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Ulcerative Colitis
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Posted 5/10/2010 4:47 PM (GMT 0)
Four weeks ago I was diagnosed with UC. I have been on Apriso and Prednisone (starting at 40 mgs and now tapered to 15 mgs daily). I am going to the doctor today. My symptoms are somewhat better but no where near gone. Mornings are hard. I still have rectal bleeding with mucus but my bowel movements are no longer diarrhea. I have no idea if this is any kind of improvement. I am new to this disease. I do have frequent bowel movements after meals...but most of the time after the mornings the rest of the day is pretty good. Does this actually mean the medication is working.
Will the doctor keep me on Apriso and take me off Prednisone after I taper down. After the Prednisone is done will my symptoms come back full force... So many questions to ask him.
I have not had any adverse reactions to the Prednisone except for severe INSOMIA but I am working around that. I was just wondering what the doctors next course of action is when you follow up after about a month.


Any advice would help.
Like I said symptoms are about 25 percent better but really would like to be in remission????
Posted 5/10/2010 4:55 PM (GMT 0)
As many of us suggested before, try the enemas! I know you think they're nasty, but try them. They're the key, IMO, to achieving and sustaining remission. It's worth it and really not that bad if you don't get all worked up about it.

It sounds like you are improving, but I bet the enemas will get you over the hump, get you into remission, and allow you to get off of pred. Even though you're not noticing any adverse reactions, you are exposing yourself to osteoporosis the longer you're on it.
Posted 5/10/2010 6:35 PM (GMT 0)
Yep, rectal meds...start with mesalamine retention enemas. They can even become your very best friend...lol...for the treatment and maintenance, that is.

I'd take the enemas over pred...but we have options and the right to make our own decisions.

q
Posted 5/10/2010 6:45 PM (GMT 0)
Rectal enemas all the way. It's not gross if you know you're doing something that helps and is going to work.
Posted 5/10/2010 10:49 PM (GMT 0)
Apriso is a maintenance drug, which will help but not completely eliminate flares. It's an anti-inflamatory that doesn't dissolve until it gets to your colon. So you will keep taking it. If you have controlled bowel movements, even if its four or so per day, it's still probably a good idea to continue to taper and get off the prednisone. Hopefully you are past your flare, which will probably come back but hopefully not for months or years! A little blood when you have UC is common, don't worry to much about it. I always bled a little even when I considered myself to be doing pretty good.

That's my two cents!
Posted 5/11/2010 5:48 PM (GMT 0)
Well I am going to finish out my meds for the next three weeks and then he wants me to go off medication completely and see how I do. I am happy for this. If my symptoms come back then treatment will start again. Not getting into enemas... I am not doing that bad. I can live with four bowel movements a day.. Enemas I think are for people who have this to a severe point. Who would want to inflict that on themselves everyday if they didnt have to. I am so happy I am doing better and hoping to do well without medication.. Taking one day at a time..
Posted 5/11/2010 5:58 PM (GMT 0)
No, enemas are not only for people who are severe. They are used to treat a flare (no matter how severe) and to maintain remission, and the point of them is to treat the lower portion of the colon that the oral meds often don't treat effectively. There are many people who have limited UC (ie, only the lower portion of the colon affected) who ONLY use enemas, because they are more effective than oral meds. I'm not sure who told you that enemas are only for people with severe UC, but they were sorely misinformed.

And you may be able to live with four BM's a day, but it sounds like you still have inflammation. Continuous inflammation increases your risk of colon cancer.
Posted 5/11/2010 7:08 PM (GMT 0)
Hmmm, I think I'd have to question that doc especially telling you to go off the maintenance meds. You might feel well for now, but taking maintenance meds is exactly what it means...to help maintain and remain symptom free. The enemas should be used in conjunction with oral meds -- the oral meds reach the upper part of the colon, and the enemas reach the rectal area; which is why the phrase "treat both ends" is used freely around this forum.
Posted 5/12/2010 1:41 AM (GMT 0)
Newer theory is to hit it hard up front-and your doc is taking the "wait till it gets bad to hit it" approach. If symptoms return as you reduce the pred, consider the drug 6mp. It may help you ease off the pred and not get a full fledged flare. Getting those to settle takes so darn long. That drug takes 2-3 months to be therapeutic, so waiting till you have a flare is not a good choice. It probably depends upon what your colonoscopy showed. The rectal meds are a good maintenance option- the Cortafoam with a steroid worked best for my daughter.
Best,
K
Posted 5/13/2010 2:55 PM (GMT 0)
Well I am only on 10mgs of prednisone daily and my symtoms have not returned to what they initially were so I am grateful for that and feeling much better since I have been taking meds. I do not want to be on prednisone for any longer than I have to.. When I had my colonoscopy done. I had three things diagnosed that were treated with Apriso and steroids ... stenosis, anal fistuta and UC. My symptoms have definitely improved 50 percent since starting treatment so the doctor feels I am responding well to treatment. I would like to go off medication and not have to take it for the rest of my life so I am going to see what happens. He is a very well respected doctor/surgeon and I completely trust his judgement. He says after a week I will know what I am dealing with so its not like I cant go right back on the Apriso. Also on of the side effects of Apriso is increased bowel movements... does this make any sense. Before I was taking this medication I was having less bowel movements. I never had so many hard bowel movements a day in my life even when I was at my worst. The mucus and the bleeding were the issue. So I will take my chances for a week and play it by ear. No one wants to have to put medication in their body if they dont have to and the doctor feels I have responded very well to treatment so far. I would have to be having an extreme flare to even think about using enemas. The whole idea grosses me out and my symptoms are not that advanced that I need to be doing that everyday.. not to mention the cost of the prescriptions. I hold down a full time job and my diet is not affecting my condition. So at this point I am going to see how it goes.
The doctor is one phone call away and can put me right back on meds...I want to be medication free I am not a person who takes a barage of pills daily for this and that. Before this diagnosis
I never had to take any medication at all.
Thanks for the advice..
Posted 5/13/2010 3:03 PM (GMT 0)
My symptoms seem to return when I lower my dose of pred a lot. You may be lucky and get off without a problem but your symptoms may return with a vengence. Without taking maintence meds, for me, mine would definitely return and progress to be terrible.

No one wants to take drugs, I am not a pill popper, I do what i have to to survive day to day without 100 trips to the toilet.

goodluck.

Posted 5/13/2010 3:21 PM (GMT 0)
Nancy - a couple of things.  Just a note that no one LIKES to take lots of medications - however, a handful is keeping my husband alive and last week on vacation he forgot his morning meds and got very sick. 

Back to rectal meds - I am one of those on here who was the LAST holdout for enemas.  Everytime I read about someone feeling better with enemas I "thought" about it.  I finally tried Rowasa - but had a reaction to all mesalamines so that did not work.  Also, I am obese so only way I can use rectal meds is on the toilet - then no fun.  SO - when I tapered off prednisone, 6MP did not work and I still had some blood, mucous and urgency a very experienced surgeon put me on ONLY rectal meds because steroid rectal enemas and foam do not absorb and no side effects.

Anyway, I was sent home with Cortifoam (not enema - small canister of foam) and Anusol suppositories to use three times a day.  Well, to be honest I rarely was able to do 3 times but always twice a day - Cortifoam followed by Anusol suppository.  He told me when I appeared back to "normal" for me - no bleeding, less mucous and one or two formed BM's a day to taper rectal meds to every other day and then down to once a week or ? depending on symptoms, etc.  IT WORKED.  After 18 months of misery, blood, mucous, diarrhea, etc. etc.  I have felt about 90% since October and most of my symptoms are IBS related as I have that also.  I have to watch what I eat.

Good luck - just wanted you to know at age 70 I am very happy I finally gave in and tried the rectal meds!! (thanks quincey for constanting telling us they may help the most)

ElaineNY

Posted 5/13/2010 5:37 PM (GMT 0)
if you don't like the idea of enemas then maybe you could try a rectal suppository.  There is one called Canasa that might help.

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