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Concerned mom!
New Member


Date Joined Jul 2007
Total Posts : 19
   Posted 10/4/2007 10:19 AM (GMT -7)   
My 19 yr old daughter diag w/chr on 7/07...Bless all of you
w/the same thing.....Even on the meds she is still in alot of
adb pain,has not had the diarrea part.....
does not matter what she eats she's in pain...went to the hematologist yesterday, now she's going for a iron infusion
next week...went back to her GI today, states that the next
step is Humira and if that don't help surgery????? She is in very
much denial/angry that is been hard on all of us.....She has lost
a lot of hair also, she had the most beautiful thick hair....
If anyone is out there, who is her age, please respond also...and
all the veterans....please......
Im in the process of finding her aged chronies :) Ive been to
two different support grps and there all older/will not work for
her......I thank you all for your ?'s and answers.
Ive been hesitant on posting/my first time....
 
My prayers go out to all of you, GOD BLESS
Meds
pentasa,predisone, hydrocodone as needed/but refuses to take
 
 

My daughter was just diagnosed w/CD on 7/12.
She is currently on predisone which Dr. is weaning
her off. Pentasa and Nexium.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/4/2007 11:21 AM (GMT -7)   
First off welcome to HealingWell. I have had Crohns since I was 18 years old and just turned 50 this week. (eek!) It is such a hard disease to have at such a young age. First off the hair loss, it is probably because 1) She is anemic, this can cause some hairloss. 2) Some of her meds (Pred) can cause some hairloss. She might want to take a Folic Acid supplement (at least 1 mg) or Biotin, that will help slow the hairloss down. Once she gets thru this flare, the hair will grow back. I think it might be a good idea if she tries Humira. Alot of folks on this board have had success with it and also with Remicade. I wanted to share a website she might be interested in joining, its called Teens with Crohns Disease. I don't have the web addy but you can google it. It is a group of kids her age that talk about life with Crohns, much like this one. Their are alot of younger folks with Crohns on this board too, she is more than welcome. Sure hope she gets feeling better. My first flare was my worst too.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/4/2007 11:22 AM (GMT -7)   
Oh also, you might ask her GI for some antispasmotics like Bentyl or Levsin. Those help with the cramps alot and aren't quite as strong as the Vicodin.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Malibu05
Regular Member


Date Joined Sep 2007
Total Posts : 98
   Posted 10/4/2007 11:56 AM (GMT -7)   
I'm 20 years old and was just diagnosed with Chrons in Sept 07. I'd be glad to talk to your daughter. It'd give me someone to talk to too!

potty pooper
Regular Member


Date Joined Dec 2006
Total Posts : 375
   Posted 10/4/2007 11:58 AM (GMT -7)   
Welcome to HW, and sorry you need to be here. I can relate well to you daughter since I was also diagnosed with CD when I was 19. I am now 61 and have lived with this for 42 years.

My mom (and dad) have had the misfortune of having all three of their children (one of my brothers had UC, and the other has CD) suffer with IBD. It was hard for them to see their children suffer, as I'm sure it is for you. I have 3 daughters and 2 granddaughters and I pray everyday that they will stay free of IBD.

With that said, I want to you know that it is possible to lead a very productive and happy life with this disease. Yes, often we have limitations due to pain and diahrrea, and medicines with unpleasant side effects, and many of us have required surgery (I have had 2 bowel resections). That's unfortunately the reality of this disease. But unlike when I was diagnosed so many years ago, there are many new treatments available that have been successful for many Chrohns sufferers, specifically remicade (which has helped me tremendously) and Humira.

Your daughter's GI is you best guide. Feel free to ask any questions you have here. There are many caring and knowlegeable people that will be glad to help.

My best wishes.

MBJOH
Regular Member


Date Joined Mar 2007
Total Posts : 257
   Posted 10/4/2007 12:10 PM (GMT -7)   
Concerned Mom - I can sympathize with your daughter also, I was diagnosed at age 19 also and am now 36. I was in denial for a long time and didn't seek care right away and then it took some time for Dr.'s to figure out what I had. It was very hard to deal with at 19, you think you are imortal at that age and developing a chronic illness is the last thing you want to hear. The good thing is there are many new meds coming out each year to help cope with Crohn's. Humira being one of them. I have been on it since the end of March and it has really helped. But before your daughter jumps to Humira has her doc talked to you about Imuran? In my opinion that would be the next jump from where she is at now. Just a thought. And another alternative to Prednisone is Entocort - it is also a steroid but doesn't have as many side effects as pred. My heart goes out to your daughter. I pray every night that my son escapes having this dreaded disease. But your daughter needs to keep her chin up - you do learn to deal with it. I went to college, I have a great husband, a wonderful son and work fulltime so there is a life with Crohns. It could be a lot worse. Best wishes. MB

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 10/4/2007 12:14 PM (GMT -7)   

Hi,

My 19 yr old daughter was 18 and in college when diagnosed. Her reaction was one of acceptance...actually, she was relieved to know it wasn't, as many docs had claimed, all in her head. But I don't blame your daughter for being angry. It's certainly a dirty trick to, just when a person is about to spread her wings and fly into her adult life, find out she has Crohn's. 

Now is the roughest time for your daughter and family, trying out different meds to find what works for her. (Like her, my daughter never had D...she has Crohn's only in the terminal ileum and is now in remission thanks to Entocort.) Humira is not necessarily your only option for a next step. The following link takes you to info from the Johns Hopkins web site about the different meds that can be used to treat Crohn's:

http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease4&organ=6&disease=21&lang_id=1  

Any mesalamine med like Pentasa (also Asacol and Lialda) can cause hair loss. Pentasa is considered to be a less effective but fairly safe med for Crohn's (at least compared to prednisone). However, in my daughter's experience, iron, B12, and serum folate dropped while she was on this med, even though she was on high supplements of all three vit/minerals. (Also, anybody on a med like Pentasa needs to take folic acid supplements.) If Pentasa works for your daughter, great. But if it doesn't then you might ask your GI whether it can be stopped. Because none of these meds are benign. If they aren't helping then, with their potential to interfere with the body's absorption of important nutrients, even the "safer" meds" like Pentasa can fight the body's ability to repair itself.


Daughter (19) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress and needing more fiber but landed in hospital in 3/06 with cramps, vomiting, stricture. In remission with Entocort 3 mg (one pill), SCD multivitamin, homemade yogurt, vit D3 1800IU, 900+ mg calcium, 50 mg B complex vit, 25 mg iron. Just quit the SCD diet.   
 

Post Edited (njmom) : 10/4/2007 1:24:38 PM (GMT-6)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/4/2007 12:33 PM (GMT -7)   
Hi I am glad that you have taken the step to join us and you and your daughter will benefit I am sure by being able to talk to others who have been there. The blood transfusion should certainly help her to rebuild her B!2 ,has she tried ensure? THe pred. sort of makes a person say what's on there mind and makes a person feel a little spaced out and forgetful. I am glad you are able to hep her threw this part of her disease especially since she isn't yet over this flare. Rem. and Hum. have as others said helped a lot of people. I am on Rem. and would of had to have surgery without it. The pred. helped me alot too to get feeling better and got me out of the hospital. Hopefully she will get involved with her disease and start talking to others that have it. The support helps alot. lol gail

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 10/4/2007 1:20 PM (GMT -7)   

It's certainly understandable for your daughter to be angry.  I'm sure we've all felt that way about having Crohn's.  Prednisone can cause mood swings for some people, and it's possible that it's intensifying her reaction.  Her anger may be easier to deal with when she tapers off the Pred.

I was on hydrocodone for a while, and I hated it,too.  It helped with my surgical pain, but it made me nauseous.  Her GI (or whoever prescribed the pain meds) should be able to give you other options.

If you're at all concerned about the treatments the GI recommends, don't hesitate to get a second opinion.  I changed doctors two months after my diagnosis because I didn't like his "let's wait and see how sick you get before making any changes" treatment plan.  It was the best decision I could have made.  Humeria has helped a lot of people, and surgery is an unfortunate reality for some Crohnies.  But they aren't the only possibilities. 

Good luck to you and your daughter.  I hope things turn around for her soon.


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 10/4/2007 4:42 PM (GMT -7)   
Hi Mom. I'm sorry you've had to find your way here. I was diagnosed at 16, I'll be 35 next month. It can take a while to find the right meds, and that can be frustrating. Tell her not to give up. I don't know how bad her intestines are, but if someone says "surgery" - get a 2nd and 3rd opinion. While it can be very necessary, you wouldn't want them to go chopping on her if there were other things to try first. I hope the humira works. Did they say if they would try Remicade?

At 16 I was staring at a future with this lovely "poop disease" as my college roomie put it. I didn't know what would become of me. I've had A LOT of ups and downs with my health, but I'm happily married to a guy who is totally ok with my "poop issues" and I have 2 gorgeous kids. I've accomplished many things. I know she can live her dreams if she puts her mind to it.

Hugs to you and her and God bless. I pray you get the right treatment and she gets relief soon. Tell her to keep her chin up.

Stef

Concerned mom!
New Member


Date Joined Jul 2007
Total Posts : 19
   Posted 10/5/2007 8:43 PM (GMT -7)   
Thank you everyone for your warm welcome to hw...
Like I told my daughter the other nite when she was
crying...I will never give up on learning and researching
this disease, I belive someday there will be a cure, so
we all have to share what helps, even though no two
people are alike......
Warm hugs to all of you yeah

My daughter was just diagnosed w/CD on 7/12.
She is currently on predisone which Dr. is weaning
her off. Pentasa and Nexium.


Concerned mom!
New Member


Date Joined Jul 2007
Total Posts : 19
   Posted 10/6/2007 6:38 AM (GMT -7)   
malibuo5, I don't think my daughter is ready yet, but she is working on the aceptance of CD, I can
tell by some of her responses in the last few days.....I hope you are doing well and I would love
to chat w/you, on how you are dealing.....
Take Care and God Bless!!!
My daughter was just diagnosed w/CD on 7/12.
She is currently on predisone which Dr. is weaning
her off. Pentasa and Nexium.

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