Ulcerative Colitis treatment questions--please help

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joepolv
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/20/2008 5:53 PM (GMT -6)   
I was diagnosed with UC, lower left sided, about eight years ago. At that time, I was given 6MP and brought into remission fairly quickly, after first having a bad reaction to asacol. I stayed in remission for almost seven years. The last two years of remission, the doctor took me off of 6MP completely.

In October of last year, my condition reappeared and flared again. The doctor who I was seeing (I had moved away from my last doctor's office), kept me on heavy doses of prendisone for several months, with little improvement shown. Finally, I was put back on 6MP in January. The prendisone was eventually stopped.

Even though the condition never improved 100%, I had weeks at a time with little or no bleeding. By the summer, it had worsened again. Now, they put me on remicade. After the first treatment, I felt almost 100% again. By the second, the effects started wearing off. By the start of this month, I experienced a major flare up.

They tried prendisone again, which didn't work. Now, they have me on 32MG daily of medrol.

I have anywhere from 2 to 5 bowel movements a day depending on the day even though I'm on a strict diet. I just started the medrol.

I'm getting very frustrated with everything. Has anyone had success with the medrol or a similar experience? Your reply would be appreciated.

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/20/2008 6:31 PM (GMT -6)   
Welcome to HealingWell, joepoly. I think most of our docs use Prednisone, but perhaps others have been on Medrol. Remember, though, that even if it gets you into remission, steroids are not appropriate for long-term use because they cause very serious side effects. Your GI should have some plan for what he's going to do beyond the Medrol.

Since you have lower left-sided UC, I'm wondering if you've ever been given rectal medications? Steroids are available in enema form, which would deliver the medication directly to the affected area and be less absorbed into your system. Sometimes these are used in conjunction with oral steroids in stubborn flares. But your doctor should have something in mind for a maintenance medication after the steroids.

Some who don't do well on Asacol can benefit from Colazal. Another immunosuppressant is azathioprine; some do better on that than 6-mp. It sounds as if Remicade isn't really working for you. Some people are able to get insurance approval to try Humira, another biological. It is approved for Crohn's in the US, but not yet for UC.

If you find a combination that works for you, always keep taking your maintenance meds. You've seen what can happen when you stop.

And remember, if all the medications fail, surgery is still available and is a sure cure for UC. Hope you're soon feeling better.
Judy - Southern US 
 
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.


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 8/20/2008 6:46 PM (GMT -6)   
Joepoly,
Judilyn has given you some very good advice, especially with the rectal meds. They can really make a big difference. Have you tried Sulfasalazine at all? This was one of the first meds used to treat UC years ago. Some doctors don't bother prescribing it and they just go onto stronger meds. If you are allergic to Sulfa, then this would not be an option. Some people have a sensitivity to sulfa and in that case they can be desensitized to it. Like any other drug, some people have luck with this and some don't. It is an option. Good Luck, hope you find something that works for you.
*******Donna*******
 
South of Boston, Ma
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin 5000mcg, Fibercon.
 


joepolv
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/20/2008 7:03 PM (GMT -6)   
I very much appreciate the replies I have received to my post. Judy, I was given something called Cortifoam for a week. During that time, the flare up seemed to worsen and they went back to oral steroids. Right now, the doctor says he wants to see how the next remicade infusion goes, and then move from there.

Donna, is sulfasalazine an option is one is allergic to asacol as I am?

Thanks to everyone for your help.

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 8/20/2008 7:05 PM (GMT -6)   
I'm not sure, maybe someone else can jump in and answer that. I tried Asacol and it didn't help me at all, perhaps it made things worse.
*******Donna*******
 
South of Boston, Ma
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin 5000mcg, Fibercon.
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 8/20/2008 7:51 PM (GMT -6)   
If you're allergic to Asacol, that probably rules out sulfasalazine, Colazal, & Lialda as well-- because they all contain mesalamine as the anti-inflammatory (main) ingredient. Hydrocortisone retention enemas (Cortenemas) can be very effective in combatting left-sided UC flares with fewer side effects than Prednisone, as Judy writes. Due to your mesalamine allergy you might need an immunosuppressant like 6-MP or Imuran to keep in remission if you do take steroids to quell the inflammation-- because longterm steroid therapy is dangerous to the body. / 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 8/20/2008 9:08 PM (GMT -6)   
Hi OldHat,

Sorry for asking you this question..
I'm also suffering with left-sided UC
How could you able to maintain remission just with Colozal all these years?
Did you followed any strict restrictions on Diet or anything specific which helped you out to be in remission?
Your advises are highly appreciated.......

Thanks in advance.........

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 8/21/2008 6:33 PM (GMT -6)   
Happy Living-- my experience with the 3 Colazal daily to maintain remission is a stroke of luck. I started getting unpleasant side effects (puffy, itching eyelids) after 10 weeks on full-dose (6-9 Capsules per 24 hrs)-- so my gastroenterologist recommended lowering the dose to see if that would enable me to tolerate Colazal longer-- since overall, it helped control my inflammation far better than any other med. I stayed in remission for 20 months, then had a slight flare last July. Upped to 6 Colazal daily 'til October, eyes then acted up again, gastro said reduce dosage; it worked. Occasionally I take a Rowasa if I feel like a flare could be starting. I try to be prudent about diet, low-salt, lowfat, no heavy sauces or spice because those things irritate my case. I avoid carbonated drinks, caffeine, MSG, artificial colors & other food additives as much as possible, use lactose-free milk, drink Evian water, & eat raw fruits/veggies with caution, plus take a multivitamin daily with lunch. A Crohnie I know who has achieved 20+ yrs of remission from fistulizing disease (w/o meds) advised me to think in terms of "triggers"-- what could possibly contribute to a flare's start-up? I think this advice helps me to stay on track & avoid binge-eating, not getting enough rest, obsessing on situations I can't change, etc.-- whatever can wear me down/out. I see my gastro (an IBD subspecialist) 2-3 times a yr & get bloods, etc. tested, will likely schedule routine c-scope within the coming 9 months. As long as I feel & function well, I never look to see what just went into the bowl. It's basically a common sense approach, trying to avoid what can be harmful, judging from past experience. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
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