anyone who has moderate/severe UC

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New Member

Date Joined Aug 2009
Total Posts : 4
   Posted 8/29/2009 9:51 PM (GMT -6)   
If you have moderate/severe UC what are you on for meds? I have pancolitis and I am on apriso, 75 mg of 6mp, folic acid, calcium, multi vitamin, florastor and want to desperately come off but my doc doesnt think I can handle it. I haven't had a flare up or any problems since I was diagnosed in '07. The side effects scare me and I'm only 19 I do not want to be on this stuff!!

Forum Moderator

Date Joined Dec 2008
Total Posts : 16736
   Posted 8/29/2009 10:04 PM (GMT -6)   
It sounds pretty typical to me but my UC is considered mild/moderate. I wouldn't stop all the meds, they do help maintain remission. If your UC is moderate/severe, a flare could end up being hard to treat and evneutally lead to surgery. I am a worrier so I would never consider doing anything that would postentially worsen my situation. I am not sure about stopping the 6mp, I think Apriso is a pretty mild drug and not worth stopping.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
Horrible relapse: August 08 - December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
Canasa nightly + Asacol (9/day) + Probiotics + Iron

Elite Member

Date Joined May 2003
Total Posts : 30999
   Posted 8/30/2009 1:44 AM (GMT -6)   
xTMx..welcome to the forum!

Are you wanting to just get off the 6MP or all the meds? If you can use the Apriso, that's should, however, be on rectal meds as well.

I've used the 5ASA meds, oral/rectal for over 20 years. Who knows what'll be available in the time you will be on them....

5ASA is still the one med with the least side effects if you can take salicylates. You can taper to a lower dosage if you need to, but in reality if you can deal with and limit your flares in the distal part of your colon initially (rectum/sigmoid) than you can head off more serious flares and probably from going higher into your entire colon.

The goal is to keep everything as quiet as possible. If you can achieve that with the first-line meds, that will be a good thing.

It does take commitment, however, which sucks sometimes.

*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Veteran Member

Date Joined Apr 2009
Total Posts : 654
   Posted 8/30/2009 9:16 AM (GMT -6)   
I have severe UC throughout my whole colon.  I was just diagnosed in March of 2009.  I'm on pred(13mg and tapering until off) and remicade.  I tried the 5 asa's and Imuran was allergic to all of them.  I've had a flare for about a year and a half now.  The only thing that works is the pred as soon as I taper I flare again.  I'm tapering now and even with the remi I'm starting to go more and have more urgency.  I wouldn't go off the meds.  You don't want to have a really bad flare they can't get under control or get to sick you end up in the hospital.  I to am scared of the side effects I worry everyday. 
Good Luck!
Mom of Three(Two Boys and One Girl)
29years old
Ulcerative Colitis(severe whole colon)
Diagnosed March 2009
Allergic to Asacol, Lialda, and Imuran
Currently on Pred and Remi
Remi not going to well!(I think I had a reaction the first infusion they want me to try again)

Veteran Member

Date Joined Dec 2008
Total Posts : 3231
   Posted 8/30/2009 12:03 PM (GMT -6)   
I had severe colitis. My GI wanted me to be on maintenance medicine after my second flare. I never took the medicine and continue to be med free. I did have another flare about a year ago after having taken antibiotics. I took probiotics and changed my diet, and the flare went away. My GI says I'm lucky. I get that a lot with doctors. I've been told that I'm lucky many times before.
Joy - 47 yrs and counting; Dx Colitis Dec 06 (also had IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

What works for me: Fecal transplantation, Probiotics, Anti-inflammatory foods, No HFCS, No foods high in fructose, No artificial sweeteners, No pro-inflammatory foods when flaring, Vitamins, Lexapro (for stress).

Veteran Member

Date Joined Aug 2008
Total Posts : 903
   Posted 8/30/2009 2:55 PM (GMT -6)   
I've been in remission for over 2 years, and have had mild flare ups during the 2 years, but I'm on Humira. Don't quite know where I am with my UC now, but I think it's severe. The medicine I'm on works wonders for me.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira since of May 2007 (Currently in remission since May 2007with minor yearly flares)
Put on Imuran from May 2007 to Jan, 15 2009
Put on Canasa June 25, 2009, off Canasa on June 30th 2009.
*Can't take Asacol, Allergic to Remicade, odd reactions to Canasa went backwards a bit.
*Started minor flare in mid June 2009 but VERY minor. :( Ended Aug. 21, 2009. :D

USC Girl
New Member

Date Joined Apr 2009
Total Posts : 1
   Posted 8/30/2009 5:54 PM (GMT -6)   
I am also 19 and was diagnose back in 2007. The longest I have managed to go without a flare since then is three months, and even then I was on prednisone for half of it. I am currently on Asacol, azathioprine, Humira, and canasa. I just started Humira 1 1/2 months ago and just a few days ago started bleeding again. :( I am pretty strict with my diet but it does not seem to help that much

Veteran Member

Date Joined Jun 2009
Total Posts : 2012
   Posted 8/30/2009 8:47 PM (GMT -6)   
Are you getting side-effects from the 6mp or something? As long as your blood is getting tested regularly and everything is fine I don't think I'd be too worried. I've been on Imuran a couple of years now. Also it's very important to stay on your maitenance meds... but maybe you'll be able to lower them sometime. I wouldn't dream of stopping mine lol.
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 2xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome

New Member

Date Joined Aug 2009
Total Posts : 4
   Posted 8/30/2009 9:08 PM (GMT -6)   
quincy.. i'm only trying to come off 6mp not all my meds but i am very skeptical because it seems like a lot of people with the severety of my disease are still sick with even worse meds. I am so sorry for all of you who are on these meds and are still flaring! It makes me feel very lucky. My blood work has always come back perfect but i do have a lot of back/shoulder pain which I believe is from the 6mp or possibly the pred from when I was diagnosed. Also, I have gotten some skin damage from the 6mp and I was very good about not being in the sun. I get nervous because I am a college student and do go out and drink and I know the 6mp is hard on the liver. It is comforting knowing that there are others my age with the same condition. Why couldn't this hold off for us a good 30 years??! lol

Veteran Member

Date Joined Jul 2009
Total Posts : 2127
   Posted 8/30/2009 9:09 PM (GMT -6)   
I have UC in my left side of my colon. It skips some, only evident in the top part of the left side. Anyways... I am on 4 pills of pentasa 250mg 4 times a day... so 16 total. Then I'm on 50mg 6mp. I wanted to post, because I was at 100mg a day of the 6mp but was feeling almost as if someone had poisoned me at some points on some days. It just felt like my body ached throughout it's entirety. That was about a month ago, so I talked to my doctor and we reduced it to 50mg a day. Now my colitis is much worse. Only in the last week has this happened. I'm trying to do what I can to live with it, because those side effects are not fun. But, what I'm saying is... the meds are probably helping.


Veteran Member

Date Joined Jun 2009
Total Posts : 2012
   Posted 8/30/2009 9:26 PM (GMT -6)   
Well xTMx, all I can say is use your sunscreen... also,lay off the drinking. Sorry. I know it's fun but it is not good for your colon OR your liver. Just decide, would you rather party and drink or go back into a flare? Then it's easier to stop lol. I mean, one or two drinks occasionally... alright. But all in all I would stay away from it. Also, before trying to lower the 6mp I would wait til I'd been in remission for a while. I was in remission for a few years before we talked about lowering my Imuran. But now I'm having problems so I can't... maybe some other time =)
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 2xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome

Regular Member

Date Joined Feb 2009
Total Posts : 226
   Posted 8/31/2009 1:32 AM (GMT -6)   
I was diagnosed with severe pancolitis in '04, and told I needed my colon removed (none of the drugs did much, and I could barely walk due to blood loss/anemia). I switched to a basically carb free diet (after SCD only showed improvement on days when I stayed away from carbs) and was symptom free for years.

On a new doctor's suggestion, I agreed to a 6 month trial with a more normal diet and drugs (Asacol and Entocort right now). Within weeks of the trial my symptoms started back up, and I've since dialed back my carbs (against the doc's wishes) so that I didn't need to go back on Prednisone. Symptoms cleared up within a couple weeks, and I once again feel great. Will likely stop my "trial" early, although it's nice to eat a little bit of carbs (the drugs allow me to cheat infrequently, but that's about it).

The diet doesn't work for everyone, but I've met others who had similar experiences. Basically it's Atkins induction (some GI folks also call it an anti-fungal diet). The diet is NO FUN though ... meat, eggs, low carb veggies, oil, and that's it (a few nuts every once in a while, but even they had too much carbs to eat in quantity). After the first few weeks I rarely had a problem with energy, and I now run 5-6 miles per day. It took about 2 weeks on the diet for symptoms to disappear (1 week to start seeing changes) .
33 year old male
diagnosed severe pancolitis in 2004, unresponsive to all drugs
turned down recommendation to have j-pouch surgery
have been mostly symptom free since 2004 via diet modification (removed all carbs)

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 8/31/2009 11:07 AM (GMT -6)   
I assume that my colitis was in the severe doc doesn't really like to use labels like that, though, because he doesn't think they really matter. He said that to him, what matters is how much of the colon is affected (to determine which meds to use) and how bad the patient's symptoms are and how much they affect his/her life. My c-scope showed pancolitis and I had extremely urgent diarreah 15-20x's/day. I also lost a lot of weight and had very, very, very low blood pressure.

My current meds are in my signature, and I did a pretty quick course of pred to get into remmission.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (currently tapering; 12.5 mg).

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