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ravewgirl
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/7/2008 10:09 PM (GMT -6)   
Hi everyone. I'm new to this site....I've never been on anything like this before, but I'm just at the point where I can't take anymore, and I'm ready to explode. So....I thought I'd give this a chance. I've had ulcerative colitis for just under a year now, and I've just had enough. I'm a 20 year old college student, and for the most part, I think I've been handling all this pretty well since I found out I had it, but ever since the summer it seems, I've just blown a fuse. I currently take Asacol-400 mg-12 pills of that a day, along with Immuran-50 mg-3 pills a day, and Prednisone-15 mg a day. I was doing okay with all this medicine, even though I hated taking that many pills a day, and then my doctor started trying to taper me(again) off steroids. I was on 20 mg, and was doing alright with the tapering, but when I got down to 10 mg, I started flaring up and was having to go to the bathroom sometimes up to 17 times a day. At first I just thought it was the stress and nervousness of school starting again, but then when I was still having trouble after the 1st week, I realized it was the tapering of the steroids. So, my doctor put me back to 15 mg for two weeks, to see if that would hold me for a while. This is the third time I've tried to get off steroids people. And...I realized I need to get off them because they're harmful to me in the long rung and have horrible side effects, but I'm starting to realize I don't think I'll ever be able to get off them. My body is just being too stubborn and resistant to the medicine, and I can't take it anymore. All I ever do anymore it seems is think about my disease, and almost every day now I'm crying and just get more and more upset. All these thoughts about my disease consume me and I can't make them stop, and it's getting to the point where I think I'm just gonna break down and lose it. I'm sorry that this was such a long rant, but I just wanted to get my story out there. If anyone has any advice on how to deal...please.....I more than welcome it. My parents have been such a great support for me, and I love them for being so patient and sympathetic, but it's hard when you can't talk to people your age or people who have it. They just never fully understand, and I have no one to compare myself with. So, please...if anyone has anything that could help me to deal with this, or if you just want to tell me your story, then thank you. I appreciate your time.

~crys~

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 9/7/2008 10:25 PM (GMT -6)   
Hey sweetie, I'm 21. I was diagnosed at 20, but was suffering long before then. It's a VERY tough disease to deal with especially when it's a stubborn case and it's bad enough to be here. I totally understand the 15+ bms a day thing. It's so hard to have to try to live a normal life when your life literally revolves around bathrooms. I couldn't imagine trying to do college.. I withdrew. I am having issues right now training for a job at petsmart.. not even a hard job and I'm not even stressed out, ,but JUST getting there and in the mornings ... it's so hard. I was the ONLY one in the training class today that got up twice to go to the bathroom!! I knew the managers were thinking.. what's wrong with her!? Tomorrow is more one on one training too.. then what? are they going to think I don't want to learn?

I totally understand being young too and wanting to just freaking have fun right!! Just go out with friends.. not worry about doing spontaneous things... dating.. relationships... it's SOO SOOO tough when you have to worry about being in a car with friends and not making it to a bathroom on time... or traveling to a friends place and then having an accident and having to go home and cancel plans. You feel like you can't let anyone depend on you!

AND IN COLLEGE... I can't IMAGINE how hard it is to eat somewhat healthy! Everything is carbs and crap.

I'm so sorry hon! I also know that PRED SUCKS!!!!!! Did you too gain weight or the moon face? I had lost 35 pounds in a month or two from this disease and then gained 45 pounds from the pred!!!! It's a TERRIBLE and great... drug at the same time. I hate that it is so powerful at stopping your flares, but then getting off of it is so difficult and the side effects are hard to really figure out which suffering outweighs which.

*hugs* I'm here if you need to talk. I will put my email up on my account.
Kara, 21F Married.
Diagnosed March, 2007, but was going through testing for a year before diagnosis.
Left Sided UC. Currently in a flare.
Medications:
Lialda - 4 pills in the morning w/ food.
Steroid Enemas


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/7/2008 10:25 PM (GMT -6)   
Ask your doctor about remicade its a very effective treatment

ravewgirl
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/7/2008 10:48 PM (GMT -6)   
Thank you so much sweetmelody for your comment. Yes...with the steroids I've gained at least 40 pounds, had the moon face, stretch marks all over like you wouldn't believe, had back aches, eyes watering, increase of appetite, basically all the side effects you can think of. lol. At first, that was really hard to deal with, (having a moon face and trying to face students in class), but the moon face went down, and even though I'm left with all the weight and stretch marks, I've dealt with that. At this point, I'm just trying to get under control, stay under control, and finally get off steroids. It's just so discouraging every time I try to get off them and it doesn't work. But, I'm just trying to take it one day at a time. Man, I know what you mean about having to use the bathroom and not knowing if you'll make it and having to go on the job. I'm just thankful I work at a place where I'm close to a bathroom and it doesn't get that busy. I hope your new job goes well and that your boss will be understanding. Thank you so much again for responding back to me. It means more than you can know.

~crys~

mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 9/7/2008 11:38 PM (GMT -6)   
I hear ya ravewgirl i feel the same currently...not only is everything stressful the prednisone is like an amplifier for my anger and stress. Heres what i did..called up my doctor and said i am suffering from stress anxiety anger and depression. Its a start no can help you if you dont let them know. My appointment is wednesday. I am hoping to get off prednisone and convince my GI spec to start remicade.
26y old male med disharge veteran
 
Diagnosed with UC (lower proctitis) in 2004
Current daily treatment:
1000mg sup asacol
2400mg oral asacol
40mg prednisone
75mg azathioprine
20mg Nexum
 
Still 4-5 bloody, mucus bowel movents a day! Blah...


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/8/2008 10:16 AM (GMT -6)   
ravewgirl, I've had a crappy summer, too. I think I'm finally getting better, but am still not in a full remission. I'm sorry you're having trouble tapering off pred and that you're having all these issues at college! (I've taken the semester off--I can't even imagine going to the bathroom that often when not at home!). I have those days where I break down and cry too, but sometimes it's a good thing--it releases all of your emotions. How long have you been on Imuran? It usually takes a few months to kick in, so hopefully Imuran will reach it's full potential and give you some relief.
 
I hope today is a better day!
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/8/2008 11:49 AM (GMT -6)   
Crys,

There's a few of us who are also new here and have found this site to be amazingly helpful and supportive. There's a ton of information here to digest, and a thread or 2 for just about every circumstance I can think of. THere is no shortage of candid responses either. I have laughed out loud several times at our (the imperial we) ability to understand eachother when we say some of the most non-table-talk stuff about our disease.

I hope you stick around and read posts and research like I have over the last few weeks. It really really has helped me, for lack of not having an active support group in my area.

I have found no shortage of sympathy here, which means ALOT to me.
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled
1 x 1000mg Fish Oil Cap
Starting some probiotics and SCD-like foods to see if I can make a change.


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 9/8/2008 11:55 AM (GMT -6)   
hi Crys,

try eliminating sugar from your diet (no cakes, sodas, sweets, candies, cookies, etc.); it may help in a big way.
ps.
almost forgot, eliminate milk too.

NBT


Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 9/8/2008 12:19 PM (GMT -6)   
How long have you been on the Aza? I went on that when I couldn't get off steroids - but it took a good three months for it to kick in.

Have you tried any rectal meds to help during your pred taper?

Hang in there and take things a day at a time. If people ask, just say you have a stomachache - I've found most people won't ask past that :) Everyone has had one at one time or another, so they should understand.
 
BTW - Welcome to HealingWell!  Glad to have you :)  Sorry about the circumstances though.


Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next infusion: 10/07/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/8/2008 12:33 PM (GMT -6)   
"Better living through chemistry"
Don't worry about taking so many drugs, or even about the prednisone for now, is my advice (although the weight gain SUCKS). A little while on it (a year seems like a little while to me) should not give you the more serious effects you read about. Maybe you are tapering off too soon, before you are through your flare. I would be asking for a larger dose, like 30 mg, if I was still going 17 times a day! (and I've been there). Get better with it, THEN see what will work for the long term and what YOUR triggers are.
Hopefully you have a good doc who knows as much and more than I do!

Give yourself a break, get some rest, whatever that takes. I hope you feel better soon and keep in touch!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering OFF presnisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
 


kazzaz
Regular Member


Date Joined Sep 2008
Total Posts : 31
   Posted 9/8/2008 11:06 PM (GMT -6)   
You could try taking lialda, you only have to take 4 pills of it a day. Its for mild-moderate colitis.
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