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WhiteSox1
Regular Member


Date Joined Oct 2007
Total Posts : 135
   Posted 10/25/2007 8:03 AM (GMT -7)   
Hi guys
 
I have just been diagnosed little more than a month ago with Ulcerative Colitis and I'm glad there is a place where people with Ulcerative Colitis can go to offer encouragement and wonderful advice.  I have to admit, though, that I'm having a hard time coming to terms with having a chronic disease and my memory lately has been hazy and foggy.  Is this due to the Colitis, medication or could it be depression?  Currently I'm on 35mg. of Prednisone and tapering off 5mg. every week,  100mg. of Imuran and I take 3 Asacol tablets, 3 times a day. 
 
Also,  do you guys have any tips or advice on coping with having Ulcerative Colitis?  Any advice would be greatly appreciated.
 
Thanks......

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/25/2007 8:16 AM (GMT -7)   
Hi White Sox,

Welcome....yes, it is hard to come to terms with this and it has been great place for me to come. For me changing taking my Imuran to night time from the am has helped the fogginess for me that and I am getting better day by day, I have a low red blood count right now so I think that is contributing to it, but in general not feeling well and not sleeping took it's toll on me.

How are your symptoms now?

I try to tell myself it could be worse, though a few weeks ago I was in a horrible flare and at that time, I couldn't imagine anything worse......I am doing much better now but sorry that was not uplifting.

Do all the reasearch you can on your meds, on your docs everything!!

I wish you the best.

Beth
Beth, 32
UC Diagnosed March 2000
Imuran 100mg 1xday;Remicade tests pending;Hydrocortisone enemas 1xday;Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Potassium 600mg 1xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


WhiteSox1
Regular Member


Date Joined Oct 2007
Total Posts : 135
   Posted 10/25/2007 9:24 AM (GMT -7)   

Hi Beth

Thanks for your reply.

Right now I'm in the middle of a pretty bad flare-up but doing better.  I get night sweats, insomia,  over-eating (which, I think, is from the Prednisone), cramping, severe headaches and bloody stools.  Been in and out of the hospital during the last month which included two, thee day stays.  I have also lost 25 pounds and then regained 15 pounds. 

 
 

UCreallySUCKS
Regular Member


Date Joined May 2006
Total Posts : 260
   Posted 10/25/2007 9:32 AM (GMT -7)   
Yeah the Imuran will cause the headaches, no doubt.  And many of the other side effects you listed (sweats, insomnia, over-eating) are likely from the Prednisone.  In my case the Pred. also causes achy joints, especially my hips, shoulders.  Mood swings as well, especially after being on it over a month.  Glad to hear you're doing better though.  When I started flaring last year, I also lost about 25 lbs (I was thin to begin with), and got down to 107 lbs (5'8 31 year old male).  I'm now 140 consistantly, though I'm sure some of it has to do with the Pred. and not working a physical job anymore.  That's one good effect of the Pred...the weight gain...when we need it most.

---Nathan---  31 yr old male
Diagnosed May 2006 w/severe UC
Currently in mild/moderate flare
2 400mg Asacol 4X day
20 mg Prednisone
1 multivitamin/day
2 grams calcium/day
75mg Imuran/day
100mg Tramadol/day for abdominal pain (as needed)
1 Fioricet ever 4 hrs as needed for severe migraines


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 10/25/2007 9:35 AM (GMT -7)   
Hi & Welcome! I had brain fog/haziness/memory loss while on pred. Just know as you taper it will get better! This is a great site w/ tons of information. Our members are super helpful so feel free to ask any questions. You can also do a search at the top of the page if you need to look for old posts on specific topics.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 10/25/2007 1:35 PM (GMT -7)   
WhiteSox, Pred will definitely mess with your head. Other factors are sometimes anemia from blood loss, loss of sleep and plain old depression. As my doctor said, you have good reason to be depressed.

Yes, it's really tough to go from our self-concept of healthy and invincible to being someone with a chronic disease. Take your time and give yourself a break. Discuss your feelings with your doctor; most of the GI's I've known do depression screenings on IBD patients for just this reason, and you'll find a lot of us are taking antidepressants.

None of us asked for this disease, and nothing we did caused it, so we have no real reason to feel ashamed and dirty, and yet we often do. I also found that letting my family, friends and certain co-workers in on what was happening to me was very helpful because I no longer felt like I had a big dirty secret.

Hope you feel better soon. Don't let this darn disease get you down!
Judy
 
Left-sided UC diagnosed 2001.  Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years! 
 
Now in remission for almost two years. Remicade has been my wonder drug.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 10/25/2007 1:44 PM (GMT -7)   
Hey WhiteSox...welcome...though i am a Cubs fan myself I think we can get along...are you in the chicago area?

Things get easier the more you know. You have gotten great advice so far I have to agree with everyone. Dealing with a chronic illness is hard to do. When I was first dx'd i was in total denial. It took me about three years for it to really hit me, i got super depressed at that point. What helped me was therapy. I was able to put things back in focus. UC is not my life but it is something that has become part of my everyday life and I make accomodations but really havent' changed my life too much. ITs hard not to let it overwhelm you. Good friends and close family became my support group (as well as this site once i found it!) I havce a handful of people that I can talk VERY openly with about my UC. My best friend and I joke all the time about it. It helps to make fun of it a bit. (when it's jsut the two of us we talk about it as my exploding butt disease, ha!) There is so much about this disease that seems shameful but none of it is.

We are all here for you. Don't be afraid to ask questions and talk about things you never though you would (colors, shapes, smells, sounds...we have all been there)

Hang in there...good luck!
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, 15 mg pred. until immuran kicks in...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07
Prontonix once daily for acid reflux, zofran twice daily for nausea


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 10/25/2007 1:49 PM (GMT -7)   
Tips on coping with UC... Hmmm... Well, it's good to realize that this is a chronic condition and you have to deal with it. Don't stop your meds - even when you're feeling better. Been there done that - learn from my mistakes! Some times a good cry or scream can help too. Venting to us helps - usually you can find someone who's been through what you have and can offer advice or just lend an ear.

Being diagnosed with a chronic condition is very difficult. You'll go through a grief process. Sometimes, when you've been ill for a while without a diagnosis, it's almost a relief to know what's wrong with you. Knowledge is power - learn all you can about your disease and it's care. Make sure you can be a partner in your care. Make sure you have doctors you feel comfortable with. Educate your family and support system! Send them here if necessary :)

Judy's advice is awesome! Because this disease deals with the bowels most people feel weird talking about it. After a while - questions about poo don't phase a person anymore!

Chronic illness and depression can go hand in hand. If you find yourself feeling down and blue and just don't know why - talk to your GP and ask about meds. Thank goodness for my anti-depressant!

Yes - the pred can cause brain fog!

I think I've rambled enough - let us know if you have any more questions!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Forvia and a Probiotic
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


WhiteSox1
Regular Member


Date Joined Oct 2007
Total Posts : 135
   Posted 10/26/2007 6:05 AM (GMT -7)   
Thanks for the kind comments everyone.

Next time I see my GI doctor I'm going to ask about seeing a psychologist to help me cope with having a chronic disease since this is all new to me. You know, I use to always think I was invincible....

And kb5, I'm a southsider which means there's only one baseball team in Chicago. :) Kidding...

Sideshowbob
Veteran Member


Date Joined Sep 2005
Total Posts : 698
   Posted 10/27/2007 8:08 AM (GMT -7)   
Hello WhiteSox1! Welcome to the forum. Its a hard thing getting used to having a chronic disease and making the life adjustments, but we all have, and you will too! Just keep your head up, and keep coming here for support.....we all are in this together, and the emotional support is as important as the information on handling the disease. Once again, WELCOME! :)
34 year old Male
First Flare was February 2005. Diagnosed June 2005-left-sided Colitis, suspect it has since spread. Started 4000 mg Oral Salofalk June 2005-stopped January 2007. Remission until November 2006.
Been in a flare to various degrees since November 2006 to February 2007. Currently in remission.
Presently on 0 mg Prednisone-down from 60 mg!
Weekly 4000 mg Salofalk enemas.
Daily 4000 mg Salofalk oral.
Started Omeprazole 20 mg February 2007.
Co-Moderator-UC Forum

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