My son was diagnosed with Crohn's and I am in agony

[iriss]

My 13 yr. old boy (my baby) was just diagnosed with Crohns Disease a month ago and I am experiencing pain worse than childbirth and kidney stones combined. I am an RN and a little knowledge can kill someone. MY son is actually fairly well and has been with his grandmother the past several weeks. I noticed that he was barely growing and one abnormal test result let to another, led to another and Crohn's is the dx. I kept crying everytime I looked at him, so it's actually good he's away now. I have had suicidal ideations on and off since hearing the bad news, but I have had these suicidal thoughts before and I'm still here to tell about it. I went to a psychiatrist and when I told him of my suicidal thoughts he put me on Lexapro, but I didn't take them because I don't like meds. I am in perfect health and don't take anything. I felt I could handle this and did well on and off. I have to tell you that if my son had died I would have reacted the same way as I'm reacting now. Basically his life is as good as over because it will be so difficult for him to have a normal adolescence and adulthood.  I am grieving the loss of his health and I'm in sheer agony. I cannot stop crying some days. Other days I feel perfectly well.
When I was a young nurse (about 20-25 yrs ago) there was an emaciated 18 yr. old boy who was admitted to the hospital. He was about 5'10" and must have weighed 90 lbs. He looked like the photos of Holocaust survivors duing WWII. And his dx was regional enteritis (or Crohn's as it is called now). I can still see the pain in his eyes and I'm sick.
Now please don't tell me my son will do fine. We don't know that. And he's sure to not live a full life because more than likely he'll be stricken with cancer or sepsis or any of the other complications. I'm not sure someone can live with Crohn's for 50 years. In 50 years my son will only be 63! I am in agony here and have thought of jumping off the Golden Gate Bridge or swallowing all the Lexapro's and Xanax's they gave me in my garage with the car engine on. Please don't tell me my chld needs me because I cannot bear to sit around and watch him suffer. He might be better off without me crying in front of him all the time.
I would like to know how many people with suicidal ideations eventually kill themselves. What are the statistics?  You just don't know the pain that I'm in. My child's life is over and I cannot bear to watch. What should I do? I am not going to any psychiatric emergency center, either.
Thank you

[Raine9]

My daughter's former pre school director was a huge advocate of  the theories behind the book "Breaking The  Vicious Cycle".  He knew the author personally.  Yes, the diet is really hard to follow and takes a great deal of time and discipline but it's worth a try, I think.  This preschool director's son was thought to be autistic, so he put his son on the diet and his son's behavior improved dramatically.  As it turns out, he is not autistic.  His son simply could not digest certain foods.  His name is Stan Kurtz, here is his website if you want to read more...
http://www.childrenscornerschool.com/stankurtz.htm

Good luck!

[Janislaughing]

Please don't think the future is so bleak for your son. I have Crohn's and am doing fine. I have occasional flare-ups, then I go into remission.

I have other health challenges that seem much more serious to me, but I look for the blessing in everything that happens.

The doctor is right. You don't know the course the Crohn's will take with your son. Get yourself into therapy so you can be a light in his world and not frighten him.

[RockRose]

Iris - I totally understand what you are going through.

Last year my son had a life altering injury - and the pain from that,  for me,  was staggering.  A lot of different things were happening at the same time for me,  I had a water-intake seizure (eeks!)  and then a week later nearly drown in the ocean in a very strong current.  So I'm not 100% sure where the awful pain and anxiety came from for me,  but it was the way you describe.  I couldn't look at my son without pain being obvious in my face.  I couldn't stop asking him asking him asking him how he was,  and fussing and worrying myself ill.

My heart actually hurt - you know how people say "heartache",  well my heart actually physically ached so much I'd wake up from the pain.  Are you feeling like that?   Does your heart actually hurt?

I had this image I'd think of,  and it would help in a bizarre way - I thought of reaching in and pullng my heart out with my bare hands to try to make it stop hurting.  Bizarre,  I know,  but somehow the thought of squeezing my heart helped some small bit.

I was listening to a radio talk show,  Dr. Laura Schlessinger,  and a caller called in with a crisis like this,  and unable to cope.  Dr. Laura asked her if she thought she'd be able to get through life without episodes of horrible pain - and that got to me.  Until this,  my life was great.  Tiny little frustrations,  but even at the time I knew I was skating on very smooth ice all my life,  it was charmed.

Maybe that will help you too,  somehow,  to realize that pain and difficulty are a part of life,  and this crisis is a cross for you to bear.  As time goes on,  it WILL get better if you force yourself to try to think positively.  Right now,  it' like when you burn yourself and you're in that agony phase.  It will abate.

And what will help it abate is you helping your son.  If you can smile at him,  and treat him cheerfully and see him respond to your care,  a little of your anxiety will abate.  And the months will go on,  and you'll have to keep dealing with this,  but your heart will be stronger.  The burn,  of this sadness, is at its peak right now.

Now.  Go exercise!  It WILL make you feel better.

Take care.  I know you can get through this,  and it will be a horrible memory,  but it will end.

[Paulkoz]

My Son was diagnosed with Crohn's yesterday.  I must say that your attitude is alarming for me.  I have found a book called "Breaking The Vicious Cycle" which is a specific carbohydrate diet and there is a lot of testimony to its effectivness.  I want to try it even though the Dr. says it wont work.

I was told by Dr.'s that I had a schetzoid effective disorder about 7 years ago and I would be on meds the rest of my life.  They were wrong!!! I have been off of meds for 1 and 1/2 years, thanks to God's grace and living by his will. WWJD works for me!!!  The meds helped slow my brain down though so that I could get back to reality and find God.

So you see, there is Hope!!!  Pray for God to help you with your son.  Try to stop being so selfish.
Your son needs you!

[dystatic]

just to add another postive story for perspective
my sister's old dance teacher has chron's
she was healthy enough to teach dance, a physically demanding job
and no, she wasnt rail thin like some dancers, she was a healthy size
i cant tell you how your son's life will be but there are LOTS of people out there with the desease living full lives, dont give up hope

[satchie]

This is not my topic area or subject.....

satchie.

[iriss]

Thanks for your very positive story. Fourteen years is a nice, long time to be in remission. I hope you are one of the rare few in which there is one exacerbation and then the disease never re-surfaces again. (A lifelong remission, if you will).

[lakelady]

Hi Monica, My Friend is lean but has a really nice body, He works out alot and is quite muscular. He's around 5'11" 170-180 He has to keep in good shape as his Job is quite demanding. Best of luck, maybe you can get your son into body building or something, that way he'd be more aware of what he was eating and he'd see positive results. He's getting to the age where girls are an added insentive to taking better care of himself, the better care he takes, the better he'll look. bye,Debbie

[Squims]

Hi Monica.

I know that this is getting away from the point of your origional note slightly, but I just wanted to add that I was diagnosed with Crohns at 15 years of age, and I was completely cured through Steroid treatment.  That was 14 years ago and I've not had any reoccurance.  

The disease is commonly associated with teenagers and young adults, therefore your GP/specialist should be fairly adept at providing the right treatment regimen. Know and believe me when I say that you've got no reason to think that your child won't make a full recovery.

Best Wishes

Simon

[kibble]

Monica...although I am sure you are running alonside with the rheumatologists for your son's care...please have them look into whether or not REMICADE might be a maintenance med for him to help out. It is originally designed for Crohn's patients but as a severely affected Rheumatoid Arthritis...NOTHING worked to rid me off agonizing pain and other horrid symptons...I was reduced to survival mode only capacity (I was 40, mother of 3 with a newborn, corporate career, athletic gal--before the onset of the disease)...I now have my life back! I am on the way to a reasonable facsimle of my former exitence...without or minimal pain (if I behave!) and I am fully functioning physically and mentally. NOTHING else worked for me. This did...it saved my life.

Now about you, my friend...you are not alone and as a mother of 3 myself...the horror of your story coming into play into my life is something I hope I will never know...but I've had my share of hairraiser's already so I know you can "do this" and stay sane and see a happy, albeit severly challenging, life for yourself. Seek counsel by a professional (be sure you "click" and find one with a paractice you respect and can trust)...keep up with forums, chatrooms as needed (sometimes though...my head gets too full from them...but more oft than not ...they help you feel normal and at times lucky (some people have some reallllllly bad stuff...so it's always a good way to gage your own situation against others...additionally...your pain, failures, successes help others and that provides a serious comfort in an of itself. Your grief is N-O-R-M-A-L !!!

Warmest wishes to you, your son, family, and friends.

[lakelady]

Hi Monica, Sorry to hear about your Son, but don't give up on him. I want to tell you of a really good friend of mine. He's now 36, a bit younger than me, He's had Crones Disease for years. It has never hindered Him. He's a Police Officier and involved in lots of community work, and I don't mean a behind a desk Cop, he's out there chasing bad guys, doing Drug busts. He's the Father of 3, is an athlete, boats, WakeBoards, you name it he does it........He does go to the Hospital sometimes, but he eats really healthy and has learned to modify his diet and learned to LIVE with this Disease, Just like you and your Son will. Oh and by the way, He's Georgous, looks just like Tom Cruise only Better! Good Luck, Debbie

[iriss]

Thank you for your very positive story. Is this friend of yours very, very skinny? Or does he look a normal kind of thin, vs. an eating disorder kind of thin.
My son only eats junk food like chicken fingers, french fries and bagels, and candy. I guess he'll need to learn to hold his nose and eat better. He says most foods taste disgusting.

[iriss]

Doctor, you are so right that I am grieving for the lost perfection, but also for the loss of health my child must now deal with for the rest of his life. Yes, there has been perfection until now, financially, emotionally and physically. My perfect world has fallen apart and that is a very difficult thing to deal with. But,I am not really thinking of myself. I am dealing with my child and thinking of how life might be excruciatingly hard for him. His life will be filled with harsh meds that can have side effects as bad (or worse than the disease..you know all about prednisone), doctor's visits, blood tests, colonoscopies,  etc. Everytime he has a stomach virus he'll probably need to be seen to make sure it's not an obstruction! He is only 13 and these things will rob him of his adolescence and throw him into the world of adults and old people prematurely.
Yes, I wanted perfect children and that's why I chose to have amnio's even though I was only 30 and that's why I chose Level 2 ultrasounds and any other test that could ensure that I have a healthy child (those things plus taking meticulous care of myself during pregnancy). I guess there was no test for Crohn's. I would never have had my child had I known that he would get this dreaded illness and be thrust into the world of pain and suffering for virtually his entire life!
The only thing a psychiatrist can do to get me through this is to offer me a lobotomy (and I rather doubt those things are done these days).
But you never answered my original question in my original post. How many people with suicidal thoughts ultimately kill themselves?
Thanks

[Roger Gould, M.D.]

What you can do, and you must do, is get your perspective back. Yes Crohn's is a major disease and requires careful management,but there are a lot of different clincial paths the disease can take from mild to severe, and until you are sure which path this disease is going, you should not jump to the conclusions of disaster, and you should not jump to the image of your memory with the patient who had the severest form, and also, when we didn't know how to treat this disease.

Perspective, perspective, perspective....You are grieving for lost perfection, for an image of what you wanted.  You are confronted with a child who needs diligent careful care, that is real, and that is why you have to gather your strength and deal with your new responsibility.

It would be best if you would talk to a psychiatrist to help you get through this..it doesn't have to be an emergency room, but you should get an appointment today.