Crohn’s Disease is NOT the End of Our World
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So my daughter was hospitalized on Tuesday afternoon. The intermittent abdominal pains were back, along with a high fever, severe vomiting and a weird rash. I assumed it was a virus, or the flu. The doctor on call in the Emergency Room at Riverside immediately put everything together she’s been going through lately. He decided to admit her, due to severe dehydration, and wanting some more tests run.
The Pediatrician comes in the next morning, and starts asking me a ton of questions, as they usually do. She kept mentioning Crohn’s Disease over and over, in this matter of fact tone. Finally, I asked her why she kept bringing it up, and she said “all signs and tests so far point to that being the problem your daughter has”. WHAT?? My kid has a horrible disease? What the hell happened to the flu?!
Beka had many tests done, including stool samples, a CT scan with dye contrast, x-rays, scope down her throat, and of course blood work. The next morning, it was definitive. She has Crohn’s Disease. Ok, so let’s deal with this.
She was terrified. Just the word “disease” to a 12 year old is enough. It was something she’d never heard of, and she was convinced it was this awful thing that would ruin her life, keep her from sports and cheer leading, etc. I printed out some information, and we sat and read and talked for a couple of hours. She’s doing much better now mentally, and physically as well.
We wont’ let this beat her. It’s not curable… but it IS very treatable. We see our regular doctor on Monday afternoon, and he will get us set up with a Gastroenterologist for her. The GI doc will get her set up on her treatment plan, whatever that will be.
My little baby was very brave through most of what they did to her. She was poked, prodded, and poked some more. Even though she was scared and worried, and feeling awful… she was a little trooper and never complained. I stayed at the hospital with her from the time we got to the ER early Tuesday afternoon, until they released us Friday evening. I left for a total of 20 mins on Tuesday night when she fell asleep, to run home and grab some clothes and such.
So that’s that. At least now we know what it is, and we’ll deal with it then get on with our lives.
8 Comments
sirplus
December 17th, 2007
at 5:08am
Heard head of gastrology dept at royal prince alfred Mrlbourne Australia giving a talk on radio about new research he is involved in.
I understood from what he said that freezing meat for extended periods can cause higher concentrations of some bug which is implicated as a trigger for crones; this bug is always present in higher than “normal” concentrations in sufferers. He doesn’t freeze for very long if at all at home. Don’t flame me if I got something wrong, I am not a medical pro and was interested because my dad has it. Our family used freezer like it was going out of fashion and badly as far as stock rotation etc. and I can’t but help wonder if this has something to do with dads.
Steve Katz
December 17th, 2007
at 7:35am
My daughter started having all of those symptoms during her junior year in high school, and it kept getting worse and worse. The multitude of doctors we saw kept wavering between Crohn’s and Ulcerative Colitis. After several hospitalizations and frustrations, they settled on UC. Having been through this, I do not envy you, but I do offer this advice: read up even more than you have, and be your daughter’s advocate (not that you wouldn’t anyway). We had to push doctors to act several times, and had to force them all to talk amongst themselves to settle on a single treatment plan. You (and your daughter) are in charge.
Michael
December 17th, 2007
at 8:40am
One of the worst things about IBD (inflammatory bowel disease) is you will have trouble getting insurance for the rest of your life. No company willingly takes it on without steep additional costs to you.
John M Lieder
December 17th, 2007
at 9:54am
I can relate, we are currently going through the same similar situation. I have a 16 year old daughter that keeps having abdominal pains and we just finished a bunch of testing by the Pediatric Gastroenterologist. They took something like 13 tubes of blood, stool and urine samples etc. Now that you know what it is at least you can determine how you have to proceed on. We’re still in that don’t know what is going on stage. Hopefully not for long.
I will keep your daughter in our prayers as well and with god’s help everything will work it’s way out. Best wishes.
John
Neil Clark
December 17th, 2007
at 10:11am
Kat..
I have Crohn’s. First diagnosed when I was 21 yrs old.. 1964. I’m 68 will be 69 in Jan 08. Back in the 60’s, the technology.. x-rays, etc. was not what it is today. I had exploratory surgery and had about 3.5 feet of my small intestines removed. Had 2 more instances in the 70’s with just a few inches removed. That’s not comforting news, I know.. but the best is yet to come!
Within the past year, I awoke in the early morning with an all-to-familiar pain in my stomach. Once you experience the pain, you know what it is! I thought “oh, no! not again!” not wanting to have to face another surgery. The pain finally subsided. I made an appointment with a doctor.. my original doctor had retired and had since passed away. My stomach was very sore when I pushed on it. Well, I gave my new doctor a history of my bout with Crohn’s. He prescribed a drug.. pentasa. Capsules. Told me how many to take and when. Took the drug according to his instructions and IT WORKED! Needless to say, I keep a supply of pentasa on hand.
Doctor recently had me have a colonoscopy to check for colon cancer.. due to my age. The surgeon took a biopsy of a questionable “thing”. Lab test came back telling me that I have Crohn’s! Ha! Have know that since the 60’s.
Bottom line is this.. there are so many advances in the treatment of Crohn’s since I was first diagnosed. Of course, the disease can affect each person differently.. but there is so much hope today that one can live comfortably with it. I know how terrible it was to learn that your little girl has Crohn’s.. both for you and her. I hope that, if you wish, that you will relate to her this message. My experience is that with treatment, it can go into remission.. it did for me for over 30 years!
I wish you and your daughter the very best. If you have any questions, feel free to email me. I’ll be happy to share my experiences with Crohn’s as I’ve done with others.
God bless!
Neil Clark
Zane R. Huff Jr.
December 17th, 2007
at 10:54am
I’m 55 years old and have had Crohn’s for 30 some years. Yes it is treatable, and I’m doing pretty good for an old guy. I had to have two feet of my small taken out in 1986 and take meds. Be happy they found this at this early stage. I think I was having this start way back when I was 17 year’s old. Lots of pain and never knew what it was. I will be praying God gives the Doc’s wisdom in her treatment. I am proud of her. She is going to get through this and lead a productive life.
Zane R. Huff Jr.
Jack Bradley
December 17th, 2007
at 2:32pm
To everyone with Crohn’s disease. My late wife suffered from this condition since she was a teenager. It did not stop her getting married, having two children and traveling the world. Sadly she died earlier this year aged 84.
Jay
December 17th, 2007
at 5:31pm
Although you mention that they did blood tests, did they specifically eliminate Celiac Disease? See http://www.gluten.net/celiac.html.