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I am a 34 year old mother of a 5 year old girl and a 2 1/2 year old boy and I was wondering if anyone has any advice on talking to kids about Crohns Disease. There are times where I am hospitalized for weeks and sometimes I have a home health nurse when I am home with a PICC line. My daughter seems to worry about me alot and she always looks so concerned as to how I'm feeling. I am not one to lay around when I am home and I try to keep their life a fun and carefree as I can but there are times I feel terrible guilt that my kids dont have a healthy mom!

Thank you for any advice anyone can offer, I am really struggling

 Reply posted for yellie25.

Wow, I could completely identify with your post -- the guilt really is sometimes even worse than the disease. I am 34 and have two children (ages 5 and 3). I've had Crohn's for over 15 years but never had any problems until last year when I was ill for about 6 months and was hospitalized twice, finally resulting in a bowel resection surgery. I will never forget the emotional pain of not being able to sit up and play with my kids for so many months. I felt like a bad parent.

My best advice would be to be very open and honest with your kids. Even very young children always seem to understand so much more than we realize. And I think the scariest thing for kids is not knowing -- logically, they may imagine things to be even worse than they really are. So I have tried to be open and truthful with my kids, especially my 5-year old who can understand much more than my 3-year old. My kids visited me in the hospital and while they were sad to leave at the end, I believe that it really helped them to see me and know where I was and to meet the nurses who were taking care of me. They were scared when I wasn't at home and so it was important for them to see me and be with me.

I think you can explain things in very simple terms and then just let your kids ask whatever questions they have. I don't give more detail than they ask for so that I think they get the information they need but are not overwhelmed by too much information. I hope that this builds trust as well. Interestingly, sometimes what bothers kids is not even what you would expect -- my 5-year old left the hospital mainly worried that I was "all alone" so we had to explain to him that I had nurses and doctors who would help me.

So stay strong -- I think your kids will see what a fighter you are and what a strong person you are. I think our kids can learn a lot about how to handle illness and adversity with dignity. It may also make them more compassionate to others who go through difficulty or are different.

 Reply posted for yellie25.

I am a 31 year old mother of a five year old and a two year old. Since my son was born two years ago I have been really sick. Since my diagnoses in 2000, I was pretty much OK. But then about four months after the birth of my son, I just kept having flares and issues and so now I am on Remicaide (as well as some other drugs). Since my kids are young I don't go into too much detail other than "mommy's got a tummy ache." When I am bedridden my son will come in and give me hugs and kisses and my daughter will rub my tummy and my back and massage my feet. I thought they would be freaked out by the nurse and the Remicaide IV, but they love my nurse and don't seem bothered by the IV. My daughter has been hospitalized in the past for pnemonia, so she was familiar with the IV and knew that I wasn't in pain and that I was OK. My son just wanted to swing around on the pole!

When they are older I am sure I will be able to discuss it in more detail and I pray that neither of them suffer from this illness. Please Lord, let me be the only one in my family to have to deal with this horrid disease.

 Reply posted for yellie25.

Hello fellow Moms w/CD.  I am 39 & have 2 boys; 14 and 9.  Both of my boys are very intelligent & and inquisitive; so, trying to down play things does not work.  I try to explain things very plainly & honestly.  My parents & my husband's parents have been deceased for a long time; so, it is just us...our siblings live faraway.  Needless to say, the 4 of us are a tight knit family.  When I am in the hospital, my husband does not visit much.  He stays home with the boys, running them to practice & such...tries to keep things running normal.  Due to the honesty & the normal pace we maintain, even if I am admitted for few days, my boys stay calm.  That's the best I advice I can offer...be truthful & maintain normalcy.  Good Luck to all of you.

 Reply posted for yellie25.

Hello,

I am also a mother with Crohns! I have had this disease since 1992. I thought I would never have kids after I had my acsending colon removed in 2002 in an emergency surgery. I didnt know how I would take care of a child with this disease. Well, I am 39 and have a 2.5 year old daughter and a 3 month old son. I have managed my disease with Remicade and now Humira however I continue to flare and often feel nervous about the care of my children. My husband tries to be supportative but it continues to be difficult for him as well. The only place I truely find comfort is with God. I pray alot and see counselor to reduce stress. I also find talking with others like yourself helpful. I often say to myself there is a reason more women have this disease than men. Our inner-strength is amazing.

Explaining to our children is a different story. I am still learing. Most of the time I tell my daughter I have a tummy ache. She can relate to that because she has had tummy aches before. I wish I had more advice but find it is an ongoing process as the kids grow and understand more.

Blessings

Kim

 Reply posted for arnette.

Hello, thank you so much for your advice. My children are still so young and don't always understand what is going on. I like to take them to the park and walk around or play with them on the playgrounds. I have bad problems with fatigue so trying to keep up with them gets to be a little much sometimes. Thanks alot I do appreciate it. Take care and God Bless

 Reply posted for arnette.

thank you! I appreciate your helpful advice and kind words!

 Reply posted for aversa11.

Thank you, Thank you for your encouraging words! It brought tears to my eyes knowing that someone goes through (or has gone through) the same issues and that I am not alone! Sometimes the guilt is worse than the disease - I guess being open and honest is the best way to go!

Thank you again for your kind words!

 Reply posted for yellie25.

Hello,

I am also a mom with Crohns disease. I would tell my son I had an "owie tummy" and that was enough to let him know when I wasn't feeling good. When I was in a flair, I just told him my owie tummy was back and I had to be careful, but I still could read to him and do quiet, less active things with him and when I was good, I just did the more active things with him. I f you make too big a deal of being super mom when you feel good, it will just make it harder  for the kids when you are in a flair. Going to the hospital is just part of the  disease and if you tell them you have to go get your tummy checked, they will accept that answer.  I just made it a point to never act like it was a big deal when I was hurting and it seemed to have made it ok. My son is 23 and has never freaked out when I was in the hospital. Its just a fact of his life that mom goes into the hospital occasionally.

 Reply posted for Elissa.

Hi, I have 4 biological daughters and 1 step daughter. I was diagnosed 9 months after giving birth to my first daughter. I truly understand what your going through. Some of the examples:  Mommy has reakkt "bad Owies"in my belly where it caused mommy pain other times, others were Chrones is like a really bad case of the flu. Sometimes its better, but it never goes away. I let them know Mommy and the Doctors are working to make things better and try and be a normal as possible. 

I understand when a flare hits you can't even walk strait...., I tried the PICC but eventually choose to have an illiostomy, letting my bowles rest and that helped alot from major flairs. Then I showed the girls my stoma and what it was for. The worrie does not go away, my eldest is 30 and the youngest is 24 they still worrie when I go into the hospital. To prove it would not limit me, my girls and I rode our bikes and went hiking. For me I rode from Seattle to Portland (STP) and it brought me great joy to finish that ride.......

Hang  in there, please try and understand this does bring an unbreakable bond between you and your kids. Just keep talking to them. When you feel good do the things they love to do.

 Reply posted for yellie25.

Hi, I was diagnosed in 2001 with Crohn's Disease.  I too have two children, my son is 11 yrs old and my daughter is 8 yrs old.  I can totally understand what you are going through.  In the beginning for me, I was in and out of the hospital for about a month and half, also had a picc line.  Yes, your kids are going to worry about you, that shows that they love you and you are nuturing them in the right way.  I told my kids that I have Crohn's Disease, explaining that certain foods I can not eat and if I do eat them, the food gets stuck in my intestines.  Explain that your intestines are like pipes in your body and certain food builds around it and therefore, you get a blockage and sometimes, you have to be hospitalized for it, but that you will be ok.  I do hope this helps you.  Let me know.

 Reply posted for yellie25.

sorry... i know how you feel 

my daughter is the same way. i always am sure to let her

know i will be ok children can be smarter than we think.

 Reply posted for yellie25.

Hello. I am a mother of a three yr old little girl and a two yr old boy. My daughter