We will keep your family in our prayers.
We will keep your family in our prayers.
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Here's our baby girl. Remember, she's only 17!!
Oh my. Chuck, 17 is legal in my state. 
Buuut, I'm married.
Hey! You figured out how to hotlink!
dj06482 wrote: 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.
I'm 42... had the disease since I was 14 going on 15.. there are times I get very depressed about the disease and I have had close to 30 years dealing with it
I'm 40, I've had it since who knows when...16, maybe 17? Didn't get diagnosed until 10 years ago.
Some very good points made here. Support system is key. Stress is key...if her home life is a mess, that can really make things bad. In fact, it's possible that it could be more a reaction to stress than an actual Crohn's flare up. I'm sure you're all over it, but keep making sure she's got the encouragement and support she needs. No easy answer on how to deal with it. I like to tackle it head on, kind of an "is what it is" approach. I have it, it sucks, I have to deal with it. I do everything I can to keep it at bay...hence why I'm really into excercise, nutrition, don't drink, etc...but I'm a middle age bald guy. But that's just my approach. Whatever support she needs, be there and help her find her way.
Sorry to hear. I dated a girl for 4 years while in college who found out she had the disease before we met. She had to have some of her intestines removed. I can remember she had a few flare ups, but not too much trouble. I can't remember much other than maybe some foods caused her problems. Anyway, she's since married and has two children and seems to be doing fine (we have some of the same friends). I wish her the best.
In reply to Stealthtercel: So true. Jane CW's wife and grandma here. Will try not to get into family dynamics here much. Her Dad (died a little over a year ago) was to say the least, not one to give you the warm fuzzy's - abusive to all around him including Sarah's Mom-yet Sarah controlled him & only sees what she wants to - finding that peace - especially spiritually (not as in religion) is a work in progress with many obstacles along the way. All of you all are so helpful....love the words, advice and information - it will be extremely helpful. CW will keep you updated - seriously interested in more natural forms of treatment in addition to serious meds she has to take but perhaps once controlled that can change. Again Thank you all.
mad_machine wrote:dj06482 wrote: 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.I'm 42... had the disease since I was 14 going on 15.. there are times I get very depressed about the disease and I have had close to 30 years dealing with it
Almost exactly the same as my situation. Ultimately it was repeated bouts of chills and fevers that felt like the flu, extreme fatigue, a long term stomach ache and Colon Cancer Awareness month to get me to go back to my Dr and get in his face and tell him its not just me getting older. He sent me in for a lower GI and it showed Crohn's. The only good thing about that lower GI is it showed me I had Crohn's and I am definitely not gay. Then I got to followup with a colonscopy.
There is a book I believe is entitled Eating Right with a Bad Gut. It has helped a lot of people. The Cliff notes version it to avoid greasy fried foods and fat like the plague.
cwh wrote: In reply to Stealthtercel: So true. Jane CW's wife and grandma here. Will try not to get into family dynamics here much. Her Dad (died a little over a year ago) was to say the least, not one to give you the warm fuzzy's - abusive to all around him including Sarah's Mom-yet Sarah controlled him & only sees what she wants to - finding that peace - especially spiritually (not as in religion) is a work in progress with many obstacles along the way. All of you all are so helpful....love the words, advice and information - it will be extremely helpful. CW will keep you updated - seriously interested in more natural forms of treatment in addition to serious meds she has to take but perhaps once controlled that can change. Again Thank you all.
Jane, Best wishes to everyone! Sounds like she has a long road ahead, physically and emotionally. But it also sounds like she's got some solid foudations to lean on.
Honestly, coming from someone living with it, I wouldn't worry too much about the natural forms of treatment right now. The current traditional medications can do wonders, and for now it sounds like she just needs to get it under control. Once they've established control, then you can start working on what will maintain that control.
Also, once you find that balance (which includes the emotional side as well), do what you can to keep it there. The longer she's in remission, the better she'll be. Knock on wood...I've been in remission for years. While I wouldn't go out and eat 3 buckets of deep fried twinkies, I can now eat things (in very measured moderation) that I would have never dreamed of years ago.
I'm 30 now. I was diagnosed when I was 17 after a long ordeal (although not as bad as mad_machine's).
Many important things have already been mentioned, I have two things things to add that I think can be very useful:
It may be up to you to convince her to start the diet and even cook for her for a long time so that she can stay on it. In my case it took a year of constant nagging from my mother until I agreed to give it a try for 3 months. When I felt a little better, I gave it a try for another 3 months and then I was finally convinced. 17 year olds can be stubborn about imposing life long limitations on themselves.
You will also get conflicting advice from the people on Crohnology and from her doctors. Don't be alarmed. Do what the Docs say in the short term and they'll get her out of the hospital and back home. Like Klayfish says, once they've established control you can worry about the rest. I just want to give you food for thought now so you can read up ahead of time.
[Gets up on soap box]
When it comes to acute (short term) care our medical system is quite good at stabilizing people and getting them over the hump. Where our system brakes down is the chronic (long term care). If you look at the primary trial data from the clinical trials for Remicaid and Humira (the two most popular immunosuppressants), you will notice that they they help some people, hurt some people and overall only help a little bit more than they hurt. I.E. they are crappy treatments with big marketing machines behind them that make sure they get prescribed a LOT. Meanwhile, a treatment like the Specific Carbohydrate Diet, which works very well for many people does not get recommended by doctors because no pharmaceutical company stands to make money from a diet and thus there is nobody to pay to run a large clinical trial on it and nobody to pay to market it to doctors.
At this point, I'm probably starting to sound like a wackjob so I should point out that I design medical devices, work with doctors on a daily basis and have actually run clinical trials myself. I overall believe in our medical system, I just think it has some gaps when it comes to the treatments of certain chronic conditions, Crohns being one of them.
[Gets back down from Soap Box]
Anyway, feel free to PM me if you have any questions or just want to talk to somebody on the diet etc.
Best wishes to your grand daughter.
Madpanda, I don't work in the medical field, so you probably have access to more info than I do. However, I'm surprised to hear you make those comments about Humira and Remicade. I started first with Remicade. It worked fantastic for me. I had to stop because I developed a nasty reaction to it, which apparently isn't uncommon. However, when I would sit there for 2-3 hours for my treatment, I spoke to tons of patients and nurses. I heard mostly nothing but positive things about it. I've now been on Humira for about 3 or 4 years and it's been nothing but good. It doesn't work for everyone, as there really isn't one blanket treatment. But the only "bad" I've heard about them are the well known risks of having a lowered immune system.
Man, sorry to hear this. 
I know nothing about Crohn's so have nothing useful to add, just my wishes for her recovery.
Sorry to hear about the stress of Crohn's disease that you guys are going through. I work as a nurse on a colorectal floor at a hospital and deal with the post-op recovery of patients with Crohn's, Ulcerative Colitis, and other bowel diseases and caners. It's a very tough medical condition to deal with. Granted, I deal with mostly surgical patients (colon removal, resections, internal reservoir/pouch procedures, colostomy/ileostomy, etc...) but the background stories I hear from all of these patients is pretty rough. Shot and blown veins from steroids, constant flare ups, ER visits, ruined dates and family events, etc...plus the pain and nausea...ouch 
Yeah, anti-inflammatory and immune suppressants work for some, but not for others...and sometimes surgical management is a better choice. But even with surgeries, they aren't 100% successful either or as long lasting as you would hope/expect.
Lately, within the last few years, we've seen more and more young (16-30 year olds) come in for surgery either due to failed medical managed Crohn's, or for elective surgeries. It's hard to see such young, good people have to deal with such a hard and frustrating process.
There are great medical and surgical doctors out there for adults and kids afflicted with GI diseases, and I really feel that those who work and treat these people are special, caring individuals. It takes a lot out of you being sick all the time or worried about when the next time you'll have a flare up. I agree with what other people have said before; have a great support system (friends, family, and online forums/chat groups). With social media nowadays, it's easy to find others with similar issues and places to vent your frustrations to.
I hope that she gets her Crohn's managed, and that she can stay strong and positive throughout everything. It can be very depressing, frustrating, sad, and difficult...hang in there and use your resources! 
If I can be of any help, PM me or let me know! Best of luck!
Klayfish wrote: Madpanda, I don't work in the medical field, so you probably have access to more info than I do. However, I'm surprised to hear you make those comments about Humira and Remicade. I started first with Remicade. It worked fantastic for me. I had to stop because I developed a nasty reaction to it, which apparently isn't uncommon. However, when I would sit there for 2-3 hours for my treatment, I spoke to tons of patients and nurses. I heard mostly nothing but positive things about it. I've now been on Humira for about 3 or 4 years and it's been nothing but good. It doesn't work for everyone, as there really isn't one blanket treatment. But the only "bad" I've heard about them are the well known risks of having a lowered immune system.
Hi Klay, It is great that Humira is working for you. I hope that it works well for cwh's grand daughter too if they end up putting her on it. I called it "crappy" in my last post to counterbalance a lot of the marketing that goes on about it that tries to make it seem like it works for almost everybody.
I didn't have the numbers on the tip of my tongue last night, so I looked them up just now. They come from Abbott (the drug company)'s own patient information packet that they are required to disclose by the FDA. Here is the document: http://www.rxabbott.com/pdf/humira.pdf (you have to scroll down quite a bit to section 14.5)
Basically, the summary of the longest term data they have is that at 1 year: 36% of patients on Humira are in clinical remission vs 18% of patients on Placebo.
If you don't just count complete remission, but any positive improvement whatsoever, 43% of patients on Humira got better vs. 18% on placebo.
It certainly helps more people than it hurts, but overall I wouldn't call it a "good" treatment when you consider all the possible side-effects. It only helps about twice as much as doing nothing and still doesn't help almost two thirds of people. Furthermore, the data is for only 1year and people like you and me live with Crohns for many decades so who knows what happens long term...
Big picture, if it works for you, you are one of the lucky 36% or 43%, which is great, but I wish there was a way for people to know more about the diets and other treatments with minimal side-effects that don't have Abbott's marketing budget behind them.
PS. Just looked it up, Abbott made $8 Billion from Humira last year.
Just like any drug, they don't work for everybody and can have nasty side effects. I avoid anything I don't absolutely have to take, but obviously thats not always an option.
An update on our sick kid, from Jane-
She was to be released from the hospital Tuesday night. Her bleeding had stopped by Monday and she was able to eat “real” food starting Monday night. She has been re-diagnosed with severe ulcerative colitis and not Crohn’s. She will be on a low dosage of Prednisone for one month along with a new medication Asacol (Mesalamine) possibly for the rest of her life. It does not contain any steroids. As most of your forum members know, her diet will be important as in no junk food (some baked snacks/fruit snacks), vegetables (like potatoes) are okay without the skin, important any meat (preferably not beef) is very lean, well cooked (no sushi!), poultry, seafood, no whole grains, she can have salads (well chopped up) in moderation – she needs to eat patiently, not in haste and chew it up well, eating several smaller portions throughout a day when possible. Lower potassium fruits and veggies. She will need to become a “label-reader” which will only work to her advantage on many levels. The hospital she was in was Palm’s West in Loxahatchee – a teaching hospital with specialization in pediatric medicine. She was well treated and gifted with a new iPad!
We sincerely appreciate and thank all the input and comments from your forum members….such a wealth of knowledge, information and concern!
Thank you
Jane B. Hanlon
I'm glad to hear she got a correct diagnosis. A coworker has colitis which was in remission until a year or two ago when it flared big time. He went through predisone for a while and is now getting Remicade infusions. I think it is back under control.
BTW I take Asacol which seems to work for my Crohn's.
When my wife was around the same age, she was diagnosed with Crones. They removed a portion of her intestine. She has been free of symptoms or complications since. Everyone says that it is a lifelong condition, even with the surgery, so we think that she was mis-diagnosed. Either way, she is now happy and healthy. I hope your sick kid turns out the same in 20 years.
Glad to hear it is not Crohn's! Colitis is not fun, but as you know, it is manageable. Glad to hear she's home again.
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