How Long Do Most of You Retain Rowasa for?

I just started using Rowasa because I flared up for the first time since my Dx. I can only hold in the Rowasa for about 1-3 hours on the usual. I just get the urge to go and want to hold it in but it becomes impossible. Is this long enough to help me? And is there anyone who can make it all the way through because right now I don't think I can pull it off for that long. -Jeff

When I am flaring badly I can only handle it for 30-60 minutes but as the inflamation goes down it stays all night.

Ditto the other comments. There were times that I couldn't even keep it in for 15 minutes. If that was the case, I would get another bottle and readminister it. I'm not sure if that was a good thing, but usually the 2nd dose stayed in all night. Additionally, when it was really really bad, my GI said I could do one in the morning and one at night. That helped to get the inflammation under control much more quickly. Good luck!

quincy- I was told I had mild UC the GI never gave me specific location. He said I did not have it to bad but I suppose he is right because this is my first flare since being Dx. My Lialda dosage is just 1 pill a day which is 2.4 mg or however it is broken down into in pill form. Thank you all for your experiences with Rowasa. I see a lot of you are taking more oral pills so I was thinking of asking my GI to up me to maybe move me along a little faster. The mucas is gone and there is only a little blood. Now its mainly just Diarrhea, is that a good sign? Well thank you all for your input its awesome.-Jeff

I am also ditto'ing everyone's comments here. At first I couldn't hold it in all night and even slept with a diaper on... I even thought about inventing some sort of sexy diapers for young women with U/C.. JOKE... LOL... Anyhow, After a week or so, I was able to start holding it in longer and longer and now after I... how should I say this.... Get it all in..... I don't even know it's in there and can hold it in all night no problemo....

Just wanted to share too :)

That's good that Rowasa is helping you. You still have a ways to go before you reach remission though. We each have our own definition of remission but for me, it is lack of all symptoms - no pain, no blood, no urgency, no multiple bathroom runs, no D and typically I wait about 2 weeks to a month of being symptom free before I claim remission.

Jeff....try to focus on the meds and that you're improving....you'll get sick of me saying that. Patience really is needed with 5ASA meds...it's a longer treatment/maintenance for long-term gain. I've been doing the oral/rectal 5ASA meds for almost 19 years and it's paid off. Patients eventually get sick of using the meds or cannot use 5ASA meds eventually....I hope you make the decision to the commitment if you can use them. The top reason is you'll learn how to detect flares earlier and earlier and treat them quickly. You'll also help prevent your UC from spreading....contrary to the belief that limited UC stays as such..there's no guarantee you are one that it will. As well, 5ASA meds are strongly believed to help prevent cancer in the colon....a good thought and insurance for the future.

You must stay on the Rowasa for at least 2 weeks (or longer if necessary) nightly and if everything is "normal"..stay on them for another week then go to every two nights....stick with that for at least 2 weeks then go to every 3 nights..etc. I have tried quick tapers, slow tapers and all inbetween...and I've found that my colon tells me what it needs. I don't ignore symptoms, treat early and accept that it's what I must do in order to keep my colon working as best it can. As I look back, I can't believe I'm doing as well as I am and it pleases me as well as my doctor....apparently, he states I'm one of a few who have been 100% faithful to the 5ASA oral/rectal regimen...so, ignorance is bliss I guess..I never assumed I had a choice to not use it.

You should be on at least 2.4g of Lialda to keep everything above the area of inflammation calm and quiet...mild UC is usually clinically meaning limited to the rectum or up to and into the sigmoid. Regardless....I'm thrilled to hear the meds are working.


Keep us posted....it seems your attitude already has you off to a good start.

quincy

Thank you for the kind words...you're already on a good track regarding dealing with UC. Experience, unfortunately, is the best teacher.

Regarding tapering the rectal meds...by having enough refills and having the doctor leave that dosaging to YOU...you'll not have a tendency to wait to treat flares.

Some are able to get off meds, some (like me) are med lifers. I use the tapering method of the enemas to find a maintenance level. It's all paid off since my flares have never been as bad as the first one.

Let us know how the GI appt goes as well as the dietitian. Common sense is really a help regarding eating. While I don't believe food causes flares, the action of foods themselves in the digestive tract can sometimes create a huge disagreement and an exacerbation of some symptoms...such as gas and diarrhea.

I'm impressed with your doc that he put you on the oral/rectal 5ASAs....not all doctors agree that the rectal meds do any good...seems a no-brainer to me

One thing you should ask the doc is where exactly is your UC limited to...or is it throughout? and if he'll be doing blood tests for liver and kidneys since you're on the 5ASA meds.

Continue to feel better.

quincy

Hi Jeff...good to hear your doc got you up to at least the right amount of meds for treatment....maybe you can eventually taper to the one daily..but with having left-sided UC, I would think that the 2 daily would be best. Not too high, not too low.

Please be patient with 5ASA meds....like the tortoise and the hare analogy.
If you can use them, it's best for lowest possible dose for as long as possible. So far for me it's been almost 19 years...I intend that to continue.

Learn how to use the enemas effectively. You must taper them...but do let us know once you're "normal". You react well quickly to them...that's a good sign.

As far as food, that's my doc's suggestion as well. I've never been afraid of food, and do recognise foods that tend to cause me gas. Gas is the major contributor of discomfort to me except when flaring...then it's gas and rectal pain. My flares are minimal...but I do deal with them asap.

Anyway...do make wise choices as to what you think you can eat with having the most comfort....but make sure you eat. I believe that many newly diagnosed patients stay away from food believing that it will help, but it doesn't. Trial and error....

Hope you find the right balance for you.

Keep us posted.

quincy

The enemas are meant to be taken at night..although some doctors do prescribe them twice a day.

They do help...definitely...and as the colon heals, symptoms during the day will lessen.

Welcome Mom-e!

quincy

Awesome!!

Please stay on them for at least another week nightly and then go to every two nights....etc.

Keep us posted.

q

I'm thrilled you're doing well on them...it's the butt meds that can be a lifesaver...I'm just the messenger..lol!

definitely keep us posted.

Curious....were you ever on pred? or has 5ASA been the only med of choice for you?

Were you always on Rowasa since diagnosis?

q

Hi..huge kudos for you sticking with them!!!

Now, this is totally my opinion.....I wouldn't call it remission, but would. I'd say your flare is now controlled....and while you're tapering and remain in a quiesced state...then I'd say you're in remission.

It's a word/state that is a result...again my opinion..that's not as important as the getting there learning the symptom/med connection/process.  As well...any regression that's consistent should require an increase of the Rowasa or to start them again if you're off them.   Just don't wait too long.

It took me 2 years to get it all figured out.

Definitely keep us posted.

quincy