Growing Up with IBS

I have had IBS-C for so long that you think I would be used to some of it by now. I started having stomach problems in fourth grade right after Christmas break. I felt like I had the flu but I was also only like 9 and didn't know the difference yet. I thank God everyday for giving me the teacher I had during fourth grade. She was my advocate and made sure I was given the help I needed while in school. I was poked and prodded so many times in just one year. I had an upper GI test, glucose tolerance test, x-rays, blood work, blood work, and more blood work, and ultrasounds. They couldn't find anything wrong so their conclusion was that it was in my head! I know we have all heard that one before. Well, since the doctors wouldn't do anything to help and I was little and stubborn, I only ate when I felt well and started losing a ton of weight. Then I had one doctor accuse me of being anorexic! Maybe if they had listened and not told me I was making the pain up, I would have been able to eat without forcing it down.
Finally, my teacher made a call and got me in to see a gastro doctor at Riley Children's Hospital. I walked in, he asked me a bunch of questions, felt my stomach then said I had IBS-C and was hypoglycemic, after another glucose test. He told me to find a stress reliever and add more fiber to my diet. Then he gave me a long list of what not to eat. I thought that was the end of my problems....haha not. I tried Bentyl but it made me sick so I was on Nulev for a while. My main symptom other than constipation is nausea and I was still having a hard time staying in school. I had at least one horrible teacher a year. One wouldn't let me eat so I passed out in his arms, I was 10, and he carried me to my teacher and when I woke up said he did not want me in his math class anymore! Other than teacher problems, my symptoms were pretty much under control.
By eighth grade, my symptoms got worse. I was having horrible abdominal pain. The first GI in the area where I live had just opened his practice and I started seeing him. He found blood in my stool and admitted me into the hospital to check for Crohn's and cancer. He was one of those worse case scenario doctors. I had a colonoscopy and an endoscopy. The prep made me vomit and the pain medication got rid of the pain but once again made me puke. The procedure wasn't bad but the prep was awful! And go figure...they didn't find anything. I felt like crap for a few weeks afterward and a teacher wouldn't let me make up the tests I missed and tried failing me. Thank God again I had a teacher with IBS who talked to this horrible teacher. Ok so end of problems until senior year of high school except for crummy teachers and friends not believing me. My best childhood friend told me she couldn't hang out with me anymore because I was weird and couldn't eat at Mexican, Italian, or oriental restaurants...even though they have American food...go figure. I did find one thing that helps me immensely!! I ride horses now and do a lot of training and shows. My first horse could always brighten my day and I felt so much healthier when I was riding every day.
I had just gotten out of an abusive relationship and met this great guy who didn't judge me for my tummy problems. He has witnessed everything from me passing out to having a full blown IBS attack. I love having someone to hold me when it hurts and make me laugh, which I find really helps. Well life was great until my senior year and I had horrible teachers! One tried reporting me to social services because I had missed more than ten days of school and then I had one teacher that took bets on whether I would be there or not. I walked in late and heard the whole thing and she still denied it. Then I started having ovarian cysts and was put on birth control to manage the cysts. My IBS symptoms almost completely disappeared! It was wonderful! But I was still having other health issues and missing school. By the end of the year I had missed over 55 days of school but I still had all A's and B's. Then I had a student decided that it wasn't fair that I could miss school and make up everything without consequences, so this person went to the principal and said I should not be allowed to graduate! Then when that didn't work the principal said that if I missed any more school I wouldn't be allowed to walk at graduation! Well once again one of my teachers, who's son had IBS, stepped in and worked everything out. He was even able to give me my flower during graduation :)
Ok now for work. I was working in childcare and was treated horribly when I would have to miss work or go for a walk to get rid of the pain and bloating. After two years, I was pulled aside and told that if I missed any more work that they would have to let me go. At the same time, my grandfather had been diagnosed with brain cancer and I refused to go to work when he was having brain surgery, which they didn't like. It also didn't help that I was only scheduled to work one day a week, so it seemed that I missed more because they wouldn't schedule more days! The children I watched were more supportive than the adults! So I started showing up to work in horrible pain and could hardly focus and the children noticed that I wasn't as happy and wouldn't play with them as much. According to them I was the best councilor because I played with them and always had a smile on my face. I felt so bad that I couldn't function normally and I felt as if I was letting them down. After a week, I decided to quit before I was fired. The day before I was going to tell them, my boss pulled me aside again and said that even if I missed because of my grandfather, I would be let go. Needless to say I gave my two weeks that day. I miss the children, but I do not miss the constant stares and questions on whether I really was chronically ill.
My summer was great, barely any symptoms and my first year of college was amazing. I only missed four days of classes each semester! I had decided to go into elementary education so I could help children like me. Then this past summer was really bad. My grandfather died from a battle with brain cancer and I started having this sharp pain on the right side of my stomach. They rushed me to the emergency room to check my appendix, which was fine, then sent me home saying I had a cyst rupture. Well I didn't, and a week later I was having surgery to remove a mass from my ovary that was scarring my tubes. Once again the pain medicine made me so sick. At least now I know I can't handle codeine! Well, my IBS flared up so bad that I could not function normally. The children I nanny were brought to me every day and I couldn't ride my horse! I saw my doctor and she sent me to a new GI since my original one was a pediatric doc. The new doctor told me that I didn't have IBS and that it was all in my head! Why become a GI doc if you don't care about helping people with IBS? I still don't get that one. I switched to a different GI who was awesome and really helped! Granted this was two months into my sophomore year of college and I had already missed a ton of class! Then because my immune system sucks I got the nasty viral infection going around campus. Once again, an idiot doctor but me on a cough medicine with codeine in it!
So...to today. I have lost over 15 pounds and I'm only 5'4'' and weighed 125 before all of this, so I feel pretty weak. I love where I go to school and miss being in class and seeing my friends. When I did try to go, I passed out from exhaustion, thanks to the weight loss, and a friend had to bring me home. My professors are pretty accommodating and are helping me get through this rough patch. The hardest thing is to not give up. I am so tired from losing weight and having flair ups every day. I am on Hyomax, which isn't helping the sleepiness, but my episodes aren't as bad. I just want to curl up and cry and give up sometimes, but I do not want this disorder to control my life! I miss riding horses and seeing my friends and even going on dates with my boyfriend, who had stuck around no matter how sick I have gotten for over two years. For the longest time I thought I was alone. My dad and grandma both have IBS but RARELY have attacks so they do not understand how I can have an attack every day. It makes me feel so much better now that I know I'm not the only one! And I have finally found some friends that understand and help me when I need support.
My mission now is to get the word out there. I am so tired of teachers treating children like they do not matter. I am hoping that I can at least start a chain reaction and change how teachers perceive IBS. I don't want another child to go through what I went through in school. I encourage everyone to do the same. Maybe if we start talking about it more and demand better treatment in school and all work environments, we won't be as worried about having an episode at school or at work or having to miss days here and there. I am only 20 years old but have experienced a great deal in these 11 years. Please do not hesitate to ask questions, tell stories and troubles, or any comments or advice!