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AMP
09-18-2005, 03:19 AM
Hi all! I just joined here the other day, and I thought that I would share my story:
For most of my life, I have had some level of urinary and digestive problems. I can remember as early as the age of 10 or 11 having burning and frequency problems that I was too embarrassed to tell anyone about. They would pass, so I just put up with them. When I was 27 I saw a urologist for the first time. At this point I had been treated for numerous UTI's, and my doctor recommended that I see a Uro. Well, he did an IVP and cysto and said that he found nothing wrong mechanically other than the fact that my urethra was very swollen. (I thought I was going to die when he did the cysto.) He put me on Septra, telling me that I should take it daily to help ward off future infections. I did as was told, but had pain regularly. Sometimes I was sure that I had an infection, and could not understand why since I was on antibiotics every day. There were times where a few months would go by where I was pain-free, but then I would have times where the pain was constant. Last fall, 13 years after those first tests, the pain got so bad that I felt that I could no longer function. I went to another urologist. He did some tests and diagnosed me with IC. He immediately put me on Elmiron, but after a month, my primary had to take me off of it due to nasty side effects. Since I am very sensative to any sort of drugs, I resisted taking anything else. I began to follow the IC diet religiously and have found that to have helped a ton. Other things that I have found that seem to help me: 1. When I start to flare, I try to sit down and relax. I have found that standing for me can bring on bladder pain if I am on my feet for too long. If I can sit and concentrate on relaxing my pelvic muscles right away, it seems to help. 2. I try not to drink too much when my bladder is upset. I know that water is supposed to dilute the urine, but I have found that for me adding too much water seems to make me have to urinate more and that just brings on more pain. 3. I try not to empty my bladder too often. If I know that I just did a short time ago, I fight the urge to empty again; doing so just causes pain when there is not much unrine there. 4. When the pain won't go away with relaxation, I will lay down with a heating pad under my bladder. I have a heating pad that has a massager in it. I don't use the heat; I use the massager. Somehow this seems to lessen the pain. If it is really bad, however, this can make it worse. 4. If all else fails and I can't deal with the pain, I have davocet.

One of the things that I always did was take vitamin pills. After reading about IC, I stopped them. I used to take a multi vitamin and then extra vitamin C. I tried again, when my bladder was feeling pretty good, to take a multivitamin. Bad move! I started a flare-up. I would love some words of wisdom from others about your experiences with vitamins.

I would also love feedback from some of you on other diseases. I have read that people with IC often also suffer from other diseases. I have had migraines for years. I am on Protonix for acid reflux disease. I am seeming a GI doctor for possible IBS later this week. Has anyone ever been giving a reason to explain the link between these disesases? If so, I would like to hear it.

Well, I have other questions, but I need to go now. I look forward to your thoughts. Thanks!

vm
09-18-2005, 04:36 AM
Thank you so much for sharing your story! :) Sounds like you are very motivated and creative in finding ways to help your IC since you are sensitive to so many meds.

There is info in the ICN Patient Handbook: www.ic-network.com/handbook about vitamins - which seem to be "safe" and which do not. I know a lot of people here take a children's multivitamin and seem to do OK.

Amyinagony
09-27-2005, 03:59 AM
Hi AMP,
Welcome, So glad you found this site, AND so glad you were able to find what works for you, since you are so sensitive to meds. Fantastic news!!
I was told the same thing about having IBS, PFD, migraines, allergies and GERD (acid reflux disease) as being common things to have with IC. There was no explanation as to why, just common.

bama_girl1979
09-27-2005, 04:17 AM
I have also had migraines for the past several years........it was actually a relief for me to find out that this was common with IC. Now, instead of having lots of little things wrong with me, it's just one big thing, and somehow that makes me feel better.