Uc And Lactose-intolerance

My entire life I have been Lactose-intolerant. When I was 9, it was so bad that I had my first colonoscopy, awake, and fully aware of the situation. They found I had UC, and it has been on my profile since, but nothing was ever done about it.  Shortly after, I went through a very long stage of remission, all the way to my sophomore year in high school. I was going to the bathroom over 30 times a day, I had no friends because I didn't want to visit with them, I was too weak and upset to even speak, and because my mom worked until 4 PM, and we live on the near outskirts of what is the bus route available for high schoolers, I had to walk home, which took about an hour, with constant stomach pain and occasional accidents. I missed roughly 50 days of school that year and held a solid C, although I had so many plans for the future. I had visited the doctor numerous times, the same one from when I was 9, and the only advice she ever gave me was that I need to cut down on my lactose-intake. I was never questioned about my other symptoms, as if it wasn't a big deal and that feeling this way is normal. It was only until my step dad joined the military and we were able to get such incredible health insurance and switch doctors that anything was ever done about it. My mom took me to her for a second opinion. Almost immediately she had it narrowed down to either Chrons or Colitis. I was so happy that there may be a legitimate answer. I never knew the severity of a disease like this and that so many people suffer through it as I did. I thought that I was some freak of nature and that what I was feeling had to be the worst of all. I was referred to a gastroenterologist and as usual, he took stool and blood samples. Because the quality of the last hospital I was in, my file was deemed "lost" for the longest time and only until it was found was he able to decide how to start curing me of whatever it was I might have, or to even find out. As I waited and waited, I had the worst flare up thus far, and missed a straight week of school. At that time, my step dad had just graduated from basic training and was waiting deployment. Because he was home, I wasn't allowed to miss school anymore. If I tried to call home with complications, I would get yelled at for neither of my parents thought I could really be experiencing something so horrible. They thought I only pooped a lot, and knew nothing of the pain, weakness and emotional problems that hitched a ride as well (me, being a "tough girl," didn't really discuss these sort of things.) My doctor finally received the results from my last colonoscopy, and saw that they showed positive for colitis. He wanted to see if I had gotten worse, just how worse, and if it was really even colitis anymore, so that meant another colonoscopy. Because I had been awake for my last one, I was prepared for the same experience. Luckily, only the prep proved difficult. The colonoscopy was scheduled for the second day of my junior year, and I ended up missing the first week of school, which, as a teen, I was pretty excited for that. Everything went better than expected, I got to see exactly what was going on inside me and I was really hopeful that they'd help me, and I would never again have to feel the way I did that year. I handed pamphlets out to all of my teachers to make them aware of my disease, and really tried to make sure they knew that when I have to leave, I'm leaving. Other than testing medications, stool samples, blood tests, anemia, steroids, enemas and vitamins, that pretty much brings us up to date. I take three Asacol in the morning, along with iron, calcium, and a one-a-day lactaid tablet. At night, I take two more Asacol, Prilosec, another calcium and another iron if needed. So far, I've never reached anything that seemed like remission. Yes, it feels better than before, but the restroom is still the only thing on my mind. I don't feel healthy yet. I still have flare ups. I still don't know what an appetite feels like. I don't know what it feels like to not be tired. I still don't have many friends. I still don't go out anywhere. I've never been to a school dance. I used to be a very active swimmer, with beautiful dark skin and perfect hair and teeth. Now, my skin is as pale as paper, my hair is extremely thin and coarse, and I have three teeth that desperately need to be pulled, but I feel too young to have a mouth full of false teeth. I haven't dated since I was 15. 17, almost 18 now with prom coming up and everyone I used to be friends with growing up around me, you can imagine how being alone in this battle must feel. I'm sure you all are very aware of that and have experienced it first hand. I'm not getting much better, and although my case isn't nearly as bad as the cases I've read about online, I'm a very intelligent girl and I have very big plans. My entire life, I've steered clear of drugs, alcohol, cursing and any sort of sexual interactions so that I may grow up to be something I'm proud of. I was never even pressured into these "good choices" by my parents, either, but rather, figured it out by myself. I have big plans and many interests that I could excel in. I plan on doing a two year IT program and moving to Ithaca, New York to study anthropology and psychology where a part of their campus is reserved for those you speak, want to teach or want to speak German - my one love. But with this disease, I'm afraid of having another flare up, or that I'll leave class too often, or that I will just completely miss classes. I'm someone who wants to know everything ABOUT everything and everyone (hence anthropology). Obtaining that sort of education just doesn't seem possible and I've been looking into getting a J-Pouch. I don't know if I deserve one, knowing that people have pushed themselves through much more with the same disease, and worse symptoms.. But it's better safe than sorry, right? Not only that, but I will have to deal with all the things my doctor wants to try before even allowing me to get the surgery, and I still deal with criticism from my parents. Every time I bring up difficulties I'm having with my mom or that I'm seriously considering surgery, my mom, very annoyed, will just brush it off with an "okay, okay Haley. We'll talk to your doctor." I don't even know when I'll be able to see my doctor, I've missed so many appointments. I want parents who support me and try to help, friends that understand and are welcoming to someone with a chronic illness, and some sort of closer, not necessarily intimate, relationship, in which I can share everything with the other person, and not only will they understand, but also try to help. Is that too much to ask? Not to be sarcastic, but I'm not sure if I'm being needy. It's 8:50 PM, Thursday, April 26th, 2012. I've been to the bathroom probably 10 times today, and I haven't missed medication for about two weeks now, and planted on the porcelain throne as we speak. This is my first journal entry of many. 
Schmusebarchen Schmusebarchen
18-21, F
1 Response Apr 26, 2012

I have uc aswell and I know how painfull this can be. It's pretty sad that your parents are just not supportive. Try getting some casava flour and mixing 3tbs of that with 1/2 cup ice tea and 1/2cup aloe vera juice and drink. Best if taken warm. Works 4 me. Best of luck