My story (very long..)

I started to notice I was "sick" my first semester of college in the fall of 2009. It started the first week of school. I would get what felt like a fever. then (always exactly)2 days of not being able to eat or drink ANYTHING without throwing up sometime later(I would NEVER throw up before this, I would hold it in as much as possible but these times there was no stopping it). Everything would stay in my stomach and stay there both days. I wouldn’t be able to go to the bathroom even though I felt I needed to. This would happen every 2 weeks, no more, no less. I would get cold water and put it in my mouth but barely swallow any to feel as if I was drinking because I would be extremely dehydrated and I would pour it on my face- sometimes to cool down and just because it always made me feel less sick. I would instantly recover and feel 100% better two days later when I could finally go to the bathroom. After about 3 months (Beginning of December) my parents scheduled a doctor’s appointment. I told him all of this but he didn’t seem to listen really. He thought I had ulcers and prescribed me some kind of medicine to combat it, which I was supposed to take every night. He also ordered a blood test. I took that and it came back I was Anemic. The sickness randomly stopped and to this day has not come back but what did start happening was that my stomach would start making loud grumbling noises. These didn’t happen much at first. They also didn’t hurt right after the sound occurred at first too. These would progress to happen more and more and hurt more and more. I never mentioned anything about the pain, but the sound was obvious to everyone around me and my doctors, as they would occur more as ore anxious and worked up I got. These would eventually start happening every 5 and sometime 2 minutes. I had a couple checkups through January and notice I was losing weight. (I turned 19 and weighed under 100 pounds already)He sent e to a blood specialist where I would go in every week and get a new test which all came back as my anemia was getting worse and to confirm I was still losing weight every time. In February, I went to get an ultrasound and x-rays of my stomach and intestine which came back normal. He also sent me for an endoscopy which I got out of just before they stuck the IV in because the doctor thought it could be too risky. He also suggested a colonoscopy which I somehow managed to get out of without anyone noticing or saying anything about it. He decided to start me on iron treatments in the cancer center which was conveniently in the same office. I had to do one treatment every week for five weeks. This began in March and ended in April. After more visits and more weight loss, he re-scheduled e for the endoscopy which the results came back as only some inflammation and they didn’t take it that seriously the just suggested I take stomach acid reducer which I never took. No one here knew what was happening and he scheduled a trip to the Mayo Clinic one state over. I was on a wait list and had to wait until the end of May to go. In between this my blood specialist scheduled me with their dietician. This lady CONSTANTLY INSISTED I confess to having an eating disorder because it was “obvious” I must have been forcing myself to lose weight or something. “Maybe because I thought I was fat or maybe to get more attention from m my parents” and me saying my body doing this and if I could I would eat whenever I wanted just wasn’t good enough for her to hear. I don’t think anyone has ever frustrated me to the point she did. Everything started getting worse and worse. I kept losing weight and the stomach noise and pain would progress to the point where it would practically paralyze me but I still got away with no one noticing that I was also started to lose my appetite and would start feeling full from less and less food. Although there was some times I would be able to eat more than I ever have before in one sitting. The anemia finally started showing and I was able to do less and less each week. I would randomly feel like blacking out and lose my vision, hearing and need to sit down and wait for it to pass. Finally (although I was NOT looking forward to it at the time) it was the end of May and my dad and I took a road trip to the next State. It must have been perfect timing because the night before we left, was the night I couldn’t even walk downstairs to get dinner without the feeling I was about to black out. My dad brought it up to my room and looked worried but I tried to assure him I was fine and just a little tired. It would be a nine hour drive to the hotel near the Mayo Clinic. I didn’t get out of the car once to stand and stretch. The ONLY thing I ate was maybe two bites of a McDonald’s hamburger and a couple fries. That was just about too much for my stomach to hold, but didn’t seem to be much of a problem. As soon as we arrived and started walking towards the hotel, the blackout sensation hit me mainly by my legs acting like spaghetti but I still managed to walk in at sit down at the first seat I could find. The next day I went to one of the Mayo Clinic locations for a blood test and a couple hours later to a different Mayo Clinic location for a cat scan of my stomach and intestines. I could barely drink any of the nasty tasting liquid they make you drink for the x-rays. I would keep telling them I didn’t think I could drink anymore and told them I was starting to feel sick and didn’t think I would be able to walk anymore. They took me out of the waiting room where everyone else was drinking their stuff and brought me into a private room and laid me down and had me continue drinking the stuff. Soon after, one of the nurses ran into the room and told me to stop drinking (Even though I was supposed to finish off another bottle and a half of the stuff) and rushed me to the CAT scan. They took that and put e back in the previous room to watch me, because I wasn’t doing well at all. They gave me a couple saltine crackers and some sprite to try and help it. Maybe 15 minutes later they told me they were going to take me and my dad into a separate room to talk to us. I knew right then, that they must of found something. They had us both sit down on a patient bed and told me they think I have Crohn’s Disease. I was actually relieved because for the past half a year I researched my symptoms online and one of my thoughts was that I might have that. They said I would be admitted there immediately. I weighed 74 pounds when I was admitted. They put me on an IV right away and talked to me a lot and scheduled a colonoscopy and endoscopy 3 days later. I couldn’t eat or drink ANYTHING before that. They took 3 blood tests, 5 blood sugar tests and gave me a number of shots each day. They started me on prednisone also. They put a catheter in my arm with 3 ports. 1 for water, 1 for fat so I could start gaining weight and one for drawing blood. Although I hated the process, I didn’t have to get stuck with needles as much. I still had to get the finger pricks and shots though. My mom flew in from another state and one of my parents was present the whole time besides when I slept. My dad did whatever it took to keep me entertained. Taking the gallon of laxative for the colonoscopy was very difficult for me and it took 6 hours after the time I was supposed to be finished drinking it when I actually took my last drink – I wasn’t able to finish all of it but the nurses finally decided it could be enough. My mom had to stay overnight and not fall asleep until I finished drinking what I could. Each cup was loaded with crystal orange or lemon flavored. So they did those tests and discussed everything with us and the surgeon team decided not to do surgery. They slowly started letting me eat the hospital food by introducing liquid for first and progressing each day. Even though it was hospital food, it was the BEST food I felt I have ever eaten. I started feeling better and started going on walks with the IV the last 2 or 3 days I was there. They moved me rooms about 12 hours before they released me and told me what vitamins I should take and that I would start on Humira soon after. I was there for 7 days and felt much better when I was released on June 13th. We stayed the rest of the day in a hotel- where I ate a hamburger and half a pizza- and drove back home the next day. When I got home it was really hard to walk up the stairs and I was still tired all the time. But I was slowly recovering. The stomach sounds continued and the pain became noticeable again, but a couple weeks later, I flew across the country to visit my mom. There, I stayed laying on the couch most of the time dealing with the stomach sound and pain as it worsened. There, I learned how to inject and started on Humira at the end of July. I slowly started recovering and even slower started gaining weight back. We made a couple trips back to the Mayo Clinic for checkups and regular checkups at my new gastrologist where he is happy with the progress. I eventually started gaining weight faster but it has since slowed down and is at around 109 Now, there is no more stomach pain and the only effect I feel besides still not being able to do much without tiring easily is the stomach sounds(I feel them coming - usually uncomfortable) which occur a lot most days. It’s usually when it’s quiet in class when it happens and can happen every 2 to 5 minutes for half a day. I haven’t gotten a blood test since my last checkup at the mayo clinic where I was still anemic and low on vitamins. This is as much of my story as I can think of up to this point.

Wow sorry that was really long and not in paragraphs..
Also left off A LOT at the end, but I'm getting tired and have class tomorrow.

Hi Zac and welcome! Boy, what a journey! I am so glad you went to the Mayo Clinic and got your diagnosis. I guess it was worth the wait. And it is wonderful news Humeria is doing the trick. I hope you continue to feel better and better. Glad you found us!


PS- Love your username!

Wow Zac. Welcome to the forum. I sure hope you feel healthy again soon, sounds like you've been thru the mill.
Misty

Welcome Zac! What a tough time you had. I'm glad they figured it out. I went through the "eating disorder" stuff as well - very frustrating.

The members here are very helpful, I hope you feel at home.