UC project

My sister was diagnosed when she was 8 with UC (she's 18 now), we have tried many meds.... not so familiar with all of them but We are both students at our local community college... I am doing a developmental psych project on UC and the affects on the mind as well as the body, anybody with comments on how you make it day to day, flares or memories from when you were first diagnosed would help me so much... I just want to raise awareness of this disease... i know from watching her that this horrible disease is a long rocky road to travel... (I logged her on here as well) She has gotten to the point that she doesnt want to take any meds at all!

Thanks for the support, and what you do on here is wonderful - Timberly

I just gave your post a title, so it would get more traffic.  Also, for the mods, Peter has ok'd this.  --fruitgirl

Post Edited By Moderator (fruitgirl) : 2/4/2010 12:04:25 PM (GMT-7)

I started having symptoms like a week after my 15th birthday... I was slightly scared to begin with. Then as it got worse and worse I just didn't seem to care. I just dealt with it somehow. Then the only time I felt bad again after that was when I woke up in the hospital after my scope and I told the nurse I had to use the bathroom, they gave me a bedpan but I wouldn't go with everyone watching. So I said, "I have to go!" and tried to get up, she pushed me down, I shoved her and ran into the bathroom... made it in but not to the potty and bled all over the floor. Then I was just embarrased and wouldn't let anyone in til I cleaned up. Then what hurt was they stuck me in a wheelchair and made me sit on a pad. Other than that though I think I dealt with it really well.

As for effects on the body, during my first flare I lost about 20 pounds in about a week, so they rushed my scope. I have arthritis. And I can't take birth control pills. I think my UC is hormone related (and immune, but I think another trigger thing is hormones) since I can't take those pills or use the shot and with the age it started at I think it's plausible. Any more questions, I'd be happy to answer.

How do you guys deal with it mentally? My sister wont talk about it becuase she says "nothing is wrong with me, i dont have it"... how did you come to accept it? When in a flare do you have to wake up and mentally get ready for whats coming? (any pep talks) ... We are at a desparate point with her... as i said she wont take her meds she bleeds for weeks on end. And instead of the weight loss she has gained alot of weight (the prednisone for 3 years will do that to you) does that emotionally scar you? 

Thanks for all of your posts!

Um, maybe she needs to see a therapist or get on some meds or something. I think her way of handling it is definitely not healthy, sorry to say! So I hope you guys can work things out. Or maybe she needs surgery, if she could contemplate that... at least she wouldn't have UC anymore so you wouldn't have to worry so much.

When I was flaring, I didn't really think about it. I just got up, hoped I'd make it through a long bumpy bus ride, went to school, went poop multiple times per class, and if I really needed to go home, called home. I never worried much or got scared, just lived with it. The only thing that really made me anxious was trying to hold it until the girls in the bathroom went away! I didn't really have to prepare myself. I just knew I had to do it, and I did my best. After my diagnosis I told my teachers what I had, that I might have to leave for the bathroom and took my meds religiously. Same time every day, down to the minute. I didn't need a whole lot of attention from family, and they worked a lot so I mostly took care of myself. Of course they took care of me when they could, but I wasn't desperate for attention or anything.

Now when I have issues I get slightly more worried, but not a whole lot because I have someone who loves me (aside from family). I pretty much have a gameplan for if anything happens. I have my medical card, just in case, even though I've been in remission. Better to get it now! I just need to find a good doctor, so if anything does happen I have someone I can trust.

I don't feel I'm scarred mentally at all. Maybe affected, but not really in a bad way. I try to be more conscious of my general health.

Againstodds: She totally has my full support shes my best friend i admire her so much!
my parents have pretty much revolved their lives around her and this disease... she is a very needy personality, before the symptoms started, she was halirious, now the sense of humor only comes out once in a while, it definately made her grow up quicker than usual... this is what i dont understand.... kaitlyn was diagnosed 2 months after our father walked into back surgery and came out paralyzed from the waist down DUKE university medical center saved her life..... i understand stress is a big trigger for a flare.... i wish so much that we could have a concrete cause i think thats what frustrates her/us the most....
i turn my project in on wednesday.... so i dont know how ive done yet *fingers crossed*
:)

My diagnosis process was horrible... it took two years for anyone to figure out what was wrong with me. My first flare was when I was a sophomore in college, the doctor at my school's health center told me it was from stress and eating spicy foods. She almost refused to give me a GI referral. After that I was mistakenly diagnosed with c. diff and given antibiotics...the flare cleared up so I didn't think anything of it at the time.

Then I spent the next two years with milder flares, getting diagnosises of gastroenteritis. Doctors wouldn't listen when I told them my symptoms didn't match my diagnosis. The worst was the summer right around my 21st birthday: I was in a lot of pain while going to the bathroom and it took me all morning and I didn't trust the school health centers, so I decided to go the ER at one of the hosptials. I was sent to be triaged by a pediatric ER nurse, and she was absolutely horrible to me. She told me I had no business being there for a stomachache, that I wasn't sick all the time as I was claiming, and that the hopsital had plenty of kids dying of cancer if I wanted to see what a real illness looked like. I don't know how long she was talking to me, but it felt like forever...she just kept telling me things that were really rude and disrespectful. She told me my stomach pains were my period (as if I didn't know what my periods were like after 10 years of having them), and asking me what I wanted a diagnosis for. She barely stopped short of accusing me of Munchausen's Syndrome.

I was finally diagnosed my last semester senior year of my undergrad. I was in a bad flare again and was sent to another GI, who scoped me, diagnosed me, and put me on asacol and pred. It was kind of a relief, but at the same time incredibly depressing.

As for coping...mostly I just try to work around my disease if I'm flaring. Usually this means getting up extra early to clean out my bowels in the morning and sticking to a low residue diet when flaring. I kind of hate it, because it limits where I can go to eat with friends and I have to spend ages scrutinizing the menu. I also feel really weird asking for substitutions (like seeing if I can get spinach instead of french fries with a panini, or getting my framburger without corn) and I hate seeming like a picky *****.

Also, I get really nervous about my weight, because in a flare I'll lose too much from flaring then gain too much from pred. So I'm kind of afraid of my weight not matter what...that next time I start flaring, I'll lose too much and become emaciated, or gain too much on pred and end up fat.

yay!