Hi Daunting
I too, like Dusty, hesitate to comment on these because it is my daughter that is ill with CD and not me. However, something has compelled me to give you a little "insight" that, yes, you can get better
Gabrielle began being ill at 9 years old. She had severe stomach aches and hardly ate. After numerous tests she was treated for "suspected Crohn's". That treatment, although mild, only lasted around a year and she seemed to get better, and it was decided that she probably did not have CD. The doctor said if she does have it, don't worry, it will rear it's ugly head in her teenage years. So as the years went by, and with every (odd) illness she had we often found ourselves saying, "Maybe it is Crohn's?" And then she would get better and CD was a fleeting thought once again.
And then she turned 16.
It was the summer of her 16th year and all hell broke loose. She was hospitalized after around 6 months of just not feeling good, that quickly turned into what they deemed "Chronic Mononucleosis". She was severely jaundiced (they blamed it on Tylenol and bananas if you can believe it!). She spent 7 days in the hospital in severe abdominal pain (that they would not treat because of the liver problems), so she suffered through. The jaundice settled and she was released with no treatment.
After this episode she continued to get more and more ill and lived in constant pain, and also gained a symptom of severe joint pains. She could literally barely walk some days and said she knows what it feels like to be an 80 year old crippled up woman. We spent the next 8 months "doctor hopping", trying to make someone, anyone, listen to us that this was not "just Mono".
Finally, after we were sent to an oncologist with a scare of possible Leukemia, she was referred back to her original GI doctor, and after a few tests we finally had a definite diagnosis of Crohns disease.
Great right? We have a diagnosis and she can begin to get better !
Wrong! They started her simply on Apriso and prednisone, and then later moved on to 6mp in hopes to wean off the steroids. That never happened.
Around 9 months after diagnosis and "treatment", she was no better and getting worse, and still never once had she taken so much as a Tylenol for the pain.
She ended up in the ER 3 more times before they would pay attention and admit her.
She was found to have a suspected abscess in her pelvic abdominal wall.
She spent the next 10 days hospitalized with high anti-biotics and 120 mg a day of IV salumedrol (sp?) steroids. Again, they were very hesitant to treat her pain because of the risk to her liver, and they were afraid of it "backing her up". Her abdomen looked like she was pregnant full term, and she lay crying for days. No surgeon wanted to touch her because she was a minor so they released her again basically saying she could choose elective surgery after she turned 18 (which was not for 4 months!)
After this I researched and got her into the Mayo clinic, and within 2 months she had surgery. When she was opened up she was found to have not one, but 2 extremely large hidden accesses (one of which was leaking directly into her blood stream), multiple fistulas, and an extremely large mass. Her surgeon said he has never seen anything like it and she has obviously been suffering her entire life. She woke up from this surgery with a temporary ileostomy and a broken heart, and I found it hard to believe that she would emotionally recover being just 18 years old.
Boy was I wrong !!
This young lady of mine has gone beyond expectations. She is still suffering some, but we have very high hopes for the Cimzia treatment she has just started. She takes advantage of every single good moment she can and never lets anything stop her. She keeps a smile on her face even when she probably feels like crying. She has just graduated high school with Magna Cum Laute honours, in spite of spending practically her entire senior year in bed. She is headed off to her University of choice in the fall, despite me almost trying to keep her home and hold her off.
So I guess my point in all of this is live your life. Keep your chin up and never, never let this disease or any other stop you from achieving your dreams. Don't let it get the best of you, YOU can do it ! If a 16 year old teenage girl can spend 2 years of her (life) pretty much bed ridden and in pain, and still keep going...you can too
It does get better...you just have to keep your perception of "better" small for now maybe, and watch it get bigger an bigger as you get a diagnosis and start your journey to health.
I hope this finds you in good spirits, and I wish you nothing but the best !!
:ghug:Hang in there ! :ghug:
