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Trying to decide on the next step for this flare

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Posted 6/15/2010 1:08 PM (GMT 0)

Ugh Just Ugh said...
Pentasa is really designed to treat the ileum and right colon. If your pain is more in the transverse and upper left, I'd switch to an oral 5ASA that is designed to treat the whole colon or the transverse down. Were you having right sided pain before you started the pentasa?

Thats wht I was thinking...maybe the pentasa is just not getting where it needs to get.

I may need to switch back to Salofalk.

Posted 6/15/2010 1:13 PM (GMT 0)
My GI thinks I have started prednisone. I didnt tell him that I wasnt gonna start it. I got the rx filled but I didnt start it as per so many experienced UCers here. I really just wanted the rx before things got worse.
Posted 6/15/2010 6:04 PM (GMT 0)

KrissyUC said...



Ugh Just Ugh said...

Pentasa is really designed to treat the ileum and right colon. If your pain is more in the transverse and upper left, I'd switch to an oral 5ASA that is designed to treat the whole colon or the transverse down. Were you having right sided pain before you started the pentasa?


Thats wht I was thinking...maybe the pentasa is just not getting where it needs to get.
I may need to switch back to Salofalk.



But that's not a true statement....and you were having right sided pain previously if I remember correctly.

It's worth switching back again, however....the 5ASA difference won't affect what's going on, just the delivery system.

q
Posted 6/15/2010 7:32 PM (GMT 0)
no..never any right sided pain..always mid to left and down only...
Posted 6/15/2010 7:44 PM (GMT 0)
Doctor > forum.

Take your Prednisone. Or, talk to the doc about other options. No sense just waiting around - UC is a black hole that just swallows hope and time if that's all you're feeding it.
Posted 6/15/2010 8:26 PM (GMT 0)
Here's what I found about Pentasa versus Asacol:

"How does Pentasa differ from Asacol?
Both Pentasa and Asacol are prescription forms of mesalamine. The difference between Asacol and Pentasa is in the outer chemical coating. Oral Pentasa has a unique formulation. The active ingredient is contained in coated microgranules, which enables a prolonged release of the active substance throughout the intestinal tract, from duodenum to the rectum. Therefore the Pentasa preparation is more useful for Crohn's patients who often have inflammation of the small intestine. The average small bowel transit time is approximately 3-4 hours in healthy volunteers.

Asacol is a delayed release enteric-coated tablets which generally releases the active ingredient only in the colon. While there are always clinical exceptions, Asacol is generally suitable for patients with colitis only (ulcerative colitis or Crohn's colitis), but not disease involving the small intestine."

This is from gihealth.com

Q is right my statement wasn't correct. Pentasa isn't designed to treat the right side. It's designed to treat the small intestine and colon. However, I still think that more medicine could be getting to your colon if you were on a colon only drug. Sorry about the confusing statement. I made an assumption based on reading that people with stubborn right sided inflammation get Pentasa when the colon only drugs don't cut it. I didn't realize it did the whole small intestine too! :o)

How long has it been now Krissy? :o(
Posted 6/16/2010 1:04 AM (GMT 0)
6 weeks in this flare..almost 3 on pentasa
Posted 6/17/2010 2:45 PM (GMT 0)

Mistix said...
Doctor > forum.

Take your Prednisone. Or, talk to the doc about other options. No sense just waiting around - UC is a black hole that just swallows hope and time if that's all you're feeding it.

My doctor suggested a few things..imuran, prednisone, and waiting it out..

We left on the wait it out and maybe try the cortenemas..he didnt think they would do much for a flare that was higher up though. It was I that called him the next day to ask for the prednisone I was having a very bad day and wanted to have it just in case..He is ok with giving rx's over the phone..anyway I havent started it..things are stable at 4-6 bms a day but i do have cramping and blood that is bothering me. No urgency.

Posted 6/17/2010 3:36 PM (GMT 0)
Krissy, I am going to pick up my enemas rx today. Did you read my other post? My GI would only give me 2g salofalk enemas!! Anyways, I will left you know how th first night goes :)
How are you feeling today? I am stable on the BM from, of course looser, sometimes small amount of blood, only 1-2 /day BUT I get bad cramps at random times in the day. Similar to you I think, sometimes when I eat, sometimes when I dont eat, sometimes with gas...ahhhh... this is driving me nuts!
Posted 6/17/2010 3:58 PM (GMT 0)
Can you not call and ask for 4 g? I dont get why he only gave you 2.
I am not feeling well today. I am starting to feel drained and just sick.I look awful as well..my face is all drawn..still having more bms than usual..still have blood and still have awful cramping ...I am also feeling a bit nauseous too now...I dont know what that is all about but its a little scary...no I Am not pregnant...
Posted 6/17/2010 4:18 PM (GMT 0)
I have been nauseous on and off for a few months too... dont know what it is either.
Posted 6/17/2010 4:50 PM (GMT 0)
I think it may be a part of UC..I never had this symptom before though.this and the cramps are new...
Posted 6/17/2010 5:27 PM (GMT 0)
Oh, no I hope you're not getting worse... :o(
Posted 6/17/2010 5:29 PM (GMT 0)
Nausea just started yesterday..the cramps have been steady for a bout a month..they are very annoying and random
Posted 6/17/2010 6:01 PM (GMT 0)
HI KrissyUC, 

 Have you tried the cortenemas yet?   My last major flare about 4 years ago I was using the Salofalk pills, enemas and suppositories but found that they didn't seem to be helping. I went through months of diahrea and blood.   The Dr switched my enemas to the Cortenemas and  he gave me Cortifoam and then I started to see an improvement.  The cortifoam was great because I could use it during the day, the salofalk suppositories I found did nothing for me.  He gave me a perscription for prednisone but I just couldn't take it and at that point I was down to 98lbs.  I didn't want that to be a regular med for me so I filled it but prayed the enemas would help and they must have so I never did have to take those pills.  He did increase my Salofalk to 12 a day but my hair started falling out, so I ended up going back to the 6 or 8 that I was originally taking.  It was a slow process of getting out of that flare but I did finally improve.

I too take the Ultimate Flora Critical Care and the Bio-K Plus and took them about 4 x a day and slowly my health started to improve. With the cortenemas the lids screw off so I always add the oil from about 8 vitamin e capsules  in with the medicine and I find it really stops the bleeding quickly  this is something that I wish I new about 4years ago .

Posted 6/17/2010 7:16 PM (GMT 0)
Puffed Rice, thx for responding.
I have yet to pick up the cortenemas..
I am tempted but not thinking they will reach the problem area..
I have pancolitis which means the whole colon is affected ( I am sure you know tihs already)
Anyway, I have D only sometimes but mostly just really loose and blood.
I have cramping up high that is why I think thats the problem area..unless maybe its a referred pain? Who knows...I am scared to try the cortenemas for fear of things getting worse...Also my doc looked in my rectum and said things look fine so the problem must be sigmoid and up .

Did you have pains in the upper area too?
Posted 6/17/2010 7:34 PM (GMT 0)
I had pain everywhere, I had a hard time getting out of bed for almost 4 months.  Everytime I stood up I had to get to the toilet it was by far the worst flare I have had in the 15 years since I was diagnosed.  The rectal spasms where so severe that I was having to throw up if anything was left in me.  I even ended up in the hospital from severe dehrydration from all the diahrea, I had no saliva left it was unreal.   I had a scope done by another doctor who I was able to get into quicker at the time and he claimed things didn't look so bad down there so it could of been higher where he wasn't looking.  It was so frustrating because I was so sick but switching my enemas and using the two probiotics seemed to pull me out of that flare.  I even took lomotil to slow the diahrea down so I could retain the enemas better and the less I went the less irritated my colon was.

 

Posted 6/17/2010 7:49 PM (GMT 0)
hmm..and through all that you didnt go on steroids?
I was very similar a couple years ago and ended up on pred..I never had D though..actualy not much of anything was coming out..my rectal area had actual ulcers..it was soooooooo bad...it was labelled severe down low and mild up top..but now I feel like things have swtiched..I dont have any urgency like I did at that time..no rectal pain at all..just 4-6 bloody bms a day with awful cramps preceding..
I dont know if the cortenenmas will reach my problem area...
is your Bio K probiotic a pill?
Posted 6/18/2010 12:47 AM (GMT 0)
The Bio-k Plus is a probiotic drink but it also comes in capsules, I take the drink one.    It is fermented milk and is sour tasting just like real yogurt if you make it.  It has 50 billion live cultures plus per bottle.  I'm not sure if it available everywhere but I buy it in the health food store in Canada.   You can google it for more info it has been tested and proven to help for colitis, c - difficile and IBS.
Posted 6/18/2010 1:38 AM (GMT 0)
I don't think using the cort enemas is a big deal but tthey did not help me very much unfortunately. Things actually just turned around for me the other day after a pretty long course of prednisone. I was down to 1mg a couple weeks ago and had a terrible relapse, a relapse that I thought would never improve. I am finally doing better. Not sure if the 6mp is helping or if it's the steroids but something clicked and I am feeling better. Sadly I don't see any improvement when I eat more probiotics. I wish I were that lucky. I have been eating worse than ever, drinking soda and even a bit of coffee and I am feeling ok. I don't take 5ASAs anymore. I hope I can get off this prednisone somewhat quickly. I know with my luck my chances are not so good. Hopefully things turn around for you quickly.
Posted 6/21/2010 2:28 PM (GMT 0)
Since my switch back to salofalk things seem to have improved. The blood has lessened and at times I Do not see it at all. I Think I better just remain on Salofalk and give my Pentasa to my friend who seems to do well on it :)
Posted 6/21/2010 2:42 PM (GMT 0)
krissy- its good you have a friend who has uc that you can talk with. i think i need that. the forum is wonderful but sometimes i just want to make that real connection. i cant keep putting this all on DH. today so far, not too bad for me. 1 BM about 45 mins after waking up and minimal cramps SO FAR. But I know I will cramp more as the day goes on...

Good you're back on salofalk. I feel scared to switch to another 5ASA because I am not sure how much the salofalk is really doing for me, but I dont want to test it our, you know,
Posted 6/21/2010 2:50 PM (GMT 0)
Yes I know..I f igured I would do some testing while the flare wasnt too bad..it still isnt too bad..but I know it would be alot worse if I wasnt takinga ll the different things.
I am actually anxious to see if the new probiotic helps as well. Iwas thinking to possibly alternate it with VSL ..maybd every other day vsl and the off days do the ultimate flora ..
Or maybe I really need to get rid of vsl for a bit and see how I am without it..
I forgot to have my yogurt yesteday with it yesterday actually so I dont think its a matter of missing it one day and things are gonna go haywire..
Posted 6/21/2010 7:30 PM (GMT 0)
Krissy - I totally missed your question about why I am waiting to start Imuran until after the baby is born...so sorry! I had several issues with my old GI and had considered changing many times. Once I got pregnant, I decided it was time to go to another GI who had more experience with UC and pregnancy. My new GI is so awesome and very well educated and experienced with UC. I was about 12 weeks pregnant when I first saw this new GI. He said if I had already been on Imuran prior to getting pregnant that he would likely have left me on it but he does not want me to start it in the middle of my pregnancy. Hope that helps!
Posted 6/21/2010 7:36 PM (GMT 0)
That makes TOTAL sense....
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