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Ulcerative Colitis
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Posted 10/2/2013 6:11 PM (GMT 0)
UC is so unpredictable. Just when I think I am getting out of my flare and things are improving, there it is; Blood and mucus in the toilet. Or all it seem like someone has to do is ask how the UC is, and the next day there's that darn blood. I just don't understand what happens to the colon all of a sudden to make it bleed again. As I said, no blood, no mucus, along with less time in the bathroom. One bad move with diet or stress and magically BLOOD. Now I'm not talking about lots of blood, and it does seem that I am better than a month ago, but just curious if this is how it goes with most of is. Seems like it may be hard to really be consistently without some amount of blood. Maybe I'm just expecting too much with this remission thing. Maybe I'm close; who knows.
Posted 10/2/2013 6:23 PM (GMT 0)
It could be that your experience with this type of flare isn't recognised as yet.

You're using Asacol, UCeris and Cortifoam? Maybe adding in a mesalamine enema could help.

Are you not on any probiotics? I suggest you add that too.

q
Posted 10/2/2013 6:29 PM (GMT 0)
Quincy, I did actually start the enemas again about a week ago. They do seem to help a bit. When I can retain them, i do them at night and the cortifoam usually in the afternoon. You just reminded me that I need to update my sig. Thanks.
Posted 10/2/2013 6:30 PM (GMT 0)
Happens to me all the time. Every now and then I start getting optimistic...things seem to be going well for a few days, then for no reason at all the very next day I have a terrible day...or even just a significant decline from the previous day.

It always brings my mood back down to earth after feeling good and excited that I'm half way normal again...it really sucks and it makes me want to break something or curl up in a corner and give up, but of course...those are not options. :)
Posted 10/2/2013 6:35 PM (GMT 0)
Quincy, sig is now fixed. UChater, it's strange how that seems to happen. It's so depressing when that happens, you think you are on track and may be doing something right, when the UC alerts you that it has no intention of going away.
Posted 10/2/2013 6:53 PM (GMT 0)
I'm generally an optimistic person, but it is getting really, really hard to continue to be one after acquiring uc. I'm 1.5 years into this and it's been one heck of a struggle. Another flareup started at the beginning of 2013 that is mostly in control, but I just can't seem to shake the darn pred. I added 6mp, recently remicade, and I am hoping that's my saving grace. I am healing, and have noticed improvements since starting remicade but the key question is has it been 'enough', the kind of thing that leaves me tossing and turning at night. Just 12.5 mgs of pred left until I reach freedom lol. I figure give the remicade a few more weeks and try to taper slowly the rest of the way off of pred (I've done loading doses 1 and 2, with number 3 in early Nov).
Posted 10/2/2013 7:56 PM (GMT 0)
IPOOP, I have the same worries, is what I'm doing enough? I am so afraid to change any of my meds, because of how nasty my current flare was at its peak. I know I can't stay on cortifoam but do I really want to take the chance now of stopping it. I just stopped Uceris, and am still really worried about things going back to peak flare. Since I am on the max dose of Asacol HD, I also wonder when it's safe to back it down a bit. Maybe when I can go a month or so without urgency and blood, that may be when I make any changes.
Posted 10/2/2013 8:41 PM (GMT 0)
Where exactly is your UC located?

What type of bms are you having?

How long on the cortifoam?
and were you on the mesalamine before and then just started again?

You don't mention fibre supplements or probiotics.

q
Posted 10/2/2013 9:02 PM (GMT 0)
My UC extends up about 25cm then is patchy up to 40. Even though it is patchy, they still diagnosed it as UC with a biopsy. I was previously on the enemas along with Pentasa for about 5 years. I was not consistent with the enemas at all. When I saw no improvement, another GI gave me Asacol HD, Uceris and Cortifoam which I have been on for 2 months. As I mentioned, I have just started the enemas again.
Posted 10/3/2013 5:43 AM (GMT 0)
I'm curious about your signature...are you taking 4000mg of vitamin C or 4000 IU of vitamin D?

So, you're going just once a day? that's definite improvement...so something's working.

q
Posted 10/3/2013 9:47 AM (GMT 0)
No, I wish I was just going once a day. Usually about 4 or 5 times in the morning. For the vitamin d amount, I will check to make sure I have that right.
Posted 10/3/2013 10:23 AM (GMT 0)
Hi Lr21

Look i feel exactly the same as my experience has been very similar. I was diagnosed 18mnths ago and i have only been in remission since for 2 solid months and every time the only thing that gives me relief is prednisone which i dont get all the nasty side effects but brings my immune system down so i have a stream of reccurant UTI's.

I have given up planning holidays or really anything as it just impedes my life so much that i end up nearly always having to cancel. It is a horrible illness and it has ruined my life to be honest. Its such a letdown when u realise that when u think your on your way to being / feeling half normal it is right there to remind you that there is no escape..

I know the feeling xx
Posted 10/3/2013 12:40 PM (GMT 0)
I kind of feel the same way but think you just gotta keep at it until you find the right diet and drug combo that works for that minute. Gah! What might work on day won't the next! It's so goofy!

You are right there are always reminders that we are sick people!
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