Severe Problem !! Please advise

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happyliving
Regular Member


Date Joined Mar 2008
Total Posts : 166
   Posted 7/31/2008 4:45 PM (GMT -6)   
Hello,

I came out of prednisone some one month back and now on Lialda 4/day and Canasa one daily in the nights and probiotic which contains more than 2 billion active cultures.

Some days i have no problems at all and one day it suddenly flares...

For last 3 days I'm doing well with hard stoll,no pain at all and only one bowel movement / day , but today afternoon again i have a pain in my stomach and went to the restroom and noticed some blood mixed with mucos....I have not taken any hard food or anything that irritates the colon...but i don't why know this started suddenly....

Is it may be the stress that is causing this?
Food?

I'm confused and getting frustated .. Do i need to see my GI and explain him this situation or it is common for this disease.....I know this disease is strange and behaves abruptly but i need your suggestions and valuable comments which builds my confidence...

Please respond and address my questions plz

Thanks in advance

Ashley O
Regular Member


Date Joined Jun 2008
Total Posts : 72
   Posted 7/31/2008 5:44 PM (GMT -6)   
Hi Happyliving. I'm sorry you're having problems. The same thing happens to me. On days that I suddenly start flaring out of nowhere I notice it helps to double up on my canasa supps and do one in the morning/afternoon (which ever time you can and be around the house for an hour or so to make sure you don't have issues) and do the second one before bed. I do them twice a day until I get back under control. Try that and if it doesn't help make an appt with your GI doc. Good luck!

__________________________________________

Ashley

19 year old female DX Severe Left-sided Colitis after c-scope Oct 2005
Prednisone 40mg Oct 2005-Aug 2006
Canasa Supps Oct 2005-present
Remicade every 8 wks Aug 2006-present
C-diff in March-April 2006
Procedures to Date: 3 colonoscopies, 2 sigmoidoscopies
Semi Remission with mini flares controlled with Canasa supps and Immodium
Feeling: Extremely depressed
Zoloft 100mg June 2008-present

serothschild
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 7/31/2008 9:33 PM (GMT -6)   
Hi there,
I don't know how long you've had Ulcerative Colitis for, but I went a long time with symptoms like yours while on mesalamine when first diagnosed. I wish someone had told me that Mesalamine (Lialda is just a time released version of the drug) really only works for a small percentage of patients...this way I would not have sat around waiting for it to work better...instead I would have called my doctor and said, "This drug just isn't working, what should we try next?" If you're experiencing symptoms again, maybe you should talk with your doctor about what other medications you can try to really put your colitis in remission if possible.
Sandra


happyliving
Regular Member


Date Joined Mar 2008
Total Posts : 166
   Posted 7/31/2008 10:29 PM (GMT -6)   
Helo All and Sandra,

I have UC since April 2006
Initial flare was severe and was hospitalised for 4 days
Later i was on Asacol for some days and doing good..
But what i noticed is my UC is never 100% in remission for long number of days..some way here and there,
there are bumps.
Later GI asked me to be on Canasa Suppository and I'm on that for few days and sypmtoms comes,goes away and comes back...
Recently one month back i was kept on Pred on low dosages from 20mg tapering down to 0mg with 5mg downs every 14days..
I'm out of Pred and now symptoms are back...but the most confusing part is symptoms are not there all days..few days are good and one day flare starts suddenly..so i'm not able to exactly define this to my GI, he says ups and downs will be there with this disease...........
I'm totally confused and not sure this is happening only to me or somebody else..

In this situation what would be the best solution..
Is it advisary to change the medications?

Please advise....and your expereices/solutions that helped you out to come out of this problem

Thanks all in advance and awaiting your responses

happyliving
Regular Member


Date Joined Mar 2008
Total Posts : 166
   Posted 8/1/2008 6:02 AM (GMT -6)   
Hello All

Plz respond for my questions....

Thanks in advance

tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 8/1/2008 8:11 AM (GMT -6)   

Hi, I am the same as you. I am currently down to 2.5mg pred, some days I go once and BM fine other days I am there 4 times. However, I have been like this twice before and thought I was flaring but had a scope each time and was told my colon was clear (no inflammation). When I am in a flare I can definately tell the difference as go about 8 times per day and usually once during the night and have a lot of stomach pain and urgency.

At the moment although I am going a little more I have little or no stomach pain and pretty much no urgency. At my last visit to the doctor he told me there are lots of other things that can make you go to the toilet more and not too worry excessively if I have a bad day as that will inevitably bring on a flare.

So now I really don't worry, I just think to myself could of been something I have eaten, could be a bit of IBS or could just be that my colon is so scarred from previous inflammation that it doesn't work aswell as it used to!!!

 


32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 100mg started 4/08
Steroids 5mg per day


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/1/2008 9:39 AM (GMT -6)   
I would call your GI and let them know what is going on. Have you tried Asacol, Sulfasalazine or Azulfadine? If not, I would ask you GI about those. Also, see if you can add Rowasa enema's to help ease your flare.

The Lialda may not be working for you.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 20mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 8/1/2008 5:13 PM (GMT -6)   
There are a number of things that could be affecting you, such as diet or med. You could try keeping a food diary for a few weeks to judge whether anything specific disagrees with you. (Are you lactose intolerant? Read labels of processed foods to see if any additives could be bothering you, etc.) What did your most recent scope report about your areas of inflammation? As Beth75 writes, another form of oral 5-ASA might help you more than Lialda, depending on whether you have right-sided or left-sided inflammation, or pancolitis. Another point for your doctor to consider is whether you are steroid dependent; if you have to keep returning to Pred to get real improvement it might be time to move to 6-MP or Imuran. Long-term use of steroids should be avoided for the sake of one's bones, especially. It sounds like your inflammation can be controlled with some combination of meds that still needs to be worked out-- so try to assess the situation calmly & stay as positive as you can about finding the solution. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

happyliving
Regular Member


Date Joined Mar 2008
Total Posts : 166
   Posted 8/2/2008 12:06 AM (GMT -6)   
Hi Old Hat,

Thankq for all your prompt responses..
My last scope revealed that I'm having a left-sided UC
I used Asacol for atleast one year..But my GI recommended Lialda saying that both are same and u can take Lialda once daily which is easy... So i started them.
I'm using Canasa 1000mg daily in the nights. Not sure whether they are helping or not because some times i see the medicine(white colore) coming out in the stool when i go in the morning..

What do you suggest me to do..i heard Colozal is good for left -sided UC.
What are the side effects of it.. is it the same drug as Lialda and Asacol.. If so i don't have any worries because they works for me......

Asacol/Lialda/Colozal...which is best for left-sided UC

Hi Beth:

what are these medicines Sulfasalazine or Azulfadine...are they similar to Asacol?

Thanks in advance..

happyliving
Regular Member


Date Joined Mar 2008
Total Posts : 166
   Posted 8/2/2008 3:32 PM (GMT -6)   
Your suggestions please on the selection of the medicines for left-sided UC.

How different is Asacol, Lialda and Colozal?

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/2/2008 4:35 PM (GMT -6)   
Asacol and Lialda are both Mesalamine. The difference is that Lialda is time-release and can be taken less frequently. Colazal is a different drug, Balsalazide. It is sometimes effective for those of us who cannot take or don't respond to Mesalamine. Sulfasalazine/Azulfadine is an older drug, one of the original ones used to treat UC. It is very effective for many people, but there are also a lot who have allergic reactions to it.

As far as which is best, that is an individual thing. Some of us with left-sided UC do best on Asacol or Lialda, some on Colazal and some on Sulfasalazine. The only way to know what works best for you is to try them.

If you're having pain and passing mucus, you're not in a complete remission. You should talk to your GI, and one of the things to discuss is rectal medications; Mesalamin and steroids are both available in enema and suppository form. Usually the last part of the colon to heal is the rectal area, and these options would deliver medication directly to that part of the colon.
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.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 8/2/2008 11:18 PM (GMT -6)   
The generic name of Colazal is basalazide disodium, but it breaks down to mesalamine inside the colon. That is a different dispersal than Asacol, which starts dissolving in the terminal ileum, according to recent clinical studies. Therefore, many gastros who keep up with UC research now think that Colazal is more effective in treating left-sided inflammation than other oral 5-ASAs. Sulfasalazine, the oldest oral 5-ASA, is bonded to sulfa, which can cause changes to blood cells over time or allergic reactions, so a patient should beware of those negatives when choosing among available meds. As Judilyn writes, the use of retention enemas in combination with oral med can speed healing in the recto-sigmoid sections of the colon. Many members here can vouch for that. / Old Hat

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/3/2008 12:47 AM (GMT -6)   
Old Hat said...
The generic name of Colazal is basalazide disodium, but it breaks down to mesalamine inside the colon. That is a different dispersal than Asacol, which starts dissolving in the terminal ileum, according to recent clinical studies. Therefore, many gastros who keep up with UC research now think that Colazal is more effective in treating left-sided inflammation than other oral 5-ASAs. Sulfasalazine, the oldest oral 5-ASA, is bonded to sulfa, which can cause changes to blood cells over time or allergic reactions, so a patient should beware of those negatives when choosing among available meds. As Judilyn writes, the use of retention enemas in combination with oral med can speed healing in the recto-sigmoid sections of the colon. Many members here can vouch for that. / Old Hat
Old Hat. What's best for pancolitis, Asacol, Lialda or Colazal? I realize these are all the same active ingredient but you seem to feel there may be an advantage and I love to hear it.
 
Thanks

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 8/4/2008 8:18 PM (GMT -6)   
bbc-- I bumped an earlier post for you & Happy Living. See "New Online IBD Article Summarizes Current Medical Treatment Options". Part 1 of the article discusses 5-ASA differences, among other meds used to treat UC. / Old Hat

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/5/2008 9:48 PM (GMT -6)   
From what I have learned about food sensitivity/intollerances, this might be your issue, too. With allergies you would react immediately, but with intollerances it might take a few days. I have been off gluten for a week and have had the best day in months and months.
Stress does not seem to affect me, in fact sometimes I get worse when I have a chance to relax.
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