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Hi all.  My 15 year old daughter has UC (for 2 years now).  Her body is not responding very well to meds anymore, even Remicade.  The dr. wants to discuss options with us tomorrow - including surgery.  I am trying to help my girl understand all of this, but she is so angry.  She won't even talk about it, and says she won't even consider it.  Has anyone else had to help a headstrong, angry teen through this situation?  We appreciate any advice you may have.

 Reply posted for venushayes.

Re: Remicade.  My son has been on Remicade for just over a year.  It is beginning to fail for him after being a wonderful relief for about a year.  He had surgery in 2003 and about 2 feet of intestine was removed.  He spent nearly 4 years in remission after that and the Remicade worked wonders to begin with.   Not sure what happens next.

 Reply posted for hcmom66.

What great posts!  I haven't been on this forum in a while.  My son,14, (diagnosed with UC in Feb. '09) has been on a physical/emotional rollercoaster and we're all along for the ride.  I started looking at this forum today because last night he told me "if this is how I'm going to feel, I just want them to take my colon out".  How does a parent respond to that?  He's presently taking prednisone, Imuran, Flagyl, Prilosec and a multivitamin.  I know he's feeling depressed, but anytime I try to offer help or getting him help, I'm the "bad guy".

I would like him to connect with other teens out there that have this so he doesn't feel so alone.  As a family, we try to help, but I think he needs someone who knows "exactly" how he feels.

Any suggestions on where teens can go to find good, safe support?

 Reply posted for venushayes.

Does your son have CD or UC?  Your 9 year old was just diagnosed and the doc wants Remicade first?  I'd think he'd try the " triangle" of treatments first starting with Asacol or Lialda or even Colazol then move up.  I think I'd really get a second opinion.  My daughter is on her 4th doc not even including her pediatrician.  Now that she is 18 she can go to an adult doc.  She had her second colonscopy April 22.  She was so nervous, she was crying before she had to be wheeled in.   Her scope showed everything was great although she had 3 polyps which the doc said were normal for UC.  He said they are called inflamatory polyps.  He is reducing her Azathioprine by 1 pill in the evening and then she will take a blood test in July and hopefully keep reducing it.  I thought she could just stop it at once but I guess she can't.  She is still on 4 Lialda's in the morning and the probiotic and Women's One a Day vitamin.  I am so happy she's in remission.  I was reading the other posts and I was reading the one with the 16 year old daughter who thinks us parents don't know anything.  I think it's a teenage thing and they think they know it all.  That's why we need to be their advocate and be there getting other opinions and helping them.  I told my 18 year old daughter that she will have to use her judgement when dealing with doctors in her life.  If she feels it doesn't sound good to her then she can get another opinion.  She would have been on Remicade or Humira if we had stayed with her previous doc and she's not on it and started the probiotic and she's in remission.  It must be so hard for teenagers to deal with all this on top of school, their social life, work, etc.   

 Reply posted for EZ.

That makes so much sense to me.  I'm relatively new at this Crohn's mom job.  Diagnosed in January 2008, my daughter is very picky and loves sugars, startches and soda.  Hates yogurt.  Her doctors warned against probiotics but the more I learn, the more I see how much a person's diet affects their health, duh.  Sugar (which starch turns into) is very inflamatory for the body.  As a female, you can develop yeast infections from too much suger.  Therefore, I assume that a probiotic, which theoretically would control the overabundance of bad bacteria, must be a positive thing.  Right?  How do I get my 17 year old daughter to realize how smart I am?  I am scared for her.

 Reply posted for hcmom66.

My son was diagnosed with Crohn's Disease in 2007. He has gone through a multitude of medications. Last month he had to have surgery. He had gotten to the point of not being able to take anything by mouth-solid or liquid, without being in a tremendous amount of pain. He actually was begging for surgery. They removed 2 feet of his small intestines and performed 4 stricture plasties. He now feels great. Eats everything in sight. Finally gaining weight :) Your daughter is probably scared. But she will feel so much better afterwards.

 Reply posted for EZ.

She has to fight...she has to be mentally strong, the mind set is important, I know for my self, when i am feeling sorry for myself, it gets so hard, and trust me, i am not minimizing her feelings, this disease is serious and painful, and yet people cant see it, like a broken bone with a cast, so its so hard for others to understand the draining, constant, annoying feeling that takes over, yet we have to be strong for them, and remind them that they are healthy and capable of being well. I hate that every time i look at my son, i want to hug him and cry, and i cant...i remind him that what he thinks about, he brings about, and that reminds me to be his rock.

A lot of the gluten stuff really doesnt taste that good, but they say once you get the cravings out of your system, you dont want them nearly as bad, kinda like de-toxing...for me i just tell myself i am allergic to them and if i eat them, i will feel like sh_t! the body is capable of healing and i pray her colonosopy shows a lot of improvement...keep me posted.

 Reply posted for EZ.

Hi, i would love to know your thoughts on the remicade. my 9year old son was just diagnosed and that was the first thing my doctor wants to put him on, any feedback?

 Reply posted for venushayes.

I have bought a few things that are gluten free.  My daughter actually made some pasta and ate it but didn't like the taste.  She is such a picky eater.  She did feel good though which a good thing.  It's almost like my daughter rather suffer than eat what would help her even more.  She is trying though to cut lots of processed foods, added sugars, limit her dairy and wheat and no sodas out of her diet.  Ever since she started the probiotic though, she is feeling much better.  She's having another colononscopy April 22.  I'm hoping her colon looks better than 2 years ago.  It's hard to think that she is 18 years old and is already having her second colonoscopy and I haven't even had one yet. 

 Reply posted for EZ.

I am so glad to hear someone else talk about pro biotics...and bacteria over growth...it is quite maddening to me that doctors seriously think that what is put into our bodies with this disease doesnt really matter, it really does. I have had crohns for 20+ years and my son was just diagnosed last week. he is 9! so young!!!! Have you ever heard taking gluten completely out of your diet will help? I have heard and try to personally practice gluten free, although it is very difficult, especially when you feel like crap, it seems to be the only thing you feel like eating. now that my son has been diagnosed and we havent gotten over the devastation yet, I  i will try it with him, after all, all gluten is inflamitory! just a thought.

 Reply posted for hcmom66.

I wish I could help, but I feel your pain. I too have a 15 year old daughter with UC. She went through most of the meds this year, and was only diagnosed in Jan of 08. On Remicade now, and when she showed symptoms again, her doc. mentioned surgery. I am not ready, and my daughter won't even talk about it. "I WILL NOT" she says. A good surgeon will tell you that the surgery is more successful in a non-emergency case, and when a patient is feeling pretty good---not so darn sick they can't recover well. We may be in the same boat. I think we will try Humeria, or more frequent dosing of the Remi., before the surgery option. Let me know what you learn.
Kathy

 Reply posted for hcmom66.

My 18 year old daughter has UC diagnosed 2 years ago.  She is on her 4th doctor.  Her second doctor who we only went to one time suggested surgery right away.  When that doctor said that, my daughter looked at me with this look I'll never forget.  I can't imagine what went through her mind.  Surgery is the last option.  I'd get another opinion.  What meds is she on?  Is she on any probiotics?  Is she watching her diet also?  My daughter is on 4 Lialda, 3 1/2 Azathioprine, 1 Women's One a Day vitamin, 1 Ultimate Flora Critical Care 50 Billion probiotic.  She was on Canasa and Flagyl which worked for a while but her flare came back.  Then on Cortifoam which didn't work.  The only thing that worked was when she watched her diet (no processed foods, no soda, no added sugars) and took the probiotic.  She's feeling much better.  The new specialist said lots of UC patients have "bacteria overgrowth" and the probiotic works very well.