aged cheese
  • milk chocolate
  • apples
  • any citrus fruits
  • cranberry juice

Those are the main offenders for me. There is also  MSG. Anything like BBQ sauces and dressing that have vinegar in them. And for some unknown reason I cant drink tap water. Could be that the chlorine is the problem or the fluoride. Not sure, so I drink bottled water. I have also realized that wearing tight non-breathable clothes or things that will make my body temp go up, will cause a flare-up. The worst thing out of all the ways a flare-up can start would have to be STRESS. Dont get stressed! I will say this again, dont get STRESSED. Stress is a major symptom for most IC sufferers. As long as you let stress into your body it will keep your IC in active mode. I know its hard not to be stressed in life. I have found a way to deal with it. I know when its coming and I let it into my brain, think about it for a few minutes and then shove it to a corner and deal with it if it really needs to be dealt with. A lot of times there is really no reason to be stressed out about stuff. Little things like “I forgot to take something out for dinner and we are having guests over” is really NO BIG DEAL. Just order in a pizza or go out for dinner. Its not worth a flare-up.

I’m trying to think what else there is I can tell you, but I think I have covered most things. I’m no expert in the subject but I have had this for over 10 years now. The best advise I can give to you if you think you might have IC, is go see a Urologist and have them do all the tests. I found out on my own what was wrong with me by searching the internet. When I finally did get to see a urologist he was very surprised at how much I knew about my condition. He did all the tests any ways. I think the most help I found was on this site “IC-Network“. There are many other sites out there but I think this one is the best.

There are a couple helpful tips I can give you.

  1. If you can find it, there is a pill called “prelief”. Take these pills before you eat and it will help cut back acids in food. It does work, I use them. I havent been able to find them in Canada so I head across the border.
  2. When you feel that constant urge to pee, have a bath and let your bladder muscles relax. Yes you will pee in the bath, but it will help relieve some of the discomfort. You can also add baking soda to the bath to help with the itchy feelings you might have in that area. No bath oils or anything with fragrances.
  3. avoid foods with nitrates in them. Like lunch meats, pepperoni sticks things of that nature.
  4. Also no dark colas. Try to drink diet drinks that are clear. If you really feel you need a soda.
  5. Aspartame is a really bad one too. I use Splenda. It seems to be ok for me. I can handle Aspartame but I try to avoid it as much as I can.

Ok..I think that is about it. If I have missed anything please comment and I’ll help you if I can. Just remember, its not the end of the world if you have IC. There are ways to live with it. I have gone up to 8 months with no flare-ups. So it can be controlled.

11 comments on “Interstitial Cystitis

  1. Dental Websites

    Wow, I have never heard of this before. It doesn’t sound very good, but you make it seem like it is not too bad.

  2. purpledragonfly Post author

    Oh it can be very very painful, But I have just learned to live with it as best I can. Because of this problem I am not able to work. It is a very serious problem and can be very disabling to many people. There are days that I live in my bed because every movement hurts.

  3. Carol B.

    I just found your site, I have been in agony for days, having the urge to urinate constantly and now it feels like my bottom is coming off. No infection…just this urge and pain. I think I have what u are talking about and I am going crazy…I started takingthe pyridium and it did help, so I felt a little better and stopped and now the urge and pain is very severe..I am so discouraged…tell me it will go away and I will feel normal again…

    carol, ontario

    1. purpledragonfly Post author

      So sorry to hear that you are pain. Keep taking the pyridium. It will help numb the bladder. You should go see your Doctor and get him to send you to a Urologist. It does get better but you need to find out exactly what you have. Have all the pee tests done to rule out any infections you might have. You need to watch what you eat. I know it hurts, but once you get it under control it gets a lot better. I have been pain free for 3 weeks now. So there is hope!

  4. Cameron Rogers

    i read somewhere on the internet that long term consumption of Aspartame is not really good for the health. `-;

  5. Libby

    I have found Arnicare is a Miracle Drug for flares!! It is an all natural topical gel that the pharmacist at wal greens gave me. I just put it all over down there. It burns like all get out for like 30 seconds, but then it numbs you and takes the pain away!! It is AWESOME!!!

    1. purpledragonfly Post author

      I guess that would be fine if most of your pain was on the outside. But most IC pain is in the bladder and I know I wouldn’t want that stuff up inside me. 🙂

  6. andrea nash

    hi there i have all symptoms of ic but had two cystoscopys but not with hydrodistenion shuld i get tht done ad othas hav been normal even gad urodynamics done all nornal all pelvic dcsns normal.What next up the otha end?

    1. purpledragonfly Post author

      Are you on medication to help with your symptoms? That would be the next step I would do. Get meds to help control it.

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