MySpace Sale - Fight Against Chrones - Pls Read!

Caroline · Post by **Caroline** » Thu Aug 09, 2007 6:28 pm

hi everyone,

for those of you that use myspace, my profile picture will look a little different. http://www.myspace.com/hihicaro

as some of you may or may not know, my little sister was recently diagnosed with chrones disease. there is no cure for chrones- it is a chronic illness.

i have a large collection of vintage marc jacobs that i am selling towards the fight to a cure for chrones. my goal is to raise $1,000 in two weeks. 50% will go to CCFA.org and the other towards my sister's care. i will continue to sell my wardrobe until i reach this goal. please feel free to share my info with others who might be interested in the clothing. everything is brand new, with tags, or has only been worn once. i do not really have the time to post things on ebay or elsewhere, so this is the easiest option for me.

if you would like to make a donation directly to CCFA.org, or for more information on chrones, please visit:

http://www.ccfa.org

please pass this along to anyone who might be interested in the clothing, or donating... i really appreciate it... just drop me a line at myspace, or at keiko14@att.net - thank you for reading!!

caroline

ZombieBunny · Post by **ZombieBunny** » Thu Aug 09, 2007 7:39 pm

I'm really sorry to hear that hun.

My thoughts are with your sister and your family and I'll be happy to donate for your sisters care.

Keep me posted...

Wolfette · Post by **Wolfette** » Mon Aug 13, 2007 1:25 pm

Hi there,

I am sorry to hear that your sister was diagnosed with Crohn's disease. However, it is really not as devastating a disease as it was even 10-15 years ago. Back then, the majority of cases were not even diagnosed until it was necessary to perform surgery and most patients wound up with colostomy bags. Nowadays, there are multiple medications on the market to make this disease a lot more manageable.

If your sister does not respond well to the first medication the doctor prescribes do not hesitate to ask for alternatives. Believe me, they are out there. If, like me, she typically has mild to moderate symptoms .. she should be able to get by with Pentasa for medication, with possibly some steroid treatment to help it out at the beginning. I have been on Pentasa for over a year now, and have had *very* good success with it. I just hope she has insurance - the price is outrageous if not. O_o If I had to pay full retail, it would be in the neighborhood of 500.00/mo. for the basic medication. What's worse, my parents recently moved to Mexico and they have generic equivalents for this medication that are just not available in the USA. Gotta love the big pharmacutical companies.

If she has moderate to severe, it could require a more potent drug to help keep it in remision. Usually these would be injections given on a bimonthly basis, in combination of steroid treatments.

Just keep in mind - while the disease can make life difficult when there are flare-ups, it's NOT as bad as it used to be. If she would like to speak with someone who is currently living with the condition, she can feel free to email me at anytime. I'd be more than happy to try and help out.

One other thing - she should watch her diet closely. My dr suggested keeping a food diary so I can learn what foods tend to trigger symptoms, as it varies from person to person. For instance, I can't tolerate any kinds of seeds and need to avoid things such as berries and breads/rolls with seeds on them. I also can't eat popcorn, as it irritates the intestinal tract horribly. =P

My thoughts are with both your sister as well as your family.

Sheri

Wolfette · Post by **Wolfette** » Mon Aug 13, 2007 1:31 pm

Upon reading your post further ... while I wish it were a possibilty that a cure be found, I honestly don't think it will. This is an auto-immune disease - the body is turning against itself, and thus far there is no clue as to what causes it and until that is discovered, the likelyhood that a cure will be found is minimal at best.

Caroline · Post by **Caroline** » Mon Aug 13, 2007 2:00 pm

thanks guys for the info, and the kind words, and to EOP for the pm's. you have all been really helpful.

my sister was diagnosed late, and it had already been affecting her pretty severly. i would like to hope that, despite all reasonable doubt, a cure for chrones will someday be found. or at least, preventive medications. sigh.

i am still selling the clothing by the way... please ask me about it.

xoxo and thanks again, caroline

Wolfette · Post by **Wolfette** » Mon Aug 13, 2007 2:58 pm

Has your sister needed surgery? Even if she has had surgery there most definitely are medications available to her ... my father has ulcerative colitis, which is similar to, but not exactly the same as, Crohn's disease. He had to have surgery, and is now on medication to keep his UC in remission. My fiance's father has Crohn's and had to have the surgery which resulted in having a colostomy bag and is able to function absolutely fine. Granted, it is a major lifestyle change, but in this day and age there are many options available.

If your doctor has told you there is no meds for your sister I *strongly* urge you to find another doctor. O.o

SME · Post by **SME** » Mon Aug 13, 2007 3:04 pm

I'm very sorry to hear about your sister Caroline. My husband had UC but had surgery 7 years ago and is perfectly fine. Our best friend has Crohn's and he is just keeping it in submission right now. Good luck with raising funds and hope all is well with your sister. It is very rare for a female to have Crohns and it is usually hereditary. Please be on the safe side and get checked out as well. It is easier to take care of in its earlier stages than it is when you catch it later on.

Caroline · Post by **Caroline** » Mon Aug 13, 2007 3:28 pm

wolfette wrote:If your doctor has told you there is no meds for your sister I *strongly* urge you to find another doctor. O.o

oh, no, she is definitely undergoing treatment and on some heavy medication. i don't really want to get into the details in a public forum, but we've been assured that once she gets through this first hurdle, she should be on her way back to a "normal" life. there are no plans for surgery that i know of. i just hate to watch her live with this, is all... >_<

Princess Nadia · Post by **Princess Nadia** » Mon Aug 13, 2007 3:38 pm

I'm so sorry to hear your sister and your family is going through this. I'd like to wish everyone all the best and luck in getting through this difficult time.

Wolfette · Post by **Wolfette** » Mon Aug 13, 2007 7:59 pm

I am so glad to hear that she is undergoing treatment, I was very concerned that the doctor had possibly made it sound as if there were little options! >_< I understand not wanting to go into details publically as it is not the most ... ??pleasant?? ... (for lack of a better word) subject.

Once this initial hurdle is over, I truly hope the medications are able to help her get this into remission. Just keep her spirits up, letting her know that you've heard from people who have it and that they are able to lead full lives.

Again, my thoughts with your sister and all of your family.

is very rare for a female to have Crohns

Really? I had not heard that .. interesting. I wonder why it is uncommon for females. Being female, I'll poke my snout into that since it's news to me.

(Curious mind and all

)

it is usually hereditary. Please be on the safe side and get checked out as well. It is easier to take care of in its earlier stages than it is when you catch it later on

This is absolute truth - there are simple blood tests to determine if you have signs of it, even before you may be showing symptoms. I wish my regular physician had made use of them, especially since I had been stressing the fact that my father has ulcerative colitis and I suspected that was what I had as well. ~_~ Would have been nice to have found out before I spent more than a week in the hospital and several weeks off work. I had symptoms for more than 10 years, living in near constant pain of varying degrees. >_<

Goldknight · Post by **Goldknight** » Mon Aug 13, 2007 11:01 pm

This will probably sound yucky, but it does work. I teach my students in my Parasitology class about it. There's been a study at the University of Iowa regarding Ulcerative Colitis and Crohn's Disease. The study has patients ingest 2000 pig whipworm ova in a drink. They are microscopic. The idea is that the immune system will fight the worms and then turn itself off afterwards. It has had very promising results with patients seeing results in as little as two weeks and lasting as long as 6 months. Some patients have gone into complete remission. I had one of my students jump on the bandwagon and it's made a huge difference in her life. The study may also have implications in allergies, MS, and even cancer.

Cloud · Post by **Cloud** » Mon Aug 13, 2007 11:01 pm

How have things changed concering what students are bringing to the classroom?

Wolfette · Post by **Wolfette** » Wed Aug 29, 2007 4:20 pm

Goldknight wrote:The study has patients ingest 2000 pig whipworm ova in a drink.

Sorry for the slow response - it's been a horrible couple weeks.

While that does sound admittedly gross, it sounds very promising. Is this an FDA approved treatment, or still in trials? I would be willing to look into it if it is available. O_o Not having to take 4 hugeass pills twice a day would be really nice.

Goldknight · Post by **Goldknight** » Thu Aug 30, 2007 6:18 pm

Not FDA approved yet. Still trials and I believe they are still taking volunteers.

Wolfette · Post by **Wolfette** » Fri Aug 31, 2007 10:09 am

I'll have to contact my gastro doctor and see if he's heard of it - and if there's anyway I can get in on it - thanks for the info! =)

Is there a website for a quick looksie? I had just needed to contact my doctor yesterday, I got food poisoning and that threw me into a moderate flareup (no hospital time, thankfully - just a restricted diet for a while) ... and turns out he's on vacation.