New and scared...

Well, I'm new to all of this...I'm not exactly diagnosed yet, but I know I have UC. My identical twin sister got diagnosed 5 years ago when she was 16, and now about a month ago I've started having blood and mucus every time i go to the bathroom...I'm totally pissed off, I didn't think it would happen to me, but the doctor said i had a high percentage of getting UC and i probably have it. I go in about 2 weeks to get a scope done, which i'm terrified about! Even though my twin has UC, you think I would feel like i have a support system, but I really feel alone. She's been in remission for a couple years now, has been on meds forever, and is doing much better. I think she has forgotten about how much pain it caused her. She's telling me I'm just freeking out and it's all in my head. My symptoms have recently gotten worse. I'm always in pain, I'm nauseous all the time, and i am constantly bloated. It seems like no one understands how painful this is. I'm on the toliet 8+ times a day and can't remember a time when it was ever normal. I'm constantly being told that I'm overreacting and that I just need to relax. I don't think my sister ever got sick to her stomach with UC, so I'm sure she will never understand the constant pain I'm in. I feel as if I cant eat anything because it just goes right through me. I've been afraid to go out recently for fear of that pain that can strike at any moment. I haven't really told any of my friends and I honestly don't think they will understand. In high school when my sister was diagnosed, everyone gave her a hard time. She was also put on prednisone and gained about 40 pounds of water weight, something I really hope I dont have to do, as vain as that sounds. I've always been an active person, constantly working out, I'm a college cheerleader, ran cross country and track and cheered in high school, and I now coach a varsity high school cheerleading team. Now when I go to the gym, I get terrible cramps and pain. I don't really know if it's helping me or hurting me. Hopefully this scope goes well and I can some help immediately. I just want to live a normal life and have the people who are close to me understand how embarrassing, painful, and scary this is for me. If anyone can give me some insight on all this and some advice for this constant pain and bloating, let me know! Also, I'm only 21 and I feel like I'm the only young person out there who has this, even though I've heard statistically UC effects most people before the age of 25...so to any young people out there going through this let me know, i feel totally alone and out of place......Thanks!!!!!!!!!!!!!!!!!!!!!!!!!

Post Edited (ImAud) : 7/22/2008 8:00:44 AM (GMT-6)

ImAud,

You are definitely not alone, although I certainly understand that feeling. I am 23 and was diagnosed with UC when I was 15. It was the most miserable, embarassing, traumatizing thing for me and I think it had a large hand in ruining my high school years. It's really difficult when the people you're close to don't or won't understand the disease... My boyfriend is great about it most of the time but he hates going to appointments and procedures and whenever I try to talk about my UC he changes the subject, which is very frustrating. My parents will listen to me for hours but still think that it's because I eat McDonald's from time to time and if I had a perfect diet I wouldn't have UC. Trust me, you'll hear a million different things, people will try to say it's your fault (which it is NOT!!!), people will try to make it out to be nothing and that it's in your head (as you've found out) and people will just be downright rude. The most important thing is to really research and understand it for yourself and just know that people can be very ignorant, you just need to ignore them.

This is a great website with great people who have been through it all, and you'll almost always find someone who has or is experiencing the same things as you, so it's nice to come here and vent or just read others' stories and advice. I don't know what I'd do without this place.

ImAud,

I was dx'd when I was 24 and was losing toilet bowls full of blood, and they said I had to wait 3 mos to see the GI, I was like I doubt I will be alive by then and they got me in the next day after explaining all the blood loss. They put me on sulfasalazine and rowasa enema's and within a couple of weeks I was doing much, much better! I would call your Doc and demand to get in there and get on some meds immediately, you have to be your own advocate.

After that for 7 years I was fine as long as I took my meds faithfully, when I did not, I would flare up again. I had a lot of denial. I went into a horrible flare this past Oct which was totally different from my first flare up, cramping, going 25+ times a day, not being able to hold a bm in. I was a zombie and could barely leave my house to go to work. I am in pred induced remission right now, and hope I can taper it.

During my horrible flare my sister at the begining was not really there for me, she was 'too busy'. I basically had a talk w/her and explained that I know you are busy and I know you don't know what it's like (now she has bowel problems) and said to her that a 5 minute phone call once a week to ask how I am doing would fit into her schedule and make me feel better. I had to tell her what I needed her to do and sometimes I need to tell my husband the same thing. They cannot give us the empathy we need, unless someone has gone through the exact same thing they dont know what you are going through and also, I played down my first flare, I don't really remember it too much, not like I remember the one I had in Oct. btw, I have always been there for my sister and it really did hurt me that in the begining she was not there for me, but we worked it all out and now she is very supportive.

Hi ImAud!
I can totally relate to your frustration. Anyone who doesn't have the disease has a really hard time understanding it or even tolerating talking about it. My husband is very supportive about it but will get totally frustrated at times, because there are no clear answers and there's nothing he can do to help. He's tried to research it online and gets as annoyed as I do about all the conflicting information out there. So try to understand how frustrated your boyfriend might be about not being able to help you. This has been very difficult for my family to understand, but they tell me how upset and concerned they are for me. I can't even tell them what it is I need from them for support, so I know they struggle to be a comfort to me. Hang in there and remember that we're all here for you and know what you're going through. Keep in touch!

Katie

Just signed on, so very new to the blog, but not to UC. As a mom of an 18yr old guy, I was wondering if any of you have had the surgery or if it is even an option for you. We've been struggling with hospital stays mainly for dehydration and/or allergic reactions to meds. Now the surgery is scheduled for mid August and I am second guessing everything. My son has been on Remicade for a year and has really followed a strict diet. Right now he just wants a life. He is a volunteer fire fighter and even going to EMT summer classes. I am confident with our out of town dr that we travel to, but again as a mom am wondering if we are doing enough. Your thoughts are appreciated.

UC 5/2007
Remicade every 6 weeks
Llialda 2x
prednisone coming down from 30mg
3 colonosc in the past year w/ biopsy--no change

ImAud, How about starting some pro biotics. You might see some relief from them before you have your scope done. You have definitely found a great forum, everyone here is understanding of what you are going through. What a great support system we have here. Good Luck!!

Hi ImAud, welcome to HealingWell. I know you will find lots of support here. It is a shame that even your sister can't relate right now. It just goes to show that when the meds work, they really work! My daughter was diagnosed at 15. Luckily she has some friends who truly care, ask lots of questions, and are always checking in with her. Then she has alot of other friends who care, ask how she is, but don't quite "get it". My daughter has never really hidden this disease. She is pretty upfront with anybody who asks about it.

muddkingsmom--welcome to you too! I know you asked about surgery. My daughter just had surgery (almost 3 weeks ago). I don't want to hijack this thread but you can start a new one and I (along with many others) will let you know how we have approached UC.

Hello ImAud!
I have had O.C. fore many years. I believe that the worse time of the disease is in the first couple of years, because you don't really know what to suspect, and I'm not saying it will be easy to adjust, but you will adapt different ways of handling the situation. I think the best thing is to be open with your family and friend. Don't be afraid to tell them about your good and bad day. I even make jokes about it some times which helps break up the seriousness of it. If you make it all negative you will always be looked at as being a sick person to people that don't understand the disease. Good Luck and remember your not along. ;) Paul
My colitis is doing fairly well right know the Doc. got me on a drug called
LIADA (1.2 gm twice a day)
also still taking IMURAN (100 mi. a day)

my first GI put me on meds after doing a flex sigmoidoscopy in his office, less invasive than a colonoscopy but not as thorough. I think he did that b/c I was in between insurance at the time (just started a new job) and needed meds immediately. Though I don't see why they could not give you meds now based on your symptoms, I would call and ask, it would probably help them do the scope better anyway. Don't be afraid to push your Doc's!!!