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Ulcerative Colitis
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Posted 4/8/2008 11:04 PM (GMT 0)
Hi.  I am new to the forum, but not new to UC.  I was so happy to come across this forum because it is really hard to find others who understand what I am going thru.  I was diagnosed with UC in September of 2006 after dealing with blood and mucus for a couple of years.  Since then I have had one terrible flare up and right now I seem to be in the midst of a constant flare.  I recently had another colonoscopy which confirmed that the disease has progressed beyond the rectum.  My doctor wasn't very clear, but said that there are signs of mild disease at the other end of my colon.  I'm not sure what this means, but I know I haven't felt well for months.  He put me on Lialda and Rowasa and it seems to be going OK.  I never thought of it as a flare up until I came across this forum.  I always think of a flare up as 10-20 bloody BMs a day and incredible pain.  For the last couple months I have had a lot of pain, heaviness in my abdomen, blood and mucus, tenesmus, and pain in the rectum.  I am extremely fatigued and just feel bad most of the time.  I would love to hear from anyone else who has had to deal with this type of problem. 
Posted 4/8/2008 11:43 PM (GMT 0)
Welcome to HW :) You came to the right place because we all can definately relate to what you are going thru. So you're still on the Rowasa? If not, you should start back on them. But if you are, you may need to switch to a stronger rectal med such as Colocort which is a steroid enema. These work fairly quickly. Also, I don't know if any docs every told you but you need to avoid all Nsaids such as Advil, Aleve etc. This will cause more bleeding and/or make you flare. Once again welcome and please don't hesitate to ask any questions you should have.
Posted 4/9/2008 12:47 AM (GMT 0)
You are fighting too much at once. Time for a new doc? Your symptoms are normal, by UC standards, but the treatment seems so mild. My doc gets worried beyond 3 BM's a day. Many medicines await. Have you been on Prednisone to control the flare? I am not a big fan, but the darn stuff works. IV works even faster.... Seek info on the 6mp's for maintenances once controlled.
Good luck
Posted 4/9/2008 1:28 AM (GMT 0)
Thanks for responding. I'm not really sure what to think. I was so happy that the doc changed my meds and started taking a proactive approach. I was taking Canasa suppositories once a day and they basically stopped working a while back. I scheduled a colonoscopy because I just knew something was off. My doc seemed pretty confused with my particular situation - I don't typically have diarrhea, I guess I am kind of the opposite. I used to have constipation with tenesmus and serious pain when finally having a BM. Of course all the while I would deal with blood (every time I went) and mucus and abdominal pain. Honestly, I just thought it was par for the course. Things have started to change though. I have started to have mild diarrhea (3-5 x/day, but not everyday), lots of pain, I no longer enjoy eating at all, I can't drink even a glass of wine, and I just feel wiped out. I guess my thing is that I don't really know what I should be doing about this. I have researched a lot, but I feel like I am probably not in that bad of shape and should just toughen up.

I just started rowasa last week, and aside from the gas I feel OK. I'm not really sure either one are working though. I don't feel one iota better today than I did last week. There is less blood, but that is about it.
Posted 4/9/2008 1:35 AM (GMT 0)
Does you GI specialize in UC or IBD? If not, I would ask for a referral to one who does. UC can have D or C - depending on person and severity.

From what you said about your c-scope results, it sounds like you have inflammation throughout the entire colon (aka pan-colitis) with the left side being worse. After you peruse the old posts (great info in them) you'll see a constant theme: inflammation starts in the rectum and moves upward.

What you're experiencing is NOT okay. Your doctor's goal should be to get you into remission (no symptoms) with meds. Flaring should not be a permanent state - the inflammation can eventually cause cancer - hence the importance of meds.

How much Lialda are you taking? Have you been checked for anemia?

Be sure to check the forum resources at the top of the page. Ask questions as you have them - knowledge is power!

Glad you found us! Sorry you had to .
Posted 4/9/2008 2:31 AM (GMT 0)
I really don't know if he specializes in UC or IBD. Honestly, I would say he probably doesn't. He doesn't seem that knowledgeable to me. Next month I have to go back to see the doctor who originally diagnosed me - I really like him a lot - to have blood tests to check my liver and kidney function. I swear, I figured getting to the place where I am comfortable was the point in all this. I can't imagine not having symptoms at all. It has been so long.

I really never expected to get it throughout my colon, but from what the doc said, there are signs of the disease in the rest of my colon, just not as bad as where it was initially diagnosed. He never said pan-colitis, he just said the biopsy showed it on the other side.

Right now I am taking 2.4mg of Lialda a day and Rowasa each night before bed. I was checked for anemia, and I am fine.
Posted 4/9/2008 3:53 AM (GMT 0)
good luck, it sounds like alot of what I was just accepting as normal for IBS until my hubby finally got me to back to my GI last fall. Just confirmed today that it is UC and not IBS. I'm doing very well with generic rowasa and asacol, and this site is a great resource. I never even heard of the SCD diet before stumbling into this site, and it seems like there's alot of trial and error involved to finding the treatment that is right for you. Everyone here is so supportive. I'm sorry you are going through this, but I'm happy you are here with these great folks :)
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