Whats going on with me?

[stephaniem]

I am 21 years old. I have officially been diagnosed with Chron's since I was 15 but have had misdiagnosed symptoms since around age 5. I am currently taking Lialda and Librax and have done 2 rounds of prednisone in the past. I am frustrated and confused because according to my most recent colonoscopy my chrons is in complete remission and is barely inflamed yet if I dont take my medicine the second i wake up I will be in the bathroom with diarrhea and severe abdominal pains for the rest of the day. I have never been able to come off medication even when I am in remission but I dont understand why if my ct scans and colonoscopy look so good then why do I have such severe symptoms all the time???

 

[happy]

Stephaniem
Welcome to the forum.
One explanation could be that you do have inflammation in an area that they couldn't see during the colonoscopy, such as the terminal ilieum or further up the small intestine. You could ask for a pill cam test to see if this is true.

If you are not having blood--it could be a sensitivity to a food that you are eating, such as wheat or dairy. You could look in the Diet sub-forum for more info about this.

Check out the celiac/crohn's thread: http://www.crohnsforum.com/showthread.php?t=38975&highlight=celiac

Have you been tested for celiac disease?

Hope you solve the mystery soon.

 

[EthanPSU]

Hey stephanie,

I argree with happy, colonoscopys and such might now see everything. They are only looking at the major areas.

I would also try what happy said aswell, try to eat foods and if you are hurting and in the bathroom the next hour i'd avoid that food. Foods are different for everybody so you just need to find what is good or bad for you.

Anyways, I hope you get it under control, being young (especially 21) and not being to go out and such must be a bummer.

 

[David]

Hi stephanie and welcome

I'm so sorry to hear you're still struggling

A couple questions:

1. Where SPECIFICALLY is your abdominal pain? For example, just above the belly button, top left, bottom right, or?

2. Have you tried any special diets or dietary changes to see if that helps?

We're here for you!

 

[stephaniem]

Thank you guys so much. I have been tested for celiacs more then once and I don't have have it. I have also kept food diaries since I was a kid and have never found any specific foods that trigger it and I am not even sure if it is food that causes it because I wake up in pain before I have even eaten anything. My pain is mostly right below my belly button and I also get moving pains almost like I can feel the food painfully moving through my intestines (if thats even possible?). I was also wondering what does everyone else do for pain? i get pains so bad that I cant even move or do anything but stay still and focus on not crying out in pain? is that normal because I have had kidney stones and ovarian cysts so im no stranger to abdominal pain but these are bad. sorry for the rant guys i guess im just getting tired of alwayyys having a stomach ache.

 

[David]

Hi Stephanie,

If your pain is right below your belly button, that tells me it's in an area that your colonoscopy would likely not be able to view. And yes, you can feel food passing. My GUESS is you have a stricture in your small intestines. And being on Lialda won't help much if at all as it is formulated to treat disease in the colon, not the small intestine.

I would discuss the idea with your doctor of utilizing a capsule endoscopy (with dummy pill first) or maybe a CTE or MRE to evaluate whether you have active disease in your small intestine.

 

[Chad K]

I agree, it sounds like a stricture in your small intestines. The colonoscopy doesn't get that far. You need to get a CT scan, and get on some medication that will really help out with the pain. What helps me is mineral or castor oil. I talke a spoonful or two any time I am eating anything that may cause pain when going through my intestines. The mineral oil helps out so much, along with the fiber one tablets and probiotics. It really helps reduce the abdominal pain. Also try to avoid stress as much as possible, as it contributes to my crohn's a lot.