Rowasa - Makes things more watery?

I wouldn't call it diarrhea but almost every morning since starting Rowasa a little over a week ago I'll pass what's basically watery poo. I dont' have any urge to go to the bathroom. No pain/cramping. I just feel pressure in that area and I'll sit on the bowl, push and out comes a mix of what seems like water and poo. Then within a few minutes I get my "normal" UC type urge (semi-crampy/urgent) and my "normal" disgustingness as I call it will come out. Basically things get more solid. After a course of Prednisone 2 years ago my stools have never returned to normal solid logs. More like a peanut buttery mess. Sometimes sem-solid. But not normal. ( Prior to using Prednisone I never had issues with loose stools even with getting diagnosed with UC).

Got a little off track there..my question is has anyone else experienced this with Rowasa? My guess is I'm not fully absorbing the enema. Or I may have stool in there when I put the enema in at night...and it somehow is liquifying that small amount?

Post Edited (xfinite) : 8/12/2012 9:04:10 AM (GMT-6)

Hi,

The first stool in the morning is usually softer/liquid, with traces of the enema. I have that even when in remission and using Rowasa for maintenance. I guess that, if you are able to hold the enemas through the night, most of it is absorbed or enough of it to give you the medicated protection.
If the other stool(s) later during the day are normal looking and formed, then you should not worry about the consistency and the color of the first "enema" BM of the morning.

Best,
RT

quincy said...
xfinite...It's only a week....
Are you on oral 5ASA as well?

I'd say normal with what you're experiencing, especially if the inflammation includes the entire rectum and higher.

ARe you on fibre supplements and probiotics?

Your food intake during the day can sometimes alter the consistency of the stool formation.

q

Hi Quincy, yep. You may remember my postings last week. I take the max dose of Lialda (4 pills a day). My inflammation is left sided but seems to be most concentrated in the rectum.

Fiber supplements tear me up. I've tried them all. Along with pysillum husk. I take VSL#3. And have since late 2008 (although not continually).

I've tried carb heavy diets. Fat heavy diets. Protein heavy diets. SCD. Paleo. Paleo with autoimmune protocol..etc.. There really seems to be no rhyme or reason for the odd consistency of my stools. All of those diets made almost no difference in what came out of me. However I seem to do best on low carb (as far as stomach cramps and gas). My odd consistency stools literally started right when I took a course of Prednisone. Prior to that my stools always looked normal. Even in my worst flares. Just lots of mucus, blood and pain.

Every once in a while I'll have a dry looking well formed stool come out. But not normal in circumference. Not very wide I mean. I have no clue what makes it happen...but I wish I did. Because for the past 2 years (since that prednisone) what I've seen 99% of the time is a peanut buttery/spaghetti/linguini mess....I don't even recognize the smell of my farts or stool. If that makes sense. By the way can you private message on here? I've read through a lot of your postings and you seem knowledgeable on 5asa's. I'd like to pick your brain a bit.

quincy said...
Hi...I don't have pm on here, but any questions you have, ask them here. Others can pipe in as well.

Have you had stool testing done?

Is the every once in a while dry stool since you've been on Rowasa?

q

Gotcha. Have you been in complete remission in the past from just 5asa? Are you now?

I've had stool testing done 3 times. When I was first diagnosed in Jan 2008. Again in December 2008. And in late 2009. I was playing hop scotch with doctors.

Nope. They seem completely random. I always THINK I have it figured out. Some combination foods...etc..but when I repeat those foods it does not turn out with the same result in the bowl.

My story in short (as I can). Lots of blood starts Jan 2007. No other symptoms (no urgency, pain, loose stools). Doc thinks it's internal hemmies and gives me cortizone supp's. March 2007 I have a sigmiod scope and biopsy. Everything is 100% normal. Blood continues on and off. July 2007 major mucus problems. LOT'S of mucus. Blood on and off still (using the cortizone supp's occasionally). I was in contact with my GI doc this whole time and he kept reassuring me I was fine. Late November 2007 I wake up with terrible pain/urgency. Blood stool. Stool is normal though. Doc schedules me a full colon scope for Jan 2008. Scope reveals left sided UC. Mild. Doc is shocked! I was not...I was 26 by the way. ZERO family history. Never heard of any of this. Doc puts me on Asacol. 9 per day. I feel these are doing nothing. By March he caves in (he seemed reluctant to give me Rowasa/Canasa). Gives me Rowasa but does NOT inform me that should I feel better I should NOT stop taking it. I put the enema in. about 90 seconds later I shot it right out! And figured it was a lost cause. I wake up the next morning with ZERO symtoms. No blood. No mucus. A completely dry normal stool. And I think "Well, found my solution". I DON'T use the enema again. 5 days later mucus...a little blood. This time I keep the enema in for about 1 hour. Next day. Zero symptoms. I'm normal (yes I understand I still had the disease. Just mean I felt normal). This pattern continued for a few months. Until the enema wasn't (or didn't seem to be) working anymore. I was using them completely incorrectly but didnt' know better. July 2008 my doc switches me to Lialda which I think had just come out? His reasoning was it was less pills. Sept 2008 I start seeing a new regular doc. She gets me on VSL#3 which my GI doc never mentioned. And she gets me on high dose fish oil and a host of other recommendations. Great doctor!

December 2008 I feel I'm really getting better. But I'm not convinced Lialda is helping at all. I only had a little urgency right in my rectum. No pain or cramping any where else (earlier in the year I felt it up higher). I decide to stop taking it. The doc didn't think that was a great idea. But he wasn't going to argue. It's my choice. He did give me a script for Canasa at this time. Well...I started getting blood/mucus/urgency more frequently so instead of using the Rowasa I try the Canasa. The next morning.....zero symptoms. I feel completely normal. Again I did not keep using them every night like I should have. A week later the symptoms come back....use the Cansas and the next day I'm fine. After the 4th time however the Canasa didn't seem to do the trick. I'm skipping a bit here but my GI doc schedules me for another Sigmoid scope. Same inflammation. Same areas. Only this scope was TERRIBLE. Being awake....my god. It was bad. The first one I had in March 2007 I didn't have the inflammation and it was pretty smooth.

So the doc puts me on Colozal. Still not informing me that I should keep using the Rowasa/Canasa even when I feel better. By June 2009 I start lots of urgency/pain. And my stools aren't always normal like they had been to that point. In Sept 2009 I decided to start using the Rowasa every night. By mid October I feel I'm seeing progress. I had some normal stools and a little decrease in urgency. But I had moved across country and needed to find a new Doc. He's appalled by what I tell him of my previous doc. He schedules me a scope in Dec 2009 and tells me to just keep doing what I'm doing. And DON'T stop using the Rowasa. Scope shows same inflammation. Same areas. But a bit worse then my previous scope. This doc makes no bones about it. Tells me he starts all of his patients with the big guns AND the 5asa's. If they do well he slowly decreases the big guns (meaning 6MP, Imuran..etc). He makes it clear he doesn't have much faith in 5asa. This scares me. Well....here's where things get really bad. Each time I had these scopes my symptoms temporarily got worse. But this time....things got extremely bad. I get home from the scope with a script for prednisone. 40mg. I took it that night with my dinner. The next morning I have the worse diarrhea ever. And the smells were insane. It literally smelled exactly like what I ate the night before. This goes on for 4 days. The pain was so intense I was screaming on my toilet and had to apologize to my neighbors actually for the noise. I'm on the verge of going to the ER for a good week. I'm also mentally feeling like a lunatic. I grudge it out somehow. But I also lose 10 pounds that first week. By the second week I'm pushing 20 pounds lost. My normal weight is 150 and I'm just about 6ft tall. I'm already a stick...this was bad. The steroid doesn't seem to be helping. So he up's the dose to 60mg. Still doesn't seem to be helping THAT much. All this time he had me stop my meds (colozal/rowasa). I'm tapering as he told me to. By the time I get to 20mg weeks later things start improving. Which made no sense to him. His plan was to switch me to 6mp by the way but told me I could take some time to think about it. Well..I keep tapering. By the time I'm at 5mg things are pretty good. No blood. No mucus. Pretty normal stools. This is getting long so I'll skip again....I decide not to take 6mp. And I go about 3 months feeling pretty darn good. I decide after some odd arguments with this doc that we don't see eye to eye and I want to switch doc's. I end up with his boss who is the head of the GI dept at my local hosp. After that 3 months of relativity no symptoms they come roaring back (big surprise right?). Well this new doc approaches UC completely different then his colleague. He tells me his job is to keep me AWAY from the big guns. And that 5asa's can and will work if you give them time. But he tells me it's going to take a LONG time to fix me. LONG time...he keeps emphasizing this. Since my symptoms came back pretty strong he has me do another course of prednizone. Same thing as before. Starts with massive diarrhea. Disgustingly foreign smells..etc. And MASSIVE gas. I can't describe well enough how massive these farts were (I still get these sometimes actually). 1 month I'm on this stuff. Along with it he has me start Lialda and canasa (i couldn't hold the rowasa in at this time because of how bad things got). That was all summer 2010.

Obviously there is a lot more to this but it's already a novel. If anyone cares enough I can finish the story up until now. But that's pretty much where I'm at. In these past 2 years I've had virutally no blood. Just a few days of mucus here and there (very little). And although it has scared me to death each time I see it....thankfully it's not progressed any further. And I'm pretty sure it was because I missed too many consecutive days of my daytime Canasa (I take them morning and night....or I did. Now I'm doing Rowasa at night). My stools have not returned to normal though.

I may copy and paste this ot make a new thread. To share my story I guess..thanks for reading if you made it through.

Post Edited (xfinite) : 8/12/2012 4:48:47 PM (GMT-6)

quincy said...
Hi...not quite a novel...one suggestion, break it up into more paragraphs..lol.

I'm totally impressed with you remembering all the facts/dates. But lots has happened to you

Your latest doc...is he the one who's big on the 5ASA meds? Are you able to retain the Rowasa throughout the night? Have you improved at all?

I can relate to the screams in the bathroom,... .horrible. Curious what you said to the neighbours?

Do you have copies of all your c-scope or any scope biopsies results?

Have you tried other probiotics?

Except for the blood, your symptoms sound a lot like mine with the lots of ups and downs, diarrhea, constipation, etc....before I started bleeding. Once the bleeding started, it progressed to just diarrhea poos and a bit more weight loss.
It took years I guess for it to progress through the inflammation phases.

Maybe the inflammation tended to go up and down, but my doc did say that with some UC patients....the symptoms and visual sometimes don't match. Some with LOTS of symptoms (except the obvious of bleeding) might not have serious visual inflammation that matches. The opposite can also be true...some obvious symptoms, but not serious with very obvious and angry inflammation.

What do your blood tests state regarding inflammation?

have you had allergy testing done? wonder if there's something else going on?

Have you had hormonal testing done? Some women tend to have ups and downs and UC symptoms can fluctuate as well.
Maybe that's true for men?

Do you have any other health issues?

Are you an avid exerciser or in sports?

What other supplements are you using?

Has this doctor done stool samples for you as of yet? Maybe push for them and ask what he's testing for.


To answer your questions, I've only used 5ASA oral (asacol) and Salofalk enemas for treatment and maintenance. I've been off meds a few times in the "early" years, but recognised that I'm a med-lifer.

I pretty much say I'm more in remission than not. I also increase rectals far before most and then taper.
I used to taper to once a week. A few years ago, I stick to every 3 or 4 days, depending on if I feel like doing one or not on occasion. So, I'll say twice a week is the lowest I'll go.

I've never used VSL #3....The probiotics I loved initially were Natural Factors Protec, and used them for years. Eventually I added a few others, switched and stayed with the ones I use in my signature. I think you should at least try another...not all probiotics work for everyone. I've noticed not all can use VSL...

So, what's happened to you since 2010? I'm ready to read Part 2...

This is your thread, so you lead where it goes..

q

Yea, I'm impressed you made it all the way through!

My current doc is the one who HAS faith in 5asa. His opinion is that people just don't give them long enough to start working. They want a magic bullet so they jump to the big guns. Or they stop taking them once they feel better. I'm happy to say I have held in the Rowasa every night since I started using it a little over a week ago. Once that morning water/mess comes out I do feel some improvement in my rectum. It feels like it's opening easier (hard not to fee a bit self-conscience talking about this stuff...haha).

I just told them that if they hear any screams don't be alarmed....nothing I could do about it.

I do indeed have copies of everything since day 1!

I did take Dr. Weil's probiotic from Jan 2008 until March 2008. I think I stopped because I scared myself into thinking it would make me worse....something I tend to do (I'm a science lover and this disease has forced me to try things....not so scientific).

My blood tests showed very high marks for...gosh I can't remember off the top of my head....Cyoktones? C-reactive protiens? I'm pulling those words out of my inflammed butt....but something like that. I can look through my paper work. I just remember the numbers impressing my doc because of how high they were.

Never had hormonal testing done.

Other health issues. Major life impacting ones..hmmm. I guess panic disorder which I've had since child hood.

I'm very active. Lot's of snowboarding and surfing....well not so much surfing anymore since I moved away from SoCal.

Typical multivitaman/anti-oxidant supplments (Dr. Weil's Vitamin advisor brand which is different from the store bought Dr. Weil. In fact that whole line of his has been discontinued). I also take New Chapter Daily Ginger (not gingerForce). And Life Extension Curcumin. about 5000iu of Vit D. I used to take 8-10 grams of fish oil a day (that's total epa/dha). Never had problems. Until 2 years ago when this whole weird stool problem started. Then I couldn't tolerate it well. But I recently started taking it again. about 2 grams daily. Nordic Naturals brand.

Haven't had stool samples done in a few years. I can certainly ask for more!

Inspiring to hear someone has done well for so long with 5asa's. I'm convinced if I had known to continue using the enemas back in 2008 when my symptoms would disappear that I would still be doing very well if not in full remission to this day. And I get scared that maybe the damage is done and I won't get back to that point. Who knows though.

I'm dead tired but I will post the rest of my story tomorrow morning! And I'll make sure to keep it short and break up my giant paragraphs :)

Sorry for any typo's! I read through my post above again....just terrible...lol

I'll respond later this evening....thanks for the paragraphs.

My one suggestion. Stop all supplements for a few days. See if you improve. Add one by one back. Not all that's touted for helping agrees with everyone.

q

Whew long posts. :)

I just wanted to add that I have left sided UC and am on Lialda and Rowasa. I was like you and never knew to keep using the Rowasa when I felt better. I did well just on the Lialda for 8-10 months and then flared. Was put on pred got better and then 8-10 months later same thing. Pred again but took much longer to get better.

I then found this forum and Quincy said do the enemas and then taper to a maintenance dose. I've been doing good since June of last year. Whenever I see any mucous I increase my Lialda back to the 4 a day and I do the enemas nightly for a week or so and then taper back down. So far that has worked for me.

I will say that when I was first diagnosed and put on Lialda at 4 per day and the nightly enemas that my stool was much mushier than it is when I am only taking 2 Lialda. Even now if I see mucous my stool has still been normal but if I up the Lialda for more than just a couple days it starts to get mushy again. When its mushier the urgency increases a bit too.

Even though it does this for me I still believe it is doing what it needs to. I hope this is the regimen that I can stay on for many years to come.

Stick with it...your doing well. :)

Yes regarding the starting enemas. My husband even said "why are you getting worse rather than better?". Like I mentioned, I visited my GI a lot the first 2 years with questions like that and my flare symptoms not being consistent, etc.

The fact that you're improving and doing better in some aspects, try not to base it only on the stool shape/consistency. I think a lot has to do with the urgency and rectal/gut discomfort when going, at least for me.

I was also using dicyclomine for discomfort/spasming on a daily basis.

I get looser stool based on what I eat. So take a look at food intake and if you ate something different yesterday as a possibility.

Looking forward to hearing how the SF Rowasa works for you.

q

Apparently it is, xfinite is from the US since Rowasa is only available there.

Ask your pharmacy if they can get it in for you...then contact your doc regarding a prescription.

q

quincy said...
Hi...the one thing I've concluded is that not all GI doctors think the same way. It's frustrating from my perspective, but my UC has been fairly well controlled with consistency in treatments.

I've had huge ups and downs, but mostly from tapering the enemas farther and farther apart. Even sometimes to once every week and a half, etc.

As usual, I've always had some crisis hit, so back to square one. Only twice did I up the Asacol to 8 daily (without the initial OK from my GI, only to eventually see him and tell him about it ... which was a good move according to him.) I did taper back to 6 daily once the flare was controlled and I was on maintenance enemas.

The Canasa can serve you a purpose, and I think maybe adding one during the day in conjunction to using the enemas at night. OR...use a steroid suppository during the day if the GI will prescribe them.

I agree with the doc not scoping you....as I mentioned and my doc stated, some patients can have some inflammation from the scope. Some who are already flaring can have exacerbation from the scope, so either way it sucks if done repetedly.
My doc has never been extreme regarding scopes, and a few times I had to have a rectoscope done. ugh...but at least we know what's going on.

This fall when I see him and if I'm doing really well, I'll ask for one to see if I have inflammation or not. That might tell if I have a small amount of inflammation regardless or if it's possibly prep induced.

Usually, however, I can tell if I'm starting to flare before a scope, and a few times I was anyway....I would have been on nightly enemas during those times. Timing is never perfect, and life always gets in my way of functioning.

My goal is never to be perfect, but to maintain the status quo with what I can do for myself.
I also have a liver disease related to either autoimmune/UC...we're not positive on which, but my perspective is to keep my butt as happy as can be. So, hence my mind saying with continuing meds, probiotics and the fibre supplements for sure.

You've come a long way with a doc who is taking it a bit slower. There's comfort in that fact for me.

When I was first diagnosed....the end of that year which was Christmas and I was flaring very badly. My GI was called on emergency family matter, so I ended up seeing the other GI in the clinic. He told me how my GI was wasting time putting me on 5ASA oral/rectal and if I were his patient, he would have put me on pred initially. I told him I was thankful I wasn't his patient.
He put me on steroid foam enemas and yes, they did help me during that period of time. When I saw my GI for the follow-up, I told him about what the other doc said. He smiled "oh, he said that, did he?"....

I didn't have the internet in 1989, obviously....but having a doctor with a philosophy of both ends approach and not hurrying, methinks had me on a long-term care goal rather than not. But I responded to the 5ASA meds...others obviously cannot.

I'm curious how you do and what the results are with your continued treatment. Hang tough...you might need to make some changes to supplements and diet regarding symptoms.

Oh, those farts that seem to disappear into the rectum? that's classic sign for me that I'm starting to flare.
There's extreme satisfaction with perfect "flow through"....as long as there's no enema in there..heehee.

q

Thank you very much for sharing! It's encouraging to stick with what I'am doing! I ordered some psyllium seed powered to add to my arsenal. See how that goes. I'm also considering lowering the Lialda to 2/3 per day considering I've read several posts of people claiming their stools firmed up a bit after they did the same. I'll talk with my doc before I try it though.

Day 2 today with the SF Rowasa. More of the same. (migraine/vertigo already feels better then it did. So I think I'm sticking with these!). I feel less urgency/cramping/pain when I go. Rectum feels like it's opening easier. Gas comes out easier as well. Not a dramatic difference mind you. Just less then what it has been for 2 years. Stool consistency is all over the place. But it looks like that's normal.

I'll update this thread as I see progress. Thanks again Quincy!

You're welcome! I wouldn't suggest you taper the Lialda until you are somewhat stable with the SF Rowasa. But your doc might just say drop to 3. Just don't drop two at the same time...wait a month or more.

Is your UC throughout? I have no energy to read through the above posts..lol.

q

I bet your "peanut buttery" (ew...lol) stools are from the Lialda, not the course of pred you took a few years ago. Mine have been the same ever since getting on Asacol. They've never gone back to normal. But hey, at least they helped me get better from going 25-30 times a day with mostly just blood to now near remission.

If I don't absorb the Rowasa completely, then the liquid will come out. If I keep it in all night, it gets absorbed. I guess I haven't really experienced what you're saying but just give it time. Give it at least 4-6 weeks for the enemas to heal things in there.

sherbear46 said...
My doctor didn't have me drop the Lialda till almost a year after I started it.

Gotcha. I've been on the max dose of 4 pills per day since June 2010.