HealingWell
Search Close Search
☰

Really would like some feedback...what do you guys make of this?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/18/2010 5:09 PM (GMT 0)
Hi there

A little history. I was diagnosed with UC in 1999 - left-sided, moderate at the time. Have been in and out of flares over the years and have been lucky enough to have been able to control them with various forms and amounts of mesalamine and very fews bouts of steriods. Flares always consist of lots of blood, urgency, pain and many runs to the bathroom.

After I had my son last year I had a BAD flare and did a round of steriods to put it in remission. For about 2 months I had perfect poos - formed, regular, once per day, no blood or mucus. Since then, each day I have one or two loose to very loose (at times watery) stools. Sometimes with a bit of mucus. This state of affairs has continued for the last 11 months. Sometimes I have bloating and gas and sometimes not - but NO blood, NO real urgency and NO worsening symptoms. I am only on a low maintenance dose of asaol etc. Basically it is easy to live with the symptoms I have now.

So, do you think I am in a low grade flare that doesnt get worse? Does anyone else really never see "normal" poos? Would you do anything about this or just wait and see what happens? I guess I want to see if anyone else considers this remission cause for me it kind of is.

Thanks for the feedback, jo
Posted 3/18/2010 5:30 PM (GMT 0)
I think you have a low grade flare. The reason I think so is that you are describing how I felt for most of 2009 espeically the few months before the really awful flare I am in now and little did I know my UC had been spreading from mild lower left to whole colon. If I were you I would maybe ask your doctor about increasing your mesalamine to squash the flare all the way down. I think it's not good to let low level flares fester. Especially if you personally find complete remission to be regular poos. I think what happened to me was that I was inflammed, kind of how you are describing then in December I got a terrible cold, two stomach bugs back to back and things went to all heck from there. So, that's my 2 cents. Squish it! Keel it with fire! Ok, maybe not fire... ;o)
Posted 3/18/2010 6:04 PM (GMT 0)
I also think that it sounds like you're in a very low-grade flare. I'd probably live with it too, if I were on a max dose of mesalamine and using enemas nightly, but since you're on a low dose of asacol (and I'm assuming you're not on enemas), I'd either add enemas nightly for a while and see if that helps, up the asacol, or do both.
Posted 3/18/2010 6:06 PM (GMT 0)
I agree with Jennifer. I would talk to your doctor about upping your asacol. You also could have IBS in addition to UC. Adding some fiber might help but be careful with how much and how quickly you add it. Your doctor could advise you on that.
Posted 3/18/2010 6:10 PM (GMT 0)
I agree with the others-I would up the asacol and think about adding a rectal to get things settled back down. My flares have never gone the way yours do, and if they did I could see just living with it, but I think it would be a good idea to try and squelch it!
Posted 3/18/2010 6:15 PM (GMT 0)
I am in the same boat..was living with it but then advised on this board not to let constant inflammation linger on..so im squishing it..im only goig 1-2 times a day but its not normal..its urgent and skinny poos..so i started the enemas nightly for the last week..so far no difference though.
Posted 3/18/2010 6:25 PM (GMT 0)
Hard to say, each flare can vary from flare to flare, symptoms are not always the same with every flare and there can be different degrees from mild to severe with each flare as well.

:)
Posted 3/18/2010 7:26 PM (GMT 0)
Ask your GI to rx rowasa or canasa for 30 days to see if it will make a difference, it very well may. Feel better:)
Posted 3/18/2010 11:22 PM (GMT 0)
I always had this kind of gut behavior you describe, never complete remission. I might have used enemas forever to be better still, but it was so nice not to have to go through that at night and I found it was a manageable balance.
Posted 3/19/2010 2:35 AM (GMT 0)
Thank you for all your advice. My difficulty is that currently I am pregnant. With my last pregnancy I was on higher doses of mesalamine (asacol, enemas etc) so I know I can take them BUT I was also flaring more severely and so I was more inclined to take them (ie. I was bleeding. For me the most important indicator of a flare is blood, lots of blood). Anyhow, I am motivated to keep my doses low as long as I am not moving towards a bigger and better flare. I have also been like Peety for the last few years - always having these mild symptoms except for immediately following a round of steriods. Kind of wish I could get a peek inside to know the level of inflammation. I will call my doc and check in with him.

Peety, did you find that these mild symtoms would remain stable for long periods?

Thanks again all
Posted 3/19/2010 3:38 AM (GMT 0)
Not long enough. I flared about once a year, sometimes more, and it was about 8-10 week ordeal each time (prednisone would zap the flare, but it took that long to taper off and get rid of the moonface). The blood never bothered me, it was urgency that defined a flare for me.

I am so glad to be on Remicade.
✚ New Topic ✚ Reply