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Crohn's Disease
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Posted 11/26/2009 2:42 AM (GMT 0)
Tom,

HOw is your daughter?  HOw was the absess located and treated?  I am worried about my daughter.  She is flaring again, seems to be an October thing.  She recently had labs and they were awful.  Doc is havign a small bowel follow through and upper gi done on MOnday.   He felt a small mass in her lower right quadrant.  We will see what shows up.  Anyhow, he started her on a stomach antibiotic last week and today called to have her begin another round of Prednisone.  (just for 5 weeks) This will be her 2nd time  on Pred.  My guess is that he will switch her autoimmune med.  It is hard to see her suffering.  She ususlly doesn't say much at all, but is void of energy and "happy mood".  Some moments are better than others and I can see a glimpse of a healthy teenager but other times I am so blatantly reminded of this disease.  She will have the enteral nasal tube feeding in Dec over Christmas break and she can't wait.  She wants so badly to feel good again.  Her knees and wrists hurt so badly.

Is your daughter in remission from her last flare?  What is she taking and how is she functioning?  Has she had to have any surgeries?

Take care.

Jen

Posted 11/26/2009 12:11 PM (GMT 0)
Hi Jen,

I'm sorry to hear that she's having such a tough time right now. As I recall wasn't she on/starting 6MP? If so, I believe this takes about 6 months to reach it's effectiveness, and also, you will need a metabolite test, (blood test), to see if the 6MP is at the optimal doseage. From what I understand, it can vary widely.

I wouldn't worry about an abscess. It's not very likely in her case, just something you could ask about. The SBFT will give you the answers you're looking for. My daughter has also had two rounds of Prednisone. I hope you get things under control soon. Please keep me posted about the results.

My daughter has been on Imuran for about 10 months now. THey had to increase the dosage once. It seems to be working. No surgeries. 

Tom.

Posted 11/26/2009 1:01 PM (GMT 0)
Tom,
Glad the Imuran is workign well for your daughter. I believe the doc did do a metabolite test on mine for the 6mp, I have not been made aware of the results as of yet.

I checked out the teens Crohn's website and unfortunately it doesn't seem to be something I want her on. Lots of scary stories and even s-- talk. I guess they (the teens) need a forum they can ask candid questions on, but it isn't the right place for my daughter right now. If your daughter would ever like to be web pen pals with mine, I think Marie would like someone to share things with. As yo can imagine her friends don't quite understand what she is going through and she doesn't feel comfortable sharing the whole truth.

Her doc has uttered Methotrexate as a possible drug change. I am not sure that even though it is to be a wonderful drug, that we will make the change due to the side effects.
God Bless and Happy Thanksgiving,

Jen
Posted 11/26/2009 4:26 PM (GMT 0)
Hi Jen,

I hope that before you make changes to the maintenance drug, that you're sure the 6mp isn't working. I've heard that even though 6mp and Imuran are pretty much the same, some have done well on Imuran after not taking to 6mp. 

I have a co-worker who's daughter is on Methyltrexate. She has Colitis, but it seems to be working for her with no problems. 

I'll mention the "web pal" idea to Holly. I'll bet she would really like that. She doesn't discuss her Crohn's with anyone. They even brought up Crohn's as a discussion topic in her Grade 11 health class, and she didn't say a word. It was hard because their were all kinds of misconceptions and myths circulating around the class. 

Hollys pretty shy at heart, but she might warm up to it. She would never go on a Teen Crohn's site. She does like Facebood though. Is Marie on that?

Once again, I really hope you get things back on track. I'm sure once you get the meds sorted out, she'll be thriving.

Tom.

Posted 11/26/2009 7:46 PM (GMT 0)
Tom,
Thanks for the info. Yes, Marie is on facebook. Marie Witer.

Jen
Posted 11/27/2009 7:03 AM (GMT 0)
Hi tom and Jen,
I am 16 and if your daughters would like to talk with me I wouldn't mind. What the heck is a enteral nasal tube feeding?
Posted 11/27/2009 7:17 AM (GMT 0)
I went on the site starbright world website when I was 18, just for something to do when I was up all night and it kinda scared me cause it's for chronically ill teens (which I was/am) but alot of the people I talked to had diseases that were possibly terminal and were in much tougher situations then I've found myself in, and that kind of thing. It was incredibly unsettling to think that I was eligible to join the site in the first place, and kind of just made me feel more like a sick person. Anyways I guess I'm saying it might be less distressing to have a friend through your parents to talk to
(sorry if I come off insensitive I'm not sure how this sounds!)
Posted 11/27/2009 3:57 PM (GMT 0)
sickandlucky,
I totally agree. The degree of illness and everything may be more settling than helpful to my daughter.
She does have one friend with a digestive problem, not crohn's, but something else. They do share some thoughts, experiences and feelings.
Thaks ,
Jen
Posted 11/27/2009 4:01 PM (GMT 0)
pezdog,
That would be nice for her to have another person with Crohn's to share things with, as she isn't comfortable with a forum. she is very private.
Oh, enteral nasal tube feeding is where I would insert a tube down her nose that will run all the way to her stomach that is connected to cans of very high protein/high fat (or whatever the doc orders). This aids her in gettign more calories throughout a 24 hr period that she can'tpossibly consume in the 16 hours she is awake.

Take care and thanks for your input. I will tell my daugher that yo are willing to discuss things.
Jen
Posted 11/27/2009 4:36 PM (GMT 0)
Jen,

I'm 23 but I was diagnosed when I was 16, if your daughter wants to add me on facebook  to talk or ask question or just to have a friend with Crohns please feel free!  That goes for anyone elses children as well!

Melissa Gebhardt

Pittsburgh, PA

Posted 11/27/2009 11:42 PM (GMT 0)
thanks, Melissa, I will let her know.
Jen
Posted 11/28/2009 2:52 AM (GMT 0)
Hi Pezdog,

Thanks for offering to communicate. Perhaps you could relate how you've been and how you're treatment is going. 

Hi sickandlucky,

I agree, a website like that while very supportive for some, could be overwhelming too. 

Hi Melissa,

Thanks as well for that offer. It would be great to offer some advise/help for these teens especially since you've been there.

Tom. 

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