For those of you with children

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Veteran Member

Date Joined Nov 2007
Total Posts : 4412
   Posted Today 2:53 PM (GMT -7)   
I was very sick three weeks ago, (doing better now) Now that I am better, my 14 year old daughter admitted to me that she was worried that I was going to die. We ended out having a long talk about Crohn's disease, and I was able to re-assure her that is it a chronic illness and unlikely to be fatal. (I better be right!) I feel terrible that I didn't anticipate her fears in advance. I did talk to her about the Crohn's diagnosis, but obviously not enough to quell her fears. I feel I could have spared her a lot of anxiety if I would have talked to her earlier. Please make sure to talk to your kids at whatever develepmental they can process. I love my daughter so much, and I'm sure youlove your kids too! We don't know what our kids are thinking unless we ask. I should have known better!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted Today 4:50 PM (GMT -7)   
Good thinking Gumby. My dad was in the hospital for a bleeding ulcer once and another time for a hernia. My parents didn't let me visit him (I was very young) because they thought all the wires would scare me. The unknown scared me more and I thought he was dying too. Your idea is a great one.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted Today 5:01 PM (GMT -7)   

Great idea, talk to your kids. It is pretty easy to give them the simple facts and then let them ask for as little or as much info as they want.

I applaud you for posting this topic.

Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
*~* *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted Today 5:36 PM (GMT -7)   
As the daughter of a CDer and a CDer myself I have to agree fully. Because my Mom was always very open about what was going on, I was not all that intimidated or thrown by my own diagnosis. Because there is a huge chance that one or both of my daughters will inherit this DD I have followed my Mother's example (At least 4' possibly 5 family members with IBD). I have always tried to explain things in terms that they could handle and that were appropriate for their age. I have never made it a "big" deal. It is something that I have to deal with, just like everyone else in the world has something that they have to deal with. I have made sure they are aware that CD, if managed properly, can be kept under control and will not severely impact my life expectancy. When they get upset that I have to be in the hospital, I tell them it is what I have to do to take care of myself so that I can be there for them in the long run.

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Regular Member

Date Joined Jan 2008
Total Posts : 100
   Posted Today 6:31 PM (GMT -7)   
This is a great idea. I find myself trying to explain to my 5 year old all the time the reasons that I can't eat the same foods that she can. I see that she is often upset with me when she wants to go to McDonalds or some place that I just can't eat. She will get mean and say well Mommy doesn't need to eat or Mommy can eat when we get home. It hurts my feelings sometimes but I often go and just watch them eat and drink my water. I never try to let my CD interfere with my family. Does anyone have any suggestions for me as to maybe a better way I can explain things to her?

Amanda: age 23 happily married for 6 years Mother to Kirstiana 5, Savannah soon to be 2, Halen 11 weeks
I have had symptoms since childhood but I was FINALLY diagnosed 1/14/2008! I also have scoliosis and hypothyroidism
Currently taking: Pentasa 500 mg 2 tablets 3 times daily  Darvocet 1 tablet every 6 hours as needed (I can't take due to watching my children it makes me drowsy and sick) Prednisone 60 mg to decrease by 10 mg weekly until down to 2.5mg Ranitidine 300 mg 1 tablet twice daily Women's one a day multi-vitamin with double the calcium once daily, I take levoxyl 200mcg for my thyroid issue.

Veteran Member

Date Joined Nov 2007
Total Posts : 4412
   Posted 1/21/2008 2:52 AM (GMT -7)   
Hi Amanda,
At five years old, kids want their parents to be all-powerful, and are focused on themselves and their own needs. That is exactly how they should be. She is old enough to understand that mom's body works differently than hers, and so you need to eat different kinds of food in order to feel well. Try bringing your own snacks or food when you go to McDonalds, so you don't feel deprived, and so your daughter does understand that everyone needs to eat. Long before I had my Crohn's diagnosis, I realized that I could not tolerate any fast food. ( I thought I was just " getting old" as the reason I couldn't eat it!) My two kids were both in travel soccer, and we often had to stop for fast food along the way. I learned back then that having my own food really helped. I rememer when my kids were young, ( they are 18 and 14 now) I always perceived my son as older than he was because I compared him to my younger daughter. Remember that Kirstiana is only five....there are limits to what you can explain....what she needs most is re-assurance, a sense of safety and love. Hope this helps.
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares

Regular Member

Date Joined Jan 2008
Total Posts : 100
   Posted 1/21/2008 10:27 AM (GMT -7)   
Gumby, This is very true. Thank you for the great advice!

Veteran Member

Date Joined May 2003
Total Posts : 2481
   Posted 1/21/2008 12:14 PM (GMT -7)   
I have a 4 yr old. I take him out to eat often, I eat what I can or not at all when we go out. He never asks why i don't eat at the restaurant, but if he did, I'd tell him I already ate, or that this is a treat for him. I certainly wouldn't say oh mommy has a boo boo in her tummy and if I eat what you're eating I'll get really sick. No way will I burden him with worries about me or guilt about me not being able to eat with him sometimes.

I don't mention to my child that I feel sick very often, I keep it to myself or complain to my husband or other grown ups.

I'd like to do more with my son, but I do what I can and he never asks me about my many toilet trips or why he can't sit on me or touch my tummy. I suppose once he starts asking me about it, I'll tell him the truth and NOT make a big deal about it because I don't want to burden him. He's a child and shouldn't have to worry about mommy being sick all the time.
If, at some point, he has concerns or worries about me, I will be quick to quash them. The truth is, we may suffer to the point where it is excruciating, but we will likely be around to see our kids grow up and have kids of their own.
So I have to agree with gumby that at some point we should ask them about it, and then put their fears to rest with lots of reassurance and hope.

Post Edited (Roni) : 1/21/2008 12:24:03 PM (GMT-7)

Regular Member

Date Joined Dec 2007
Total Posts : 43
   Posted 1/21/2008 12:52 PM (GMT -7)   
With my husband having CD and he is very sick at this time, we have set the 3 boys down and talk to them of what's going on with him and the treatment that he's going through. When the TPN nurse was here, my middle child was in the middle of knowing what's going on and how to take care of his dad. They all pray for their dad everynight and try to give him some encouragement. This time it's easier to talk to them then it was even 6 years ago. I don't know if any of my boys will get this disease, but I pray that they don't get it. My youngest who is 13 has a bathroom problem that he can't feel when he goes to the bathroom he's been to the doctors and he has to take miralax to soften the stool. Well I hope that everyone will be able to communicate with their family and friends about this disease. My boys have seen alot with their dad very sick and now that he's on TPN they also see him getting better to talk with them.

I wish they would have started him on TPN earlier because we do see a difference with him stopping food going through his small bowel.
Thanks Peg
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