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My daughter was diagnosed w/ ulcerative colitis November 2009.  The biggest struggle I deal with now is stepping back and allowing her to be as "normal" as possible, when she is healthy and when she is flaring.  There is this desire to put her in a bubble and keep her close to me so she is not around anything that may add to her illness.  It has been difficult for me to acknowledge my loss of control and to deal with the fact that this is her disease and I cannot "fix" her.  Someone suggested looking into sharing with other parents.  Just wondering if anyone else has dealt with this?

 Reply posted for KC'S Mom.

I understand. It is very difficult to back off.  Parents become more protective.  I have a 23 year old who was diagnosed at 12.  Personally I believe that it becomes a learned experience. 

 Reply posted for KC'S Mom.

My son was diagnosed last January and he is now 9...I will someday have to deal with this...but for now we do homeschool and we have control of his UC. From previous posts when they become teens they need more independence...this will be hard...hopefully we can take baby steps towards this...Good Luck and remember some things are out of our control as hard as it may seem...I tell Victor let us deal w/the worry and when you become an adult you can deal with all the decisions and we are here to listen and help...but ultimately the decisions on surgery or care are completley up to you. (sounds reasonable...but still will be hard to "let go")

Marcella

 Reply posted for KC Mom.

My daughter is not allowed to carry her medication at school so it is with the nurse. I did buy her a pill box with 4 x day/7 days, it works great I fill it with all her pills and vitamins then it stays in the kitchen and I can just look and see if she took them without having to ask her all the time. This pill case also allows you to take out a day and bring it with you, it works well.

 Reply posted for KC'S Mom.

Backing off is so hard, almost as hard as it is to be a teenager these days.  My daughter w/cd is 11 (tommorow), but I have one that will be 15 and I know how much this world has changed since I was a teen.  It is so difficult for them to feel accepted, and thankfully for you she is active w/friends, school, etc.

We were having trouble w/Lizzie every night at dinner.  It had gotten so bad that I spoke with the social worker from her GI's office.  I was given the advice of be "light".  Act as if it is no big deal.  When I was told that I thought, yeah, right - like that is going to work.  She explained that Liz must be feeling that every time we all sit at the dinner table together that all eyes are on her plate.   She was right.  It was hard in the beginning, nearly bit my tongue off a couple of times, but ignoring her plate and keeping regular dinner conversation going worked.

During a support group meeting, we came up with for the older children who have cell phones, have them set an alarm as a reminder.  This way, we the parent aren't the paranoid "annoying" people they think we are and they are gently reminded like "adults" they have something to do.   Mention it to her, she may use it. 

As a parent, it is hard to let them grow up (chronic illness or not).  I think it is part of being parents.  Know there are lots of parents just like you all trying to do the best for our kids.  

Lizzies Mom

 Reply posted for alanschachter.

I suppose I don't have any strategies... I had to make a chart for the steroid titrating.. this was our first experience on steroids and weening has been difficult.  I mostly keep on top of her meds by asking if she took them and re-filling them when needed.  I also schedule her appt's and take her to them.  I did go in and speak w/ her teachers and coaches when she was diagnosed to find out what needed to be done to accomodate her.  When she got a job I filled in her boss.  Other than that, I just pray, A LOT... I was told by lots of people I have to let her live her life.  I want her to live her life so I don't know why that is so difficult to do!!

 Reply posted for Momcat.

Hi, I do think we sound alike... I want to be in the know all the time.. I do not like that her meds stay w/ her because I feel the need to constantly ask if she took them.  She gets really annoyed w/ me most of the time!  She takes her one med 3x a day and has to have it on her due to school/sports/work... I want to buy her a pill dispenser and have it all laid out for her each week/month... She thinks I am crazy and sometimes I feel like I am !!   Oh btw, it would not let me log on, so I changed my name to KC Mom instead of KC'S Mom.. not sure what was going on w/ that...

 Reply posted for KC'S Mom.

She is now 15.  She was 14 when she was diagnosed, but was sick for over a year before we knew what was wrong.  She is an amazing child, and she is truly my hero.  I don't think I would be as strong as she is.  I struggle with all the "normal" feelings a parent has when something is wrong, the guilt, the worry, the frustration.  But I definitely have a hard time letting go. She is the oldest of my children.  She is a sophomore in High School and very involved with school, friends, sports and even has a job.  Sometimes I wish she would slow down...but then I feel that it is good that she does not lay down and give in to this illness..right?

 Reply posted for KC'S Mom.

Hi There

My daughter is almost 15 and was diagnosed about 8 months ago. I don't know how your daughter handles her illness but I think we have a few things in common, I to try to protect my daughter from everything, I like to keep her close to me and make all the decisions about what is going on. For the most part she lets me but I don't know if that is doing her any good. She still has so many bad days that sometimes I just don't know what to do, I just want her to feel great and enjoy being a teenager. As this illness is different for everyone I like to learn as much as I can, if you want someone to chat with I would be interested just let me know. Nothing is worse that being a parent and not being able to fix something for your child.

 Reply posted for KC'S Mom.

How old is your daughter?