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Rowasa - can't get thru the night?

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Ulcerative Colitis
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Posted 3/30/2008 2:39 PM (GMT 0)
I was diagnosed about 8 months ago w/ UC. Lialda put me in remission and I naively thought I was done! Had a flare up almost 6 weeks ago w/ and finally am starting to get some relief. Tapering down from 40mg Prednisone, now I'm at 20mg/day. Doctor recently started me on Rowasa enemas nightly b/c I'm still experiencing some bleeding. The past 2 nights I wake up about 3 hrs after the enema w/ an intense urge to go to the bathroom. It's mostly gas & blood (not as much as full-blown flare-up) Is this just the Rowasa coming back out? Sorry to be graphic (UC takes all the modesty out of us, eh?) but I'm concerned since it's not staying there the full 8 hrs... Is this normal?

I've learned so much from these boards and am so grateful to be able to talk to folks that are going thru this with me. I'm a fitness buff & nutritionist w/ a very healthy diet and lifestyle - so it just goes to show that UC can occur in even the healthiest people. I have to admit that I used to think that "stomach problems" stemmed from unhealthy diets & lifestyles (which I'm sure some do) -- but to say the least, I've been humbled by this disease.

fitmom of 3 boys
Diagnosed w/ UC Summer '07
2 Lialda's/day put me in remission for 6 months
Flared up in Feb '08. 4 Lialda, Canasa - no relief. 40Mg prednisone helped, but not full remission.
Now tapered down to 20mg Prednisone & Rowasa w/ 4 Lialda daily.
Posted 3/30/2008 4:34 PM (GMT 0)
Retaining Rowasa for 3 hours is still a good amount  of time to promote healing.  You could try using 1/2 the bottle though.  Using a full bottle gave me incredible diarrhea.  I use 1/2 bottle every other day and have been in remission for about 1 1/2 years. yeah
Posted 3/30/2008 5:35 PM (GMT 0)
Some people can't tolerate Rowasa, like me. I only kept it in all night once, and a few times for more than an hour, but mostly only 15 to 30 minutes.
James
Posted 3/30/2008 7:42 PM (GMT 0)

Try this:  After you shake up the bottle, let it sit there for a couple of minutes (I usually brush my teeth, wash my face, get ready for bed). then I squeeze all the air out until some of the medication comes out.  I quickly put the top back on to avoid letting air back in.  When I get ready to take it, I sqeeze a little on my hip to make sure all the air is out, then I insert it and take the medicine. 

This helps me with the gas.  I found out if I could get the gas much lower, I could retain the medicine for a longer period.  Good luck.

Posted 3/30/2008 7:48 PM (GMT 0)
I have had some recent issues using the rowasa only but after a bm where it makes it very difficult to even keep the tip in let alone the fluid, my proctologist said he thinks it's from an old fissure which is causing sphincter spasms which in turn causes my rectum to reject the tip and fluid. Since the rectum seems to get the worst of this disease in many cases you might have some addtional rectal inflammation going on which is making it difficult to keep the fluid in...just a thought.

Post Edited (bbc) : 3/30/2008 10:00:20 PM (GMT-6)

Posted 3/30/2008 7:56 PM (GMT 0)
Lemonhead, thanks for the tip! I'll try that tonight. The gas is definitely the culprit for not being able to retain it long. The increase in Lialda has made the gas worse as well. I hope it's not b/c I can't tolerate the Rowasa. The doc's next step is R6 (something like that), then Remicade, then he's talking about surgery. I HAVE to get this under control, and I HAVE to get off of Prednisone. It's absolutely horrible.
Posted 3/31/2008 2:49 PM (GMT 0)
Keeping Rowasa in for en entire night didnt happen overnight for me.  I'd say, it took 2 weeks or so to keep it in for 8 hours.  Initally, Id hold it for 30 minuts to an hour.  But as you start to heal, it will get better.

After awhile, I would wake up in the morning and not even HAVE to go the bathroom!  :-)

 

Posted 3/31/2008 4:46 PM (GMT 0)
That is so encouraging, MicheleV - thanks! Following Lemonheads advice (removing the air first), I was able to keep it in about 6 hrs, but woke up with a good bit of bloody Diarrhea (as usual - the mornings are always hard for me). I was almost starting to wonder if my body was rejecting the Rowasa. I'm going to stick it out for a few weeks though before I give up. As I'm starting the Rowasa, I'm tapering my Prednisone, so I'm not sure if that is why I'm having a mild increase in symptoms. I seem to start out every morning really rough (4-6 visits to the bathroom, bloody diarrhea) but then by lunchtime it slows down, and even stops bleeding. But then it picks right back up the next morning. Is this common? It doesn't seem to be different with or without coffee.
Posted 3/31/2008 4:54 PM (GMT 0)
I am so glad to hear I'm not the only one that can't keep the enemas in for long ! Sometimes I can keep it in for 30 minutes or so ,and other times a few hours. I thought there was something wrong with me ( well there is of course !!) but I just hate these enemas so much. I suppose you just have to be patient and keep going with them.Nobody ever tells you these thigs when they prescribe these meds. I've only learnt most of the information that has helped me from this forum.
Posted 3/31/2008 7:33 PM (GMT 0)
fitmom00...welcome to the forum!

What dosage are you on with pred?

You should stay on nightly Rowasa until you're completely off the pred...then see how you do before you even consider to taper them to every second night.

You're doing fine on them from my perspective.  They'll eventually become your very best friend and maybe eventually keep you off pred.

quincy

Posted 3/31/2008 8:37 PM (GMT 0)
Glad to hear that helped. It is normal to have bad mornings....at least for me. I never plan anything before 10 (except work), and I usually always feel fine by early afternoon. The enemas should help quite a bit. Best of luck.
Posted 3/31/2008 10:43 PM (GMT 0)
Quincy - thanks for your post.  I'm currently on 20mg of Prednisone daily (10mg 2x daily).  I'm also doing 4 Lialda and of course the Rowasa.  (I started out at 40mg about 3 weeks ago).

I totally agree w/ previous poster as well - I've learned so much more from these boards than from my doc!  To be honest, had I found this board before, I probably would've turned down the Prednisone and tried some alternate methods first.  I'm currently playing around w/ my diet to see what happens.  I've seen a lot of info on the SC diet - but I don't know how realistic that is for me.  As a someone who has worked in the fitness industry, it goes against everything I believe!  sad But I know these are different circumstances. 

Anyone had luck w/ the SC diet, or something similar? 

Posted 4/1/2008 1:03 AM (GMT 0)

Hi FitMom,

You sound very similar to me. I am also a mom who is into fitness and nutrition. Last year around this time, I ran a marathon. Sadly, this year, a UC flare has kept me from working out as much as I used to. I am currently taking 30 mg of prednisone and 4 Lialda a day. I am symptom-free at the moment. Since you live a healthy lifestyle, I recommend you check out the Specific Carbohydrate Diet (SCD). The book on which the diet is based is "Breaking the Vicious Cycle" by Elaine Gottschall. Look it up on Amazon and read the testimonials by other people with IBD. They are amazing. I have been on the diet 2 months and I am a believer. The diet does take some sacrifice, but it's well worth it. I hope this helps.

EllieKate

Posted 4/1/2008 5:29 AM (GMT 0)
Hi fitmom00....I think that watching your diet regarding foods that can cause active peristalsis or gas or whatever subjectively will give you more comfort.

Tapering pred....you'll have symptoms anyway.

The SCD and other diets are definitely a challenge regarding commitment. Food to me won't cause flares or treat them...so, I'm not a believer. I have a friend who's on it...she still bleeds, but doesn't have a lot of discomfort...so I think that's what it will help with immensely.

Regarding tapering to 10....you could do 20, 10, 20, 10, 20, 10, 10, 10...for however long it's supposed to be...do the same when going to 5.
or, do you go from 20 to 15? whatever, the staggered tapering makes a lot of sense to me...but as I mentioned..never been on pred.

Regarding exercise....don't overdo because your body can react to that as well...


Heal well!
quincy
Posted 4/1/2008 1:02 PM (GMT 0)
EllieKate, I have been looking in the SC Diet and am amazed at all of the testimonials. It's just so restrictive, and what's more, it restricts so many "healthy" foods (fruit, grains, veggies) which is really all we eat! I am going to look into it though and certainly if I can't get this under control soon, will give it a shot. I'd much rather treat naturally if possible. Have you gained weight on the Pred? I've been super-fanatical about my diet & trying to workout when able, so I've only gained maybe a pound, but my face is HUGE! Not to mention the psychological symptoms. Now that I'm down to 20mg, the hunger isn't so strong.

Quincy, my doc told me to taper 5mg a week ... no other instructions. I think I'll try the staggered tapering though - that seems to make sense to me as well. I don't imagine it would hurt.

I kept the Rowasa in all night again - yeah! Had 2 semi-normal BM's this morning with some blood, but nothing like it has been. Had a LOT Of cramping though. I was feeling so good I actually drove the kids to school this morning instead of my husband (I haven't been able to do that in 6 weeks) ... and planned to go to the grocery store too, but ended up having to rush home. Oh well - I still feel like I'm on the road to recovery! I love this forum!!!!!!!!!!!!

Renee
Diagnosed UC 38cm in August 2007
Currently in a flare since Feb 08.
4 Lialda, 20mg Prednisone (tapering), Rowasa nightly
Posted 4/1/2008 2:31 PM (GMT 0)
Hi FitMom,

Yes, the SC Diet is restrictive, but it doesn't really restrict vegetables and fruit (definitely it forbids grains of any kind). In the beginning of a flare, people are advised not to eat raw vegetables and fruit, but they can eat cooked fruit and vegetables. In any case, when I started the diet, I ate as much cooked (and some raw) vegetables as I wanted and one bowl of fruit per day. I also modified the diet to suit me. For example, I don't eat any of the dairy products allowed on the diet, including the homemade yogurt (I take probiotics instead). Look at this website if you're interested: www.scdiet.org. In regard to weight gain, lucky you! I have gained 10 lbs. +, but I had at least 5 lbs. to gain because I had gotten so skinny pre-prednisone. I tapered down to 20 mg. of prednisone today so, hopefully, my hunger won't be as strong as you reported. The psychological symptoms are the worst, but if prednisone will get me out of this flare, I'll suffer through it.

EllieKate

Posted 4/1/2008 2:52 PM (GMT 0)

Renee, thats great!!!  The more you can keep it in...obviously the better off you'll be.

Im another one who really cant handle restrictive diets.  I do eat well, and I work out regularly, but my colitis has always been tied to my stress levels.  When my mental health is good, I can eat anything and everthing.  Coffee is a very important part of my morning on most days! :-) I also enjoy yogurt and have been living on pinkberry yogurt lately.  Mmm.

Hope the Rowasa does the trick for you.  I took it for a few years at one point, but I had a large issue with hair loss eventually, and switched to Asacol (which didnt work at all).

Michele

Posted 4/1/2008 7:03 PM (GMT 0)
Renée...Woohoo regarding the Rowasa....and your morning routine. Sounds as though you're doing much better...keep us posted.
q
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