17yo grand daughter, who should be in the Good God Almighty thread, is currently in the hospital for treatment for Crone's Disease. I know some here are knowledgeable on this syndrome, and we are wanting more info. She is bleeding and a rather sick little girl right now. Thanks.
I dont know much about Crones, except its tough. Having a sick kid in the family is a rough thing to deal with, especially during the holidays. My thoughts and prayers are with her!
Sorry to hear of her troubles. I'm a dr and frequently take care of people hospitalized with this condition. This site can tell you more general info about Crohn's disease than I can type in one post.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001295/
It is managable, but it is life long condition.
That's a bad one. Stay on top of it, do what the docs say. The problem is that the gut is sick. It gets damaged, and if bad enough, holes in it, which is a very bad thing. It is probably an autoimmune disorder. Steroids help. Steroids suck, serious double edge sword.
Very much appreciate the info and good wishes. The kid has had a rough life with very dysfunctional parents. Drop dead gorgeous, but not so pretty today. Keep it coming, I knew you guys would be helpful. Even got a newby involved!
In reply to cwh:
I can't speak for everyone else, but I'm sure that there's some way for all of us to "chip in" on some sort of card or get well wishes for her. I know I would.
I have Crohns. No, it's not fun. As said earlier, it's an autoimmune disease. That carries it's own complications. Crohns comes in various levels of severity. If she's in the hospital, I'm guessing she's had quite a flare up. The good news is that there are lots of medications available to treat it. Prednisone (steroids) are the quick and dirty way to control a flare. It works wonders, but has wicked nasty side effects when used long term. Lots of other medicines out there, such as Lialda, Remicade, Humira. They really help...a lot. But they're very expensive, so hopefully she's got good medical coverage.
One of the biggest things that help is diet control. And I don't mean "go on a diet". I mean proper nutrition control. Make sure she understand what her body can tolerate and what it can't. It's very similar to someone with a sensitive stomach. Things such as greasy foods can be a trigger. Caffeine is a big no-no for me, as is any form of aspirin or ibuprofen.
By the way, the medicines used to fight Crohns' are typically ones that suppress the immune system. Therefore, you're much more vulnerable to the flu, upper respiratory infections, etc... so watch that very closely. I've had pnumonea, bronchitis, etc...several times over the past 10 years.
All the best to her and you.
I have it.. working on almost 30 years now.. It's not a fun disease, but the medications are getting better and better and with time, it may even get cured.
Thing to remember: Sometimes it will be VERY good.. and sometimes it will be VERY bad. I consider myself one of the lucky ones.. I get through life without medication at all, just meditation, watching what I eat, and keeping the stress from getting too bad.
When I was diagnosed. Took the docs NINE months to diagnose it as I kept coming down with Pnumonia, this was throwing their ideas what was wrong with me out of wack. I went from 115 pounds (at 5'11") to less than 90 during the course of that school year (freshman in HS). During this year I suffered through 12 bouts in the hospiral due to pnumonia, Was sent to Children's Hospital in Philly for fluid outside the lungs, and suffered a minor stroke that took away my pherphrial vision on the right.
almost every orfice in my body was scoped, I was X-rayed, Cat-Scaned, MRIed, and had barium both swalloed and enemaed. The veins in my left arm are still no good for needles due to all the IVs and blood they had drawn.. it was a nightmarish school year that almost ended with me jumping from a windowsil 9 stories up.
I would never wish this disease on anybody.. it is one of the reasons I do not have kids and have not been able to keep a steady gf or significant other. (they all wanted kids) So my heart and soul goes out to this poor girl who is looking forwards to a life of pain, suffering, and even humilation. If I could give my life to cure this disease from the world, I would do so without hesitation
My daughter in law has Crone's, she's 26. There are varying degrees of it; also effected by food, stress and a host of other influences. Hopefully they will nail down the triggers.
Good luck.
In reply to cwh:
Man I am so, so sorry. 
I lost my Step-Sister earlier this year to Crohn's. We will keep you and your family in our thoughts and send positive feelings your way. Wishing you all the best.
One of the biggest challenges with Crohn's is finding the triggers/causes. Since nobody knows for 100% sure what causes it (and hence how to cure it), it can be like chasing your tail. People with Crohn's can have symptoms that mimick what healthy people have with a "sensitive" stomach. So stress, environment, etc...can also play factors.
My cousin was one of the first diagnosed with Crohns . She lived a usfull life . She died at the age of 82. I don't know any details on her treatment.
Whip worms. Seriously. Look into it. Over the last decade, they've turned out to be really good at eliminating symptoms of the disease. We've discussed this before.
Here are some relevant links:
http://www.npr.org/2010/12/02/131753267/eat-your-worms-the-upside-of-parasites
http://www.radiolab.org/2009/sep/07/
http://www.int-med.uiowa.edu/news/Stories02.asp?displayid=35
Be sure that anybody you talk to knows the difference between whip worms and hookworms. I don't care what they say, you DON'T WANT HOOKWORMS.
http://www.infektionsbiologie.ch/parasitologie/seiten/modellparasiten/mp05ancy.html (includes one NSFW pic that really illustrates why you don't want to mess with hookworms)
Klayfish and mad machine are both on target. I too have Crohn's, but mine isn't too bad though. I wasn't diagnosed until I was 46 YO, but strongly suspect I had it at 14.
Bascially you body is fighting itself and they have to slow down your immune system. That opens you up to other diesases and cancer. Steroids are a good tool to stop flares, but the side effects are a bitch. There is Entocort, which is a better form of steroid. Remicade influsion has been shown to be effective for Crohn's that doesn't respond to other treatments. There are also some new drugs similar to Remicade.
Surgery to remove the affected area is the last resort, but the stupid disease usually come back in 3-4 years.
Some people die from Crohn's but it pretty rare. Some people have their quality of life taken away. Some people like me just have some inconvenience. Once I was diagnosed and went on Asacol, thinks got much better.
At the moment there is not cure.
Google search CCFA. They are an excellent source of info.
I wish her the best.
spitfirebill wrote: Bascially you body is fighting itself
Yup. Autoimmune diseases are ugly.
spitfirebill wrote: and they have to slow down your immune system.
....or give it something else to do (hence, worms.)
A radio DJ in the StL area has crone Crone's and does a lot to raise money for research. I'll check in and see if he has anything going on. He was fired and is running a podcast. The website and the podcast itself will be NSFW. Both DJs are great guys, but their humor is adult.
Once again, NSFW: http://thethomandjeffshow.com/
stroker wrote: In reply to cwh: I can't speak for everyone else, but I'm sure that there's some way for all of us to "chip in" on some sort of card or get well wishes for her. I know I would.
Seriously. I'll ramrod it if there's interest. Flowers? Food gift cards? I'm not sure what you get a 17-y.o. girl in the hospital, or her family for that matter.
Thoughts welcome, but lets get the ball rolling if we're going to do it.
In reply to JohnInKansas:
If you want to set up a paypal gig up and tell us the address to gift to. Figure the rest out from there.
JoeyM wrote: ....or give it something else to do (hence, worms.)
From what I understand the worms secrete a form of immunosuppressant (an interleukin if I remember right) which is what prevents flares of autoimmune diseases such as Crohn's. So it's not that your body has something else to fight, but rather your body's overactive immune system is calmed down by the interleukins the worms secrete.
Of your three articles referenced it looks like the first two reference hookworms and the last pig whipworms. None of these are FDA approved therapies of course.
In reply to N Sperlo:
johninkansas_1 at yahoo dot com is the account tied to the new paypal.
In reply to JohnInKansas:
OK. You're in charge. 
bastomatic wrote:JoeyM wrote: ....or give it something else to do (hence, worms.)From what I understand the worms secrete a form of immunosuppressant (an interleukin if I remember right) which is what prevents flares of autoimmune diseases such as Crohn's. So it's not that your body has something else to fight, but rather your body's overactive immune system is calmed down by the interleukins the worms secrete.
Now that you mention it, I do seem to recall hearing something about interleukins. The reason I worded it the way I did was because of the Hygiene Hypothesis.
bastomatic wrote: Of your three articles referenced it looks like the first two reference hookworms and the last pig whipworms.
The first link was citing this article using Trichuris trichiura, and the third one was for a study using Trichuris suis. (both whipworms.) The second link does talk about Crohn's and hookworms (i.e. nematodes in Secernentea.)
Hookworms can reproduce in the body, and cause all sorts of ugliness as they do so. Whip worms (especially pig whipworms) don't to this.
bastomatic wrote: None of these are FDA approved therapies of course.
True.
We'll keep your grand-daughter in our thoughts and prayers!
My advice would be to go to the best, the Mayo Clinic and the Cleveland Clinic are consistently #1 and #2 in the US News and World Report survey. I think either one would do a fine job. The advantage they have is that they see the most volume, and the toughest cases. They're on the cutting edge of treatment, and have ties to ongoing studies, etc. that a local place just won't have. I'd recommend working with someone locally as well, but I'd want a doctor at a top facility directing her care. Getting the correct diagnosis is often very difficult, but is critical for obtaining the correct treatment.
Don't underestimate the mental part of it, too. Dealing with a disease like Crohn's is not easy for a teenager. Ensuring she has the correct support system in place can make a huge difference in how she reacts to things.
On the subject of stress as a trigger/aggravator, a 17-year-old girl with dysfunctional parents probably has so much stress going on as a matter of routine that it would make an adult's head spin. I don't want to sound all hippy-dippy here, but helping her break through to a calm centre is a whole course of treatment in itself. And totally worth the trouble, too: even if it doesn't directly help the Crohn's, it will certainly help her cope with it.
Having a grampa who thinks she's the greatest thing since sliced bread is an excellent start. She's going to need an advocate, a booster, and a rock. If Mom and Dad can't or won't step up, then congratulations, you just won.
Sounds like this disease should be branded an official Enemy of Humanity. Good luck, here's hoping she gets the treatment straightened out sooner rather than later.
You'll need to log in to post.
