Diagnosed with UC today, taking Lialda

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confusedgirl22
Regular Member


Date Joined Dec 2007
Total Posts : 228
   Posted 1/2/2009 8:28 PM (GMT -6)   
Hello everyone.

I had a colonoscopy with biopsy last Friday. I was told it was Crohn's. Now the specialist is confirming it is UC. He prescribed me with Lialda. They are expensive drugs but I hear they work. I just started taking them today. Is anyone else taking these drugs? How are they working for you? I'm only 23 years old. I've been having D about 4 times a day. Inflammation was found throughout my colon. Mucous was also found. Dysplasia was also "maybe found in one part of my colon." The pathologist couldn't really tell because that area was inflamed. I'm so scared. :-( I love coffee too. I guess I have to give that up or at least limit the amount I'm drinking.

jujub
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Date Joined Mar 2003
Total Posts : 10407
   Posted 1/2/2009 9:28 PM (GMT -6)   
Welcome to HealingWell, confusedgirl. I'm sorry you need this forum, but glad you found us. There's a lot of information and support to be had here. You might want to start by reading through the UC resources thread at the top of the page. There's a lot of good information there. With a chronic condition, it's important to educate yourself so you can be an active participant in your care.

As far as diet, you may want to start a food diary so you can track over a couple of months and determine which foods or beverages really do bother you. Food has more of an effect on some than others.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Happychic
Regular Member


Date Joined Dec 2008
Total Posts : 44
   Posted 1/3/2009 9:05 AM (GMT -6)   
I have been taking Lialda for a couple of years now.  I have only had 1 flair since I started it. I take 2 in the morning, but I know that dose can go up or down. I also love coffee, but I just have 1/2 a cup or none when I am flaring. It is a stimulant, so you have to be careful with coffee. Once I hit remission I have a couple of cups each morning! Hope you get better soon. The food diary is also a good idea!

stephaleph
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/3/2009 6:21 PM (GMT -6)   
I'm taking lialda myself, and it's been doing me just fine. It's much easier than the alternate Asacol, which you have to take 3 times a day. Anyway, I'm sorry that you've just been diagnosed. I was diagnosed when I was 15 and I know what a bummer it is. Bottom line is that once you get it under control, it's not that big of a deal. Everyone's different. Just take it one day at a time and learn what you're sensitive to and what you're not.

DKTB
New Member


Date Joined Sep 2008
Total Posts : 10
   Posted 1/3/2009 8:46 PM (GMT -6)   
hey sorry u have to join dis forum.I use to be on sulphasalizine but i stopped in Dec 2007 and since den I've been takin 2 tbsp of ginded flax seed every day and 1 tbsp of coconut oil 3 times a day,obviously i had to reduce d medication slowly b4 comin off it completely,but i took it with d flaxseed and oil.Since den i've been great and d only time i get a flare is if i skip takin dem 4 a while.D flax seed is better dan chemotherapy and d oil is good 4 d intestines and full of vitamin E which reduces infection.the medication isnt gona get rid of d sickness mostlikely it will jus give u more diseases.U must try d natural stuff.i did and now i'm great and d doctor told me my UC was Severe and close to cancer but i proved dem wrong cuz i had God on my side

JennaK4202
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 1/3/2009 10:08 PM (GMT -6)   
Hey there, sounds like you and I are in the same boat...I was "diagnosed" with UC 2 years ago....but it didn't become very active until last year at this time. I guess what I was experiencing last year was a 'mild' flare because I was having bloody, diarreah (sp?) stools for monthsssss. The GI that was treating me said it would take awhile for the suppository to take effect, then he switched me to an enema....and continued to give me the same line. Basically, I listed to this quack for about 5 months before I got sick of being sick and listened to one of my friends who has Crohn's and switched to her GI. The first time I saw this new GI, I took him the results of my colonoscopy and everything, and he recommended another colonoscopy...so I had another one done and he said the reason that the suppositories and the enemas weren't working was because those only reach the rectum and the sigmoid and I was infected all the way to the transverse. So he started me on a heavy dose of prednisone and lialda. Once I came off the prednisone, things had made such a significant change for me that I didn't realize that it wasn't "normal" to not have normal BM's. I thought loose stools were ok, considering the condition I had. I wasn't having any pain or discomfort, and the bleeding had stopped, so I just assumed that my BM's were just going to be kinda loose for the rest of my life.

I didn't realize that wasn't normal until I was admitted to the hospital the first week in December. My GI told me he figures that I was having a continuous low-grade flare since I started seeing him; and was puzzled as to why I didn't contact him before, but I had done such a 180* from where I was before, that I didn't think to complain. (What set off the hospitalization was Keflex, an antibiotic that I took ONE dose of for a bronchitis infection...and from there on, they couldn't get my UC under control with out-patient steroids, so IV steroids were needed).

I guess what I'm trying to tell you is; do your homework, ask questions; and don't "settle". Pay close close attention to what you are putting in your mouth and even CLOSER to your stressors. I have heard that UC is not what you're eating; its what's eating you...which I can tell you that I am an emotional person, and if I get all hyped up about something, it will affect my bowels for sure. Know that nuts, salads and fresh fruits/veggies are typically what will set off most problems because the colon has trouble digesting the little seeds and/or the acids in the fruits are very hard on it as well. ANYTHING that is put in a fryer will knock me down for days...fries, chicken fingers...stuff like that. You are the only one who knows your body...listen to it.

Don't let yourself get down because you have this diagnosis...it's not a death sentence; just a new way to manage your life. :o) Keep me updated; like I said, I think we're kinda in the same boat, being around the same age and rather new to this, although I have a little bit of time on you :). So far, Lialda has been good to me...yes it is very expensive, but it's hard to put a price on your health.

Have a great weekend. :)
~*JeNnA_kAyE*~
Married, 24yrs old
:Diagnosed with Severe UC in 2006:
First hospital admission b/c of flare: December 1-6, 2008
Lialda - 1.2g 3x/day
Currently coming off of Prednisone


confusedgirl22
Regular Member


Date Joined Dec 2007
Total Posts : 228
   Posted 1/4/2009 9:01 PM (GMT -6)   
Thank you all for your replies. They really help! :-)

Today is my third day on Lialda and I've already noticed a difference. I'm not going to the bathroom as much. However, instead of diarrhia I have constipation the last 3 days. Is this normal after being on medicine for UC?

I'm trying to limit dairy and caffeine. Dairy especially makes me have D after I eat it.

confusedgirl22
Regular Member


Date Joined Dec 2007
Total Posts : 228
   Posted 1/6/2009 6:32 PM (GMT -6)   
When I went to the bathroom today, I noticed yellowish circles in the toilet, looked like a piece of corn. Has this ever happened to anyone? Is it mucus? I'm really scared.

UC in Memphis
Regular Member


Date Joined Jan 2009
Total Posts : 67
   Posted 1/6/2009 7:01 PM (GMT -6)   
JennaK4202 said...
I guess what I'm trying to tell you is; do your homework, ask questions; and don't "settle". Pay close close attention to what you are putting in your mouth and even CLOSER to your stressors. I have heard that UC is not what you're eating; its what's eating you...which I can tell you that I am an emotional person, and if I get all hyped up about something, it will affect my bowels for sure. Know that nuts, salads and fresh fruits/veggies are typically what will set off most problems because the colon has trouble digesting the little seeds and/or the acids in the fruits are very hard on it as well. ANYTHING that is put in a fryer will knock me down for days...fries, chicken fingers...stuff like that. You are the only one who knows your body...listen to it.

Totally agree with the research aspect.  Before my "follow up" with my GI, I read as much as I could and wrote down a list of questions to ask him.  He answered everything he could and was extremely patient with me about it.
 
As for the fries and chicken fingers......uh oh.  I am still in the VERY early stages of figuring out what causes me issues and what doesn't and I had that for lunch today.
Male, 30
Dx: moderate-severe UC 12/08, Lifelong GI issues including an intesusception at age 4
Current meds: Prednisone (20mg), Lialda, Prevacid 


UC in Memphis
Regular Member


Date Joined Jan 2009
Total Posts : 67
   Posted 1/6/2009 7:04 PM (GMT -6)   
confusedgirl22 said...
When I went to the bathroom today, I noticed yellowish circles in the toilet, looked like a piece of corn. Has this ever happened to anyone? Is it mucus? I'm really scared.
I have never had anything solid yellow (like a piece of corn) but I have had mucus/acid like stuff similar.  Not sure about your setup with your GI, but I know my GI and his nurse will return my call within a couple of hours when I have a question or am worried about an update in my health.  If you can, call them and keep them updated.
Male, 30
Dx: moderate-severe UC 12/08, Lifelong GI issues including an intesusception at age 4
Current meds: Prednisone (20mg), Lialda, Prevacid 


confusedgirl22
Regular Member


Date Joined Dec 2007
Total Posts : 228
   Posted 1/23/2009 4:14 PM (GMT -6)   
I've been on Lialda for about 3 weeks now. Sometimes when I go to the bathroom I noticed those small balls in the toilet I took a Q-tip today and wore gloves to see what it was. The small ball was hard on the outside and had puss on the inside. Does this mean the medication is working? How come I did not see these small balls before taking the medicine?

Post Edited (confusedgirl22) : 1/23/2009 3:26:35 PM (GMT-7)


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/23/2009 4:45 PM (GMT -6)   
have just been on lialda less than a week... have noticed no side effects except for positive ones.... Have been fighting this ( my first flare ) for over a year. just about had myself in remission with diet changes then doc switched me to lialda from balsalazide. Instant change. No more symptoms. I think I got very close with diet and then the med switch put me over the top. even ate chili last night with no bad results. Hope things get better for you...
 
38 yr old male, NE Ohio, diagnosed Aug 2008, but been with symptom since Nov 2007
30 mg pred, 9 balsalazide, rowesa nightly, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera tabs
Following gluten free diet as well as spinach/sunflower regime
**down to 25 mg of pred 12/25/08 **down to 20mg of pred 1/7/09**down to 17.5 mg 1/22/09
MED CHANGE: 1/13/09-- 4 Lialda, 2 Pamine Forte, 1 Florajen3 probiotic, 2 Aloe Vera tabs, Rowesa every other night, 20 mg of Pred, Lomotil as needed, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol
 
 
 
 
 
 
 
 
 
 
 


confusedgirl22
Regular Member


Date Joined Dec 2007
Total Posts : 228
   Posted 1/23/2009 4:46 PM (GMT -6)   
Thanks. Things are good for me. I go to the bathroom less and I don't have as many cramps. But I do notice pus-filled balls sometimes in my stools which concerns me.

beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 1/24/2009 7:48 AM (GMT -6)   
Have you mentioned those little pus balls to your doctor? I've been on Lialda or Asacol (both 5ASAs) for over two years now and have never experienced anything like what you are talking about. Occasoinally when I was taking Asacol I'd pass what looked like whole pills, but with a little research (involved gloves like your research did) I discovered it was just the shell of the pill. That doesn't sound at all like what you are going through though. And you are sure it isn't mucuous? If you haven't yet, give your doctor a call and ask about the pus balls, and then let us know what he says. You've piqued my curiousity.
 
36 y.o. male
Diagnosed w/ UC in May '06, had symptoms since '99
Meds & supplements: VSL#3, Lialda, Allegra, multi-vitamin, Wellbutrin XL, fluoxetine, and vit B-12.
Spinach/sunflower seed diet for over two months with positive results!


JennaK4202
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 1/26/2009 9:04 PM (GMT -6)   
Sorry I've been MIA since that post. I'm a second grade teacher and I got pretty busy once school started back up after Christmas break. eyes
 
Anyways, confused, I'd call your doc if I were you. Speaking of which, I just left a msg for mine today...I see him again on President's Day, but I have been off the prednisone for 2 weeks and 2 days now...and my body is beginning to try to function soley on the Lialda and itself...and it's not really working. My stools are back to being soft, and I can hear my bowels moving (not a good thing when you are around 8 year olds all day!).

Anyhow, he told me last time I saw him that if the Lialda (3x/day) didn't work, then he would probably have to switch me to Imuran, which sounds like a complete inconvienence with all the blood tests and stuff that is required...Idk what is going to happen, but its' getting frustrating. And I still have some pretty bad swelling from the prednisone...my face is still chubby. shakehead
 
I've noticed on most of these boards that ppl are losing weight from colitis and the meds...but I've easily gained weight. Anyone else gaining/or have gained weight with UC/UC meds?
 
-Jenna
~*JeNnA_kAyE*~
Married, 24yrs old
:Diagnosed with Severe UC in 2006:
First hospital admission b/c of flare: December 1-6, 2008
Lialda - 1.2g 3x/day
Currently coming off of Prednisone


Schotz217
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 1/26/2009 10:17 PM (GMT -6)   
JennaK4202 - I lost over 20lb with my last flare because of not eating, the frequent BMs and the vomiting, but then gained about 15 lbs when I was on Prednisone. Prednisone causes your appetite to increase and also makes you retain water so it's pretty normal to gain weight. My GI prescribed a diuretic to go with it because my ankles and knees were swelling too. Oh.. and the face thing is SO frustrating. I was on 100 mg of Prednisone in June '08 and took about 4 months to taper it down. My face stayed round (or as I read on another website "moonface") until November!
23 year old female
Diagnosed with UC in Oct 2007 after being hospitalized
Last hospitalized again for 10 days June 2008. Needed blood transfusions, steroids for 3 months
---
3 pills daily of Lialda
2 Canasa (rectal suspension) daily
Fish oil
No white flour, no sugar, no potatoes, no white rice


JennaK4202
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 1/28/2009 6:06 PM (GMT -6)   
Schotz...thanks for the info on the steriods.
 
Actually, I live in NE Ohio and we had a really bad snowstorm come in last night and school was cancelled, and my doctor called me back today...he called in a prescription for more prednisone since my symptoms have started to come back...looks like when I see him on President's day that I will be changing from Lialda to Imuran....not excited about any of this. shakehead   I think part of the weight gain may also come from the anti depressants i'm on....but i've been on them for years...seems like the combination of both meds are to blame.  eyes
 
-Jenna
~*JeNnA_kAyE*~
Married, 24yrs old
:Diagnosed with Severe UC in 2007:
First hospital admission b/c of flare: December 1-6, 2008
Lialda - 1.2g 3x/day
 

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