My UC Story

Hey Everyone,

I am very new to this site (the only site I have ever typed on) and I figured if I was going to read about everyone else, I better give my information out to.  So buckle up, here we go.

I was in Iraq when I first flared up in December on 2006.  I was diganosed in Jan/FEb of 2007.  They gave me asacol and I was fine.  I got back home and eventually would have several small flare ups.  They would just give me pred and everything would be okay.  I never went over 20mg. 

Fast forward to Nov of 2008.  This is when this major flare up started and has not gone away since (7Aug2010.)  They tried the asacol and high doses of pred (up to 60 mg.)  It would work at first and as soon as I started to taper, everything would just come back.  Around spring of 2009 it all started to go south.  I was having lots of bloody stools up to 20-25 times a day.  I was having accidents on mysefl all the time.  The urgency was so high that I was scared to leave my house.  Note: I am a very outgoing, fun, really into sports and just always being on the go.  So for me to start acting like this, it was hard for me.  After going on myself really bad in public on two different occasions, I asked my dr to change up how I was getting treated.  They then put me on 6mp, they worked it up to 125mg a day, the highest dosage.  All this time, I ws still on pred and asacol.  Everytime I tapered off the pred (at 15 to 20mg) everything came back.  I was dependent on the pred.  They figured the 6mp was not going to work on it's own.  They decided to start me on remicade infusions.  I did all of the loading ones and noticed right away that nothing was really changing.  They ordered me on the highest dosage at 10k/per lb. every four weeks.  It didn't work on it's own, so they putme back on the 6MP, the dual therapy.  I was finally tapered off of the pred at 2.5mg per week. 

After all these tries by my dr's, I today am still having issues. 7-10 bowels a day, blood, the urgency is there, sometimes I have a little pain but never too much, fatigue, etc.

I just don't know what to do anymore and I don't think there are to many more options for myself other then having surgery.  What has everyone else experienced?  How do you feel about surgery?  I have an appt next week and I wanted to go in prepared. 

Note:  I am pretty darn healthy other than the UC.  I always get to the gym 5x a week.  Although they are not as intense s they use to be, I still feel better when I go.  I eat pretty healthy.  I, like anyone else enjoys pizza, ice cream, etc.  I don't drink. 

Thanks to everyone who might have some insight/info for me. 

Vick

I will consider surgery when nothing else is working. Sound like you are about there. Have you tried diet modification? Cutting out gluten, milk, etc? Try googling the Specific Carbohydrate Diet. It has worked for some of us. Or just an elimination diet.

Vick, I'm sure others who have had surgery will chime in but I had my first of three surgeries to get the j-pouch about four months ago. Most people only need two surgeries and only have to have a bag or "appliance" for about three months between surgeries. I had UC for about five years and if I had known then what I know now I would have had surgery much, much sooner. While the operation was no walk in the park, it went well and I feel so much better now. Can't believe I let UC control me for so long. I don't miss those feelings of panic I would get when I needed to find a restroom quickly. When I had UC, anytime my husband and I made plans the first thought I would have is I wonder how I'm going to be doing then? I had forgotten how healthy even felt. It really is no way to live, if your disease is severe. Even the bag isn't nearly as bad as I thought it would be. I don't even think about it any more. I should lose it in December. You've already gone up the ladders of available medicines - except Humira - and it sounds like you are far from remission so you might seriously consider surgery. I knew I was going to have it eventually and just wanted to get it over with. Good luck.

Scrap Girl

I notice in your signature you refer to 1st 2nd and 3rd steps of J pouch. Long story short hubby is accepting the fact surgery is the only route...we need to look into it more. However I honestly thought after the colon removal and maybe 3-4 months later the j-pouch procedure but didn't realize there were varying steps to accomplish it. This will not make him happy.

We should be hearing from his Dr next week possibly and I definitely need to do more indepth research about the ileostomy and j-pouch obviously for him.

Another UC wife, like I said most people have it done in just two steps and have three months or even less between surgeries. A few even have it done in one. My surgeon is very conservative and since I was on immunosuppressants for a long time and had taken steroids for a number of years he opted for three surgeries. He's done hundreds of these surgeries and I trust him so I was OK with it.

Hubby is very similar to your situation Scrap Girl and it is the Mayo Clinic that we have the utmost confidence in so whatever they say is what it will be. We are bracing and preparing ourselves for a long slow recovery process and have a tentative vacation planned for Nov 2011 and can opt to cancel if it doesn't look like a good thing to do. Have an Oct vacation planned and will have it done as soon as possible and works into their schedule as we can be as flexible as needed since we are retired. Thanks.

puffed rice,

I do take one suppository, I take it at night.  It usually only last me about an hour and a half.  I do not take any probiotics....I will ask about this.  I always try to avoid high fiber foods, I use the restroom ALOT and won't taking fiber just make me go MORE??  I try and use imodium that they gave me for going out but it only freaks me out more, it really doesn't do too much for me.  Thank you though, these are all great things to remind me of.