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Ulcerative Colitis Question

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Ulcerative Colitis
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Posted 8/5/2009 8:28 PM (GMT 0)
Hi Guys,

I am a newly diagnosed patient (late July). I had a colonoscopy and moderate/servere UC was diagnosed. My doctor started me on Lialda (4x a day) and Rowasa enema (at night). My bowel movements improved right away and my frequency has gone back down to my normal 1-2 a day. It has been a little over 2 weeks now and I am feeling much better, but I still see some mild blood every other day or so (always in my 2nd bowel movement). Is this normal? Am I just being too anxious? How long before I should expect the blood to be totally gone?

Thanks as always.
Posted 8/5/2009 8:32 PM (GMT 0)
Hi and welcome! It sounds like you are doing really well! I ended having to resort to prednisone to get me out of my first flare...I was *almost* there using Asacol (same active ingredient as Lialda) and Rowasa, then got a tummy bug that threw me right back into it. At any rate, that's great the meds worked for you so quickly!

I'd say that you don't need to worry too much about the little bit of blood you're seeing right now. As long as it's not enough to make you anemic, you're probably ok. Yeah, you're not totally in remission yet, so keep up with the nightly enemas. As to how long until the blood disappears...well, that just depends! For some (like me) the bleeding is the first thing to stop (before the diarrhea and urgency), and for others, it's the last.
Posted 8/5/2009 9:23 PM (GMT 0)
Hi..welcome to the forum NiRo! Sounds as though you're improving nicely!

You have a way to go yet before the colon heals after starting the meds...you should be on them until ALL symptoms stop, then consider to taper the rectal meds to every other night after another week of remaining normal...

Patience...as my doc always said...paid off for me.

You could also consider to be using probiotics and maybe a fibre supplement..they work well together.

quincy
Posted 8/5/2009 9:32 PM (GMT 0)
Thanks for the replies. I just want to make it very clear I have no thoughts of taking myself off the meds. I realize that I will probably have to take the Lialda for life (hopefully not the same quantity though) as a maintenance drug. I have also started taking a probiotic - Align and do take fish oil daily. The probiotic seems to be helping as well in terms of regulating and helping with gas/flatulence.

I was just curious as to how quickly people respond to the meds as they are doing most of the work. I was also a little concerned because I thought that the blood would be the first thing to go. I guess I am a little different than the "norm". In my last doctor visit, the doctor was happy with my results thus far and said that it can take 6-8 weeks before the Lialda really kicks in. He mentioned tapering off both if and when I get into remission.

When I first heard the news, I was definitely down about it, but then after doing some reading and researching, realized that this will be a life long battle - with periods of flares up and remission. I think I have accepted this for the most part, but it still seems all a little scary at times.
Posted 8/5/2009 9:40 PM (GMT 0)
Hi..yeah, the diagnosis sucks for sure...I felt the same way, but because I had a great doc, it was much better.

Your goal shouldn't be to go off the meds according to the doctor..... tapering to a maintenance dosage should be the goal. That's of course based on my experience...Yes, I tried to get off the meds but eventually flared and it was better to do maintenance.

Besically...your butt rules. If you taper too fast, you'll know soon enough. I've done lots of shedules with tapering..from slow, slower to fast and faster...and whatever my butt decides is what I go at.

Where in the colon is your UC located...throughout or limited?

You are on a high dosage of Lialda...you can eventually taper to a maintenance...

What were your symptoms when you flared before diagnosis?

The bleeding means your tissue is fragile and once that stops, the inflammation still has to go through the stages of healing. So, once the bleeding stops, it doesn't mean your flare is over.

Hang tough...patience will truly be your friend.

q
Posted 8/5/2009 9:47 PM (GMT 0)
Wow...I'm kind of surprised to hear your doc mentioning you could taper off both of the meds. Research shows that patients who stay on maintenance meds have flares less often than those that don't. I don't think I'll ever consider going completely off of my meds. Yeah, I'd like to taper my oral med to a lower dose once I've been in remission for a "comfortable" length of time (not sure what that is yet, though!) and I *might* reduce the enema to once weekly. I may think about it if I've been in remission for years, but I've just heard too many stories about people who were enjoying a nice long remission on 5ASA meds, then quit, only flare again and not respond to 5ASAs when they started taking them again and end up having to use a more potent drug with more serious side effects.

I was pretty upset when I was first diagnosed, too. But, I've come to the decision that it's really ok. If I have to move on to stronger drugs to maintain my quality of life, so be it. And if all the meds fail me and I have to have my colon removed, that's ok too. Most people who have a colectomy go on to lead a great life!
Posted 8/5/2009 9:50 PM (GMT 0)
Throughout unfortunately. The biopsies revealed moderate UC in 4/5th's of the colon and mild in the other 1/5.

My symptoms before being diagnosed were quite weird to be honest. I had bleeding for about 1-2 months which I thought was due to hemorrhoids. It would stop with suppositories for a week at a time, but then eventually come back. The worst of my symptoms hit me the week of my colonoscopy, which was having bowel movements 6-8 times a day. I never had any of the abdominal pain that most folks have with UC (thank god). Btw, I am 28 yrs old.

The biggest frustration I have right now is that I am unable to self-administer the enema, so it's quite embarrassing to say the least.

My iron levels were also pretty depleted (my hemoglobin was fine though), so I am also taking some iron supplements. My doctor is actually offering iron via IV (once a week) and I actually might switch to that so I don't have to deal with the iron going through my GI tract.
Posted 8/5/2009 9:54 PM (GMT 0)
Fruitgirl - sorry for the confusion. My doc said that over time (months to years) I can change how often I take the enema (from every day to every other day to 2 days a week) with each step being months at a time. Eventually though, I could stop taking the enema all together was his hope.

As far as the Lialda pills, they are here to stay for life.
Posted 8/5/2009 9:56 PM (GMT 0)
Hi...why are you unable to do the enema? I had to have my husband do my first one. But, if you have someone to do it, that's good!

pancolitis...seems it's fairly mild with your symptoms..which is a good thing.

Did you have your vitamin B12 as well as Vitamin D levels checked as well?

Hope your iron levels improve....

q
Posted 8/5/2009 9:56 PM (GMT 0)

That makes much more sense about your meds!  I started tapering my enema once I had been in a good, solid remission for about 2-3 weeks, and stayed there for a few more weeks before moving to twice weekly.

It sounds like your major problem is bleeding, then. It's weird how some of us have more problems with bleeding and some have more problems with diarrhea, etc. I didn't have a whole lot of bleeding until the diarrhea got really, really, really bad (15-20x/day) and like I said above, it was the first thing that quit. I am also one of the lucky ones taht didn't have pain. My GI was surprised, as I also have pancolitis and b/c I was having so many BMs.

Can I ask why you can't self-administer the enema?

Posted 8/5/2009 10:01 PM (GMT 0)
B12 and Vitamin D levels are great. (I take Vitamins as well, sorry I am working on my signature...)

I really don't know why I can't. It just seems too painful and then once I do get it in, it's very hard to squeeze the whole thing out without being able to see the bag (instructions state I have to be laying on my left side when administering the enema). The doctor actually said he prescribed me the name brand (Rowasa) vs the generic because the name brand has a valve that prevents the liquid from flowing back into the bag, which helps. Maybe I will eventually get to do it myself, but having much trouble right now...
Posted 8/5/2009 10:04 PM (GMT 0)
Are you applying some extra lube to the applicator tip? That can make the insertion go a lot more "smoothly!" :)

So you have a bag? My generic ones are a small, very squish-able bottle. There isn't a valve or anything, but they collapse so easily that nothing flows back in. I basically crush it completely flat.
Posted 8/5/2009 10:09 PM (GMT 0)
It's a bottle actually, sorry - I'm a mess right now in terms of how I am explaining. I haven't tried the lube, I guess I should - is Vaseline good?

The other thing I fear, at least for right now, is that the dear girlfriend who is helping me, she says that even though she tries hard as anything, there is still eventually a little left of the liquid in the bottle. I can't imagine myself doing any better being in an awkward position and all. I figure I'll ask her for her help (she's a darling and says she doesn't mind) until I figure out how to be brave and try on my own.
Posted 8/6/2009 12:36 AM (GMT 0)
Don't worry if you can't get all the liquid out of the enema. I always have a small amount left when I do it.

Also, I would recommend using KY Jelly instead of vaseline, as vaseline is petroleum based and KY is water-based. Using a lubricant makes insertion A LOT easier, so use a lot of lube.

Practice makes perfect, so you'll get a hang of it soon, and it becomes much easier to do.
Posted 8/6/2009 7:21 PM (GMT 0)
Thanks guys for all the help and suggestions - I realize I am in a better place than most. If it were only so easy being PATIENT!! Let's see what happens next... ;)
Posted 8/6/2009 7:39 PM (GMT 0)
NiRo - for me bledding is one of my worst symptoms and it is the very last thing to go away...it sounds like since your other symptoms are improving you are on the right track. I had a similar experience with diagnosis...I thought it was hemorrhoids too because I had just given birth.
Posted 8/6/2009 7:46 PM (GMT 0)
Thatfield - I have a family history of hemorrhoids (my father has been a sufferer since college and is in his 60's now and very healthy). My first bout with hemorrhoids was in 2006, but I had a colonoscopy done (more so because I was nervous) and only mild small internal hemorrhoids was found (no UC). I have had bleeding off and on for the past 3 years which the bleeding going away after a week when using suppositories.

However, this time, starting in early May, the bleeding was pretty persistent with relief for only a week at a time and then more continued bleeding. Like I said earlier, through out this whole time, except for the week of my colonoscopy, my bowel frequency, urges, movements were normal (besides the blood). I then had another colonoscopy which confirmed the UC.

My bleeding has drastically reduced, but is still there (never in my morning bowel movement), but always in my second of the day. I am guessing the source of the bleeding is near the lower part of my rectum as I take 2 Lialda in the morning with breakfast and 2 at night with dinner, but only the enema once at night.
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