Newly Diagnosed.... looking for some answers/help

Hi All,
I've been diagnosed with a "mild mild mild" case of ulcerative colitis (although believe me, it doesn't feel "mild") just last week and am just looking for some answers and wondering how other people have dealt with the disease.

I'm a 21 year-old college student (was diagnosed 3 days before I turned 21, and was told not to drink alcohol on top of it...) just trying to get through another year at college with an unfamiliar disease and hoping others could share their experiences with me. I was totally shocked to learn I had ulcerative colitis, I reluctantly had a colonoscopy scheduled earlier this summer after having some abdominal distress and other symptoms expecting to rule out anything, however, to my shock they found some swelling in several parts of my colon. They immediately put me on Asacol HD (4 a day) hoping to get the inflammation does before I headed back to college. After 6 days with no change (if anything worsening) and time running out before I headed back to school my GI doctor put me on prednisone which I've been on for the past 3/4 days and to be honest am a little afraid\scared to be on the drug after reading some posts on here and hearing other stories from friends who have experiences with the drug. I'm on 40mg per day for a week, tapering over the course of 2 months. How soon do people respond to this drug? It's been 3-4 days and I haven't felt much of anything. In addition my doctor upped my Asacol HD to 6 pills a day. I'm just concerned that the drugs aren't going to do anything.

I guess I'm just in the middle of a flare up says my doctor, but I'm interested in hearing how long others' flares have lasted - and how do you guys cope with the symptoms? As a college student I find it hard to make it to class and not be interrupted by the 5-6 bouts of diarrhea I have a day. What is sometimes even worse for me is that it's always on my mind, do you know what I mean? Even if I feel fine, my mind is always preoccupied with thoughts about “What ifs” and constant worries that I’ll have an attack and need to rush out of the classroom to the nearest restroom and what other people will think. Needless to say it’s getting in the way of concentrating on anything academic related. Does stress increase the likelihood of the onset UC symptoms for anyone? I’m finding new classes with new people is definitely not helping my case.

On top of that, I’m still in shock of learning the news that I have an incurable disease. I’ve lived an incredibly healthy life up to this point, eating healthily, never being sick, always feeling 100% and then to have this layed upon me was a heavy burden. I don’t want to say I’m depressed, but I’m kind of lost, I’ve lost passion for things I once enjoyed, I find myself staying in instead of going out with friends in fear that I’ll have an accident or will get really bad stomach cramps, etc. I already mentioned that I just turned 21 a few days ago which was unfortunately not as spectacular as I had once planned – I found myself staying in, on the toilet instead of going out with friends and having a great time…

So I guess I’m just looking for how others have coped with UC, your experiences with Asacol, prednisone, etc. My doc also said I could try a suppository/enema, but am not too keen on that idea… However if it works great I’m willing to try just about anything at this point. Is there anything I should ask my doctor? I know there are some pretty extreme diets out there, when should I take that step? How long does remission last for on average and how long does it take you to get into remission? I’m finding it hard to lead a normal life now and promised myself I wouldn’t let the disease take over my life, but it’s getting harder and harder each day that my symptoms aren’t subsiding. How do you all get it off of your mind, I find I’m constantly thinking about it.
Sorry this was so long, but thanks in advance!

I was recently diagnosed as well I am 19 and have no idea what I'm suppose to do I have been on predisone for 2 months (40 mg- a day) and then tapered down to 20mg a day) until I ran out and haven't gotten it refilled but starting to think that I should also on ascol (6/a day) iron pills (4/a day) and azasan 100mg a day. But I feel so weird I dont know what my body is doing my next doctors appoitment is in a month and I don't know if my body is doing crazy things or if I'm just worriesd for no reason. I don't know if I have or am going through remission I don't know what that feels like and don't know how to explain how my body feels. I am so embarrassed to go to the bathroom in public places and whe I do go it usually last about 10 minutes before I got diagnosed I was going to the bathroom 11x a day and it was mostly blood. Now I don't have the abdominal pains but my butt feels funny like it doesn't hurt but feel a pulseation I guess is the easiest to elxplain and when I have to go its like I try and go but it doesn't want to. I don't know what the mucusy stuff is but when I go pee that stuff comes out with my pee just out of my butt. When I have a bm its like my nose is bleeding its like it drips i m scared how the rest of my life is gonna be. Am I ever gonna be able to have kids are my bathroom experiences always gonna be like this? Any answers would be great.

Thanks!

Hi,

I'm new to UC (and this forum) too. I just had to reply because my heart goes out to you. I spent 7 years or so in University and even though I didn't have UC at the time I can sympathize with with what you are going through. Are you in a residence with a shared bathroom? Ugh.

My advice is to do the enemas if at all possible. I put it off forever because my GI said that if it was him, he wouldn't bother with them. So I never took them seriously. But after lurking around here for a while I came to realize how much they can help so I've been doing them religously for 3 weeks and I am totally used to it now and I think they are helping. At least I know I am doing everything possible to get better which feels really good. And for me, I find that it is really important to never miss a dose of asacol. If I do I suffer immediately the next day.

I'm sure the with the asacol and the prednisone you will feel better soon so just hang in there for a little bit.

Oh - and take whatever help you can get. Like extensions or speical accomodations for exams or whatever. What you are going through is rough emotionally and physically so ask for help.

Anyway, that's my advice, not that I'm an expert. Just wish I could help you out.

Thanks to you who have responded,
songlady - I'll definitely check out that article and am more seriously considering rectal meds. I just started a probiotic this morning so we'll see how that goes.

redfern - Thanks for the words of encouragement, it does kind of suck living in a residence with shared bathrooms, but luckily I've told my roommates and they're all fine with it and understand. And I just reached out to my university's special needs department which seems to be doing all they can to allow me to take all sorts of special precautions, etc.

Vitor - I'm glad to hear you were in remission for 3+ years, I'm really hoping to achieve that and am glad to hear it's attainable. Good luck with your current flare.

I know no one wants to hear this but try the SCD diet. there is alot of people who have been doing it. Im doing raw foods and have not been perfect but i have not had any urgency since doing it. my bms are formed. I cant work with the urgency. im a store manager and sometimes due to limited staffing i have to close on my own. if i had urgecey i would have to close the store and be in the loo. at the moment there is no urgecy. i was afraid of extreme diets but for me i said what the hell ill give it ago. the diet is not going to kill me. I hate this illness and i do miss my old favorite foods but i hate the illness so much that i would rather eat diffently than everyone else than being ill. well just to tell you. i wish someone told me in the begining when my symptoms were mild. why dont doctors tell of the scd diet. i don't think its that extreme

I was diagnosed at 15 and somehow kept going to school through it all (with the flu too lol), don't ask me how I did it. This conflicts with Hellokitty, but I ate pasta, potatoes, rice, that sort of thing while flaring. Also I would add a few supplements in addition to the probiotic, most importantly turmeric, I find it does help me a bit. I take 500mg three times a day but you can take, I believe, up to 1,600mg once to twice a day. But start low and go up. Try to be patient, take your medicine, and exercise while on the pred. Rectal meds are helpful, I didn't wanna do them either but here I am. When I feel cramps coming I try to rela and breathe lightly through my nose with minimal tummy movement (but don't pass out! lol). It can't always fix it but maybe it could buy you some time. Bentyl also helps I guess, I have some but haven't tried it yet. Also, I know it's awkward, but if you have to tell your profs, do it! When I told my teachers they said they didn't know what this was, I said, "Do you know what Chron's is?" and they said yes, and I said, "Kinda like that." That helped. Diet helps some people and not others; personally it doesn't affect me a whole lot. I was/mostly still am in remission for a few years! So don't get too cynical. Also I don't think stress affects me much either, but that's just me. Also, I don't know if you're male or female, but if female, be careful when choosing birth control. Good luck!

Thanks so much for all the advice. I actually called my doctor today and told him that I stopped my predisone and he wanted me to start right back up where I left off. Does any body who is on predisone have there weight fluxcuate or is just gaining weight until u get off the meds. I was 125 and am now 140 I feel so self consients everybody that sees me asks me if I'm pregnant there for awhile I was thinking I was until I was made aware of the side affects. That's one reason I stopped the predisone cause I was so self cons. That I just stopped I was so sick of people asking me if I was preg ot would be a different story if I was but since I'm not I just don't like it. And I do live in a residence where I have to share a bathroom but its only with my fiance and he knows of the diease so I don't have anyything to worry about with him but its at work or other peoples house's. I've hadd experiences where I was at my in laws and my family was over there and I had the urgency to go and because I don't feel that comfterable around them I had to drive to my parents house good thing that they only live around the block. But maybe the longer I go with being in remission maybe I will get more comfterble.

Thanks again to everyone

I did not mean to imply that anyone can eat whatever they want... it just doesn't affect some people (such as myself) like it does others (like Hellokitty, who has found a very helpful diet). Obviously if you eat something and it hurts/makes things worse, don't eat it. Do what works. In general it is better to have a healthy diet anyways. Same with stress, just doesn't get to me, it gets to others. Alcohol will give anyone the poops; common sense says wait til you're in remission and even then take it easy =p (Please don't call people who eat what they want irresponsible, if it doesn't make their symptoms worse then I don't think they're being irresponsible.) Thanks and I'm not trying to offend anyone!

hey bostonBB, for me, it takes months for pred to work. i'm the exception, some respond sooner. my last flare has been about, i don't mean to scare you- two years. yes, two years of bloody diarrhea. how do we cope? i don't know. frankly, when i think back on the last two years, i'm not sure how i have kept my job. it is hard, no doubt.

i certainly hope the best for you, but know that there are those out there who suffer as you do and we sympathize. give any treatment some time before you question it, and certainly don't stop taking the drugs if they don't seem to work. colitis can be slow to treat, and you don't want to stop taking your drugs too early.

for me, other than the prescription drugs i take, i have found a couple things to be helpful;
metamucil- taking a bunch a day really helps. i know a lot of people say not to take fiber on a flare, but for me psyllium (the ingredient in metamucil) works wonders.
yogurt- eating lots of unsweetened, live bacteria yogurt seems to help. i sweeten it with bananas because it's pretty tart on its own.
imodium (loperamide)- sometimes i take one or two to get through an activity without going to the bathroom. it helps, but don't go crazy on the imodium, or you can get into trouble with rebound/toxic megacolon.