Rowasa question

Sorry, I know this question has been answered and asked over and over. But I couldn't find a good answer.

I've been on Rowasa nightly for about 6 weeks. I've had considerable improvement--no blood or mucus any more, just varying degrees of constipation, gas, and cramping. Most of my pain is gone.

My inflammation was originally severe.

So I still feel like I'm slowly improving. But as my 6 weeks ends I'm concerned that my times up for improvement. As I still have a ways to go.

At what time do I say, this is all I'm going to get out of the Rowasa?

When I went through that phase, my GI described it as limited rectal inflammation that requires a continuing of the rectal meds until things get back to normal.

It took a while, and as Old Hat mentioned...you coming from severe inflammation and having good results so far...you're on your way.

6 weeks, while seems a long time...actually isn't for nightly Rowasa.

When you say severe, do you mean higher in the colon? or still limited to the rectum?

Are you on oral 5ASA meds?

How are you eating?

You can ask the doc to prescribe you an antispasmodic...that can also help with cramping.

Stool softeners, fibre supplements, change in diet to increase motility can help with the constipation part.

Awesome you're doing better.

q

Yes, it can be totally normal. Some people use Rowasa indefinitely to keep things under control. There is no recipe for success that works for everyone but it sounds like you've seen a lot of improvement and that's great. Why is 6 weeks a deadline? If you're still having symptoms, you could try adding steroid enemas or Canasa in the AM and see if you can get things under control.

Some I know have been on them for a year nightly. I've used Salofalk enemas (same as Rowasa) for 23 years, although not nightly. The longest I was on nightly was 4 months.

Regarding the studies...that's the time for the study. No one is studied for a lifetime...they should call me!

q

I started taking rowasa with Lialda and it took 8 weeks to fully recover.  Toward the end the blood, mucas, and urgency were better but I still had diahrrea - and then finally after 8 weeks I produced a normal BM.  Hope you see improvement soon!

Since then I have to continue with regular rowasa treatments or I will go back into a flare.  BUT, totally worth it to be able to carry on with normal activities and not always worry about locating the closest toilet in every social setting.

I looks like I'll be adding Canasa during the day.

How long should I lay down for?

I didn't really improve much after that. I am still on the nightly rowasa.

Things have been getting a little more active recently, but not horribly. Something about Fall. I always do worse in the fall.

I think I'll lay down for a while anyway because my worst inflammation is high up.

I would love to get off the mirilax. It sounds like a dream.

5mg every third day - that's a super fast taper! I've never heard of anyone starting with that low of a prednisone dose for UC, either... Usually people start at 40mgs for one to three weeks to get symptoms under control and then taper 5mgs per week; I wonder why he has you on such a low, short regimen. It will be interesting to see if it does anything for you.

If you have pancolitis then the rectals will definitely be limited in their ability to treat you. It can work wonders for the parts it reaches, but it can't do anything beyond the rectum and sigmoid, so the rest of your colon will still be inflamed. I would continue using them, though. At least you can get *part* of your colon looking pretty!

Yeah, if prednisone doesn't kick you into a remission (which I wouldn't give up on after only a 20mg regimen), then the docs will probably want to start you on the long-term immunosuppressants or biologics. However, they are serious drugs with serious side-effects and not to be taken lightly; do the research on those drugs and make an informed decision. The part that had me putting them off as long as possible is that if you start one and it works, then you kind of have to stay on it indefinitely because if you stop and try it again later, it is much less likely to be effective since your body develops antibodies to it... so it can be sort of a one-way street... on a road that has life-threatening side-effects. They can be very powerful tools against UC, but just make sure you're not just jumping into it.

If you are hesitant about going that route, there are a TON of other alternative treatments out there that the doctors will not bring up with you since they are usually only educated about prescription solutions. If you're interested in finding out more, start a thread asking about alternative treatments and you'll get more replies and ideas than you bargained for.