• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My daughter has Ulcerative Colitis

Hi, My name is Janet, I am Doodlehead's Mom:ybiggrin:

My daughter was diagnosed with UC when she was 9 she is now 16. She has had a rough road but doing better.

I think right now our biggest problem is getting her to take her meds. She is on Mercaptapurine (6MP) and only has to take it 1x a day, she is very lucky compared to many who have to take allot of meds more than 1x a day. She has been in remission for over a year and decided on her own she didn't need to take her med. Like most teenagers she knows more than her parents and her doctors, LOL :ylol:

I came across this forum and thought this might be a good place for me to 1. get information and 2. maybe meet other parents who have dealt with handling the challenges of a child with an IBD, 3. get some advise and maybe even help someone else down the road with the same issues.

Looking forward to meeting you all.
 
Welcome to the forum!

I think that you will find many people who can give you good advise about how to help your daughter with her medication in the Parents Forum. I really encourage you to go there.

Also, there is a large body of psychological research that has addressed the struggles parents have helping their teens manage chronic illnesses. While much of the research has addressed diabetes and insulin injections, there is much to be generalized to other chronic illnesses. A lot of that research is available in a Google search and might be helpful for you. There are also therapists who specialize in this issue for families if you feel that that might be helpful.

I hope that your daughter remains in remission for a VERY LONG TIME!!
Lisa
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

Is your daughter still not taking her meds right now? How often does she see her doc for check ups and are they aware of this? I can understand her temptation to not take meds if she is feeling good but it is of course a worry on how long this will now last. Does she follow anything diet wise or does she just eat what she wants? As mentioned if you have not already then do check out our parents forum as there is a great bunch of mums and dads here to have a chat with: http://www.crohnsforum.com/forumdisplay.php?f=49.

I will be keeping fingers crossed that things can continue to stay settled for your daughter, please keep us updated on how things go.

AB
xx
 
Hi and welcome to the forum.
I'm so sorry to hear that your girl is fighting you on the meds.
My advice is talk to her GI. Since she in a couple years will be able to make her own health choices (I shutter to think of that day for my Grace:wink:) maybe having a heart to heart with her GI will open her eyes. Just a thought.
HUGS:heart:
 
Thank you all for the welcome.

Doodlehead has not been taking her meds for over a year. She goes for her check ups every 6 months and yes her GI is aware. We recently took her for a second opinion at another Children's Hospital. Not because we didn't trust her Dr but because we hoped that having another team of Doctors talk to her and tell her the same thing the rest of us are telling her she would realize how serious this is.

Both teams of Doctors have recommended she do a Calprotectin Stool test, which after 3 weeks of fighting us and her Daddy finally threatening to take her phone if she didn't get it done by a certain date she finally did it.

Got the results back over the weekend Her VALUE is >2000.0 and the STANDARD is <or=162.9 and under FLAG is the letter A. This is the first time she has had it done so I have no idea what it all means. I am currently waiting for her GI Dr to call me back. But by the looks of it I don't think these results are good.

So now I wait, worry and wonder what the next step is.
 
Angrybird, At the moment she is symptom free (that we know of). Spoke to her GI Dr, the results are defiantly not good, but could be worse. She said there is another med my daughter could take but she'd have to take it 3x a day, and since we are having such a hard time getting her to take her 6MP 1x a day the Dr feels we should stick with the 6MP. So her Daddy and I are going to sit down with her tonight, show her the results and try to explain to her that this is only going to get worse, most likely with out meds her UC is going to flair up again. Worse case end up back in the hospital. And hopefully she will start taking her meds on her own. If not I'm going to go back to treating her like I did when she was little and hand her her pill and watch her take it. She keeps wanting us to stop treating her like a kid (ex: later bed time, stay out longer with friends etc) well she's going to have to show us she can be responsible with her meds first. Wish us luck :)
 

my little penguin

Moderator
Staff member
Welcome
Have you tried treating med compliance like any other infraction of serious house rules.
Just as if she took the car without asking or stayed out late or over night.
What are her consequences of punishment for not taking meds ???
Does she still have a phone , tv privledges , etc...
Good luck
 
my little penguin, No we have not talked about that with her. My husband and I did talk about it last night before we talked to her. (it will be her cell phone she looses) We wanted to see what kind of reaction we got from her once we explained the results of the Calprotectin test and my conversation with her Dr.

Our talk with her went better than expected. We think she was having symptoms and not telling us because she didn't seem surprised and she didn't argue with us that she was "fine". She was more annoyed that I stood right there in her room until she took her 6MP. She says to me "are you really gonna stand there and watch me take this" I said "yep, tonight and every night, until I can trust you to take it on your own".

So fingers crossed that this works and she sticks to it.
 
Angrybird, I just re read your earlier post and realized I never answered your question about Doodleheads diet. Sorry.

She is not on a set diet but she uses the "low fiber, low residue" guidelines. This is one thing I can say that she has taken control of since she was diagnosed with UC. She knows what sets her off and has no problem with saying "no thank you" to friends or family when they offer her something she knows might bother her. She has always been our good eater, she loves broccoli, cucumbers, tomatoes, corn etc. (LOL her sister and brother would of been dancing on the table if we told them they had to limit their veggies) She will still eat these foods but keeps it to smaller amounts and less frequently. We have adjusted our grocery shopping to help like switching from regular tomatoes to Roma Tomatoes because they don't have many seeds or none at all, we don't buy corn-the-cob but maybe a couple times a season from almost weekly and we no longer buy nuts to have on hand as snacks. I just wish she would take taking her meds as seriously as she does her diet. But hey, we gotta be thankful for the small victories right??
 
Top