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Ulcerative Colitis
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Posted 12/28/2014 11:49 PM (GMT 0)
I see a lot of members on here have pan colitis. Can someone tell me the symptoms? Is it different than left side colitis? I am healing with pred but keep having pain on left, belly button area and upper right. I am having no D or blood. Just soft stools at this point.

My husband said it could be the nerves in the colon traveling all over, causing pain?

I have horrible fatigue. Have to nap 2 hrs daily. Also don't know where the night sweats are coming from? Pred or flare?

Not sure right now of dx
Posted 12/29/2014 12:22 AM (GMT 0)
Every case is different so it's hard to give you a definitive answer. Generally speaking pancolitis and left sided colitis have pretty much the same symptoms only with pancolitis the same symptoms would just be worse. Pain is very different in everyone. I have had left sided for over four years and have never had pain. Most with pancolitis would usually have more pain than left sided but it is possible for someone with left sided to have more pain than someone with pancolitis.

Are you tapering the pred? That could give you the fatigue but UC can also do that to you all by itself. Same thing with the night sweats. Prednisone can do that to you but it could also be the UC.
Posted 12/29/2014 12:31 AM (GMT 0)
I had pancolitis, and the pain was pretty severe. For me, even through my course of prednisone and for a time afterwards, I had weird shooting pains in different parts of my colon - my GI said it was likely nerves regenerating and that it was a good thing. It definitely got better.

I had night sweats with the pred, but also that was one of my UC symptoms. As my UC spread through the entire colon, I also started having fevers and a really high heart rate. Not sure if that was due to the spread of the UC or the severity of it, but that was a big hallmark for me.

I hope you continue to heal and feel better! How much longer are you on the pred? Good luck!
Posted 12/29/2014 1:27 AM (GMT 0)
Yes tapering on pred. On 30 mg right now for 3 more days. Then I guess 20 then 10.

I guess the only way to know the correct dx is to get that scope again. Thanks
Posted 12/29/2014 1:35 AM (GMT 0)
Diagnosis change depending on a variety of things. You could get diagnosed with left sided, rediagnosed with pancolits, and rediagnosed again with left sided or just proctitus. It just depends on where you are at at the particular time you are "diagnosed".
Posted 12/29/2014 6:43 AM (GMT 0)
My son was dx with pancolitis 8/13, symptoms going back 3+ years including bloody stools. Had flare in 11/13 for a week - started pred. Lialda/Apriso didn't work, switched to remicade 2/14. Currently only on remicade. Started gluten free diet 3/14, think that helped too. Pred lasted about 4 months - he gained weight, hair on arms and legs that later got to normal. Currently only on 8-week remicade regimen, wtih vsl3. So far so good, except for remicade side effects - nose bleed and anxiety (which seems to be getting worst lately), he doesn't like being in crowded places (malls, etc.).
Posted 12/30/2014 4:17 AM (GMT 0)
TinaB, it sounds like you are symptomatic. If tapering the Pred, it could get worse if you are not on maintenance meds...what did they prescribe and do they know it isn't holding you?
What presents as left sided, can advance to other parts of your colon. A comparative colonoscopy reveals if it is advancing UC or Crohns. In our case, it was advancing UC, and the pain was intense for awhile. Fatigue was mostly the Pred withdrawal, but everyone is different. Relook at your tapering schedule, it is unusual and unsafe to go down as you described, unless you have been on a short course of less than a few weeks.
Posted 1/1/2015 4:33 AM (GMT 0)
Hi, I started with the rowasa enemas while tapering. I have asacol but have not been told when to take it. Do you think the enemas will be ok? Now I am scared of flaring again when I get off pred.
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