Few questions about UC

Past few weeks I've done quite a bit of reading on this disease. I try to keep it limited to an hour or 2 a day as I don't want the thoughts to dominate my mind.

I've been diagnosed with Severe/Moderate UC about a month ago or so. But I'm pretty sure I've had it for few years as urgency was an issue. For past 4-5 years I just can't hold it very well (usually have 5-10 min to get to the bathroom).

about 8 months ago I started noticing blood in the stool which eventually lead to a flare up. I don't really have any stomach pains. Mostly Urgency, Diahrea, Bleeding and every now and than I will get this deep anal cramp that kind of numbs my entire body (which is pretty scary).

Anyways, my doctor put me on Steroids but I made a mistake. I didn't take 4 at a time per day, and ended up taking 4 throughout. Symptoms got better (less diahrea/solid stool) and less blood. I'm slowly getting off the steroids (my last week taking .5 pill).

Doctor said to take Lialda medication to control the flares. I told him I was a bit skeptical about taking meds on daily basis and have concerns about long term effects. Although in my previous thread many of you guys did say that this is a very mild drug......I'm still concerned. I've seen way too many people have their health take a dive after starting medication and as you can imagine, I'm a bit scared. Also the fact that I have extensive experience working with Pharma companies .....simply makes me VERY scared.

My doctor said that if I don't take Lialda my UC will flare up and most likely spread. Also it can lead to much worse health effects (cancer etc).

HOWEVER, I've read many threads here and after researching other sites I noticed that flare ups cannot be stopped or controlled. Many people that take the medication still experience flare ups etc.

So I'm trying to figure out what is the point of taking it exactly? Is it to control the flare ups? Doesn't seem like that's the case. Or is it to stop the disease from spreading and further complications?

Also I noticed that even though I'm not going to the bathroom as much as during a flare up, I still have Diarrhea/Blood at least once a day.

So here is few questions I have.
Q1) Is Diarrhea/Blood symptoms that are here to stay? Or just during flare ups?
Q2) What are the risks of NOT taking the medication (Lialda)
Q3) What should I expect in the future as this disease progresses (if I start taking meds or if I don't).
Q4) Should the steroids have stopped the bleeding/diarrhea all together?

I only had 1 flare up and I guess one can say that perhaps I'm still in kind of a denial phase here. I'm willing to wait out, eat healthier and stay away from foods that trigger upsets and just kind of see how it goes.

It just felt like my doctor was VERY fast to wip out the meds. But I'm not doubting him, he has plenty of experience dealing with this.....just kind of a gut feeling that perhaps it's a bit too soon?

I'm kind of willing to take this disease on head on and see how it goes.

Q5) Am I risking my life/disease spreading and future complication by not taking medication and kind of riding it out to see if the flare up comes again?

Sorry to start another thread about this. This is all very new to me.

PS. I have a doctors appointment in few weeks with a doctor and I do need to ask the location and size of inflammation (based on my last thread).

Thanks in Advance!

Post Edited (ChaoSki) : 1/9/2013 1:06:40 PM (GMT-7)

Rule of Thumb - Something works for X, will not work for you. This variation is way bigger that you can think. So its always good to take everyone's perspective.

The meds like Lialda do not control flare, they keep you in remission. When you are in flare, I have not found anything other than Pred that can control flare quickly.

Other questions are well answered by Sherry.

Yes, you're in a flare. Anytime you see bleeding and/or D, you're flaring - unless the bleeding is from hemorrhoids. If you don't want to do the oral medications, have you considered doing rectal instead? Rectal meds are less systemic then oral. However, if you have it further then the sigmoid, rectal meds won't reach further in and there is where oral meds come into play. But whether or not you want to start on meds are up to you and your tolerance level.

A few thoughts before I answer your questions:
I think it was perhaps too soon to put you on steroids. I don't think it was too soon to put you on Lialda. And I also think you should have been given mesalamine enemas. Like Sherry said, what you see here are mostly people struggling with UC. By-in-large, people like me, who easily manage their UC, aren't on sites like this. I've still just had the one flare in which I was diagnosed. I'm completely symptom-free right now and had a c-scope in October 2011 that showed zero inflammation. But I'm still on my meds (details in sig) and have ZERO plans of stopping them.

However, I had no period of denial when I was diagnosed. I was just relieved to finally know what was wrong with me and that it was something treatable. I've taken my meds as prescribed from day one. But I also educated myself about the risks, and felt completely comfortable with the mesalamine-based drugs. They really are quite safe for those who are not allergic or intolerant to mesalamine. While I know there are UCers who just don't respond well to mesalamine, I think I helped myself a LOT by taking my meds as prescribed. One of the biggest reasons for flares is non-compliance with meds. And I think that mesalamines can become less effective over time when they're not used correctly, based on things I've seen here.

Q1) Is Diarrhea/Blood symptoms that are here to stay? Or just during flare ups?
You should only have diarrhea and blood when you're flaring. My bowel function is normal.

Q2) What are the risks of NOT taking the medication (Lialda)
Honestly, the ultimate risk is ending up with a colon so inflamed that it perforates and you die, unless you can control your UC some other way.

Q3) What should I expect in the future as this disease progresses?
You really can't expect anything when it comes to UC. Some people respond well to meds, some don't. Some end up with colectomies, some have years and years of remission. Some flare every year or so and have remission in between flares. Some can manage their disease with mesalamine, some have to use "big gun" drugs like remicade. Who knows what the course of your disease will be like.

Q4) Should the steroids have stopped the bleeding/diarrhea all together?
For some people they will, for others, they won't.

Q5) Am I risking my life/disease spreading and future complication by not taking medication and kind of riding it out to see if the flare up comes again?
I think you are. Maybe not your life, but I do think you could end up having a tougher time managing your disease in the long run if you don't take the Lialda.

ETA that I disagree with deltaforce that mesalamine (Lialda) doesn't control flares.  It does, for plenty of people with UC.  Several studies show that it does induce remission in fairly high numbers of UCers.

Since the flare isn't that bad, I think you should start the Lialda now and get mesalamine enemas. Because your symptoms aren't that bad, there's a REALLY good chance the oral + rectal combo will pull you completely out of the flare.

Steroids come with some potentially very, very terrible side effects.

It's totally normal for your poop to not be consistent when you're flaring, especially if it's mild.  If it's severe flare, it's pretty much horrible all the time no matter what.

and push for the rectal 5ASA retention enemas asap. it doesn't matter if the doc didn't suggest them. Many docs don't because there is a commitment involved and patients can be averse to that type of regimen.

Still request and say you want to try them. I've never been on prednisone....ever. not bad for a 24 year run.

q

I think you should take the Liada as well. It's a pretty safe drug. Then if it doesn't work, at least you know you tried.

I've been on Mesasal which is the same basic drug for a year. Also salofalk enemas and salofalk suppositories (same drug). My dose of the oral is 2000mg twice a day. I've taken it religiously, the whole year since diagnosis but still ended up in an uncontrollable flare, hospitalized, blood transfusion, IV prednisone...awful, and have now started Imuran. I say take it as directed, so if things go bad, you at least know you gave the 'safer' treatment a shot.

My drs even say Imuran is safer than prednisone.

I'm seldom getting any form to my stool. maybe twice in three days, but I'm having less than 10 BMs compared to 22 per day.

I learned from your questions, and I'm glad you asked them. I'm lost too.

and some people remain in denial justifying symptoms until it's serious enough according to their measuring stick of tolerance.....then they get scared and desperate.

ChaoSki...you have UC...you have to deal with it, but you are making decisions based on a skewed belief.

q

So I guess it comes down to 2 things.
a) don't take meds and see if disease gets worse (take my chances)
b) take meds and get it under control but possibly risk other health issues down the road (take my chances).

You should definitely take something for maintenance. There are some of us lucky ones who are allergic to the mild maintenance meds or find that those meds do absolutely nothing for our symptoms. We are the lucky ones because there is no decision to be made: my allergy precludes taking the milder maintenance meds.

But that doesn't mean I take nothing at all. Certain probiotics and plantago (psyllium seed powder) have been shown in clinical trials to maintain remission just as well as 5-ASAs. I would be lost without my supplements. There are others who find meds totally ineffective for maintaining remission but use certain supplements such as VSL#3 to prevent symptoms. And if symptoms show up they take mesalamine rectal meds as needed.

But these supplements would not be nearly as effective for us if not used in conjunction with diet modification. So I recommend a food diary to help identify any food triggers. Once those are isolated then it is much easier to maintain remission via supplements.

Of course if in your case supplements and diet do not maintain remission then you will need to get on maintenance meds.

So I did start taking Lialda and noticed it helped.

I also went back to the doctor after blood test. He said my Vitamin B was low so he asked to start taking it.

I asked him where is the inflamation and he said it's close to the rectum. But he was skeptical about me taking anal medication as I was skeptical about Oral ones (so he didn't even bother).

he did say that anal would be much better and in the end recommended both.

I've been doing both past few weeks and things are well. I haven't seen blood in few weeks and I go to the bathroom normal (2-3 times a day).

Urgency is still an issue. He did say that both medications would help in this regard, but I haven't seen/experienced that.

I started to do Lialda every other day too. I'm going to ask him if I can just do rectal meds only.

What else can I do about urgency? So far Maryjane is the only thing that helps it.. :/

I think that since you still have urgency issues, you should stay on Lialda every day. And on the rectal meds every day. You're definitely improving and it can take some time for urgency to fully resolve.

When you're in a solid remission, then you can start thinking about tapering. But I wouldn't take Lialda only every other day, I'd take it every day, but at a lower dose.