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I was curious to know if there were any parents of small children that had colectomies. We seem to have so many questions and worries about our daughter having a colectomy. Katie will have her next dose of remicade late this week and if she has no response then we will have surgery fairly quickly.

I know a few things will be cleared up by our surgeon, but I was really interested in how small children adapt to having to wear an appliance. We are having a hard time when we think about her attending school. I wonder how a young child becomes aware of having to empty her colostomy bag at various times throughout the day. Also, we worry that this is just not a simple operation. It seems that people need multiple surgeries over their lifetime to correct issues with the blockages/stoma, etc... Is there anyone that can confirm/deny our fears?

Any tips/information will be greatly appreciated. It is amazing how we went from a normally happy 3 year old 2 months ago to having to be prepared for surgery now.

Thanks,
Greg

 Reply posted for grhancock.

Greg,

Hi.  I hardly know where to begin other than to tell you that we have been in your shoes.   Try to learn as much as you can about IBD, the surgery options, ostomy care, etc so that you can get comfortable with what feels like the hardest decision that you may have ever made.

My son will be 6 in January and he was diagnosed @ 3 1/2--and we also ran out of options after much too long on prednisolone (we tried remicade, imuran/6mp, and methotrexate).  It has been a very long 2 years, but he is doing the best that he's done since diagnosis now that he had a colectomy in August.  And after his colon was removed, we were finally able to get some clarity that his IBD is UC.    I can say for certain in our son's case and having the luxury of knowing what I know now, I wish we had done surgery sooner.  The appliances are a challenge and not much help from doctors/nurses.  Children heal very quickly and are amazingly resilient--all of this was much harder for my husband and I than our son. 

There's so many questions that you probably have--I'd be glad to contact you directly via email if you are interested.

Keep a positive attitude and  for your daughter!

Kyle's mom

 Reply posted for grhancock.

I am sorry to read your entry with running out of options with your little one.  

I am a parent and my little one has Crohns disease and we have had our share of ups and downs over the years.  I do not have any colectomy experience, but wanted to send my thoughts and prayers to you and your family.  

Lizzies Mom

 Reply posted for grhancock.

I can't help you with info--I have a teen who is in remission on remicade so our experience not useful to you--but your words about going so quickly from having a normal happy child to the place where you now are reminded me of when our son got sick.  I hope you soon get through this and come out on the "other side"  (there is another side where IBD becomes just a part of what is again a normal and happy life for our kids).  Wish you the best.

 Reply posted for grhancock.

Hi Greg,

Our daughter Nicole is 11 and had a colectomy with ileoanal pullthrough (3-stage) when she was 4 due to ulcerative colitis. She is now healthy, full of energy, and doing well in school! She only has 4 bowel movements per day and eats anything she wants.  The gastroenterologists had recommended surgery when she was 3 and we only wish we had opted for it at that time instead of putting her through an extra year of Remicade, steroids, dietary restrictions, and what seemed like endless doctor visits. 

Having said this, surgery is no picnic.  At your daughter's age, very limited explanations are best, coupled with LOTS of TLC.  Our daughter retreated developmentally after her surgeries, barely speaking and showing hardly any interest in anything.  We sent her to preschool instead of kindergarten when she was 5 because in our district, kindergarten lasts all day and psychologically, she was not ready for it. Patience and providing lots of opportunities to try new things without being overly insistent will be especially important. 

About the appliance:  the school nurse will have to assist your daughter in emptying/changing her appliance, and you will need to be very organized (but flexible) about pouch changes.  If your daughter wants to get involved with it, let her.  If she doesn't, don't force her.  And be emotionally prepared for pouch leakages at home (especially at night) and away from home.    The newer pouches may have better safeguards for this; talk to your nurse practitioner about appliances that have a good track record against leakage. 

Please feel free to contact me with any questions.   Surgery vastly improved Nicole's health and quality of life.

Nina