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Crohns with a teenager

I'm sure there are worse things, but couldn't name one right now. My daughter is going to turn 16 next month and was just dx in August. I hate her having it. I hate her being on Prednisone, I hate the weight gain and acne she has from it, I hate the she's depressed from the side effects and won't leave the house, I hate that she thinks I could call the doc and get her a diuretic and all her problems would be fixed, and I hate that her friends don't really understand. I think most of all I hate that my answer to most of her questions is "it will get better with time". She and I are tired of waiting, cranky and impatient.

is that enough of a rant?

I was dx with breast cancer in January, so this has been a really hard year. Between the two of us I'm about done in.

I was diagnosed just the other week, so i can kind of relate to the pred. I've been on it for for a while now, and i have put on a bit of weight and have more spots. I guess the thing that keeps me happy is not having the real bad stomach pains, although it isn't that much of a compromise with the spots n stuff. But at least it will help, and pred isn't for the long term :)

I still haven't told any of my friends i have Crohns.. im 17 atm so still at school, and i still don't know whether to tell anyone or not, i know how you must feel that people don't understand. I don't know if people will react like its a really bad thing and treat me differently, or if people just simply don't care.

But enough of that :p This forum is here so we can talk to peeps who have had this for a while, and have had these situations before and know what to do. I guess im looking for similar answers to you so this post wasn't much help, but just the fact that we're not alone is a good thought. :) People are here to help.

And i hope you and your daughter get better soon, and feel better asap. :)


I had quite a hard time when I was diagnosed, felt depressed, didnt want to socialise etc Its normal to be like that, but being a teen with hormones everywhere must be even harder. I found pred quite hard but it helped in the long run. Hopefully it will help her feel better and then she can be on some other drugs to keep the flares at bay.

Dusty wrote a great article on depression and the different emotions we go through when given bad news like this. A great read and will help you understand the pain you are both going through.

I'd recommend she join this site and talk to others of her age (theres an area just for teens) plus theres a few on facebook who will be willing to talk about anything (crohns or not).

Welcome to the site anyway and im glad you are here to help your kid, hopefully you will find some good advice and ask any questions you want.

A good area I think to start in is the food area, you will find that a lot of food that is supposed to be good for us is actually bad for crohnnies (my mum was giving me wholewheat etc to make me better when it was doing the opposite). Everyones food tolerance is different so its trial and error approach to see whats ok and not ok.

Hope that helps anyway
I am so sorry...it must be so rough to be going through this...as a teenager, in her shoes, during what is often an emotional and tumultuous time already, and as her parent, during what can be a difficult time without the added burden of a chronic disease :( (((HUGS))).
Breast cancer also?! UGH! Really? You must feel tested (and exhausted!) I am hoping for some relief for you soon. Hang in there, though mom...your daughter needs you, and while there always seems to be trials, for us it did get better. Having an outlet of people that understand your fears and worries is so wonderful...I love this forum! :)


To save time...Ask Dusty!
Sorry for her mom!! I know all of us want our kids to have their normal lives back! I'm sure it's especially hard on a teen girl. If it's any consolation to her, my son's moon face quickly subsided after his steroid taper. How much longer is she to take it??
Thanks everyone. She is at 30mg now, decreasing by 10mg/week. Only 3 weeks to go, but it's looking like an eternity to her. She was at 80mg, and we really thought that by now, some of the puffiness would be gone.

She's unwilling to go anywhere, but at the same time is frustrated by missing out on social events. There's a masquerade ball at church Wednesday that she really wanted to go to--looking "normal". I think she is far enough past the pain she was feeling, that she is quickly forgetting how bad it was to be ill.

So frustrating, and hard. I completely understand where she is coming from, not looking like herself. . . . my hair is only just growing back after chemo. There are no easy answers and it's so hard for me to see her hurting.

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Hi NancyP...Did I read right that your daughter was on 80Mg of pred? My God at my worst I have never been on that much! She must of pretty jittery. She is self conscience of her looks and we as women will always feel like that. The puffiness will go down as the weight to level. I am so sorry you are dealing with a dibilitating disease as well. You both have each other to support and your daughter will get some relief,she just has to find meds,diet and less stress to deal with, it all takes time.

I hope you both recover, physically and mentally,just know that we are here to help. Take it day by day ok? Big hugs to you both!


When I think back to my teen years living with CD, I remember being fairly lonely... stick-thin one year; 60+ pounds overweight the next (I was on as much as 100mg of prednisone at a time). Add to this the normal teenage hormones, the hormonal mood swings from the prednisone, and I pretty much became a hermit.

This isn't the answer you are looking for - nor is the fact that it might get worse before it gets better.... but after all the turmoil I went through, I still would have rather been the patient than the parent.

I am not going to tell you it will get better, because none of us can ever know that, but I can tell you that I HOPE it will get better, and I (we) are here to hear you rant and rave and cry while you are waiting.........

Squishy cyber hugs from The Moon.
Pen, yes, she was on 80mg. She was pretty sick when diagnosed, made me feel guilty as all get out that I didn't realize sooner and get her help!

She is doing better this morning, and my husband just took her out shopping so maybe that will help. Yesterday she had told me she wasn't going to leave her room till she looked normal, and she wouldn't eat and drink! Yikes. Thankfully she is a smart girl, and knows the concequences of not taking meds/eating/drinking. I know from my own experience sometimes it helps to yell at someone and make threats :) Hard for Mom to take though.

I appreciate the support so much. Thankfully I homeschool her, so she isn't having to deal with unkind kids on top of it all.


Super Moderator
Ah hell Nancy...:hug:

Man oh man, I know all those feelings so very well. I have had my fair share of black dog days in the past and still have them.

My daughter was diagnosed at 14 too and it broke my heart...:(. I hate this disease with a passion for what it has taken away from my children but I reckon it's more than okay to feel pissed off and have good vent. Rant away Mum, cause we're right here with you!

Good luck, best wishes and loads of squishy hugs to you and your gorgeous girl...:Karl:

Dusty. xxx
I hear you loud & clear.. me and my dd were down & out for a while when diagnosed. she also wasnt happy w/ her appearance & stayed puffy for about a month after weaning of of pred.. my thoughts and prayers are with you and your family. I hope everything works out for yall and you both start to feel better :) hang in there
HI Nancy, My daughter is also weaning down now. She is down to 15mg but is still all puffy and with acne. we too are hoping it will get better soon. THis is the puffiest she's been except for the very first time she was on steriods. She also hates it.
Oh wow, that must be so difficult between the 2 of you! I'm around the same age, and pred messes with you so much! I hate being on 40, let alone 80mg. I guess you just need to think about what it would be like if she wasn't on prednisone, and how much it helps, even if it does come at a cost. I'm sure that without it I'd be in a much worse state. Also, with the friends I do agree. It is very difficult to find friends who understand, none of mine do. It's difficult living with things like this, and I can imagine how hard it would be on you too! I hope things will get better and hope you keep in touch with this forum. Theres some very supportive people here! Hope you both feel better soon, wishing for the best.


So So sorry to hear this news. I am in tears just reading your post.... it hit so close to home for me. My daughter - 14 years old was diagnosed last December and I remember those Prednisone days all to well. I know just from our experience it will all get better and the mood face and weight will go away when the predisone is done (I was a non-believer and thought nothing would be the same again.... but I was wrong it truly all goes away.) Just a suggestion with her friends not understanding.... I talked to the mom's of my daughter's close friends and explained what was going on with her.... most of them had no clue what Crohn's was. But after explaining it all, her friends were amazing! They all rallied around her, I could text her best friend and let her know the day didn't start off good and she would be there at school making her smile and get through the day. They took care of all the rumors at school and stopped kids from making fun of her, they were an incredible support system. Good thoughts are going your way.
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Thanks again for all the encouragement. Saw her GI for a routine appt yesterday, and he confirmed that she is doing well with her crohn's. She will be DONE with the Pred the 1st week in Nov (which can't come soon enough) and I'm hoping will look more like herself by Thanksgiving (which is also her birthday!).

Some of her friends have been amazing, and the others at least are quiet. I asked if people were saying bad stuff and her response was "not to my face". ugh. Many of her friends have "been with her" since her dx and came to see her in the hospital when she was going through diagnosis. One poor boy (ignorant of the situation) aske her "did you have your wisdom teeth out?" LOL He meant well, and it did allow me to point out to her that if all he was seeing was chubby cheeks, then the rest of the weight gain must not be that obvious to others. She's gained just over 40lbs

One last question--is it all water? Will it just fall off, or is it a good idea for her to exercise to help? Right now, she has so much weight even in her shoulders/back/neck that it's hard for her to move normally. I've been pushing her (a little) to exercise, thinking it certainly won't hurt, and might help the weight come off more quickly as she weans from the Pred.
I'm sorry you're going through this. I know it doesn't help right now, but most likely she'll learn to take this more and more in stride and not let it affect her confidence the longer she has it.

The "moon face" from Prednisone usually goes away within a few months of stopping the steroids. If she's actually having movement impairment from swelling, that's something I've never heard of with Prednisone.. you should have your doctor look at that, either GI or GP.

My daughter has had her Crohn's since age 3 and now at 13 she's got the acne, and the moonface, and joint pain that prevents her from joining sports teams... but she's still got a great deal of confidence, has MANY good friends, is a talented writer... the longer you have this disease the less it affects your outlook/personality, in my experience. There's still the pain and the medical complications to be dealt with, but they become less of an impact on your overall happiness as you learn to deal with it.


It took my daughter about 8 weeks to lose the moon face look... It started off slow and then slowly decreased. Im not sure if all the weight gain is water, I know the Prednisone made my girl very hungry and she ate all the time. She gained about 15 lbs. She did start some exercising because of her sports and eventually dropped all the extra weight. Exercise definately won't hurt and it might make her feel a little better.

Kids at school just don't know any better - mostly because I don't think they understand. They did talk about my daughter behind her back calling her names, but her friends usually came through for her. It was very difficult - it makes me cry just to think about what you and your daughter are going through and remembering how it was for us.

Just have faith.... this to will pass and she will be back to her normal self - I would expect more like Christmas. It my daughter a little long than I expected, thus the fear that she would never be the same - boy I was so wrong! I look back now at the few pictures we have of her during prednisone and can't even remember her looking like that. She is definately back to her old self!

Good thoughts to you both!
Thanks Kat--my daughter was hoping to have a big blowout for her 16th b-day: 26th of Nov which is just 3 weeks after she finishes the Pred. She's pushed it back a week, but I think she will still be a little disappointed. She has actually gained nearly 40lbs from the weight she was when dx. Of course, at that time she was also "severely malnourished". She is not yet considered "obese" according to the experts, but she is just so much bigger than she's used to.

Thankfully we homeschool, so lots of the unkind stuff is cut down. She has refused to go to any of the homeschool group functions though, and recently stopped going to church etc. She still goes out with a small group of loyal friends, but I think she feels like she is protecting herself by staying home.

I keep telling myself that this will look like a short time, after we get over it. Things always look better when they are in the past! She's aware of that too, but you know how hard things seem when you are in the middle of them.

Lots of what she is going through has been mirrored in my experience with cancer: when I was bald from chemo, and right after my mastectomy I was very self conscious about my appearance. The "trials" of our medical challenges have really brought us closer. At least there are some positives to it all!


Hope you both have a great weekend! Just keep reminding your daughter everything will get better in time. My Ashley is proof of that - she is totally back to her old self, well really a much healthier self. She is living proof that a teenager can live an awesome life with Crohn's - nothing stops her! As I tell everyone that asks about her...."She is my HERO!"
My birthday is November 26th too! I think many of us on this forum wonder why we are being tested so much and I can only imagine that you feel the same. We have had past times that we were tested (I have a son who had transverse myelitis and become suddenly paralyzed from the waist down over a 24 hour period) and we are being tested once again. This time I do have a little more perspective. It seems like the hard times are a lifetime and you want your kids to have a carefree childhood. What I learned with my oldest is that the lessons he learned through his horrible time (he is the lucky 1/3rd of people who fully recovers from this illness but it took a long time) are like nothing I could have learned in my childhood and he became an old sole from his experience. Although I wouldn't wish it on anyone, I do reflect and am thankful he has the strength of enduring that difficult time to draw from as a teenager.

My middle son who is currently being worked up for a variety of endocrine and GI diseases including Crohn's has already grown emotionally from this experience. Again, I wish it was simpler but people who have significant struggles in their youth often draw strength and passion from it that propel them further in life in the long run. I hope this helps and pray that you and your daughter will eventually prosper from this very difficult time in your lives.