Rowasa question...just diagnosed with UC

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ZosoKitty
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/1/2008 8:51 AM (GMT -6)   
Good morning, all - First-time poster. I've been reading through some of the posts here and you all seem to have very helpful comments.

I was just diagnosed with UC this week - I've had 4 flares (including my current one) between 2001 and now and finally FINALLY got up the nerve to go to a doctor, get a colonoscopy, and start managing this thing. I'm 29 years old. My UC is mild, thank goodness. I have lots of inflammation and ulcers in the upper end of my colon as well as in my rectum. I'm awaiting the biopsy results on those.

A few months ago, I changed my diet to cut out processed foods (because during flare-ups I would get very bloated, bad gas pains, and bad D) - I now eat only natural or organic (well, 85% of the time). It has been a tremendous help for my body - I no longer have an upset or bloated stomach while flaring. So now I only deal with the frequent urges to have a BM and, of course, the bleeding.

I've been prescribed Rowasa enemas (doc said 2x/day for 2 weeks --- although, after reading this board, I will probably opt to stay on them for maintenance, tapering to 1x/week after I get into remission), and I'll also be starting Lialda soon (1x/day - I sent my Rx for this to our mail-in service, so I should receive the pills in a few days).

So I have a few questions for you all:
1. I used Rowasa for the first time this morning. It went pretty well (not as bad as I thought!); however, I was only able to "keep it in" for about 3 hours, although the directions say to do so for 8 hours. Is this a big problem? I'm hoping this will be easier to do as the meds start to work.

2. My colonoscopy went really well, but the post-scope has been the worst part. I get a double-me-over kind of pain sensation when I get the urge to have a BM (which for me is every 2-3 hours - even if there is no real BM but just blood/mucus). This started 2 days after the scope - so my guess is that because I had biopsies of ulcers, now that stuff is moving through my colon again, it's irritating the ulcers? I don't know. But has anyone else experienced this? Will it go away soon? I told my doc and she wasn't too concerned. The intensity of pain is reducing, at least, but I'm still having them every 2-3 hours (waking me up in the middle of the night many times). Sigh.

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 11/1/2008 9:06 AM (GMT -6)   
Welcome to HealingWell, ZosoKitty. Very sorry you have the dreaded disease, but I'm so glad you found this community.

I'd say retaining the Rowasa for three hours on the first try is excellent! Many people only last 20-30 minutes at first. As the inflammation subsides you should be able to retain it longer and longer, but for now three hours is good news.

It's normal to have crampy pain for several days after the scope and yes, it is from the biopsy sites. It should resolve in another couple of days. On the off chance it continues after the sites heal, your doctor can prescribe an antispasmodic to help.

I admire your positive attitude, and it will serve you well. Our emotional state plays a big part in this DD, and a positive one can really contribute to better days.
Judy
 
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.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


gaff
Regular Member


Date Joined Jul 2006
Total Posts : 442
   Posted 11/1/2008 9:49 AM (GMT -6)   
A lot of docs prescribe Rowasa for a few weeks and then tell the patient to stop them completely. Most of the patients then have a recurrence of symptoms once the Rowasa is stopped. I have been using it for maintenance for about three years. If I stop using it completely, the bleeding returns. While not in a flare, I have been able to taper the Rowasa to 1/2 bottle every fours days. While in a flare, I use 1/2 bottle every day or every other day.

I use 1/2 of the bottle because a full bottle gives me incredible diarrhea (this has happened with a lot of people on here).
gaff
left-sided UC since 11/05
 Rowasa, Colazal, Calcium, Centrum
Natren Healthy Trinity Probiotics


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 11/1/2008 12:45 PM (GMT -6)   
Hi..welcome to the forum!

3 hours to retain the Rowasa is awesome...especially during the day.

You'll have probably more success with the night dosage. As long as it's in for enough time to have the med to some of its thing...that's good.
Since you can retain it when you're active, seems it probably won't be a problem at night.

I'm questioning whether you are on any oral 5ASA meds such as Asacol?? considering you have cecum involvement....(I'm assuming since there is a form of UC where it's both ends involved with between clear).
that form can eventually become pancolitis from what I read...just something for you to be aware.

The Rowasa should be tapered. Do the 2 weeks and taper the morning one firstly for you to be on the nightly for at least another week or more once you're completely off the morning dosage.

then if you're good on that, you can consider to taper the night dosage...there is a process, but basically your symptoms rule how fast/slow to taper.

Make sure you get lots of refills.

When do you see the doc again?

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


ZosoKitty
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/2/2008 12:35 PM (GMT -6)   
Thanks for the comments, everyone! It's good to hear that my 3 hours with Rowasa is a good start. I'll take my first night-time dose tonight.

Quincy - I'm not on Asacol, but I'll be starting Lialda soon (just waiting for it to arrive via our mail-in Rx service). My doc also wrote me a full year's Rx for Rowasa for me, so I'll be able to get the refills easily as I need them.

I go back to the doc in about 2 weeks for my biopsy results / follow-up.

I'm happy today because those nasty waves of pain I mentioned earlier are barely noticeable today --- last night I slept the whole night through!!! First time since Tuesday night - very exciting (especially considering my Husband and I were out of town staying with friends).

I look forward to getting more good ideas on this forum. Wishing you all good health!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 11/2/2008 11:23 PM (GMT -6)   
use the rowasa during nighttime...or are you using it x2 ...morning and night?

It seems you're improving! good!

q
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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