My 15 Year Old Daughter's Story...in a nutshell.

[jaems]

This is my first time to this board, and I'm so thankful to have found it! April 7th my 15 year old daughter was admitted into the ER for pain in what we thought was her tailbone. Turned out, through CT Scan, she had a baseball sized abscess in the wall of her rectum. She spent the next five days in the hospital having surgery on the abscess, having a drain from the abscess, and taking antibiotics. Her WBC count was 17,500. She was able to come home after that, but with a PICC line to administer the antibiotics. She felt much better after that, except for the diarrhea. We thought that was a side effect from the antibiotics. One, her WBC returned to normal, she was rushed through the referral process to see a GI. The GI rushed a upper endoscopy and colonoscopy two days later. Well, we just got the call from him with the biopsy report. Although there were definite signs, she did show excess bile in her stomach, inflammation in the terminal ileum, and severe inflammation of the rectum. This is all so overwhelming, as it has all happened so fast.

Today I had to pick up her prescriptions. Here is what she's taking:

-- Canasa Suppositories
-- Budesonide
-- Zopran

I'm trying to read EVERYTHING I can on Crohn's, but I'm having a hard time allowing it all to sink in. I HATE medications, and I'm scared to death of the thought of my daughter being on medication for a lifetime. If you have any words of wisdom, or have a similar story to my daughters, I'd love to hear from you.

Jaems

 

[araceli]

Hi jaems. So sorry to hear about your daughter. I welcome you to the forum. One thing I can tell you, is that it has been a mind saver for me. Like you, when I found out about my daughter's diagnose, it hit really hard. I decided to learn everything possible about the disease, treatment and options. It will take some time to sink in, but I promise you it will get better. It's scary to think about medicines but soon you will be glad that they are making your kid feel better. We have a Parents forum, you may want to try that. Feel free to ask questions, vent away or anything that makes you feel better. I apologize for my writing but English is not my main language. Sending you hugs and support.

 

[Grumbletum]

Hello Jaems
And a big warm welcome. I'm so glad you have found us. I'm so sorry to hear about your daughter's diagnosis. How is she taking it? It's an awful lot to get your head round, I know.
Many people have a long and tortuous road to diagnosis, so the good news in your post is that she has been diagnosed quickly and it sounds like your doctors are well on the case. Have you checked out the Parents' Forum? There are, sadly, many others like yourself with kids in similar situation who are always willing to offer advice and support.

 

[jaems]

My daughter is having a hard time wrapping her head around it. This is all still so new to her, and everything happened so fast. The hardest part right now are the suppositories at night. The first night she had to take them, well, it was just horrible. My heart just broke for her. Today is day four on medications, and she's handling it a little better. Thank you for asking.

 

[jljohn724]

Hey Jaems my name is Jessica and I was diagnosed with crohns at 14 and I'm 22 now. It's still hard for me. Before being diagnosed I suffered from stomach aches and I lost over 30 pounds in less than a month during my freshmen year of high school. I saw my pcp who then referred me to my GI. I went through tons of tests and since I was young I didn't understand what was going on. It hurt my mom more than me at the beginning because I had a had time letting it settle in. Since I've became a little older and understand the disease I do a lot of research about the disease because there is no such thing of knowing too much about something that could potentially effect you for the rest of your life. I know how your daughter feels just tell her to stay positive and do research! I had my first major surgery about a year ago and it was possibly the worst thing I could have went through physically, mentally, and emotionally. I'm thankful to have great doctors and tons of support from my mom. I experienced my first abscess last week and it was not fun. I take humira injections biweekly and mercaptopurine daily. I recently saw an herb specialist who recommended that start probiotics and enzyme pills for digestion. Crohns is a battle but it can be fought. The best way to handle crohns is to not let it control you. Talk to your doctors. These forums are a great way to learn about what people have been through and what methods have or have not worked for them. I wish you guys the best of luck! I know I'm still young but please feel free to ask any questions