Skip to main content

After three years of suffering, tears, praying, trying, things not working my now six year old will be having her colectomy (UC) on the 28th.
Thank you all for the time and help you have given me, your examples have given me strength. Please keep my girl in your thoughts. I pray this is the end of this nightmare for her. I know there will be bumps in the road but hopefully in time we can say how thankful we are that this was an option for her.
Original Post
I was hoping that since you haven't been posting that maybe she was on the mend. So sorry it has come to this for her. But on to the positive side: she will get better now and she won't be sick anymore. Your little girl will get her life back. June 25th will be the two year mark of getting my life back. I can't believe it's been two years since my surgery.

Tons of prayers for your daughter, you and your family. Please keep us posted.
Several people had told me that this would be a "birthday" as a whole new, and better, life would begin. It was true.

Over the years, I've watched several young kids undergo a colectomy - some permanent, some temporary, and everyone of them had a much improved quality of life. And it happened quickly.

As a parent, my biggest adjustment was to find new things to focus my energy on, since my child's health was no longer running my life!
Thank you all. It is time, I was told I would know when I it's true. I just can't imagine continuing anymore. I pray I am making the best decision for her. She is a strong girl but this needs to end.
Amy, we'll be at Sick Kids in Toronto with the chief of surgery. We moved to this city in case we ever needed this surgeon so I don't feel I could do any better in that department.
Becky, I hope it's true in our case as well. I look forward to not knowing what to do with myself (don't know if that'll happen since I will hopefully have a healthy 6 year old and a 5 year old too - I hope I'm busier than ever doing all the things we should be doing actually!)
We don't know if it will be permanent or not yet, at this point we hope all goes well, they don't find CD and we move on with life with an ostomy and no major issues. That's our goal and if we achieve it we'll be very grateful.
It must be unbearable pressure having to make this kind of decision on behalf of a child. I am actually in awe just thinking about it and how I would feel if it were my kid. Plus, I have been there on the other side of it.

I had UC from age 9 and although no surgical decisions needed to be made until I was 29 years old, I recall the immense worry and pressure my parents felt as I bounced from one hospital to the next, 3 in total during the 4th grade. My parents are the kind of people that wear their emotions on their sleeves and during those multiple hospitalizations when I was a 9 year old, going through a lot of testing (because frankly the doctors back in 1972 did not know what was wrong and they did not have the same handle on UC as they do now), it wrought hell on my parents and especially my mother. I remember a doctor talking to my mother at Montefiore Hospital in the Bronx NY, and seeing my mother collapse in my father's arms. I learned much later on, years later in fact, that the doctor told my mother they were going to be testing me for leukemia. I probably should not have had to see this, but I did, and my mental outlook seeing my mother like that was not good.

The most important advice I can give you as a parent of a child sufferer of UC: show nothing but strength and determination to your daughter in your face, in your body language, and in your voice, even if that is not what you are really feeling. You have to be a great actress, an Angelina Jolie or whomever your favorites actress is. Kids take their cues about how their mental outlook should be from their parents, and you need to be stronger than her so that she can follow your lead.

Good luck and keep us posted on how this goes.
Last edited by CTBarrister
I have followed your story for several years and I know that you have done everything for your daughter and researched this disease to the 10th degree. I am sorry she has to have surgery but I am hoping that in a couple of months both you will see the healthy daughter you have been missing. All my best to you.

Sue Big Grin

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
Link copied to your clipboard.