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Posted 4/12/2012 5:26 PM (GMT 0)
Hi all :)

Let me introduce myself, I am a 24(soon to be 25) year old mother to two girls. When I was pregnant with my 3.5 year old back in 2008 I went undiagonsed with UC for the entire pregnancy.  I had my first scope in Oct 2008 and I was diagones with UC and put on Asacol. I went into remission and was cut back on the amount I was taking in 2009. I got down to 145 (from being 201 in June of 2008) and then had a severe flare up Halloween of 2009. I was in the hospital for 4 days because my intestines were so inflammed that nothing could pass and if it did it came out. I was discharged with a high dose of asacol again and prednisone(40mg). By the time Dec 1st hit I gained 45 pounds from the prednisone and was finally weaned off of it. I found out in March of 2010 that I was pregnant so I stopped taking my Asacol . November 2010 I gave birth and my UC was not that bad at all. May 2011 I had another scope and it came back with no signs of UC but my new doctor wanted me to continue my meds. Instead of taking 6 Asacols a day, he gave me Lialda(2 daily).  I ran out of it when I Was taking care of my grandmother in the summer so stopped taking meds in August of 2011.  By December 2011, I started having UC symptoms again. These symptoms got worse and finally in February, after losing 14 pounds in January alone, I went back to my GI doc and they started me back up again on Lialda, that did not work so they started me on Cimzia. It got so bad where I could not leave my bed and take care of the kids because either i was in pain from the cramping(which was worse than labor pains) or I was constantly in the bathroom. Finally after another 5 pounds lost, the first month of the Cimzia treatment, being put on 40 mg of prednisone again and 100 mg of tramadol every 4 hours, they decided to do both an upper and lower scope.  These past two weeks I have finally started to get out of the hosue(I think the prednisone and maybe Cimzia is finally starting to kick in) but today I found out that my UC is no longer just mild and that is Pancolitis.  I also have Gastritis too and have to wait until I get back in town in May to do a small bowel test to make sure nothing is going on with that.

I guess I am just overwhelmed because I knew how to deal with the mild UC but not to sure about Pancolitis. Is there a special diet I should follow, I know eggs dislike me and I usually only drink milk with my prednisone in the morning, which is a must otherwise I am on the toilet all morning. I am getting ready to do a 16 hour road trip back home to pick up my girls, because my mother was AMAZING and took them so I can figure out what exactly is wrong.  But if anyone can shine a light on Pancolitis for me that would be amazing. I would love to know if Stress triggers it( I am a SAH mom and military wife, tons of stress) and if there should be a specific food diet I should do at least for the beginning because I want this to "clear up" as soon as possible- you know for as much as a disease like this can clear up. My doctor has prescribed me Cimzia still so if anyone is on it can you please let me know if it works for you, and she is trying to wean me off the prednisone currently(I am down to 30mg). I am also on Nexium for the gastritis and still have tramadol for pain(100mg every 4 hours as needed). She also gave me Ambien CR for sleep(12.5 mg)- does anyone else have sleep issues? I feel like I am constantly tired.  :(

Thank you again.

Posted 4/12/2012 5:58 PM (GMT 0)
Ancondry, sorry you have had so many issues and that you are feeling so ill right now.

I realize that you are very busy and stressed and taking care of two young kids is never easy.  But your practice of falling off your meds repeatedly is something that you have to stop.  Whatever approach you end up taking from this point on, you must realize you have to keep up your vigilance or this disease will continue to wreck your life.  You cannot stop taking meds when you feel better.  Remission must be maintained.

I realize there are folks here who will tell you they have been med free for xx years.  I am sure they feel great and I am glad they are having this experience.  But the research (at least that I have read) does not support the notion that you can stop meds if you achieve remission.  I think remissions like that are kind of like accidents.  And maybe it's true that a 10 year remission with no drugs is worth it, even if you end up with pancolitis at the next flare.  Personally, I do not subscribe to that kind of thinking.

Stress is absolutely a factor in causing flares.  It is not possible to eliminate stress, but it is possible to do your best to manage it.  Look ahead and if you see a big issue coming (deployment? move?) and plan around it.  Set up your support system ahead of time and make sure it's ready for you.  Plan exercise into your day.  Get yourself some "me" time to relax.

As to how to deal with your current IBD, I don't have input on the Cimzia.  I will say that rectal mesalamine is very effective for the inflammation you're having in the rectum and sigmoid colon, and I'm sorry that you did not have that in your treatment plan already.  Call your DR and get some.

There are dietary approaches that many have tried, some successfully.  The one most people here will talk about is called the Specific Carbohydrate Diet.  I haven't tried it, but I have gone gluten free and I feel much better for that change.

I hope you feel better soon.

Posted 4/12/2012 6:07 PM (GMT 0)
In a nutshell, there is really no difference in treatment between pancolitis and say, left-sided UC. I was diagnosed with in January 2009, about 3.5 months after my son was born. So far, that's been my only flare, BUT I have stayed on my medication consistently, using both oral and rectal mesalamines (see sig for details). I don't want to cast blame, but quite honestly, not staying on your medications was a huge mistake - I have no plans to go off of mine. I had a scope in October 2011 that showed absolutely no inflammation and I haven't had any symptoms of UC since May 2009.

As far as diet, I don't have to avoid anything that I didn't pre-UC (MSG and artificial sweetners have given me bad diarrhea for ages, so I am even more careful to avoid them now). I do eat a relatively healthy diet, though, with lots of fruits and veggies and very little processed foods.

I agree with kazbern that a mesalamine enema might help, and I'd get on a high-quality probiotic as well.
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