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Posted 10/20/2010 6:05 PM (GMT 0)

eternal optimast:

when you are in remission, you should feel like you were pre uc.  I have had uc for 19 years, and I have many many years feeling completley normal.

that urgency is the last symptom for many of us to finally go away.  It sounds like you are practically in remission now, but there may be some slight inflammation somewhere in your colon.  from what i understand, if you have any inflammation in your colon and then stool hits it, then, boom, that urgency feeling.

Posted 10/20/2010 11:35 PM (GMT 0)
@eternal optimist

one thing i've learned is that those of us who still have a significant other are lucky. so many people on here are mentioning losing their boyfriends and girlfriends because of being sick, and they just make me want to call my boyfriend and shower him with complements. he's even getting his emt license so he can do IVs and stuff for me at home, without having to go to the local community hospital (which sucks btw). i've never lost the urges. every time i have to pass gas, i worry that it's not really gas. it comes on really fast too. i'm supposedly in remission but i don't believe a word of it because every time they've checked, i've been on some kind of steroid.
Posted 10/21/2010 12:04 AM (GMT 0)
rpgdancer:

I was really lucky in that regard. My fiance was with me before being diagnosed and stuck with me. He's great in many, many regards. He makes me foods I can eat and helps out a lot. The only thing I don't like about him in regards to my illness is he thinks if I ever get surgery I'm 'giving up'.
Posted 10/21/2010 4:32 AM (GMT 0)
Struggling College Student-- I neglected to mention above that you can find a lot of practical info for UCers online in Salix Pharmaceuticals Patient Newsletter (archive), where the top IBD gastroenterologists in the U.S. have been contributing articles since 2003. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 10/21/2010 12:51 PM (GMT 0)
Hi-E.O i'm going thru a bit of a rough stretch for the last 2 years.I've had U.C since 1985,was in the  hospital for 28 days in 85, there are small flares and there are the flares where you want to just die-at 26 yo death would of been more comfy.I was bleeding badly.Since 85 i've been lucky,some MINOR blood sometimes-Rowasa always got rid of the blood.Well Oct-2008 i got Pnuemonia badly-was in the hospital 7 days-also got c-diff,was put on mega doses of anti-biotics.Well slowly but surely i was in a pretty bad flare,not as bad as 1985 but bad.Spring of 2009 started working again,on my way to work on 3 different days i couldn't hold it in any longer[never had happened to me before-not fun].This is where going out of the house and urges were priority #1.Where i'm at know is i don't overeat,i wake up a little early in the morn to make sure #2 is all out.Overall i might have a little or a lot of anxiety depending on the length i'm driving-especially in the morn.Overall if i eat like a human[i'm 6'5 usually 225-230-now at 205] and not the overeater that i usually was than i'm O.K. The urge can trigger the anxiety even if it's a slight urge,the anxiety sucks.If i think the urge is worth pulling over and using a bathroom[thank you burger king and mcdonalds]than i will.I've seen alot of suggestions in regards to eating 4 or 5 small meals a day-great idea.For me if i'm working i don't eat breakfast,i'll eat a snack[cookies-drink etc] after i start working.Lunch is usually half a sandwich,dinner i eat much lighter than i used to.This is what works for me-GOOD LUCK
Posted 10/21/2010 1:32 PM (GMT 0)
I'm 31 and I was diagnosed when I was 29 I started college last semester and it is really hard. I have trouble paying attention because I'm exhausted and I can't do homework until my kids are asleep(it's easier to consintrate) they go to bed at about 8:30-9:00. Also, on the days I have classes I don't eat. It sucks so I'm starving. I know you can leave to go to the bathroom but then I miss stuff.  I also don't want to have an accident on the way to school.  It is really hard. When we have tests I don't want to have to leave during a test to go to the bathroom she will think I'm cheating or something. I know I could tell her I have a medical condition but I don't want to it is embarrassing. I don't know what I will do when I'm in clinics. cry Know your not alone and this forum has helped me alot. Hang in there and good luck.
Posted 10/21/2010 3:18 PM (GMT 0)
Wow! This thread continues to grow, and it is so great :) My main symptom right now (and it seems to be a constant one) is a feeling of exhaustion and constantly feeling like I can't focus. I don't sleep well, and I have a lot of gas. I thankfully seem to be slowing down, and usually only have a BM once or twice a day...but then there are days where I have some constipation issues. Can't win I guess! I have seen a few other people comment on the exhaustion, and difficulty focusing. Is that just constant as part of the disease, or will I regain some energy when I go into remission? Also, does anyone else have difficulty sleeping?
Posted 10/21/2010 4:52 PM (GMT 0)
earlier this year when i joined the crohns and colitis foundation i got a "i can't wait card'.It states- The bearer of this card has a medical condition that requires him/her to use the bathrom facilities urgently.Thanks for your help and understanding-Crohns&Colitis foundation of America[i'm from New York[long island].My daughter is in 10th grade and there is a boy in her grade that has colitis and he sits next to the door in case he has to go,so people will help you-having the card can help to explain the help we need.Once your start going into remission your intestines start absorbing all the goodies[nutrients etc] that we need to keep us going.My dr. explained that the small intestines absorb most of the nutrients[or gooodies] that get spread throughout our body and the large intestine or colon gets whatever is left.I also take acidopolous which is a wafer tablet that helps to keep our digestive system healthy and i have a probiotic drink throughout the day.Just last week i started to get the big D[no blood] and just yesterday it started getting better,Tuesday i was wiped out-today i feel better and the stool is getting back to normal.Get the I CAN'T WAIT card-it helps,anything that will give me comfort- i have to have it.GOOD LUCK
Posted 10/21/2010 5:09 PM (GMT 0)

girlzilla:

you are not going to always feel this way!!! when you go in remission, your energy should pick up.  Think of it this way, your colon is inflamed, your body has to work  hard to heal.  So listen to your body, and when you are tired, rest.  I am a firm believer in the healing power of sleep.  when you are sleeping your body does so much to heal and renew itself.  Dont underestimate a good nights rest.

I am sorry to hear you are not sleeping well at night.  Do you nap alot during the day? Could this be affecting your nights sleep?   I think if you could get consistant good nights sleep it will go a long way to helping the exhaustion. 

Posted 10/21/2010 8:38 PM (GMT 0)
I was in your shoes. I was diagnosed at 20 in college. It was frustrating when people couldnt understand why I couldn't just go out drinking until 3 or 4 am!!! I got a lot of questions about why I was such a "homebody" or didn't like to have fun, and its not like you can tell a 20 year old peer what's going on! I felt out of control, helpless, sad, hopeless and pretty lame all around.

My roomates were incredibly supportive. They always stuck up for me, left a social event with me if I needed to leave, never gave me a hard time for not wanting or feeling up to doing everything everyone else could or would do. It helps to have an ally who you can just look at if you need to leave somewhere or have an emergency.

I'm 27 now. This disease has changed very little for me in the last 7 years. Now, I go out and do stuff DESPITE how I'm feeling. If I'm not 100%, I go out and give whatever % of myself I can give that day. Sometimes its 90%, sometimes its 10%. If its an hour, its an hour. If its a fun night out with a big group of people for 6 hours bouncing around, I would at least like to say that I TRIED part of the evening. For me, I don't really feel that much better curled up in a ball or out walking around - might as well have some social interaction! For me, being social helps to take my mind off (Mild) discomfort and always cheers me up. The worst thing I did for myself in those early days was act like I couldn't do most things, and withdraw. Know your limits, but at least try. TRY to have a normal life. Treat yourself as well as you can treat yourself, and every day will be different. As soon as you start to tell yourself you're too sick to do certain things (outside of heavy drinking, horrible eating, other desctructive college like behavior), YOU"RE RIGHT!

I also got a really great, young, female doctor who LISTENED to me. Who made me feel empowered, that I was in control of 1) what, when and how I ate 2) when and how I exercised 3) figuring out what made me feel better in general, outside of the disease (having a clean house, being social regularly if only for a short time, laughing, pets, walking on the beach.) 4) Resting as much as made me feel good (resting TOO MUCH IS DEPRESSING!) 5) taking my meds 6) exploring supplements and other "Triggers" like birth control pills. Everything else is out of your control, but do what you can to make yourself feel better, and you won't feel hopeless.

I'm 27 now. My disease is a little worse now than it was in my early 20's. I am in love with an amazing man, I moved out of state to california, have been here for the last two years. I go hiking, I do a lot of yoga. We go on trips with HOUSEFULLS of people, limited bathrooms, I have dinner parties, we have houseguests all the time with just one bathroom, I work full time, travel on planes, go skiiing (not camping yet though! Haha!) Life is what you make it. You take it as it comes. I'm young. I have this disease. I have gone out dancing hours after taking a Rowasa enema fearing the worst, and have had it be totally fine. I've also SHARTED blood on a ski slope with no bathroom in sight for hours. Life's unpredictable!! Don't stop living.
Posted 10/21/2010 8:48 PM (GMT 0)
My main problem is extreme fatigue and not focusing at all. My pooping isn't an issue that much either (since the remicade) I complain to my doctor all the time I can't stand the fatigue. I will study something and can't focus or remember what I study. Very annoying when in school.
Posted 10/22/2010 2:14 AM (GMT 0)

3timechamp said...
earlier this year when i joined the crohns and colitis foundation i got a "i can't wait card'.It states- The bearer of this card has a medical condition that requires him/her to use the bathrom facilities urgently.Thanks for your help and understanding-Crohns&Colitis foundation of America[i'm from New York[long island].My daughter is in 10th grade and there is a boy in her grade that has colitis and he sits next to the door in case he has to go,so people will help you-having the card can help to explain the help we need.Once your start going into remission your intestines start absorbing all the goodies[nutrients etc] that we need to keep us going.My dr. explained that the small intestines absorb most of the nutrients[or gooodies] that get spread throughout our body and the large intestine or colon gets whatever is left.I also take acidopolous which is a wafer tablet that helps to keep our digestive system healthy and i have a probiotic drink throughout the day.Just last week i started to get the big D[no blood] and just yesterday it started getting better,Tuesday i was wiped out-today i feel better and the stool is getting back to normal.Get the I CAN'T WAIT card-it helps,anything that will give me comfort- i have to have it.GOOD LUCK

my mom won't let me use my card... although there was one day that i was making a 6 hour drive with massive runs, and i did carry it in case i got stopped for speeding... which i didn't, but still. mom says by the time they finish reading the card, they could already have gone.
Posted 10/22/2010 2:25 AM (GMT 0)
If you are that wiped out, has your Dr. mentioned anything about supplements, extra vitamins? Your body is healing, is damaged,  and requires a lot of nutrients your suffering colon may not be effectively soaking up...what is your diet like? Could you be anemic from bleeding? Are you having absorption problems? are you eating enough calories?

All important to discuss with your doctor, and I find, personally, that keeping a food journal really helped me figure out what made me feel good. It is so different for everyone with UC. I need a lot of fresh Fruit and Veg to feel good, some people can't tolerate those types of foods at all. Its basically studying your own body!! Its trial and error. Good luck to you in your healing........

 

Posted 10/22/2010 10:12 PM (GMT 0)
WIMOM-You may be anemic or need a B12 shot. Also this may sound harsh, but: suck it up and let the professor know you have a medical condition. What's more embarrassing: doing that and a) having an accident cause they won't let you leave during an exam or b) them failing you because you got worse and couldn't complete the work. In my experience most professors are incredibly helpful and understanding about these things.

MissStacey-I'm in grad students and a lot of my classmates get weirded out when I don't want to drink. I usually tell them something about blah blah blah meds (which is generally true).

Girlzilla-You will def get the energy back when you hit remission, I promise =)
Posted 10/23/2010 12:22 AM (GMT 0)
I am a college student as well. I am in my last year. In my 2nd semester i was in the hospital for 2 days. Currently I am on 71/2 mg of prednisone and I uped it back to ten mg. It was right around the midterms. I find that my UC is most active the more stressed related, rather then diet related..however when I have bowel issues, some foods bother me. I am also on 8 pills a day of Salofalk.

So far (knock on wood) I am been pretty good with my UC during school. I am only on prednisone due to having an infection and a bad reaction to a another UC medication, and it threw me in a 4 month flare, duing the summer. I have been on prednisone for about 2 months.  I try to eat alot of protein, drink LOTs of water, no processed foods, drink lactose free milk to name a few.  Although sometimes I have been known to love the comfort food.  I also faithfully take a probotic, omega 3s/fish oil, (vitamin C, high 1000 mg dosage) I also try to refrain from sugar, and glucose/fruitose, spicy foods and foods that cause gas/bloating, hard to digust.

I find that i get more colds and they last longer. I try not to take antiboitics, for they always put me into a flare. I also find that I get more tired, then most people, and can sleep for hours and hours some days.  I try to get alot of sleep each night. I also try to go to bed the same time everynight. You body will get into a routine and you end up sleep well.

 

Post Edited (Noah77) : 10/23/2010 6:01:02 AM (GMT-6)

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