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HOw long did it take you to get diganoised with Chrons & experience??

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Crohn's Disease
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Posted 7/23/2014 4:21 AM (GMT 0)
Ive had terrible on and off bad abdominal pains for about 2 years! Im 15 years old , very active & not obese! Ive been to the hospital 5-6 times with pain, they first thought i was constipated and sent me home. I then got test done with my surgeon and got my gallbladder removed Febuary 25. Im still having lots of pain after i eat, lots of fatigue, lost 10 pounds since my surgery. I had a colonsocpy/endoscopy done 2 days ago. My GI said i have IBS with inflammation in my terminal iluem! I had been taking medicine for IBS already called Bentyl and was still having pain! Took 6-8 biopsies and should find out results in a week! My bilirubin was slightly high @ 1.5 with blood test! I think its BS and could be Chrons/Colitis. Was it this hard to get diganoised? can IBD be mistaken for IBS? what else should i do? I dont even wanna go to school because im always in pain and caomes home.

MEDS:
nexium
zofran
diccylomine(Bentyl)
Posted 7/23/2014 1:46 PM (GMT 0)
You won't have colitis if the inflammation is in the terminal ileum and not the colon; colitis literally means inflammation of the colon. ('col' = colon; 'itis' = inflammation). Likewise, ileitis refers to ileum inflammation.

Wait for the biopsy results; if you have Crohn's, they will confirm it. Meanwhile try to follow a bland diet, drink herbal tea, apply a heating pad to your stomach, or whatever helps alleviate the pain. Don't take any NSAID painkillers (eg anything with ibuprofen in it), as they can cause ulceration of the GI tract.

Me, I got a quick diagnosis, but that was mostly just luck and having a doctor who took my symptoms seriously enough to order blood/stool tests and refer me to a GI consultant. The hospital did a small bowel barium follow-through and a colonoscopy; I got my diagnosis after that. It took a few months in total. However, there are plenty of people who've been through what you've been through; I'm sure a few of them will post.
Posted 7/23/2014 4:45 PM (GMT 0)
Hi,

I'm sorry to hear about your illness. I remember struggling to go to school and missing a lot of school because of it. I'm surprised that a doctor nowadays is diagnosing you with IBS when there is inflammation present. IBS does not cause inflammation and a GI should know that. Your parents should seek a second opinion for you IMHO. I got the same diagnosis when I was young; back then they called IBS a spastic colon or spastic colitis even though there is no inflammation with IBS. They were diagnosing practically EVERYONE with it back then. It took me until age 36 to get the correct diagnosis. But there's no reason for that to happen to you in this day and time. It can still be hard to diagnose though.

I have Crohn's ileocolitis because I have it in the terminal ileum and the colon. It's not unusual for someone with colon disease to have it in the terminal ileum, but at this point that doesn't matter. Your losing weight and in pain and still sick and in need of a second opinion.

Bentyl was one of those meds I took a lot before my Crohn's diagnosis. It's an antispasmodic and will help with spasm pain, but do nothing for the pain from other sources. And like you, I ended up in the ER with terrible pain at times. My GI once told me that after about 2 weeks of continued use of Bentyl, it's not as effective as the body gets used to it. It's one of those darned if you do and darned if you don't things.

I hope your case can be further investigated. I, like you, don't think it's IBS alone.
Posted 7/23/2014 11:03 PM (GMT 0)
Hang in there girl, you're on the home stretch of getting this diagnosed from the steps you've taken so far.  Let the doctors review your scope and again just hang in there.  It took decades for mine to be diagnosed and a treatment plan started for me...so I know what you're going through.  I can't remember how old I was (single digits) but would have bouts in the middle of the night where the pain was so bad I went to the basement bathroom so I wouldn't wake anyone and would endure hours of pain so bad it induced vomiting...and through my teenage and college years...And I was hospitalized when I was married only because my wife was worried because she found me curled up on the bathroom floor...and even after that first scope they found inflammation and the beginning of what would end up as ulcerations but never pursued testing for Crohn's until my second hospitalization and scope when I was 30.  It's horrible, and just seems to suck the life and joy out of you, but remember it's going to be ok...things will get better in time, and you have support, not only in your friends and family but everyone here. 
Posted 7/24/2014 2:09 AM (GMT 0)
My doctor was confident i only had IBS but told my mom i had imflammation in my terminal iluem! Ive heard before ive had IBS and took meds and ended up back in the hospital! Im tired of getting sent away saying your fine, obviously something is wrong if im in so much pain im doubled over on the toilet every night! Im not sure what to do now! I cry sometimes because im tired of my stomach in so much pain when using the bathroom and eating! i looked it up and did lots of research and my moms aunts a nurse and usually IBS doesnt have inflammation! I feel like i have nothing else i can do but be in so much pain and get worse until somebody actually looks deep into it! I dont even wanna bother going to school this next year and is dreading it bad!
Posted 7/24/2014 1:06 PM (GMT 0)
Talk to your parents about what we've discussed here. Get them to read this post. IBS doesn't cause inflammation. I've had doctors quite confident I only had IBS too, but they were wrong. The above posters know how you feel and we hope you can get someone to listen because you need a second opinion. There are some Crohn's patients here who know far more about this disease than most GIs. I don't know if that's a credit to those patients or a discredit to the GIs.

If it's any consolation in the meantime, it's that some of us know just what you're going through because we've already been in your shoes. We just don't want you to have to walk in those shoes (of misdiagnosis) as long as we did. -Joy
Posted 7/27/2014 6:07 PM (GMT 0)
Hi dancergirl15, when i was 17 i was diagnosed with ibs and was sent home with bentyl and it didn't help. I went to the ER every week in pain and dealing with fatigue and nausea. They only admitted me 4 weeks later because my mom yelled at the doctors. I was then diagnosed with crohn's. If you think it's something else then you should definitly get a second opinion. I'm not trying to scare you but if it is something like crohn's or colitis then the sooner the diagnosis the better.
Posted 7/30/2014 1:41 AM (GMT 0)
apparently when i had more blood work done it ended up i have a rare disorder where i cant digest starches properly??
Posted 7/30/2014 1:26 PM (GMT 0)
Did the doctor give you a name of the disorder? Something like that could explain the inflammation. Celiac Sprue has symptoms similar to Crohn's.
Posted 7/30/2014 3:33 PM (GMT 0)
You may need a second opinion. It's common to get told it's just IBS. I heard all of that too, and was told that I was too young to have anything serious. I even had a scope that showed inflammation but that GI doctor waffled around with what it was. So I dropped him like a hot potato.

It took me about 6-7 years to get the proper diagnosis. I actually cried when my doctor now finally confirmed what I knew all along. It can be a long road for some of us. Good luck to you!
Posted 8/4/2014 3:04 AM (GMT 0)
Its not celiac sprue, he just said i have a starch malaborption (normal test 5-7) mine test was below 1. But could they be considered malnurtrioned and thats apart of chrons because to be honest i dont believe after 2 years of being in pain and all the blood work ive done, all the sudden its just a "food allergy"! I told my mom i dont think its anything theyre saying that i have and i know i will just contuine to have pain, they didnt even give me any medicine they told me to stop all of them and now i have nothing! I was on bentyl for 2 years! They just said i need to go on a special diet. But at first they said i had IBS then they said i dont TWICE/THREE times and now said i have this!
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