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Ulcerative Colitis
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Posted 6/20/2011 6:18 PM (GMT 0)
Hello All,
I have a few questions... I am fairly new to UC. My GI doctor prescribed me Lialda which I have been taking everyday for almost 2 months now. Tried switching to Aprizo which was not a good idea, started regressing within a week. So, back to Lialda. I was so sick before I was diagnosed and have actually made great improvement with the medication ( no longer have the frequent urgent bathroom trips, they are more occasional now; and I can eat without feeling sick etc) but what is "normal" supposed to be now? I don't feel super great but 100 times better when I was at my worst...
I am still tired alot, I still have "bad days" when I can't leave my house, not gaining any weight back and I just don't feel like I am not sick anymore.. What is total remission? Maybe I am not there yet?
Posted 6/20/2011 7:58 PM (GMT 0)
hi Recently Diagnosed,
i think normal is very individualized. when i was in remission, i had some good days and some not so good days, and i also struggled w/fatigue. apparently fatigue can be a part of ulcerative colitis. have you had your iron and vitamin d levels checked? low levels of these things can also contribute to tiredness. when u say some days u can't leave ur house, do u mean because of urgency? if so, i would say u are not totally healed. have you let your doctor know about this and the fatigue? if you are not totally healed, i would suggest maybe trying a rowasa enema nightly. when i was partially healed, i added it to my regimin and it made a big difference. i hope this helps and you can feel better soon!
Posted 6/20/2011 8:16 PM (GMT 0)
from what I have gathered here, it seems everyone's remission is different.

My best remissions are when I have fully formed bm's, urgency is not too much of a problem (meaning I can hold it for hours if I need to and not be uncomfortable), no blood and go once a day (I used to go every day at 10:30 am)

I would be happy now to have no blood, a couple of bm's a day, not much urgency and be mostly formed.
Posted 6/20/2011 9:19 PM (GMT 0)
Normal...hmmm what is normal...to me its only having to go to the bathroom 2x day and without having to feel like you've got 10 seconds to get there. No blood...not so much cramping and gas. Being able to eat things without "paying for it" later (that may never happen again) And normal would be not having to take all kinds of meds but that for sure will never happen again. <sigh>
Posted 6/20/2011 9:58 PM (GMT 0)
Well, thank you guys for posting. Sorry to hear that to some degree "normal" could be nothing like before UC. My GI doctor thinks that any improvement is something to celebrate and until now I didn't quite understand his thinking. My bathroom trips are less for sure.. but some days it is urgent and frequent still. I don't know what I can or cannot eat without paying for it later just yet. From the sounds of it, you guys are not in total remission either? What do you think of the SCD diet? I was reading other posts about this and even though it would sadden me to give up many things I love to eat, if it made a difference in my new lifestyle may be worth a try? I feel like I am living a completely compromised life right now.
Posted 6/20/2011 11:09 PM (GMT 0)
I'm not in remission at the moment and I just joined this forum a few days ago. I was diagnosed over two years ago I'm feeling better than I was a week ago though and hope to continue this trend. I had never heard of SCD diet until a few days ago...I don't think I'm at the point where I want to give up so much. I try to limit my dairy and raw vegs which seem to give me a problem. I was told on here to try to give up dairy and wheat/gluten. I'm not even at that point yet and not sure I could do it anyway (I love bread and pasta). I will say that you should ask your doctor for rowasa enemas...they have really helped me within just a few days on two seperate occasions and then on here I was told to taper down to only twice a week instead of nightly after 3 weeks which I am going to do. I've also started back up my probiotics and am taking alot more than I was. For me this has really helped.
Posted 6/20/2011 11:39 PM (GMT 0)
Recent, I think it's reasonable to hope for remission that will be like pre-UC.
For me, remission might include having 2-3 bms a day, but that would be because I've had UC so long that my colon is badly scarred, and the sigmoid colon is completely smooth, without any of the wrinkles and whatnot.... stool doesn't move through it the way it used to. (Not that I can remember very well....! lol)
Since my diagnosis, I gave birth to two boys, took up horseback riding and singing... have been in a number of concerts and recitals. Have my life choices been different because of UC......? Hard to say, but I will state that I don't feel my life is limited.
DO I have limited times, when flaring....? yes.

Some folks have found amazing help through the SCD..... I have not found diet to affect my symptoms much; I stay away from "scratchy" raw things when flaring, (raw fruits or veggies, salads, nuts, any kind of corn/popcorn...) and gassy or greasy things,. In remission, my choices are not limited.

I would second sherbear's suggestion of the Rowasa enemas. Many have found them to be a very effective way to heal.

There is a long learning process with UC, and because we tend to be so different, we each need to learn our own bodies. I've learned to jump on any sign of a flare more quickly, and avert them.

Read old posts here, read ccfa.org for basic disease info, and.... you'll have a great start in taking care of yourself!
Posted 6/21/2011 4:31 AM (GMT 0)
ASK YOUR DOCTOR FOR RECTAL MEDS.......RETENTION ENEMAS ARE YOUR BEST BET!

not yelling, just strongly suggesting...

My normal is pretty much, well....normal...

.

q

Posted 6/21/2011 9:14 PM (GMT 0)
After several years of dealing with some level of active disease and a doctor who offered little hope for feeling "normal" again I began to believe I would never be back to my pre-UC self.  I eventually went to a different doctor and his goal was to get me into full remission.  He worked with me and now I have finally reached it.  I am in remission and everything is normal - I feel like I did before I was ever diagnosed. 
Posted 6/22/2011 1:26 PM (GMT 0)
Thatfield,
What was his treatment plan? If you don't mind me asking... I am reading about all sorts of things my doctor hasn't even mentioned yet.. so I am wondering if it is something I should bring up to him to go along with the Lialda daily.. I know everyone swears by the enemas on here, but I just can't bring myself to do that.. maybe I am not at the point of that yet? I would truly love a different approach if there is something that works as well and is not a steroid.. :)
Posted 6/22/2011 3:23 PM (GMT 0)
I read someone's definition on Yahoo Answers, saying remission means it's like you don't have UC at all. Back to normal, don't even have to think about it. So I guess that's a good definition of complete remission. If you still have a few symptoms, I'd call it partial remission.
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