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Ulcerative Colitis
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Posted 11/6/2008 12:27 AM (GMT 0)
Question for you all who have been dealing with this a long time.  I think i am currently starting to have my 3rd flare ever (but second one this year).  My first one this year was during my pregnancy and it lasted 2 mos.  I just recently had a colonoscopy and they said it spread to "pancolitis".  The dr. told me there was mild inflammation but that i wasn't flaring.  Then yesterday I noticed blood and mucus in the stool again accompanied with the nausea and mild urgency (nothing like the last flare though) but I had bloodwork done on saturday that showed that all my inflammatory markers were normal.  My questions are these:  When you get diagnosed with pancolitis is that forever or does your colon heal to where you're just back to ulcerative proctitis (what i was originally diagnosed with).  Also my dr. currently wants to try Rowasa enemas. Just wondering if that helped anyone and how quickly it helped you with a mild flare and if you had any problems with your insurance covering it.  i know these prob. seem like silly questions but i just don't know much about this disease and I feel better asking the real experts (the ones who deal with this daily).  Thanks!!!

 

Posted 11/6/2008 1:11 AM (GMT 0)
I can't speak for the pancolitis part of it, but I have used the Rowasa. There is a generic for it called Mesalamine, which is what I use. No problem with insurance covering it. I can't really decide if it helps me or not. Sometimes it does and other times it doesn't. It does seem to help a little more when I have a flare as compared to just maintenance therapy. I also take Asacol.

I continue to have blood, mucus, cramping and urgency, even though I don't have a flare. I guess I've just gotten used to it. I do find that I have horrible gas the next morning (I take it at night before bed) and am bloated when I use the Rowasa. I asked my Dr. about it and he said it's normal and could take antacids or gas pills if I wanted to. Those don't seem to help much either way. Maybe the Rowasa will be more helpful for you. Best of luck to you!
Posted 11/6/2008 3:44 AM (GMT 0)
I'm confused - why are both of you saying that you're not flaring when you have mild inflammation (JEG) and blood, mucus, cramping, and urgency (Kaivee)?  What you're describing is flaring.

Posted 11/6/2008 5:07 AM (GMT 0)

Kaivee said...

I continue to have blood, mucus, cramping and urgency, even though I don't have a flare. I guess I've just gotten used to it. I do find that I have horrible gas the next morning (I take it at night before bed) and am bloated when I use the Rowasa. I asked my Dr. about it and he said it's normal and could take antacids or gas pills if I wanted to. Those don't seem to help much either way. Maybe the Rowasa will be more helpful for you. Best of luck to you!

Ah, ya, you are definitely flaring with having those symptoms...I'm confused too as to why you say you're not flaring?

:)
Posted 11/6/2008 12:22 PM (GMT 0)
Hey no question here is too silly! Rowasa has helped many of people on here, myself included when I could tolerate mesalamines that is. They work fairly fast for a mild flare. I have never had any problem with my insurance covering them and I have Blue Care Network which seems to be the MOST fickle insurance company EVER!

Kaivee, you ARE flaring if you are having those symptoms. You should never just accept them as part of having UC. If you are still bleeding while being on Rowasa, you can ask the doc for steroid enemas or the foam to get it under control and then once it's under control go back to the Rowasa.
Posted 11/6/2008 3:34 PM (GMT 0)
The only reason I didn't think I was flaring was because when I asked about the mild inflammation in my colon the dr. said it wasn't a flare. Plus all my blood work came back normal. I guess like I said before I don't really feel like I know enough about all of this to know what "flaring" is. All I know is in the past when I had flare ups the blood work showed the inflammation. The blood work was done 2 weeks after the colonoscopy where they saw mild inflammation throughout my entire colon. I guess I just accepted it as I have UC and my colon will always be inflammed? I don't know. I just want to feel better. I just had blood mucus yesterday in my stool, but then today just D 3x, but no blood/mucus. I just don't know. I feel pretty confused right now. Plus if I had pancolitis, would an enema help?
Posted 11/6/2008 5:00 PM (GMT 0)
I guess I say I'm not flaring because I've had it much worse than I do right now. Maybe I don't know anymore what is normal?? I was "normal" when I was on Prednisone, but absolutely hated it and it made me crazy (I also have depression and it really made things horrible for me). I was weaned off of it and I maintained normality fo several months, now I think about it, but this September would be when things started getting worse again for me. I don't want the Prednisone again, so I've just learned to deal with it.
Posted 11/6/2008 5:14 PM (GMT 0)

If both of you have any symptoms at all, you're flaring.  I'm surprised to hear that a doctor would say that you weren't. 

For pancolitis, an enema would help but would not replace your oral meds.  It would just give some extra help to the rectal area and maybe a little higher.  I had been treating proctitis with enemas when I didn't know that the inflammation had spread (to pancolitis).  When I had a colonoscopy, my doc said the area that was the least inflammed was the rectal area (which I was treating with enemas).

Kaivee - I wouldn't just deal with it and let the symtoms continue.  You could be doing more damage to your colon and develop other complications.  Just my opinion.


Posted 11/6/2008 6:30 PM (GMT 0)
JEG - just a thought. I always go to the doctor when I start feeling ill. I start to have D and light pain. My markers are normally higher than normal but just slightly. THEN I start feeling worse. For example I got my blood work down on Friday when I thought I might be flairng or I might have a stomach bug from my husband. I was sick but okay. Now its Wednesday and I feel like crap. I am going liquid my brain isn't working and my whole body hurts. I know if I got my blood done today it would be much higher...........It is easy to say that you will always be sick but I don't think that is often the case. When I first started Remicade I felt perfect. Better then I had been since I was 14 or so. I'm 27 now. I'm just saying don't give up and get depressed.

Also I have Pancolits and I have never taken rectal meds because my doctor says there is no point. I also have no inflammation in my rectum at all though.
Posted 11/6/2008 6:49 PM (GMT 0)
Inflammation, especially visible, means one is flaring...there are varying degrees and symptoms with all...most of us don't recognise them until they're obvious. Hence, the delay in dealing with them early.

Definitely get back on the rectal meds...

quincy
Posted 11/6/2008 6:53 PM (GMT 0)
I wondered too though, if it is pancolitis, does it make sense to treat rectally?
Posted 11/6/2008 6:55 PM (GMT 0)
well, considering UC starts at the rectum and will be the first to heal and the last to heal...YES11

rectal meds are meant to treat the lower part of the colon...where the oral meds cannot reach.

We discuss this matter often...

Use the rectal meds.

Is the colazal the only oral med 5ASA you've been on?

quincy
Posted 11/6/2008 6:59 PM (GMT 0)
You're basically just giving yourself an extra shot of medicine that only helps the rectal area. Even though it won't help the rest of your colon, every little bit of improvement helps. Like I said earlier, this should be used in addition to your oral meds.
Posted 11/6/2008 7:04 PM (GMT 0)
It's important to remember there are different degrees of flares and each flare can vary from another with symptoms and severity, but none the less having any symptoms is considered a flare and any good GI would recognize that...flares are not based on tests (especially blood) alone....symptoms count more than anything especially bleeding symptoms...of course, one can have both IBS and an IBD and maybe the IBD is somewhat or even totally controlled but symptoms of IBS (which are similar except no bleeding or inflammation) could be active if you have both IBS and an IBD that is.

:)
Posted 11/6/2008 7:06 PM (GMT 0)
True on the IBS point....but the IBS won't increase/continue as does a flare.

q
Posted 11/6/2008 7:15 PM (GMT 0)
so i could have inflammation throughout my entire colon but only the rectal area would be causing the problems i'm having and the further up it moves the worse the flare. so i should treat it where it would start which would be teh rectum. so the rowasa could help stop the flare before it gets worse? and yes, the only oral meds i've been on have been colazal. unless i was on pred too, basically with the last flare that lasted 2 mos i tried everything, entocort, cortafoam, canasa, and finally prednisone. it was the only thing that stopped the flare. and then it went away, but i'm 2 mos post partum and i'm thinking the hormone fluctuations might be the cause of this one. who knows, i just don't want to be stuck at home in the bathroom for 2 mos!
Posted 11/6/2008 7:26 PM (GMT 0)
JEG - That's not exactly how it works. The severity of your inflammation is what determines the severity of your flare. You could have really severe inflammation in 2 cemtimeters of your rectum and you're life could be miserable OR you could have very mild inflammation throughout your whole colon and you're life would be quite bearable. See what I'm saying?

The oral meds tend to not get all the way down to the rectum to heal it, so its a good idea to treat your inflammation from the other end by using enemas. Does that make sense?
Posted 11/6/2008 7:30 PM (GMT 0)
got it. it all makes sense. i just need to understand this disease better. thanks for the help.
Posted 11/6/2008 7:35 PM (GMT 0)
Thanks to all for your feedback. I will have to be more diligent in my use of the enemas and see if it improves. If not, then I'll have to go back on Prednisone to get it under control.
Posted 11/6/2008 7:45 PM (GMT 0)
Glad to help. By the way, JEG, congrats on the birth of your baby girl!
Posted 11/6/2008 7:55 PM (GMT 0)
oh thanks! i love being a new mommy :)
Posted 11/6/2008 8:07 PM (GMT 0)

quincy said...
True on the IBS point....but the IBS won't increase/continue as does a flare.

q

Well IBS is somewhat poorly understood as well, my sister has IBS only and she goes through bad spells for periods of time (similar to flaring) and sometimes her IBS acts up worse and sometimes it's mild...so really, who's to say.

:)

Posted 11/6/2008 8:10 PM (GMT 0)
that's what they first diagnosed me with but once the blood started and they did a colonoscopy they found it to be much worse. it originally only started as ulcerative proctitis. is a 2 month flare what possibly caused it to go from just the proctitis to pancolitis? and will it ever be just ulcerative proctitis again? or does it work like that? i'm sorry i know i sound like such an idiot, but i just don't fully understand this disease. i'm looking into finding more info on how it works.
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