My story... any advice would be appreciated

[energizerelephant]

my story...

well, I am 14 years old and for the past three years I have had waves of intense abdominal pain and weight loss. About a month ago the severity of the pain peaked, and there was one day I couldn't leave my bed because of it. My mom called all of my doctors and they ordered and emergency CT scan.

about an hour after my CT scan we got a call from the clinic that performed it. They said to go straight to children's hospital and they had called ahead. apparently the CT scan showed severe inflammation of my lower right abdomen, and they thought I had appendicitis.

I was at the hospital for a week. I was intubated, had an endoscopy and colonoscopy with two biopsies. and finally, after the fun was all over, I was diagnosed with severe crohn's disease.

that's my story, just to establish myself to the forum. but I am really struggling in dealing with this. for 3 years I have been severely underweight, accused many times of having an eating disorder, and used to seeing the outline of my ribs through my shirt. I haven't hit puberty, and I am so self conscious about it... does anybody know about delayed puberty with crohn's? I have gained 20 pounds since the hospital, but I am still flat chested with no signs of that changing. I am still in the middle of a flare up on prednisone, azathioprine, prilosec, and a one-a-day supplement for teenage girls. I am as self conscious as a normal teenage girl, but I am dealing with physical problems I feel like no one my age understands. any advice would be really appreciated. Thanks.

 

[Susan2]

Hi and welcome to the Forum. :welcome:

I'm sorry that you have been going through such a hard time, but it is good that you now have a diagnosis, which enables you to have appropriate treatment.

There are a number of teenagers active on the Forum and they have their own special section (see Support Forum/Teens Only). Also a there are parents of teenagers who will be able to give you advice and help. (DustyKat, can you come in here, please.)

:hug:

 

[araceli]

my story...

well, I am 14 years old and for the past three years I have had waves of intense abdominal pain and weight loss. About a month ago the severity of the pain peaked, and there was one day I couldn't leave my bed because of it. My mom called all of my doctors and they ordered and emergency CT scan.

about an hour after my CT scan we got a call from the clinic that performed it. They said to go straight to children's hospital and they had called ahead. apparently the CT scan showed severe inflammation of my lower right abdomen, and they thought I had appendicitis.

I was at the hospital for a week. I was intubated, had an endoscopy and colonoscopy with two biopsies. and finally, after the fun was all over, I was diagnosed with severe crohn's disease.

that's my story, just to establish myself to the forum. but I am really struggling in dealing with this. for 3 years I have been severely underweight, accused many times of having an eating disorder, and used to seeing the outline of my ribs through my shirt. I haven't hit puberty, and I am so self conscious about it... does anybody know about delayed puberty with crohn's? I have gained 20 pounds since the hospital, but I am still flat chested with no signs of that changing. I am still in the middle of a flare up on prednisone, azathioprine, prilosec, and a one-a-day supplement for teenage girls. I am as self conscious as a normal teenage girl, but I am dealing with physical problems I feel like no one my age understands. any advice would be really appreciated. Thanks.

Hi and welcome. I am sorry you have to go thru this at your age. On the positive side now you have a diagnostic. My daughter was diagnosed at same age. One of the reasons you have not hit puberty can be your low weight. My daughter lost a lot of pounds and with that," curves", also her period stopped for 6 months. Your body is very smart and shuts some things in order to survive. Be patient and you will get there. Mean time take care of your self.
Try the teens forum and I am pretty sure you will find a lot of answers. Best wishes.:hug:

 

[Jennifer]

Hi energizerelephant and welcome to the forum!

I know it feels weird when you haven't started developing. I was 9 when I was diagnosed so my growth was stunted and my breasts didn't start developing until I was 16 and kept growing till my early 20's. Its completely normal so don't stress about it too much. Things should fall into place eventually. People thought I had an eating disorder too but what are you gonna do? Now that I'm 30 I'm wishing for some of that weight loss again but not from a flare obviously.

Hope the meds do the trick for you and that you'll be in remission real soon. Take care of yourself and again welcome to the forum. Feel free to check out the Teens Only subforum anytime here: http://www.crohnsforum.com/forumdisplay.php?f=67 There are tons of people on here who can relate to your story.

 

[rygon]

sorry for what you have been through. My parents thought i had a eating disorder when i was young (way before i was diagnosed).. still think i do actually lol

I think everyone is self concious at your age, but it does get better (give it at least 10yrs ) just remember that boys (or girls) dont care about about your body so much but more about your personality. Being a lad I'd rather like a girl who makes me laugh than a lass who has a great rack

More importantly is making sure you feel good (and confident)

have you looked at what you cannot eat/drink btw as a lot of my problems came from that. Now you have been diagnosed I really hope you will feel much better than you have before. Merry Xmas

 

[DustyKat]

@Susan2: Thanks.

Hi energizerelephant and :welcome:

I am so very sorry to hear of all you are going through. :hug:

Delayed puberty is not uncommon with active Crohn's as the body directs its energies into trying to heal itself. Plus there are the added issues of nutrition and weight loss. My daughter was also diagnosed at 14 and at the time puberty was nowhere in sight for her either. She required surgery and it wasn't until this put her into remission that things started to change. Now they didn't happen overnight mind as she too was in very poor condition and very underweight like you. Thinking back on things it was a 6-9 months of being in remission before puberty started but when it did she rocketed away.

I know it is hard but try not to put expectations on yourself while you are flaring. The body will direct all its energies to fixing the damage the Crohn's has done. When you get the Crohn's under control it will turn its attention and energies into your growth and developing body. If you can focus on getting on top of the inflammation, your nutrition and your general well being then the rest will take care of itself with no effort required on your part! Also be aware that medication, like Azathioprine, can take at least 3 months to become fully effective but the Prednisone will hopefully pick up the slack in the meantime.

Since your appendix was suspected I imagine your disease is located in the ileum? If so please ensure they continue to monitor your bloods for B12, Folate, Iron stores, Vitamin D, Magnesium and Zinc. You will be more prone to deficiencies and many of the nutrients are absorbed in the small bowel.
How often are they drawing blood?

I know it is a very difficult age to be dealing with this both personally and socially. Just know that you are alone and although we are not there with you in the physical sense you will find people here that know and understand exactly what you are going through.

Good luck and welcome aboard!

Dusty. xxx

 

[energizerelephant]

Thanks everyone for your kind words and advice.

DustyKat, the doctors did say that it might take a while for the Azathioprine to kick in. I'm glad thats normal. They want to reduce the Prednisone slowly as the Azathioprine starts to take affect. And you are right, they did say the disease was mostly in my ileum, though I had scarring and sore areas lining everything from my stomach down. They also said I had a lot of scar tissue. They are drawing blood every two weeks to test for all of the things you mentioned and to check inflammation markers and to see if the Azathioprine is metabolizing, so far it is which is good!