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I didn't know what was wrong with me. I did everything the doctors told me to do. I didn't do anything wrong! I didn't do anything wrong.

I'm seventeen.
I had my first crohn's symptoms september of 2010. I had a stomachache that night and threw up in the middle of the night.
After that, I started getting stomachaches from everything I ate, I had diarrhea every day, and my stomach began making these really loud obnoxious noises.
The pain was around a 5 at this time.
In february of 2011 I finally had convinced my family that something was wrong with me and they had made me a doctors appointment. The doctor took blood tests and found severe vitamin D deficiency, fiber deficiency, and anemia. I was put on supplements and some of the pain began to go away.
Come september of 2011 and all the pain was back. It was worse at this point, probably around a 7 every day.
I stopped eating, people thought I had an eating disorder because I always refused to eat when I was offered food.
I knew that there was something wrong with me, but no one else believed me.
After severe episodes of vomiting, diarrhea, and pain, I was taken to the ER twice. The first time, only blood tests were taken and those all came out normal, so the doctors said that there was nothing wrong, but since I have been having problems for so long, I should see a GI.
We scheduled that appointment for early december.
Thanksgiving Day, I didn't eat anything, and the next day I threw up twice. I went to the ER again where they did blood tests and a CT scan. I was moved to the hospital after they found inflammation in my small intestine.
That weekend, at the hospital, a GI performed a colonoscopy and figured out that I have Crohns.
I was put on 6-mp, 40mg of steroids, an antacid, as well as the supplements from before. I went on the Crohns diet, I keep a food diary, I never missed taking my meds, I did everything I could to take care of myself. The pain all disappeared, and all my symptoms were gone.
By January 1st of 2012, the pain came back suddenly at full force. At this point, the pain was at a 10. I threw up every week that month and I could actually feel my intestines inside of my stomach - it felt like they were grinding against each other, or like there was a knife inside my small intestine and it was just moving around cutting my inside's up. It was the worst pain I had ever experienced in my life.
On january 31st, I got an x-ray done that showed I had developed a blockage in my small intestine. It was so bad that the biggest thing that could fit through had to have the diameter of a straw.
I was taken to the hospital that night and had to be taken off of steroids so i could get my surgery.
I had my surgery on February 7th. A foot of my small intestine was removed. Two days later, I got a fever, but quickly found out that it was my body's reaction to being taken off the steroids so quickly.
I was released from the hospital on February 17th.
After my surgery, I could eat anything I wanted and I had no pain or symptoms.
In august of 2012, I had a colonoscopy and an endoscopy and I was told that my Crohn's is officially in remission.
I am on no meds, and I eat anything I want.
*****
After December 14th, I've started having symptoms again. I've been really stressed so that could be it, but I don't think it is.
I've had diarrhea a few times as well as a few episodes of mild pain. It's so scary, because I don't know if that's my Crohns or if its just a stomachache from something else.
I don't know what to do or who to tell. What do I do? Is it worth telling someone about or should I go a few more weeks and see if the symptoms intensify?
PLEASE HELP!!
 

Jennifer

Adminstrator
Location
SLO
Hi sunshinelover and welcome to the forum! :D

You mentioned you went on the "Crohn's diet." What is that exactly? There are many different diets out there but nothing specific for Crohn's. Only one I think it could be is the Low Residue diet.

Yes you should tell someone about your symptoms, mainly your GI but if you have to go through a parent or guardian first then let them know so they can inform your GI. Make a list of your symptoms and how bad the pain is and where so your GI gets all the information.

Crohn's disease usually needs to be treated with medication so you can avoid more surgeries in the future (chronic inflammation builds up over time creating a narrowing which can result in a blockage). I'm confused as to why your GI didn't prescribe anything to help keep you in remission after surgery. Its likely you didn't get the 6MP in time to help get your condition under control fast enough which led to your surgery but that doesn't mean it wont work for you now. Talk to your GI about maintenance medication to help maintain remission. Your GI should also be able to order blood work to see if you have any active inflammation (by checking your CBC and CRP).

Keep us posted on how you're doing. :)
 
Ditto what Crabby said. I am dealing with a flare up and my gi doc sees me every 6 weeks. I get some lab tests done each time. I went 25 years+ without meds, but that was pretty lucky- it was thought my surgery had cured me of UC but turns out it was Crohns. Now even when I am officially back in remission, my doc says I will be on some meds the rest of my life. Thankfully, those meds won't include steroids- you only want to take them short term. I also had trouble coming off that while in the hospital years ago- it's a real tough drug to deal with at any point.

And what's with thinking you did something wrong? Nope, absolutely not! IBD doesn't discriminate- it treats everyone like crap, just a matter of degree. You described the pain extremely well! I hope you never have to feel that again. Things do get better, but do ask your doctor questions about meds and/or get a second opinion. One thing that's different now with IBD versus when I was diagnosed in 1986 is that doctors are more aggressive in treatment. Being more aggressive early is shown to produce longer remissions. I went so long without any meds, so technically anything is possible, but best to play it safe.
 
sunshinelover: so sorry you are dealing with this! Your experience is very similar to mine, although I was older :) I was in remission for some time after my surgery, not taking any meds and thinking that my diet alone was working for me. I've since come to believe that Crohn's is, for me at least, a cyclical disease with ups and downs no matter I do. It is a disease that as Hobbes650 states "...doesn't discriminate - it treats everyone like crap". I will now always stay on meds as the flares are worse without them. For me it is also important to catch flares early as I tend to get strictures and can turn serious quickly. Going through one now actually - It hit it's peak when I was at a midnight showing of The Hobbit....I don't even remember the movie, lol!
 
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