Help with teenager recently diagnosed

[Stacey's mom]

My daughter, Stacey, was diagnosed with crohns in Jan 2013. She has been on prednisone since diagnosed. Started Methotrexate but didn't help. Just started remicade June 4. She feels very alone even though we have tried to be there for her. She is 15 and depressed over the situation. She has gained weight since being on the medications and gotten bad stretch marks. Does anyone have any suggestions as to anything other than mederma that helps with stretch marks. They are a side effect of medication not weight gain. Also, to any other moms with teenagers with crohns, what did you do to help them overcome depression? She doesn't like to talk to family and doesn't feel comfortable enough to talk to a professional. Please give me any suggestions, I am so sad for her.

 

[my little penguin]

have you tried a local ccfa walk? or group meeting sometimes there are teens there so she can relate.

our local chapter ccfa put me in contact with local parents who had kids the same age so that may work.

Does her Gi dept have a therapist they use regularly maybe she could find someone who has btdt many times.

There is a "Teens only section on here " if she wants to "talk" to others.

http://www.crohnsforum.com/forumdisplay.php?f=67

 

[my little penguin]

Does she trust her ped? they may convince her to "talk" to a professional since that is really what is needed if she is truly depressed.

 

[Clash]

I'm so sorry to hear about your daughter's dx. My son was diagnosed last year at 15 and was put on Remicade. He had a short stent on pred(to no avail) while waiting for ins approval on Remicade. The pred caused stretch marks along his upper thigh and I do think this really bothered him at the time. I bought him some mederma but he rarely used it.

We do have a teen section on the forum. She may want to join and talk to others that are going through the same thing she is. Also if you look at the CCFA site it lists local groups for those with CD. When my son was in the hospital there was a Child Life worker that had all types of info about teen groups for CD. She wanted to get my son together with the other five teens on the floor with IBD at the time but testing schedules and surgeries did not allow time for it.

 

[Stacey's mom]

I haven't tried ccfa walks. I looked on the website but there isn't one in northwest indiana. I'll talk to her dr at her next remicade tx re: support groups. This is all very new to us and to be honest we were just trying to come to terms with the overwelming amount of information. I will have her look at the teen forum. I think that is a good place to start for her as teens relate well with other teens especially ones that are going through the same thing she is. Thanks for the help.

 

[Kaitlyn]

As for stretch marks I'm not sure. My son was diagnosed at age 15 he was depressed at first but I encouraged him to get out and do things even just go outside for a little or offered to do something he likes. Also the teen section as Clash mentioned would be a good idea.
I really hope she gets to feeling better

 

[jmckinley]

So sorry you and your daughter are having to deal with this. Vitamin E oil maybe for the stretch marks.

I also have a teen with Crohns. He was 12 at dx, so it has been a part of his life for several years now. He was withdrawn until he found a love for music. Being in the band at school has helped him to find friends that support him, even if they don't fully understand. They don't pick with the "cheeks" and they take up for him in those situations. We also let him get a puppy. Puppy love is totally unconditional and a happy face to come home to when the school days are rough. I know that's not feasible for everyone to do.

Also look into Camp Oasis, a camp for kids with IBD. Ryan always resisted going but asked to go for the first time this year. He is finally ready to meet some teens with the same issues and connect.

Your daughter's dx is still new. It will help some when she can get off the steroids. They add to the emotion. It may take some time before she can resolve her feelings about having IBD and is ready to open up about it. Just be there and love her. If she has an interest/passion, she should get involved so that she can see that she can have a full life even with IBD. I hope things are going better soon.

 

[DustyKat]

Hi Stacey's mom and :welcome:

I am so very sorry to hear about your daughter, what a heart breaking time for you all.

Do you know how much longer will she be on the Prednisone for?

Where is her Crohn's located?

What are her persistent symptoms?

Stretch marks/scars: I am not familiar with Mederma but we have found Bio Oil and Paw Paw ointment to be very helpful.

Depression: My daughter was diagnosed when she was 14 and was okay for a couple years but then hit the wall psychologically in the last year of high school. She was very resistive to treatment and angry. She refused to talk to any health professionals about it and actually walked out of one her doctors appointments. I ended talking to the school counsellor and asked her to meet up with Sarah in an informal manner and she how things went. As it was she ended having weekly meet ups with her for a while. Sarah would say to me that it made no difference and was a waste of time, I really didn't expect her to say any different, but I could see a change for the better in her. I truly do believe having someone independent and non judgemental talk/listen to her was invaluable. By that point in her life I think she had had enough of doctors etc and mum and dad were, well mum and dad and everything positive we said about her was said because we were her parent's and we had to! I'm sure we have all heard that one!

Having someone that wasn't involved in her healthcare or related to her was what made the difference for us.

Good luck mum! :ghug:

 

[jmckinley]

Having someone that wasn't involved in her healthcare or related to her was what made the difference for us.

Good luck mum! :ghug:

Dusty is right. Ryan was very fortunate to have a middle school teacher who has Crohn's and that made a huge difference for him. She gave him a sympathetic ear and even talked about her treatment and how she was dealing with it. It made a huge difference!

 

[guest78]

Hi
I was diagnosed with Crohns aged 16 (i am now 21) I suffered awful stretch marks on my thighs and some on my tummy thanks to pred. You can now barely see them, so please do tell her they fade away!! I used bio oil - which worked amazingly, I am in the UK so not sure if you can get it in the US, maybe online?
Having crohns is tough at the best of times, let alone if you are a teenager. if she needs someone to talk to whos been through it all and is removed from the situation, not even in the country!, i would be happy to exchange emails or something. i also have a blog about living with crohns and subsequently for me an ostomy. xxxxx

www.giftofthegab1.blogspot.co.uk
xxxxx

 

[Jenn]

Sorry to hear about your daughter. Hope Remicade helps her. The GI could give you a therapist referral. This site for teens might help her.
http://www.ucandcrohns.org/

 

[Stacey's mom]

Thank you all so much. I will try all the suggestions you all have especially the Bio Oil suggestion. Her crohns is in the small intestine by the ileum I believe. She is weening off the predisone right now she's at 5 mg in am and 5 mg pm every other day. Still is on methotrexate until after her 3rd remicade infushion. To GEC, I think Stacey would like a pen pal that knows what she's going thru. H Thanks for all your help everyone, as all of you know, how hard it is.

 

[guest78]

No problem at all! If you let her know ill drop her an email tonight xxx

 

[Stacey's mom]

I'm at work but I called her to see if it was ok with her if I gave you her email and she said yes she'd like to talk to you. I'm glad she was open to talking to you. She is a writer also so you have that in common too. Again thanks.

 

[DustyKat]

Since she has ileal disease has she had blood levels done for:

B12
Iron Studies
Vitamin D
Magnesium
Zinc

Treating deficiencies that may be present can help relieve/resolve some symptoms, including depression, and can provide a better overall feeling of wellness.

Dusty. xxx

 

[Stacey's mom]

She has had many blood tests done not sure if they checked for all that I'll have to ask her dr. Being new to the disease, I don't know the right questions to ask. My brother also has crohns but I never asked him all the questions until Stacey was diagnosed. Even in to this for 7 mths now I still don't know. Trying to become as educated as all of you. Gonna take some time.

 

[DustyKat]

I hear you mum and you take all the time you need. We all travel at different speeds and as long as we get there in the end then that is all that counts.

Please don't hesitate to ask questions of us, remember there is no such thing as a dumb question!, and in doing so I hope we can lighten the load a little for you. :ghug:

Dusty. xxx

 

[Stacey's mom]

So this may be one of those dumb questions but what is an ileostomy?

 

[guest78]

It is like a colostomy. I had one 5 months ago. They bring your intestine through to the surface through your tummy. It then by passes the rest of your colon and you poop into a bag. X

 

[Stacey's mom]

So why did you need that done?

 

[guest78]

Medication stopped working. I ran out of any meds so surgery was the only option. I had Crohns in my colon and peri anal and nothing would put it out of remmission. I may be able to have it reversed in 18ish months if my bowel heals but they said its very unlikely in which case it'll be for life. XX

 

[DustyKat]

An ileoostomy is not uncommon for people with Crohn's. For those with Ulcerative Colitis removing the large bowel is a cure.

For some people they are permanent but for many they are temporary. A permanent ileostomy is usually required for those that have had their large bowel removed or for those that have had a large amount of large and small bowel removed or if disease is unable to be controlled by medication.

With Crohn's a temporary stoma is used as a way of preserving bowel when resection surgery is done and it is done for two reasons:

1. if acute inflammation is present larger amounts of bowel need to be removed to rid the body of the disease. The problem with Crohn's is inflammation isn't continuous so you would be removing diseased sections as well as healthy sections. By having a temporary ileostomy it allows the bowel to rest below the site of the stoma and then heal as no faecal matter is passing over the area. This means the inflammation will go from acute to chronic and when this happens there will be a reduction in the size of the affected area/s. Then when the reversal is done much less bowel will need to be removed.

2. Again it comes down to preserving bowel. When you anastomose (join) two ends of bowel together they must be free of disease or the join will break down. So operating when someone has acute inflammation can mean a temporary stoma so that you have better outcomes in the long term.

Dusty. xxx

 

[guest78]

Whoops I mean 5 weeks ago. Not months.

 

[Stacey's mom]

Wow Dusty Kat you're like a doctor! Thanks for your knowledge. GEC I'm sorry to hear all that you're going thru and I will keep you in my prayers.

 

[guest78]

Dusty is amazing right!!
But yes, it hasn't been easy! But I am hopefully now on the road to a healthier me! Fingers crossed eh! XX

 

[Essieluv]

I was diagnosed when I was sixteen (two years ago), and I did get depressed. It is hard dealing with a diagnoses, especially one that there is no cure for. But it isn't all bad. And she is so strong to have dealt with this all! I am on the teens only group and it is great. I'm sure it would be helpful to her. But let her do it on her own time and terms. Not everyone wants to be submersed in IBD all at once. It takes time, but she will get adjusted soon I am sure. The most important thing is to just make sure she knows that you will always listen to her.

 

[Gingermom]

Hi
My son is 13 and was dx just 7 months ago and it is a roller coaster. For her stretch marks try using lavendar essential oil. You can apply it directly on or mix it with some coconut oil or shea butter. The scent will help to calm her, too. My son really likes it and will ask for it to be diffused when he's stressed. You can find it at the health food store or order it online. I use doTerra and love it. I hope she's ok.
Michelle