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I have a 17 yr old daughter who was diagnosed with proctitis.  The doctor has said it will more than likely turn to colitis.  Okay - at least we have information and know what the illness is.  Wendy was given a treatment protocol of asacol, vitamin c and iron pills to take every day, the asacol three times a day.  She was also given the Asacol Enema.  This has been a daily fight.  It has been since late September that she was diagnosed and she has only take half of the meds that she was supposed to have taken by now.  She lied for a week about the enemas.  I understand that this has really hit her like a ton of bricks.  For the first semester of her senior year, she literally hit rock bottom.  Because of the anemia, she was unable to participate in sports at school.  Once she was cleared it was too late.  To make a long story short - she is fighting these meds tooth and nail.  I realize it's a control thing - she feels everything is so out of control, that this is one way she gets to have control.  But let's be honest - she needs to take the meds.  I have taken the keys to her car away, I have broken down crying to beg her to use the medicine.  She is so damn stubborn.  What will it take for her to realize that she MUST follow what the doctor says?  Has anyone out there had a similar problem and does anyone have a suggestion.  I am looking for a therapist for her to talk to...at this point she needs someone to talk to.  But damn I'm so afraid this is going to come back 10 times worse than the first time.  Is that the answer, to have it come back and for her to see that she MUST take this medicine?  Thanks for any suggestions.  I'm feeling quite desperate at this point.  I'm so afraid for her. 

 Reply posted for Psychomom83.

something i forgot: iron causes constipation. and constipation can hurt. especially if the rectum is inflamed and painful anyway. you cannot possible know the extent of the pain unless you've experienced it yourself. if she's so anemic that she is missing out on her life, presumably because of iron deficiency, why hasn't she been given an infusion of intravenous iron???

why wasn't the option put on the table up front: "look, you're a senior in high school. you want to play $sport. the season is time limited. and you're really anemic. and subsequently probably really tired. so you have a choice: you can take an iron pill every day for several weeks before there is any improvement and as a side effect you'll probably become constipated. OR we order an IV iron infusion. it'll take a total of about 6 hours (maybe spaced out over several days, maybe not). and then you won't be anemic any more."

 Reply posted for Psychomom83.

hi.

i think its important to re-frame this for yourself, and for your daughter. focus on empowerment and subsequent adherence, not paternalism and compliance. 

compliance is an involuntary act of submission to an authority. adherence is a voluntary agreement to subscribe to a view point and course of action. modern physicians should be aware that the research has shown, time and time again, the patient will simply not surrender to the authority of the expert doctor; patients are instead complex individuals who will construct their own personal meanings around health and disease. the best outcomes are obtained, especially in chronic disease, when the emphasis is on empowering the patient to take charge of their own well being. for more on this id urge you to read the e-patient white paper:
www.e-patients.net/e-Patients_White_Paper.pdf

yes, your daughter is under 18. in most places that makes her not yet legally an adult. but really? shes old enough to be making all sorts of decisions about her own body.  instead of threatening her and coercing her (take this medication or ill take your car away) work with her. why isn't she taking the meds? have you actually listened to her? not harangued her, not argued, not pleaded, not cried - just listened with the single goal of understanding her. without judgment. just understanding.  

then: has she discussed her objections with her physician? has the physician really listened? what alternative can the physician offer? if the physician won't listen to her, advocate for your daughter. get the physician to listen and engage. or get a new physician. 

 Reply posted for Lizzies Mom.

Thank you all so much for your responses, especially you Becca, hearing from a teenager is always helpful.  Part of the problem (and yet the good part) is that she is not in full blown IBS.  She got proctitis - did not have bathroom issues in terms of having to go all the time, that was relatively normal.  She was bleeding.  It was also painless.  She ended up having an appendectomy (although I don't believe she needed to, they just figured that was it and didn't want to take the risk of it exploding open).  My daughter is stubborn.  She is humiliated by the rectal meds.  She is not taking the oral medicine, I am trying to pick my battles.  Yes, at some point she will see how silly it all is to not use the medicine.  She is using the rectal medicine because I threatened to take her car away.  But she does miss every so often - she has a doctor's appointment at the end of the month, I would like to see her be able to wean off of this medicine for now.  He will not be pleased that she has stopped some of the medicine. 

To all the Mom's - I'm happy my daughter does not have the worst case, but I'm sorry that your children started with this so young.  It's not fun and at some point my daughter will have to go to meetings and see that in the big picture, she is really lucky.  I think some of the little kids are acting better than she is.

Thanks again

 Reply posted for Psychomom83.

I am assuming that you have sat down and tried to convince her of the need to take the medicine many, many times. Am i right ?

Not know why she won't take the medication makes it difficult to offer suggestions. Perhaps her doctor can make a suggestion for a different series of meds ( if she doesn't like the ones she is taking). This won't work of course, if the medicine is already working.

The teenage years are difficult enough for parents and teens. Add an IBS diagnosis on top of that.....I know how trying these days can be. Our daughter was diagnosed at age 13- right at the start of puberty!  We got through some tough times. Hope that helps you. Know that it won't always be this bad. Will she agree to talk to a professional or go to asupport group. There is a web site on the CCFA site for teens. Don't know if it would help talking to other teens. That may be a good option if it is possible.

Hang in there !! You are not alone !

 Reply posted for Psychomom83.

Hi,

Teens (I have one) do OK with meds, I think, when they become convinced that it's the meds which allow them to have a normal (or better) life.  They resist meds (and show anger at their diagnosis by refusing meds) until they get to that point.

Is there any way you can help your daughter see that she will feel better/have less pain/have fewer bathroom issues "if you just try this for a week?" Even if she has to feel worse by not taking meds first and then compare.  Making her do something may work in the short term, but if she doesn't buy into it, it won't last.  They need control over the process.

Is it the enema aspect of it?  That must be very hard for a teenage girl.  Is there an alternative?

good luck to you and her

(mom of 14 yo with CD x 2 years)

 Reply posted for Psychomom83.

Hello. My son is 8 and has Crohns.  I remember when my son was first diagnosed over a year ago the doctor telling us that when he is a teenager he may decide to stop being compliant with his meds and even seeing doctors because most teenagers think they know everything and the parents and doctors do not know anything.  Typical teenagers, always testing.  The doctor said he has had teenage patients who have to actually see and feel the consequence of being non-compliant before they start their meds and doctor visits again.  I hope this does not happen with your daughter, but that maybe what it takes.  It is so hard as parents to stand by and watch our kids in pain and we want to do everything we can to intervene.  I think I am the type of person who would go insane trying to get my son to be compliant even though that might not be the right thing to do.  I think we are all different and I just wanted to let you know that you and your daughter will get through this and my son's doctor says this is typical.  So hang in there and hopefully this stubborness will pass without any bad effects on your daughters health.  I agree with the other mom as well that a therapist or a support group maybe a good idea.  I hope this helps.  Take care and hang in there. 

 Reply posted for Psychomom83.

i am not agreeing or disagreeing but i want to give u my point of view. i was diagnoised last year the day after my 17th birthday. i am now 18. i rarely take my meds. if i do its not like i am suppose to. i am suppose to take 1000 mg of pentasa 4x a day iron 3x a day a multivitamin once a day and vancomycin like once every 2 weeks. but i must say i take 1000 mg of my pentasa once a day if that because my mom gave it to the school. but i can see being a teenager we have very busy lifes and forget to take our meds. yes it may hurt us in  the long run but most of us dont see the need to take them if we feel fine. ur daughter might also be embarassed of her IBD and doesnt wanna take them in a form of denial. i remember and still feel like if ppl know they will only befriend me because they feel bad for me or fear becoming my friend becase no one wants a friend who is sick. but i have a random though/idea..... if possib;e get a medicine cup. and when she wakes up in the morning give her her meds and do the same thing as often as she is suppose to take it. this is just a thought. u probablly think that she is 17 and needs to be responsible for taking her own meds but i think that this is the only way to make sure that she takes them.

sorry if i wasnt any help i just wanted to give u a teenage perspective

 Reply posted for Psychomom83.

I agree with Lizzies mom.  I have 2 teenage boys ages 15 and 17.  My 15 year old was diagnosed with IBD in sep.09.  Let her know what the censequences will be if she doesn't take her meds.  She needs to understand that if she wants to feel better, she needs to listen to the doctor.  My problem with my 15 year old is not taking his meds, but changing his eating patterns and doing without some of his favorite foods.   Because he has missed so much school this year and fallen way behind in his school work, he has become depressed and overwhelmed.  We are considering home schooling until he goes into remission.  You may want to consider if she is depressed and frustrated with everything that has happened to her. I have read that this disease does have a lot of emotional baggage.  Someone talk to about her problems may be helpfull.  Best of Luck

Derek's Mom

 Reply posted for Psychomom83.

I feel your pain and can somewhat relate.  My daughter was much younger than yours when she first started having to take daily meds and it was sooo difficult to reason with a 4 yr old.  Eventually it got through that her "special belly" felt better when she did what her doctor asked her to do.  Now, she is so accustomed that it is just part of life.  Unfortunately, she doesn't remember life without meds, docs, scans, tests, etc.  (She'll be 10 in Jan).

Have you called her out on her non-compliance with her doc?  Sometimes we "moms" in our children's eyes don't know anything>> especially during the teen years.   It isn't until probably 30 that you realize hey, my parents were right.   Maybe her doc and her having a 1 on 1 (w/o you) may do the trick.  If not, then you might be right on track and her continuing being non-compliant and it coming to bite her in the butt and land herself in the ER.   I hope that doesn't become the case, but it may.

In the meantime, maybe you can explain to her that you are there if she needs you and her meds are now her responsibility.  No more mommy med warden.  Maybe the reverse psychology will work.

Being a parent is never easy.   I wish you my best.

Lizzies Mom