Help

[tragicmess]

Hi, I just made an account here because I really need help with something. I'm a 14 y/o female -turning 15 this year- and I was diagnosed with crohns last June. I haven't grown since grade six. I've had the disease unnoticed until end of grade eighth.. Literally last day before summer vacation. I don't mind being short.. But I HATE being small! When I got my learners a woman behind me said "You're too small to be 14! You're a little peanut!" I'm constantly being told (by strangers) how tiny I am. I went for an endoscopy last week and one Nurse told me I was tiny! I want to know if there is anyway to grow! I took Ensure for 2 weeks with nothing else and it did nothing at all. I haven't gone through puberty and it makes me hate my body. Even my little sister (12y/o) is bigger than me! I've been on prednisone and I gained weight but mostly to my face it's gone now but I'm still the same tiny person I was. I feel like such an outsider compared to my grade (9) plus I'm in highschool now! Please help me.

 

[Clash]

So sorry to hear you are struggling. My son was diagnosed at 15. He had been one of the shortest in his class all throughout school.

With CD, the inflammation makes you unable to absorb enough of the nutrients you need for weight gain growth and can stunt entering puberty.

Prednisone is usually only used in the beginning while a maintenance med is started. Once you find a med to control the disease then you will be able to absorb the nutrients needed for weight gain and growth and to start puberty.

Some opt to do EEN (exclusive enteral nutrition) which is formula only instead of pred since there are no side effects like pred and because your bowels can better absorb those nutrients over foodstuffs. Other add EN (enteral nutrition) as a supplement to their diet to help with the malabsorption. Some require a more broken down formulas than Ensure and these can be prescribed by your GI. It does take much longer than 2 weeks and needs to be guidedicated by a nutritionist or your GI to ensure you are taking in enough calories for weight gain.

Seeing an Endocrinologist can also be an option to see how much your bone age differs from actual age. CD can stunt bone age so say you are 14 but due to active CD your bones age could be 12 giving you an extra window of growth time if you can get your CD under control. Endocrinologists can also check on issues with starting puberty.

 

[tragicmess]

Thanks for the reply. Sorry I should've been more specific with details! I was diagnosed with moderate to severe crohns after an endoscopy in June. I've been on Remicade every 4 weeks for 7 months. I'm also taking Imuran and iron every day. I had 4 iron infusions during July and August because I was a severe anemic. I took prednisone in October and November to help control my inflammation. Before any meds (except antibiotics 2 times a day) my GI put me on EEN (supposed to be for 8 weeks). After two weeks nothing had happened except me being extremely miserable. I love food and I hated the taste of Ensure. Since not even my energy had changed, they stopped that and put me on Remicade. My symptoms pretty much all disappeared except a gurgling stomach during evening to night but I haven't grown at all. I had a follow up endoscopy last week even though I told my doctor they should wait to do it because my symptoms have flared in the last couple weeks due to midterms- I think. He didn't listen obviously and there was quite a bit of improvement in my small intestine but not my large. It still has ulcers and is inflamed. They won't let me talk to an Endocrinologist until I've reached remission. I can't wait any longer to grow and I'm really stuggling to find a way to reach remission. It's been 7 months and the meds aren't working well enough and I hate my body.

 

[Clash]

Hopefully, you will be able to reach remission soon.

My son was labeled FTT(failure to thrive) at 17 due to his low weight and inability to gain weight. He had been on Remicade and methotrexate for over a year and although it took away all his symptoms there was still an area of severe active inflammation that required surgery.

He had to get his weight up to have the surgery but hates the otc shakes like ensure. So he opted for an nasogastric tube and the GI prescribed a formula that was more broken down than ones like ensure. He did this for a few months before his surgery. He would insert the tube each night and take in the formulas while he slept then take the tube out when he woke in the morning for achool. It took a few weeks til we really saw the weight gain but in two months time he gained 25 lbs and so over the next few months he gained another inch in height.

It may just take time. remission is the key to hitting that sweet spot for growth. But when it happens things will become much easier in terms of gaining weight and growth.

Some parents here have their kids see a nutritionist to figure out ways to get more calories in daily and it had helped for some.

My son still hasn't reached remission and he is on Humira and mtx now after his surgery. But he has been able to gain some weight here in the last month. We are hoping he continues this trend.

 

[tragicmess]

Thank you, I hope I'll reach remission soon. I hope your son reaches it soon too.

 

[tots]

I am so sorry your having a bad time!

Its a hard disease to deal with and having to deal with rude people on top of that is just wrong!

Good luck

Lauren

 

[tragicmess]

Thank you. I agree, people should really think before they talk!

 

[fuzzy butterfly]

Aw hunnie, im so sorry you are here but glad you found us. We try to help n support as much as possible here.
I know the waiting for things to happen is very hard,but it will happen once your crohns is under control . You are a very strong young lady and you will get there. I hope you there very soon hun. :hug:.love n best wishes

 

[shaunbern2001]

Thank you. I agree, people should really think before they talk!

You sound like a really determined person, which is a great asset for someone with Crohn's. Next time you see your Dr tell him how much you hate being below height/weight & tell him what the nurse said. Someone in her position should know better than to pass comment on how people look (never mind the general human decency of not passing comments).

If nothing else it might give your Dr a nudge to send out an internal email to his colleagues and co-workers reminding them of this; you could start a whole sequence of events just by speaking with one person. Kind of what you've done with your first post on here....

I'm guessing your family know how you feel and you've got friends at school who support you (keep them in the loop so they've got your back but maybe spare them some of the details - even best friends don't need to know all the 'eeugh' details!).

You know remission will come & you'll turn a corner. It may take a while but it'll happen. Patience can be the hardest thing. Good luck.