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Ulcerative Colitis
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Posted 7/28/2008 11:47 PM (GMT 0)
First I would like to admit that I have long read these forums, but never had the courage until now to join and post...so please help! I was diagnosed in Sept. of 2007 after colonoscopy- and was told I had moderate UC. At the time I was 21 and double majoring in Business and Chemistry at UF. At the time I wanted to become a dentist, and now....I am thinking about med school to become a GI. Well the doctor put me on 60 mg of Pred and all symptons went away, in fact so well that when I got down to 10 mg of pred I went on a remission of Asacol. Then as soon as I got back from christmas break, bleeding began the big D, cramping, etc. They increased pred to 60 mg and maxed asacol out, nothing helped. Pain was incredible- I played football, baseball, lacrosse, etc. and never had anything like this. I was referred to Dr. John Valentine at UF who specializes in UC and Chrons. In Feb. the day after my 22nd bday,I ended up in Shands Hospital in Gainesville for two weeks- they reconfirmed moderate UC and checked for infection, which came back negative. I had IV steroids for a week and symptoms subsided and they put me on 60 mg of oral pred. once IV steroids ended. The minute I was put in the hospital they started max dosage of Lialda, 2 tablets twice daily. I was discharged and have gone until now with no major problems other than D maybe once a week- Life was good. But Recently I just took my DAT for dental school and thought I had gotten thru all of the stress unscathed, but for the past week my stomach just hasn't felt well, and from the usual one bowl movement a day, I now am having two or three- some solid some D mixed in :( but no blood. I am praying this is not an attack coming on....Has anybody had similar experiences? Should I try avoiding certain foods? The Doc tells me if this doesnt work I am looking at Cyclosporine and I am scared to death to take it. Does anyone deal with slight side pain on occasion (left side of abdomen)?

Thanks for letting me share my story- my father is an eye doctor and mother is a nurse and they are very supportive, but at the same time I am still their son...and I know the pain they feel when I suffer so I dont always like to share my daily debuts with them so I dont get them down-that is why I have finally become a member of this website. I know that I dont know any of you but in some weired way it really does feel good already just getting it out. I have always been a tough kid, but UC brings me to tears at time and feelings of depression.

I look forward to hearing from you, but I will also leave this website for anyone who wishes to see, Penn State is doing a study on Low Dose Naltrexone-seems it could be a good option, anyone trying it? Here is the website if interested:
www.lowdosenaltrexone.org

Catholic schooling has always told me greatness comes from suffering, and I believe it. All of you are in my prayers every night- remember strength comes in numbers and that is why we are all here!
God Bless

Lialda 2 pills twice daily
Fish Oil 1200 mg
Shaklee Vitamins
Prevacid
alprazolam (for anxiety as needed)
Posted 7/28/2008 11:59 PM (GMT 0)
Taking tests and doing well in school is probably a big stressor and that can lead to you feeling worse or to your colitis acting up. It's easy to say a person should relax, but it's probably harder for anyone to actually do that. Have you stopped sports? Any activity that can take your mind off of things?

The left sided pain is pretty common, I'd say. Could be gas; could be a sign of disease activity. In general foods have never given me much bother, so I can't speak to that, but it's hard to say that avoiding certain foods will prevent a flare.

Something that did work for me was changing 5-ASAs. There are other options on that front. A number of people here swear by rectal meds, and I'm sure they can give you better advice than I can.

I'm not a big fan of suffering for anything, so my advice is to avoid it. . . . Hang in there. Good luck.
Posted 7/29/2008 12:09 AM (GMT 0)
Thanks for the info...the only sports I play now are Golf and occasional water skiing.....in terms of suffering, I DEF. know what you mean, I just tell myself to keep it all in perspective when times get hard!
Posted 7/29/2008 12:16 AM (GMT 0)
I agree with the school stresses. My cousin juts became a surgeon, and she has colitis worse than me. She has done anything and everything to get by, so, whatever works. It might take a lot of tries to find something, as you have probably read on here already.

I hear from all places that food is not a factor, but it could be... I know for me, any food you can get at a restaurant that would make a 'normal' person think twice I can't eat. I've tried, and about ten minutes after I get these horrible pains on my left side, and then I spend the rest of the night/day in the bathroom. If you want to figure out which foods bother you, try eliminating certain chunks of thing such as wheat, grains, dairy... Things like that. I was on a Celiac screening watch for a while there, so while my results were being processed I took a vacation from wheat, grains, and gluten foods. That had no effect, but, at least I know that now.

I'm in college too. I found out I had colitis 6 months after experiencing the worst flare of my life which happened around finals week of 2006. Yay.... It got me anemic, I lost a ton of weight and I looked like a poor starving child. I was a shadow of my former self. It's taken me all of two years to get back to kind of how I once was, and I'm still struggling. I am still here though. And smiling. Hopefully you can have good luck with treatments.
Posted 7/29/2008 1:01 AM (GMT 0)
Don't be too scared of cyclosporine. It's certainly not a benign drug, but I took it for 1.5 years for minimal change disease (similar to UC except it affects the kidneys) and it helped tremendously with only minimal side effects. (It actually did help my colitis too, though it was not prescribed for it.) If you do have to go on it, hopefully you will have a similarly good experience.

[P.S. Keep taking your fish oil if you take cyclosporine. It may help reduce some of cyclosporine's potential bad side effects (findarticles.com/p/articles/mi_m1200/is_n19_v133/ai_6703257/pg_1).]

There have been a few mentions of LDN here that I've seen. There was just a post today about it: www.healingwell.com/community/default.aspx?f=38&m=1185172. A search might give you older posts that mention it.
Posted 7/29/2008 8:37 PM (GMT 0)
Hi Reelin,

What about 6-MP/Imuran or Remicade? I am curious to know why your Dr.'s next step is Cyclosporine? I would definitely ask about the others (if not already). I may be going on Cellcept for my Kidneys and UC, ask about that drug too.

I would try taking some pro-biotics to help and avoid caffeine and citrus fruits. Caffeine and citrus fruits can exacerbate my symptoms making me go more..........we are all different but those do not help me.

I hope you feel well soon! Take Care!
Posted 7/29/2008 11:40 PM (GMT 0)
I saw my GI today and he was wondering out loud why the symptoms were so bad for an apparently mild case of UC. I then mentioned to him that I started noticing my UC symptoms get worse (and also dermatitis start to appear) after my nephrologist stopped cyclosporine. I then asked him if he's ever prescribed cyclosporine for UC, and he said that cyclosporine is usually only given for UC when nothing else works.

Echoing Beth, I'm curious why your doctor hasn't talked about azathioprine or 6MP first? Or has he?

Hang in there.
Posted 7/30/2008 12:31 AM (GMT 0)
I totally know what you are going through!! I havent been diagnosed yet with UC, but i know i have it...my twin sister was diagnosed when she was 16 and i started showing signs a month ago..im 21..i've been in terrible pain the majority of the time, and some days are better...i honestly cant wait to be diagnosed so i can start on meds!! ive lost alot of blood over the past couple weeks so i'm a little worried..like u i have always been active i ran and cheered in high school and i cheer at the college level to this day, and coach varsity cheerleading at the high school level...what's funny is that i started my sypmtoms right when i've started worrying about my gres...i've been studying like crazy since may for both my regular and psych gre..im trying for my doctorate in clinical psychology...i have been sooooooooooooooooooooo stressed with it that it totally consumes my life sometimes..i've also had to deal with alot of drama coaching cheerleading and all of the stuff that it involves..so stress is my middle name!!...and of course this is when the uc symptoms started..how funny!!! what i found helpful is just taking that extra time that i know i should be studying with, but just telling myself that i need me time and that i deserve it! right now im actually on vacation haha, just got back from the beach and i felt so great today!! of course now after dinner im in pain, but whatever! atleast the first part of the day was great! well good luck with everything and i know how u feel when you're feeling depressed and upset, i'm still coming to grips that i most likely have uc and i'm gonna have to live with it! what doesn't kill us makes us stronger!! good luck and just relax and be selfish and enjoy some time doing something that makes you happy!!!

Posted 7/30/2008 12:40 AM (GMT 0)
Reelin Gator - Welcome to Healingwell! Glad you decided to post after lurking for so long :)

Have you considered a second or third opinion to make sure all of the options are being covered? Have you been frank with your GI about your concerns?

It's not unusual for those with chronic illnesses to feel depressed. If you feel it becoming too tough to handle, be sure to talk to your GP/PCP about an anti-depressant. I've used them in the past to get me through tough times - and having UC that is not responding to treatment qualifies as a tough time!

Good Luck!
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