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I have a 9 y.o. daughter with Crohn's and she gets very nervous about going to catch the bus for school.  She is very afraid she will have the sudden urgency to go and she will be trapped on the bus.  I didn't think of this but now I am trying to figure something out.  Us parents should push for Depends type undergarments for kids.  We REALLY should.  My daughter would be so much more comfortable knowing she had protection - just in case.  To all of you out there who have had accidents:  What did you do?  Did you just wait to get home and take care of it?  I would like to gather advice and/or more ideas on how to protect her.  I was thinking she could use a sanitary pad - would that be ok?  I wasn't sure about absorbency.  I am getting really nervous for her.  The more I read, the more scared I am getting about this disease.  She has had it for 2 years but has done really well with medication.  She is getting over her first really bad flare.  She can't shake the diarrhea.  Will she always have diarrhea?  I feel so bad for her and all you sufferers out there.  I pray to God for a cure every single night.  I am very surprised there is no better treatments out there to keep it in total control.  My daughter takes Colazal.  I haven't seen many emails about this drug.  Have a lot of you tried it?  It seems to work well for her. I pray she can stay on it and stay well.  I am afraid for what the future holds for her. 

 Reply posted for momanddot.

I personally put pantiliners in the back of my underwear and often put a second pair of undies over that.  She might be less embarrassed by that...hard to say.

 Reply posted for MARSHA.

Hi Marsha:  Thanks for the reply.  It sure is scary to not know how to make kids better with medications.  I don't know if I could or would, but have you considered clinical trials?  I don't know if they do them with children.  I am glad that your son is doing much better.  I do feel so sorry for the side effects and it really stinks when there is no other options other than Prednisone.  Has your son been on the Pred for a long time?  My daughter is on I think week 5.  She has been eating a lot more and she put back on the weight she lost during her last flare.  I know Colazal is for mild to moderate Crohn's and UC, maybe that's why your son has not tried it.  The doctor is thinking it may not cut it for her this time around because her flare was in the severe category.  I pray it does work and keeps her in remission.  I hope your son stays well for a LONG time (forever - for all of them!).  Take care.

 Reply posted for momanddot.

I understand about the GoodNites, poor thing, can't say that I blame her. As for medicines, we have tried Pred, Asacol, Pentasa, Remicade, Methotrexate, 6MP, two different enemas(can't remember the names).  I think that may be it.  My son has had a diagnoses of Crohn's for 3 years now and had symptoms probably a year or so before diagnoses.  We have never been in remission, but was close last year on the 6mp.  Unfortunately we had to decrease the dosage twice because of elevated liver enzymes and after the second decrease we started a really bad flare which we then went to Methotrexate and things got really bad fast.  Right now though he seems to be doing much better and we are also weaning the pred.  I cannot wait until he is off of it, he has a really big moon face and has gained alot of weight, and you know kids.  When they don't understand they can be mean.  I hope your daughter continues to do well while weaning the pred.   

 Reply posted for MARSHA.

Hi Marsha:  I'll keep that in mind about the Immodium.  We did try it when her flare was severe but I'm not sure if it helped or not.  We only tried it for one day.  Her current medications are Prednisone (which is being weaned now - we have about 3 weeks left) and Colazal (6 capsules a day).  She is doing much better but I think it's because of the Prednisone.  This is the first time she has had to resort to it.  She has had Crohn's for 2 years and the Colazal worked beautifully until the few times she stopped taking it, then she would flare.  Has your son tried Colazal yet?  It is in the anti-inflammatory category of drugs.  By the way, I mentioned the Good Nites to her and she said "I won't wear them."  I am still going to keep them in the closet and prayerfully she won't ever need them.  Also, the doctor said if the Colazal alone isn't enough to keep her in remission, he wants to try the enema way (because her inflammation is in that region).  There is NO WAY she is going to let me do that route.  Has your son ever had to try it?

 Reply posted for momanddot.

I pray both, well all of our children get better.  A cure being found would be the answer to alot of prayers.  As for Imodium, I gave it to him once and we went in the other direction completely.  He immediately felt bad stomach pain, couldn't go, so I got scared of a blockage and decided diarrhea was much better.  At least I know it is coming out.  So I have never given him anything like that again.  Right now he is on 6mp(again) and pred(again) but it has done the trick for now.  Only two bathroom trips a day and sometimes just one.  And while not diarrhea not formed stool either.  What meds have they given your daughter?  Just curious, we have done about everything out there and nothing has put him in remission yet.     

 Reply posted for MARSHA.

Thank you so much for your reply Marsha.  I'm sorry your son is having such a terrible time.  I feel so badly for the kids, why kids?  I keep asking myself.  They shouldn't have to deal with any diseases of any kind.  I did buy her the Good Nites today but I have a feeling she will be mortified and won't wear them.  I'll leave it up to her, I hope she does wear them at least until she gets to school then she can change.  I pray she does not have an accident.  I know how cruel kids can be.  I'm sorry your son had to endure an accident.  Does Immodium help him at all?  I have that too but I'm not so sure it works much for Crohn's sufferers.  Thank you again and I hope your son feels better soon.

 Reply posted for Kar.

Thank you so much for your reply.  I was talking with a friend and she also mentioned Good Nites.  I don't know why I didn't think of those!  I bought them but I have a feeling my daughter will be mortified and won't even consider putting them on.  I am so afraid that she'll have an accident and be humiliated for the rest of her school life.  I know how cruel kids can be.  I will present them to her and leave it to her.  I like your suggestion of changing once she gets to school.  Thanks again.

 Reply posted for momanddot.

I would try "Good Nites".  They are overnight diapers for larger kids.  I'm a small adult and they can fit me.  Also maybe a change of clothes that can be kept at the nurses office.  She might even be able to change into regular underwear once she gets at school if she felt comfortable enough.  We've all gone through the accidents and it's embarrassing at any age.  I wish her luck in the new school year.

 Reply posted for momanddot.

I also have a child with Crohn's, a 9 yr old boy.  He has had a couple of accidents at school and the school called me and because I was close to the school I took him extra clothes and cleaned him up.  Luckily these both happened while he was in the after school program so I just took him on home.  My son is very self conscious and will not pack extra clothes in his backpack, so we just pray nothing happens.  And luckily for me, my husband or daughter takes him to school and I pick him up.  I thought about putting him on a bus and just couldn't do it for the reasons you are worried about.  Kids are cruel enough to each other so I couldn't put him in a situation like that.  Have you thought about the pull-ups they make for older kids that have accidents at night?  Not sure how they absorb diarrhea but they are like depends.  I know when my son is bad though and does have an accident I don't think anything would help because it is everywhere.  I know what you are going thru, this is so hare on anyone but especially so for children.  I have noticed that because my son has had a really bad flare this summer(in the hospital and had a blood transfusion) that his friends leave him out of their activities alot.  That breaks my heart, but what do I do?   Our children are so strong, much stronger than I think I could ever be.  I also pray every day for a cure, and wish more people knew about this disease and what the people with it and their caregivers go through.  Hope this helps.