UC Question: Attn Quincy (or anyone else)

meggsters · 04-13-2005, 09:47 PM

I was on Rowasa retention enemas for 21 days straight. Then I ran out of them, so I was off for 5 days before I went back to my doc. My doc says I look a lot better, although I don't feel that much better. I am a lot better than I was back in Oct/Nov/Dec. But it doesn't seem like I've improved much. Anyways, doc said to continue the rowasa every other night for 2 weeks, and then every third night indefinately. I've been following his directions. I've been taking the rowasa every other night for almost a week now. I am bleeding again, and mucousing (is that a word?) again. I dont' know what to do. Should I start using them every night for a week and see if that helps? Any ideas anyone? I'm really getting frustrated, i've been flaring since Sept 1, 2004

quincy · 04-14-2005, 03:28 AM

Hi Meggsters,

What happened was the abrupt stopping of Rowasa after using them nightly. 5 days without can put you back in a flare.

I would suggest going back to them nightly for at least two weeks. By then, the symptoms should be controlled (since you're back using the Rowasa, the med will be starting to so something already) fairly well.
Then if everything is "normal", then start tapering to every 2 nights.

I know it's frustrating....2 questions: When you were flaring in the Fall, what meds were you on then? Was the 21 days time the first you were ever on Rowas?

You got first hand experience on not how to taper.....now you'll experience it the correct way.

I must congratulate you in that you already know what to do. Yes, start them nightly.

It's a juggling act, and your body symptoms are what fine tunes the dosaging.

How many times a day are you having bms? Are you having urgency? What is the consistency? Did the doc do a check when you went back to see him (you looked better)?
What other meds are you on?

oooh, so many questions, sorry!
quincy

meggsters · 04-15-2005, 06:44 PM

When I was flaring in the fall I was on hydrocortizone acetate suppositories, and then Analpram cream. However, at that time I didn't know what was wrong with me, I had originally been diagnosed w/ hemmorhoids. It wasn't until this February that I was diagnosed with UP or UC. The 21 days was the first time I was ever on Rowasa.

I am going to give it another few days of trying it every other night. I really don't want to have to take them every night. They make it very difficult to sleep, and I have a hard enough time sleeping as it is.

I have good days and bad days. For example, Sunday I went to the bathroom 7 times, Monday-3, Tuesday-1, Wed-3, Thurs-2. It just varies so much. I have urgency, but whenever I do, I actually go. In the past it was so bad that I would be running to the bathroom all day and all that would come out was blood. Now I go every time. It's just that as soon as that feeling comes on, there's no grace period. I have to find a bathroom ASAP. The consistency? Soft, sometimes kind of diahrea(sp?) but not bad. The doc used an anascope to look inside, and said it was a lot less inflamed. Other meds I'm on...Birth control (lo ovral) and Zyrtec.

My doc did say that I may bleed forever. I don't really know what to think about him telling me that. He said that it shouldn't a lot, just a little, but that it may happen every day. And that I should only go off the rowasa if I am feeling exceptionally good for an exceptionally long time.

What do you think of all this? Thanks for all of your advice.

~Meg

quincy · 04-17-2005, 02:57 PM

I think you should still be on the Rowasa nightly. I know it's difficult to sleep, but give it a fair chance. Even if you use it for 2 weeks. I've used it once for almost 4 months nightly (I use Salofalk -- I'm in Canada).

From what you explained...your bms are getting less than the 7 on Sunday. As well, I think the doctor should put you on Asacol or another oral 5ASA med since you've been having loose or diarrhea type stool. It's possible you have mild inflammation higher than the rectum if those are your symptoms.

Another thing......have you had a colonoscopy? If so when?

You're welcome re: questions.....I can offer another perspective at least. Unfortunately, what works for me might not work for others.....but one thing that I've taken from all this which was advice from my doc .. "be patient and use your meds properly". I have, and 16 years later I can say with 100% honesty....it's worked for me.

I would love for you to have the same success.

quincy

meggsters · 04-20-2005, 06:51 PM

I finally got a chance to read this today, I've been so busy lately. I've been using it every other night, and it seems to be working okay. I did have a colonoscopy in early February of this year. My doc said it was only in the rectum, so I guess it's UP, not UC. But as far as I'm concerned, they're the same, and make my life miserable. Though things are getting better, so that is a definate plus.