Introduction

[cmack314159265]

Hi,
I was just diagnosed with Crohn's disease, specifically ileocolitis, and I wanted to introduce myself and say hello to everyone on this forum. I'm a sixteen year old girl and a junior in high school. I've been sick for about a month and a half now with very perplexing symptoms(not ones generally associated with ibd), and was actually pretty excited to receive my diagnosis because at least it means that we know what's going on. I'm starting prednisone to stop my flare up and I'm also about to start a few maintenance medications(that I'll be taking during remission as well) after I take a few blood tests to determine which ones I should take. I'm going to post more specific questions that I have in some of different threads, but for now, if anyone has any generalized advice, it would be greatly appreciated!

 

[Justanothercp]

Cmack,
Welcome. What sorts of symptoms were/are you having?
My advice would be to keep an open mind, learn what you can, and investigate the impact of different foods/diets on your symptoms.

 

[ronroush7]

Welcome to the forum. Wish you the best.

 

[Christi]

Hi and welcome to the forum i am sorry to hear and also agree with Justanothercp

 

[cmack314159265]

My main symptoms were fatigue and loss of appetite, which caused me to lose a lot of weight. I just didn't really have the diarrhea or blood in the stool that is generally a marker for Crohn's, so it took the doctors awhile to put it together. We spent awhile testing for mono(because I'm in the mono age group) and stomach issues which would be causing me to feel full and not hungry all the time.

 

[ronroush7]

Cmack, have you been diagnosed with an obstruction? You said you felt full all the time and I had trouble finishing a meal sometimes with an obstruction.

 

[cmack314159265]

I don't know that much about obstructions, but I haven't been diagnosed with one. I had a colonoscopy a week and a half ago to diagnose the Crohn's, would an obstruction have shown up on that?

 

[ronroush7]

At www.everyday health.com there is an article I believe called Diagnosing and Treating a Bowel Obstruction. It says if an obstruction in the large bowel is suspected they may order a colonoscopy. Your best source is your doctor.

 

[ronroush7]

I don't know that much about obstructions, but I haven't been diagnosed with one. I had a colonoscopy a week and a half ago to diagnose the Crohn's, would an obstruction have shown up on that?

Did the doctor give you the results from the colonoscopy yet?

 

[cmack314159265]

Yeah we got the colonoscopy results back yesterday when I met with my doctor and he didn't mention an obstruction, so I can probably assume it's not an issue.

 

[ronroush7]

Okay, the blood tests will help a lot.

 

[ronroush7]

Best to you

 

[cmack314159265]

Thanks for the advice, right back at you ronroush7!

 

[ronroush7]

Thanks

 

[Clash]

Yes a colonoscopy would've shown an obstruction in the large bowel or even narrowing. It sounds like you were flaring. A full obstruction would have caused severe pain, vomiting and the like.

It sounds like you are in good hands. CD can be such an individual disease. My son is 19 and was dxed at 15 he was asymptomatic with severe inflammation for a year. His only outward symptom was lack of weight gain, no pain no blood. Meds weren't working and he required surgery. Now trying to find the right med to get him into remission since he's flaring again and only outward sign is anemia.

I hope they find the right meds for you quickly that will give you a long remission!

 

[cmack314159265]

I was on entocort for a week between when they found inflammation and when they were actually able to diagnose it as Crohn's, and it wasn't doing very much for me, but after meeting with my doctor yesterday, he put me on prednisone and I'm also starting pentasa as a maintenance med. I have just started taking them, so it's hard to tell how well they are working, but I'm really hoping that those will help me get back to school after winter break!
I'm sorry to hear about your son, hopefully he will find the meds he needs as well!

 

[Clash]

Pred tends to dampen the inflammation quickly and pentasa (if it's going to work) doesn't take long. If you start experiencing symptoms as you taper off of the pred make sure to let your doc know.

Pentasa treats the top layer of intestine which is great for Ulcerative Colitis but since Crohns is transmural, affects all layers, pentasa is often not enough. Some with mild disease are able to do well on pentasa alone.

Since you are fairly asymptomatic make sure you do regular blood work and fecal calprotectin stool tests to determine if there is still possibly simmering inflammation, scopes and imaging if the lab work shows inflammation.

Good luck hope the meds work well for you.

 

[cmack314159265]

Thanks! I think I might also be starting some other maintenance medication along with the pentasa after we get some blood work back. For now I'm just keeping my fingers crossed.