I was always a fairly healthy kid growing up. My only bad bout of infection was a sinus infection gone wrong in 2nd grade. My throat swelled up so I couldn't swallow at all for 6 months and had 2 take lots of medicine. Then I was fine for a while just getting sick more often than usual.

Then again after many bouts of strep throat and antibiotics and WAY too many "stomach flu bugs" to count this is where my story begins I was 9 at the time. I missed so many days of school which I hated but I was able to pass 4th grade in the end. That summer after my parents were able to observe my diet and noticed milk products made me feel worse so they cut all dairy from my diet and I felt better so it was attributed to lactose intollance.

I still lived off peptol bismol, tums, and mylanta. I never succeed a period of "remission" where I have been symptom free. 7th grade was very happy for me but still my stomach acted up badly along with braces I lost a lot of weight. Luckily this didn't last and once I could get active I got the most muscular yet! Then we moved...

My stomach problems came back worse than ever I had to switch back to homeschooling. My pediatrician diagnosed me as having severe gastritis, told me to take prilosec, and ran some blood urine and stool tests. I started losing weight at a healthy 120lb 5'6".

I caught a stomach virus on top of my normal pain, nausea, and D. I never recovered and developed panic attacks when I went out in public due to the 20-30 times a day D. This was such a bad year of my life...psych drugs are nasty things I don't remember my 14th birthday or most of that year. In the end I've kicked anxieties butt!!! On my own!

Well in the summer of 2008 my pediatrician started testing me for everything! He started off with more common things that fit celiac disease, leukemia (sufferer of chronic fevers and night sweats), diabetes, organ problems, ect... then everything under the sky literally!

Then I was sent to an allergy doctor and he tested me for some allergies. Turns out I'm allergic to nothing!

Then finally in December I went to a GI doc. He just brushed it off as IBS but ran blood tests to check for IBD. Well despite following a strict diet I ended up in the ER a week later in severe pain and was diagnosed with GERD and gastritis and given high dose zantac.

Early Feb 2009 we got a call from Ped GI dep saying I had an EGD/colonoscopy scheduled for the following week. We had no clue why so my dad called the doctor and he said that I tested positive for Crohn's antibodies and needed the tests immediately the confirm it.

When I woke up from the tests he had the biggest smile on his face and he said, "I finally know what's wrong with you! You have Crohn's disease. It's chronic but treatable. I'm starting you on prednisone today." I was scared to learn I had a disease with no cure but so happy to have a chance at feeling better! For once the prednisone kept things from getting worse in fact getting a little better but alone it wasn't enough. Just a few days later we got the bad news the biopsy results were inconclusive and I needed more tests. Well I couldn't wait until the scheduled tests so my dad had to call and tell the doctor I was below 90lbs at 5'7" and he admitted me immediately.

I was but on NG tube feeding because despite prednisone and eating more than enough food I was still losing weight. I had an abdominal ct done as well as more of the usual tests. This is where they ruined my life by saying there was nothing medically wrong and misdiagnosed me with an eating disorder. I had to have a sitter (watched 24/7 by a nurse even when you are going to the b-room!) and was discharged with no weight gain on March 14th.

I had to attend EDIOP (living you know what) I was interrogated into saying I was doing things I wasn't it was plain horrible!!! I ate 4,000-5,000 calories and still lost weight they insisted I was bulimic which I'm not/was!!! I was kicked out after a month (lol!) because I lost 5lbs but that meant hospital.

I was only 85lbs at that point and doctors honestly didn't think I would make it through the night. I was on 100% NG feeds I couldn’t even take a sip of water for the first week. Another round of tests was run while I was there…but I had to be under the horrible ED protocol the whole time. After my 1st sweat test coming back at almost 59 (>40 negative, <40 borderline, <60 you have CF) they thought I had cystic fibrosis which was really scary! They did another sweat test and it came back even higher! So they did a chest x-ray and DNA test on me and I will never have CF!!! I was discharged after 2 weeks on a liquid diet and complete bed rest.

Even drinking 10 cans of CIB+ and whatever else I could eat totaling well over 5,000 calories I lost the small amount of weight I had gained in 2 weeks. I went to a new hospital and the GI NP after evaluating me admitted me immediately with a heart rate of less than 40 bpm and blood pressure dangerously low. We decided having an NG tube more long term was my only choice at the moment. I was but on a new lower fat pre digested formula. I responded great!!! I had to stay in the hospital for 3 weeks to be stabilized, they ran more tests, more medicines, ED protocol, overall worst hospital stay yet! Therapy dogs were the best part they never failed to put a smile on my face!

I went home with Mr. Tubie on night feeds. I was able to go out finally!!! People did stare and make rude comments but that was their problem! My family and friends didn’t care or treat me different. I got a bad blockage (didn’t pass stool for a month) which was unusual for me cause I always have D but once it was cleared I’ve never had another problem.

I had been waking up with bad headaches for a month and losing vision in my right eye but it usually came back in a few hours. One day it didn’t so my mom rushed me to the ER. I had a head CT which came back normal. My neurologist diagnosed me with ocular migraines and told me my vision would come back. Well by the next week I was pretty much blind so I went to the eye doctor and for a head MRI. Everything turned out fine but my vision is still extremely limited.

I had another EGD/colonoscopy done in July. The doctor that performed it was very evasive about it and said, “Except for some fissures and stuff it looks fine.” End of story. Well in August I started profusely bleeding rectally my parents once again rushed me to the ER. I was given morphine, an abdominal CT, and was just short of needing a blood transfusion. I was expected to be admitted but the GI doctor said nothing is wrong with her so they sent me home. The next day during my follow-up appointment at the pediatrician after seeing how much pain I was in and since the CT wasn’t clear they sent me straight back to the ER. Same routine except this time, ultrasound. I was classified as a chronic pain patient at the age of 15 and sent home on narcodics to help ease the pain.

Sophmore year I am taking 2 classes on campus a couple times a week. I am part of the National Honor Society despite being in the hospital a month and a half of my freshman year. September 17, 2009 Mr. Tubie came out for good!!! I reached a healthy weight of 110lbs 5’8”! I was still far from better.

In November I had a capsule endoscopy placed by EGD. A few days later we got the bad news it came back fine. I was holding my own for quite a while but I started sliding after a bad medication reaction (another ER visit) and in such severe pain and nausea it was hard to eat. I was sent back to my original GI doctor but didn’t have an appointment until January. By the time I saw him I had lost 10lbs! This made me very upset! On top of it he said it was just IBS but at least was open to helping me manage it. I am now taking Elvil (doesn’t work), Ultram (makes pain a 9 which for me is sadly good), and had to double my regular Zofran dose. The next step in treatment would be epidurals.

Summery

Symptoms – Extremely severe abdominal pain 24/7, nausea, D, bleeding, fevers, loss of appetite, joint pain, weakness, fatigue, and night sweats/fevers.

Tests (That I remember lol!) – Hundreds of pricks thousands of blood tests, lots of urine tests, 24 hour urine tests, stool tests, fecal fat test, TB, EGD, colonoscopy, capsule endoscopy, sweat test, upper gi, chest x-ray, back x-ray, abdominal x-ray, abdominal ct, abdominal mri, EKG, ultrasound, head ct, and head mri.

Medicines tried (Again remembered) – All OTC stomach products, zantac, all types of psych drugs, phenergan, prednisone, benadryl, reglan, codeine, neurontin, oxycodone, 800mg ibuprofen, maxalt, enderal, topamax, and all types of IBS drugs.

By: smalltowngurl