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Dear all,
I have just read a newspaper article about Crohn's disease - which sounds awful too - but it mentioned that in the UK, there are 60, 000 sufferers with it whereas there are over 400 k with IC! Yet, Crohn's is SO much more well known than IC. Isn' t that strange? Wish they'd invest some research money into it (researching etiology and prevention especially).
HI
It proabbaly has do with the fact that IC mostly affects women.
But the other thing is I am not so sure more mainstream research would do us much good!!My friend has Chrohn's and another autoimmune disease and she has had all the best doctor's in Philadelphia and New York. She ended up with a hip and shoulder replacement!!!! because of "prednisone induced osteoporosis" She now goes to acupuncture in addition to using some drugs to keep things under control. My sister in law has Colitis and sees "the best" dr at UCLA (yes- she lives 30 minutes from Dr Brizman-sigh...) and has been on prednisone plus another serious drug for 7 months. NOw she is getting steroid shots for back and leg pain.
Bottom line- I am just so grateful I have found someone who has done the research and has the experience and ability to get me well from a more holistic perspective! Now if she only had more time to teach her methids to the rest of the world!
Deir, I completely agree....
That's why I think that they should focus on etiology and prevention - I certainly don't think there can ever be a cure from this perspective - it'll just involve treating symptoms of some sort. Sigh. I was reading today an article about cancer treatments (in the Daily Mail) - I've never even considered these things prior to this 'bout' with IC. It's opened up a whole new world (one I'm not sure I really wanted to enter...). Really awful stories about your friend and sister in law above - 'hip and shoulder replacement'? Yikes. Totally agree that DR. B. needs to spread the word - she is writing a book though.
I think that prevention is key - I asked Dr. B.
if my IC could have been prevented and she said 'yes'. It's astounding that this disease does not have to exist at all!
Argh! I know. When I think
Argh! I know. When I think back to being on The pIll and how crappy I felt in so many ways- sinus infectins, UTI's, no libido (ironically) mood issues, cavities. Why the heck didn't I get off? Because I never connected it because the dr's generally do not acknowledge so many side effects. This is a huge issue with Vaccine injury too. I try not to be a know it all but the one thing I "preach" against is The Pill because I wish someone had "preached" to me when I was 20 and dumb.
Btw- I hate to say it- but I have been doing better! It took 8 months to start to see some really obvious improvements.(there were small things but nothing quantifiable) Just a little bit of hope for you and others!! I have a lot more hope right now!!!
Deir
Deir,
I am so happy that you are doing better! I love reading all your posts, and I was sad that it was taking you a while to feel better. But I am glad to hear that you do, and it will give everyone hope that is waiting to feel better. It's hard to keep yourself going sometimes. I am on my 5th month, and the financial part of it is lingering in my head. I'm just trying to stay positive, and be thankful for the good job that I have, so that I can afford the appointments, and probiotics/herbs.
for some reason I can't edit
for some reason I can't edit this and I just need to say I am appalled at my typos and grammatical errors! LOL
Hey, Deir, fantastic news! I am delighted for you.
I was just wondering today when my constant bladder pressure will subside - two months in and getting impatient (lol!). I am so, so pleased for you. I can't WAIT to be in your shoes. How are you doing better, ie, what are your symptoms now?
I agree with Deir
I agree with you Deir. Look at all the walks, and fundraising they do for Cancer, and do they have a cure? I know everyone views medicine differently, but I believe that Dr. B has done her research, and has experience and that she is treating the root of our problem. I do wish she could expand her business, and her findings with others so that way it could be available to a lot more people. Also, it was so hard for me to find Dr. B, I think she needs to get more well known. And, it would be alot easier financially if her appointments, and herbs were covered by health insurance.
I do wish that this disease was more well known though, because it is not easy trying to explain to someone that is asking, "what's wrong with you?"
Unfortunately research
Unfortunately research community does not seem to focus on real treatment. The quest is mostly limited to surgical procedures or drug maintenance. What modern disease do we know of that found a 'fix it method' outside of surgery? I am not aware of many. Antibiotics were the greatest discovery. Nothing discovered since then. The two options discussed are pretty much available now. Some people go as far as removing bladder. There are also drugs that work for some people. We all are here because we were not satisfied with those options. Not sure how much research would help other than determining the exact cause of IC and finding a miracle drug to treat it. That doesn't seem to be the main goal of the researchers for some reason. Even with Chron's disease they don't seem to know how to reverse the cause. The treatment of Chron's disease comes down to alleviating symptoms, which is different from becoming asymptomatic.