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Posted By : Katerina-b - 11/23/2016 9:07 AM
Hi everyone, Im back again seeking some advise. I've been in a flare since early September and getting really frustrated. For most of this time I've been on Lialda, Canasa and hc supps. I had a scope done on November 9 which showed mild, distal UC. At that point I was tapering hc supps, after failing to taper once. I was actually feeling better, having no blood, and one formed bm per day, although some bloating. After the scope GI said to stop the hc supps and continue with just Lialda and Canasa. I asked him for Rowasa, but he refused. This seemed odd because the patch of inflammation he found was 30 cm into the sigmoid colon. But maybe he knows something I don't...

I did follow his advise though. After about 12 days of discontinuing hc supps I noticed some symptoms coming back - more bloating, gas, mushy bm once per day. (Around the same time I was trying to add Culturelle and l-glutamine, not sure if it is related). Yesterday, after noticing a marked deterioration, in fear of being really sick over Thanksgiving, I called my GI. Of course, he was out the country! I left a message with his backup, but she never called me back. Last night, in desperation, I decided to try some expired Rowasa I had from some years back. This morning my bm was formed, better than I had in days! I do have good history with Rowasa initially. It helped me very well when first diagnosed. Later on however, I noticed that it would help for first two days I take it and then stop. My question is - should I continue doing Rowasa until my doctor returns? Im scared it will not help for long...
Diagnosed in 2010 - moderate pancolitis
2 year remission since 2014
September 4, 2016 - flare begins, 6 or more bms per day, 40 mg prednisone, hydrocortisone suppositories (stopped Nov. 9)
Scope November 9 showed mild, distal UC.
Current medication: Lialda 4 per day, Canasa, Rowasa?, Enterosgel, Baswellia, Turmeric, B12

Posted By : iPoop - 11/23/2016 9:15 AM
I'd call and perhaps the on-call-gastroenterologist will prescribe your rowasa :-)

Yes, 30 cms in is sigmoid colon territory and rowasas are the best means to get there. Canasa doesn't have a candle's chance against one heck of a nor'easter of a blizzard of helping.
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Lialda, 12mgs pred (tapering)

All this time I assumed Game Of Thrones was who got to the toilet first each morning when there's many in your household...

Posted By : Katerina-b - 11/23/2016 9:27 AM
Thank you for your reply. I just spoke with a the backup and she prescribed Rowasa. Said to take it for 7 days. Hoping it helps! iPoop, why would Rowasa help me, in the past, just for couple of days when I start taking it? Hoping this doesn't happen this time around...
Diagnosed in 2010 - moderate pancolitis
2 year remission since 2014
September 4, 2016 - flare begins, 6 or more bms per day, 40 mg prednisone, hydrocortisone suppositories (stopped Nov. 9)
Scope November 9 showed mild, distal UC.
Current medication: Lialda 4 per day, Canasa, Rowasa?, Enterosgel, Baswellia, Turmeric, B12

Posted By : iPoop - 11/23/2016 10:00 AM
Awesome on the script.

"why would Rowasa help me, in the past, just for couple of days when I start taking it?" Mesalamine delivered through rowasa is a strong anti-inflammatory medicine that goes well into the sigmoid colon with 4 grams of medicine (as opposed to canasa's 1 gram that's limited to the rectum). They're effective :-)

A good reason to say to your normal doc once he's back: I got a 7 day script for Rowasa and it worked wonderfully, how about a 30 day supply...
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Lialda, 12mgs pred (tapering)

All this time I assumed Game Of Thrones was who got to the toilet first each morning when there's many in your household...

Posted By : Katerina-b - 11/23/2016 10:14 AM
I am hoping they would be effective... what I mean is it helped just for few days and then stopped... this was before... Maybe the inflammation was too much for it to handle?
Diagnosed in 2010 - moderate pancolitis
2 year remission since 2014
September 4, 2016 - flare begins, 6 or more bms per day, 40 mg prednisone, hydrocortisone suppositories (stopped Nov. 9)
Scope November 9 showed mild, distal UC.
Current medication: Lialda 4 per day, Canasa, Rowasa?, Enterosgel, Baswellia, Turmeric, B12

Posted By : iPoop - 11/23/2016 10:22 AM
I'd guess too much for it to handle. There's a maximum effect of anti-inflammatory mesalamine.
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Lialda, 12mgs pred (tapering)

All this time I assumed Game Of Thrones was who got to the toilet first each morning when there's many in your household...

Posted By : quincy - 11/23/2016 10:48 AM
7 days isnt enough....any refills for it?

Keep us posted.

Who gave you the script for the rowasa you already have?
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Post Edited (quincy) : 11/23/2016 9:57:15 AM (GMT-7)


Posted By : Katerina-b - 11/23/2016 11:40 AM
Quincy, I got it from a GI I had two years ago. Im pretty sure if it helps though, my current GI will extend the prescription. Should I be using it more longer than 7 days to see improvement even though Im already on Lialda and have been doing Canasa?
Diagnosed in 2010 - moderate pancolitis
2 year remission since 2014
September 4, 2016 - flare begins, 6 or more bms per day, 40 mg prednisone, hydrocortisone suppositories (stopped Nov. 9)
Scope November 9 showed mild, distal UC.
Current medication: Lialda 4 per day, Canasa, Rowasa?, Enterosgel, Baswellia, Turmeric, B12

Posted By : quincy - 11/23/2016 12:17 PM
Absolutely....minimum at 2 weeks or more depending on symptoms. You should also taper them (i can explain later) to a maintenance of twice a week.

Good you can get refills. Just had to clarify.

Let us know how you do on them.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Posted By : Katerina-b - 11/26/2016 8:44 AM
I have an update on my Rowasa usage after 4 days now. The first day was great, bm consistency practically back to normal. Second day, more loose, third a little better. Today however I had some constipation... this is a new development. Could Rowasa do that? Overall it seems Rowasa is doing a better job than Canasa did. Fingers crossed this will go on. The constipation however seems to be odd...
Diagnosed in 2010 - moderate pancolitis
2 year remission since 2014
September 4, 2016 - flare begins, 6 or more bms per day, 40 mg prednisone, hydrocortisone suppositories (stopped Nov. 9)
Scope November 9 showed mild, distal UC.
Current medication: Lialda 4 per day, Canasa, Rowasa?, Enterosgel, Baswellia, Turmeric, B12

Posted By : iPoop - 11/26/2016 10:27 AM
Day-to-day variations are very common with uc, sounds like you're slowly improving. Give rowasa 2-3 weeks for the biggest improvements. Constipation can be a sign of rectal inflammation.
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Lialda, 12mgs pred (tapering)

All this time I assumed Game Of Thrones was who got to the toilet first each morning when there's many in your household...

Posted By : quincy - 11/26/2016 12:15 PM
Ditto......it's not the rowasa....it's part of healing.

Keep us updated after 2 weeks and stick to nightly.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Posted By : Katerina-b - 11/27/2016 3:21 PM
This morning my bm was almost back to normal, so good news on that. However for the past couple of days I noticed more gas. From previous flares I know that gas can indicate increase in inflamation. I also still have rumbling in my stomach, which i think is partially from lialda. I heard something that Rowasa does not necessarily hit the rectum very well. Is that so? If this is true, my gas could be due to a rectal inflamation. Tomorrow I was thinking to do canasa in the morning and rowasa at night. However, im still taking 4 lialda, so to accommodate the additional canasa, i could decrease lialda to 3. Does anyone have experience doing that? I don't want to overdose on mesalamine... Any advise is appreciated!
Diagnosed in 2010 - moderate pancolitis
2 year remission since 2014
September 4, 2016 - flare begins, 6 or more bms per day, 40 mg prednisone, hydrocortisone suppositories (stopped Nov. 9)
Scope November 9 showed mild, distal UC.
Current medication: Lialda 4 per day, Canasa, Rowasa?, Enterosgel, Baswellia, Turmeric, B12

Posted By : iPoop - 11/27/2016 3:55 PM
I'd take 4 lialda plus rowasa plus canasa, there's no real concern of an overdose on a 90 percent topical medication such as mesalamine. There is such a thing as your inflammation and disease severity being beyond what the anti-inflammatory medications can handle, and then it's time to talk immunomodulators (imuran/azathioprine or 6mp/mercaptopurine).
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Lialda, 12mgs pred (tapering)

All this time I assumed Game Of Thrones was who got to the toilet first each morning when there's many in your household...

Posted By : Katerina-b - 11/29/2016 9:11 AM
So, yesterday I did try to do canasa in the morning and rowasa at night, while still taking 4 lialda. The results were not what I expected. During the day I felt fine, actually less gas. At night however, I woke up with bad urgency and gas. Had a bm at 6 am, prior to eating breakfast, which is unusual for me. The consistency was like number 1 on Bristol chart (or 5... hard to tell), with cramps. about half an hour later another bm, this time almost normal looking... but on paper I noticed some mucus and a tiny bit of blood, which I know is a sign of inflammation. I also had bad cramping and slight nausea. I will note that its almost "that time of the month" for me, so maybe that's a contributor to the symptoms? Additionally, I've been taking a fiber supplement and enterosgel, which makes bm more bulky. Maybe that's too much?

This all is very frustrating to me as I had one bm per day ever since stopping pred in early September. After starting rowasa I finally thought that Im getting out of the woods, but no:( Can this new development be caused by combining rowasa and canasa? I didn't do canasa this morning and called my GI. He will be quite unhappy to know that I've been experimenting with my meds... I have an important event coming up in two weeks, and just can't afford to go into a bad flare. What now?

Posted By : TroubledTurds - 11/29/2016 10:08 AM
"Maybe that's too much?"

yes - try making one change at a time - and give that change a few days before you make a determination as to whether it was good or bad -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

Posted By : Katerina-b - 11/29/2016 10:24 AM
Soynomore, the thing is, I've been doing enterosgel and fiber since September... but maybe since rowasa started to solidify things, too much extra bulking is no good. And I'm guessing adding in a probiotic at this point is not the best idea?
Diagnosed in 2010 - moderate pancolitis
2 year remission since 2014
September 4, 2016 - flare begins, 6 or more bms per day, 40 mg prednisone, hydrocortisone suppositories (stopped Nov. 9)
Scope November 9 showed mild, distal UC.
Current medication: Lialda 4 per day, Canasa, Rowasa?, Enterosgel, Baswellia, Turmeric, B12

Posted By : TroubledTurds - 11/29/2016 11:25 AM
it's so hard to say what's gonna work and what's gonna screw things up from one minute to the next - if it were me, i wouldn't make any more changes -

and monthly er uh "things" can definitely rock the boat for sure -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

Posted By : quincy - 11/29/2016 12:06 PM
Stay on the Rowasa......maybe use half a bottle.
Try not to micromanage....for me, the enemas will cause discomfort sometimes.

Do you have a rx for bentyl? Maybe worth trying an antispasmodic before bedtime.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Post Edited (quincy) : 11/29/2016 11:10:55 AM (GMT-7)


Posted By : Katerina-b - 11/29/2016 1:06 PM
I don't have a bentyl rx, but will request one at my appointment tomorrow. I spoke with the GI and he said I might have to get back on steroids:( I just don't understand why would the symptoms come on so suddenly. I did absolutely no changes that could trigger them.
Diagnosed in 2010 - moderate pancolitis
2 year remission since 2014
September 4, 2016 - flare begins, 6 or more bms per day, 40 mg prednisone, hydrocortisone suppositories (stopped Nov. 9)
Scope November 9 showed mild, distal UC.
Current medication: Lialda 4 per day, Canasa, Rowasa?, Enterosgel, Baswellia, Turmeric, B12

Posted By : quincy - 11/29/2016 1:20 PM
So....what exactly are your symptoms? Doesn't sound like pred is necessary, although steroid foam enemas could be.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Posted By : Katerina-b - 11/29/2016 1:28 PM
The symptoms are 2 bms this morning (formed,somewhat constipated), cramping, some mucus and a tiny bit of blood. So far, throughout the day, I felt about the usual amount of abdominal discomfort, but feel very tired. GI is probably thinking hydrocortisone suppositories again, which I discontinued three weeks ago (they were helping). Quincy, for how long is it safe to be on them?
Diagnosed in 2010 - moderate pancolitis
2 year remission since 2014
September 4, 2016 - flare begins, 6 or more bms per day, 40 mg prednisone, hydrocortisone suppositories (stopped Nov. 9)
Scope November 9 showed mild, distal UC.
Current medication: Lialda 4 per day, Canasa, Rowasa?, Enterosgel, Baswellia, Turmeric, B12

Posted By : quincy - 11/29/2016 1:51 PM
The steroid supps can be used for a few months if necessary, and you can change the canasa for them during the day and still use the rowasa at night.

How much fibre and when?

I think the antispasmodic will help. Have you cut out the bosweilla and turmeric?

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Posted By : Katerina-b - 11/29/2016 2:03 PM
I'm taking psyllium husk twice per day, after breakfast and before bed. Overall amount is one teaspoon. Today I'm thinking to just do half a teaspoon in the evening.

I am still taking Boswellia and turmeric. I credit Boswellia for putting me into a complete remission two years ago. I noticed though when I stop taking it, symptoms return, so I don't want to mess with it. As for turmeric, I'm not sure if its even doing anything. I'm taking 300 mg per day, which is a very small dose.
Diagnosed in 2010 - moderate pancolitis
2 year remission since 2014
September 4, 2016 - flare begins, 6 or more bms per day, 40 mg prednisone, hydrocortisone suppositories (stopped Nov. 9)
Scope November 9 showed mild, distal UC.
Current medication: Lialda 4 per day, Canasa, Rowasa?, Enterosgel, Baswellia, Turmeric, B12

Posted By : Sara14 - 11/29/2016 5:02 PM
Canasa never did a thing for me. Im a big proponent of Rowasa enemas. I wouldnt worry about using steroid suppositories one bit.
32 years old; diagnosed March 2007. Scope 9-29-16: mild-to-moderate chronic and active proctosigmoiditis. A week later, tested positive for campylobacter & later, c diff.

Hospitalized 2x since Oct. Three courses Flagyl & Cipro since October, improved to normal each time. On Dificid for C diff after Vanco only helped a few days. Delzicol, 6, 2xday; Rowasa nightly; Singulair; Allegra; B-12. Vegan.

Posted By : Katerina-b - 12/16/2016 9:23 AM
Hi everyone, Im back with some updates. I've been using Rowasa for about three weeks now. I also decreased my Lialda to 2 per day. After decreasing Lialda, I felt 100% better the next day! Almost back to normal. This lasted for a little more than a week, and I thought I was out of the woods, at last! I never did the steroid enemas, because everything was going so well on just Rowasa and 2 Lialda.

BUT, I feel like symptoms are coming back again for the past couple of days. I had final exams, stress at work, and I've been eating more sweets... All of this might have been contributing factors. I've seen my doctor on Wed, and he said to do steroid enema once per week, plus nightly Rowasa and 2 Lialda. I still havn't started yet... I'm thinking maybe I should try steroid supps instead, first?

I still have one formed bm per day, but it became slightly more soft and broken up. Also there is more bloating. No blood or mucus. I am noticing slight pain on my lower left side (where my inflammation is). Any thoughts are appreciatedsmile

Post Edited (Katerina-b) : 12/16/2016 9:05:48 AM (GMT-7)


Posted By : TroubledTurds - 12/16/2016 9:58 AM
i would suggest following your docs plan for 7-10 days and se where things are -

and eat less sweets wink
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

Posted By : quincy - 12/16/2016 10:48 AM
I would do the steroid supps in the morning and the rowasa at night.
Did you just drop the Lialda or taper it down?

The sweets will make your stool softer, especially of they are of the the fat variety.

All sounds good.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 7 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Posted By : Katerina-b - 12/16/2016 11:29 AM
I dropped the Lialda from 4 to 2, didn't taper it. As for the sweets, Im a fan of chocolate and cookies smile So hard to resist...
Diagnosed in 2010 - moderate pancolitis
2 year remission since 2014
September 4, 2016 - flare begins, 6 or more bms per day, 40 mg prednisone, hydrocortisone suppositories (stopped Nov. 9)
Scope November 9 showed mild, distal UC.
Current medication: Lialda 4 per day, Canasa, Rowasa?, Enterosgel, Baswellia, Turmeric, B12

Posted By : TroubledTurds - 12/16/2016 12:25 PM
eat enough, especially the dark variety, and you may experience a laxative effect from chocolate -

enjoy !
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

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