Somewhat discouraged

I made a post 2 weeks ago about a mild flare I started to have, and the doctor prescribed me hydrocortisone enema on top of my 1 pill of Lialda per day. Well, after using the hydrocortisone, the following day was disastrous - bloody bowel movements most of the day, so I called him up and he put me back on Rowasa and things slowly started to improve. Unfortunately, they have not gone back to where it was prior to trying hydrocortisone.

Daily, I have about 3-4 BMs per day; most can be attributed to the fact that I just don't sit on the toilet long enough to get all of "it" out. For my first flare ever, the Rowasa kicked in within a few days and my stool started to form. Now it's all soft (not watery), just very, very soft; with the occasional streak of blood but nothing major.

On the 23rd (yesterday) I went back to my GI, told him what was going on and he didn't seem concerned. He upped my Lialda intake to 2 pills per day instead of 1, and told me to continue on the Rowasa. He also told me to try Imodium to bulk the softness up. So far it has done nothing in 2 days.

Today went fine, and I went and did my regular weight-lifting routine and had a bowel movement afterwords with no blood. I had one a little after that, too, with a tad of blood (seems to only come out at the end and in bits, almost like a hemorrhoid).

Now tonight at Christmas Eve I ate with the family, and I have no idea what the heck happened, or what I ate, but I have not been able to make this stomach ache go away and I've had about 5 bloody bowel movements. All contain some stool, but not a whole lot. This is the 1st time stomach pain has come with a flare, albeit I've only had 1 prior to this. Needless to say, it has put me in a bad mood the rest of the evening. I was just at the doctor and now this hits like a train. All my recent blood work and stool samples came back normal, too. I was diagnosed with UC in April of this year, so I'm a newbie with the disease.

I will never take Prednisone, and I told him that at the office after what hydrocortisone has done, and he said that's fine. Can onsets happen this quickly? We're talking in the matter of hours this occurred.

Also, my Lialda bottle says "Take 1 tablet by mouth twice a day." Does this mean I should take 2 at once, or 1 in the morning and then 1 later in the day? Thanks for any advice.

Hello everyone, I'm new to this forum and have read several posts.  Flare-ups are bad at any time, but especially around the holidays.  There is so much stress and so much to do that we don't always take the time to take care of ourselves like we should.  I was diagnosed with UC in 1982 when I was hospitalized with dehydration and amemia.   I have usually had short flare ups with long periods of remission (1 year or more).  I was hospitalized again in 1992, and this year I had to go to the ER two days before Thanksgiving.  I did not get to have Thanksgiving with my family because I was too sick.  Anyway, I have been having a flare-up since March of 2009.  I'm on my third different medication, Colazol, along with prednisone.   It is comforting to find other people who can relate to what I'm going through.  My family has been supportive, but I know they are sick and tired of me being sick and tired!!  I have decided to make an appointement at the Cleveland Clinic for a second opinion.   I think as UC patients we need to be proactive.  Doctors are trained to write prescriptions and don't or can't counsel us on nutrition, diet, stress relief, etc.   I know the meds are important, but I also know there is more that we can and should do as UC sufferers.   Sometimes the side effects from the meds are worse than the UC symptoms!   

I will let everyone know what I find out at the Clevelanc Clinic. 

I hope everyone on this message board has a good holiday season and I look forward to reading and posting more.   

Well I am mostly concerned at how things flared up even worse when he had me add another Lialda pill (though I've been taking them twice at one time and not once every twelve hours, so perhaps that's the problem). I've been on the mesalamine enemas for 2 weeks (tomorrow) so I have no idea why things are getting worse. Perhaps the mesalamine just needs some more time? My first flare where I was diagnosed, the enema helped within a day or two; now we're going on two weeks. I'm afraid to even try the hydrocortisone a try again after what it did. Things have never been normal since I tried it that evening.

about 6 BMs today, 3 of which were mostly mucus and blood.

     I understand why you don't want to go on prednisone but most of us do benefit from a short course of it.  I was becoming prednisone dependent and am now on Remicade and doing so much better.  Have your tried the Cort suppositories?  How far up into your colon is the UC?  If basically in the rectal area, like mine, the Cort suppositories will help a lot.  Hope you feel better soon.

  Ive been flaring for over two months now, sucksssssssssss. Just got put on a two week course of prenisone. Does anyone know if your normally get side effects of prednisione if your only taking for two weeks  40mg tapering down to 10mg?

I have the worst cramps before a movement, especially if its formed. I havent found anything that helps the cramps, i just try and deal with it the best i can. I take rowasa at night but have a hard time holding it in. I think ill try the canasa next.  

lol? you are improving....take that aspect and continue. If you don't learn that your flares last longer than a week....I've had flares where I've had to remain on the nightly enemas for 4 months....you have much more to learn.

Unfortunately, experience of flares is your teacher.

Let me say it plainly.....it is what it is.....you aren't in a bad flare.

REgarding your stomach discomfort, that's normal with mild inflammation and rectal inflammation and some flares limited to that area. I have it often.

My GI prescribed me dicyclomine (Bentyl/Bentylol). I started with 10mg. It helped a LOT.

I suggest you change your perspective somewhat to help with the psychological effects.
Flares suck to be sure, but you have meds to control it. Yes.....it's life-long, but ifyou learn how to use your meds effectively, you'll be in a better place mentally.

quincy

nssg....Absolutely ulcerative proctitis can spread....that's what UC does. Canasa isn't really an effective treatment for helping deal with rectally limited flares...many have stated that fact, and it's unfortunate that a doctor didn't at least prescribe you the retention enemas.
It's sad to hear there are many who aren't able to access meds quickly enough. Awesome there are some such as you who can offer that information to those who may be in the situation you were in.

Oral and rectal meds is really the way to treat UC....no matter if it's limited rectally or farther up or throughout.

5ASA meds are effective although some cannot use them.

Yes, be on top of the information out there......it will help lessen one's distress about UC and can help put into perspective where one might be. But, from wht I've read....the systenuc steroids come out as a treatment far earlier than they need be. Granted, some are severe and truly need them. again...perspective.

Each one of us has extremely differing experiences with symptoms and doctors. Sometimes a doctor can set one up for failure regarding improvement.

I agree that it's hard to compare, but there are some who deem anything worse than normal as a state of emergency and there are some who don't heed any of the common sense advice.



We all learn, be it sooner or later.

quincy