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Crohn's Disease Forum » Treatment » 5-ASA/Mesalamine » Asacol - does it stain stool?


07-26-2012, 02:23 PM   #1
Sophia
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Asacol - does it stain stool?

Hi everyone,

I've been in remission since 2010, and I've taken Asacol the whole time until my specialist advised me to wean off it in Feb/March this year. Since then I've felt a gradual worsening of the symptoms, but not until last week did I see mucus in my stool again. I've rapidly gotten worse the last week, going from two normal bm's a day, to 7 so far today, four of them being only mucus and blood. My specialist put me back on Asacol yesterday, and today the mucus has changed colour from clear to brown-red! At first I obviously thought I was bleeding much more, but tonight I started thinking - could it be the Asacol staining the mucus? Maybe wishful thinking...? Please, do any of you have experience with this? I only found threads relating to Asacol staining pee, which I haven't noticed at all.

I'm sorry if I've grossed you all out... IBDs are such shitty diseases!
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07-27-2012, 04:33 AM   #2
Z_Ghost
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Not sure about Asacol staining the poo, it does stain my pee.
Most times my poo is light brown, unless I am having diarrhea and I have blood or mucus in it.
Sorry can not be more help.
07-29-2012, 07:10 PM   #3
Jennifer
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Mucus can be from a milky white, yellow or clear in general so my guess is that you're dealing with bloody mucus. What has your GI said about it? Do you know where you're bleeding from and what's causing the bleeding exactly? It sounds like weaning off the Asacol forced you into a flare (hence why maintenance meds are meant to be taken indefinitely) so at this point its unknown if Asacol on its own will be enough. Hopefully your GI is ordering tests to see what's really going on in there right now.
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07-29-2012, 09:46 PM   #4
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Not sure about Asacol staining the poo, it does stain my pee.
Most times my poo is light brown, unless I am having diarrhea and I have blood or mucus in it.
Sorry can not be more help.
I have been dealing with UC for over 15 years and have been on Asacol, Colazal, Pentasa, and currently am on Lialda, which I love! However, it has been hard to tell how any of these drugs specifically affected the quality of the stool because the consistency of bowel movements varies quite a bit depending on my UC flares.

Every once in a while, I do notice that my pee stains the toilet a dark purple/red/brown for a week or two then it goes away for months or even years a time, and I am certain that it's not due to foods that I ate like beets or rhubarb, etc.. The reason that I knew it was not due to the food I was eating was because I had recently lost 60lbs on weight watchers and kept a very accurate log of exactly what I was eating.

Interestingly enough, I was hospitalized 3 times this year due to severe abdominal pain and nausea. It perplexed the doctors because it did not look like it had anything to do with my UC. The pain was debilitating of an incredibly unbearable proportion. I didn’t understand what was going on, it felt like I was going to die. I was not able to think straight and I had forgotten to mention and/or I never made the connection mention to the doctors that my pee was leaving purple stains on the rim of my toilet bowl. Looking back, I think at least two of those three hospitalizations coincided with my darkened pee toilet staining episodes.

I was admitted to the hospital in April for severe abdominal pain. The doctors conducted every test under the sun to rule out gall bladder or kidney stones. All the tests all came up came up negative. So they decided to perform an endoscopy and found a large duodenal ulcer. I was put on a proton pump inhibitor and sent home. In Mid to late May, clarithromycin and amoxicillin were added after the H. Pylori test came back inconclusive. By mid June, I was back in the emergency room and admitted to the hospital again with severe abdominal pain. The doctors ran the same battery of tests on me again that they did the first time and found nothing wrong, including another endoscopy. The GI doctor who preformed the endoscopy this time said that everything looked good, the ulcer was healed. He also said, that saw "no reason for me to be asking for IV narcotics this time", almost as if he was accusing me of being a drug seeker. The pain eventually subsided and I was discharged from the hospital.

A few days later I was back in the emergency room again with unbearable pain. Sometimes, it felt like a thousand swords were on fire spinning around in my gut, other times it was localized in the upper right abdomen. The pain was excruciating. They checked my labs again, and found nothing. They were ready to operate but the surgeons couldn't find anything wrong with me, so admitted me to medicine instead of surgery. Finally, one of the doctors told me that I should “Grow up” and accused of "faking" the pain just so I could receive IV drugs. I was told to find a psychologist. Needless to say, I was very frustrated.

The pain mysteriously dissipated again, I knew I wasn’t crazy, these abdominal pains were not fake, sometimes they woke me up from a dead sleep in severe agony grasping for breath. I had to figure out what was causing them. Then almost by accident, I realized something very interesting.

About a week after I got home from my last hospital stay, my wife and I were painting the bathroom. It was taking us a few days longer than expected and were exposed to a lot of paint fumes. We were getting ready to take a break for lunch. I had to pee, so I used the toilet A few hours later after lunch and a trip to the hardware store, I went back up to the bathroom to finish painting. When I walked into the room, I immediately noticed that rim of the toilet had been stained with purple splotches again. The purple pee had returned! I remembered that this happened before my hospitalization and I was determined to find out what it was all about.

So, I Googled "purple pee stained toilet" and I found a links referencing posts in this forum and others. Apparently, some people with Crohn's/ UC have had similar experiences and attributed it as a normal side effect of mesalamine.

Mesalamine itself is light pink crystal and is not a dye like sulfasalazine. Only a small amount of it gets absorbed in the body (20%) and it's metabolite is also not a dye it. There isn't enough evidence that mesalamine is responsible for red urine or purple stains, in fact just the evidence suggests just the opposite.

There is plenty of documentation readily available demonstrating that drugs like sulfasalzine that containe AZO bonds could change urine color, -- but mesalamine had no AZO bond and there was nothing in the literature indicating that it could be responsible for purple stains left from residual urine. This is very curious. Why have so many other people with IBD noticed purple urine besides me. Why isn't this present every time with everyone. Mesalamine has been around for many years, I can't believe that the pharmaceutical companies wouldn't put in on the patient information or list it as a side effect so people wouldn't freak out or try to sue them because they were never warned.

I actually called the makers of these drugs (Warner Chilcott and Shire) about this. Representatives from each company searched for answers and replied that a purple change in urine color is not a known side effect for the drugs. However, they did say that “changes in the consistency and color” of stool is a reported side effect and documented in the literature, specifically in the package insert for Pentasa. Which is exactly what would be expected during in IBD.

The drug manufactures were not able to confirm that any of the drugs that I had been taking to control UC would have the ability to change the color of my urine at all, much less change it so drastically that it would actually stain my toilet from from time to time. My curiosity grew.

After more Googling, I found out what was causing the purple stains and red urine. Apparently, autoimmune disorders like Crohn's and UC patients have been linked to a very rare disease called Porphyria which actually means “purple pigment” in Greek.

More than 80% of people that present with Acute Intermittent Porphyria suffer from severe abdominal pain usually accompanied with nausea. I also read that it is common for doctors to dismiss these patients as hypochondriacs, or drug seekers because typically everything will look normal upon examination and/or lab studies during episodes of extreme abdominal pain.

I brought it up to my GI doctor and he says, “Nah man, you don’t have this problem.” Then, I asked him to explain the purple pee he said “I don’t know.” He then went on to say nothing is that easy to figure out.

I read more about Porphyria, everything started making sense. Apparently, there are several different types of Porphyrias. It's a metabolic problem in heme synthesis. There is a sequence of steps that has to happen in the correct order for heme to be made. When the concentration of heme decreases enough the first enzyme in the sequence is enabled, consequently when enough heme is made the high concentration inhibits the ability that first enzyme so that the process stops. Each step requires a specific enzyme to allow the process to proceed to the next step. A person with porphyria is missing one of the enzymes required in the sequence of reactions that takes place when your body needs to make heme. This results in a log jam of heme precursors (porphyrins) to build up at the step with the enzyme deficiency because there is not enough of the deficient enzyme available to move the process along to the next step. This becomes a problem because heme is can't be made so there is nothing to stop the first enzyme from starting the process over and over again. The porphyrins build up and some are excreted in the urine turning it red. Eventually, the porphyrins build up and become toxic. If the process is not shut down or accelerated by the wrong drug it can lead to death.

The type of prophyria one has is specific to that enzyme where the log-jam is occurring. for example, if the deficiency is in the 3rd step then the person has Acute Intermittent Porphyria.

Many hospitals are not equipped to test for porphyria and must send the samples out to be tested. A lot of times the results come back with a false negative because the samples are mishandled.

I could see why this disease was so freeking rare, it’s almost impossible to diagnose and has a seemingly endless list of very non-specific symptoms that are associated with it. I am willing to bet that it's not so rare...

People with porphyria can pee purple all the time and not have symptoms or only pee purple when symptoms are very severe or not pee purple at all.

Stress, dieting/fasting, menstrual hormonal changes, specific drugs,
paint fumes,infection, and alcohol are some factors that can trigger acute porphyria attacks

I had just lost 65+lbs in a short time while on weight watchers which is when I first started to notice purple stains and red urine again. Low glucose levels happens to set up a favorable environment for heme production. Then I was given clarithromycin, and a high dose PPI (heme demand was increased) which led to a super-induction of heme synthesis, the red urine was more profound and the purple stains got darker.

So all of this made sense, it looked like the perfect storm was set up when I had my most recent attack.


I know this is an IBD forum and I definitely have IBD, since there is a known correlation with Crohn’s/UC and porphyria it might be wise to rule out porphyria. Although this is a rare condition there is a good probability that others with IBD also have this condition, especially if they notice purple stains on the toilet.


I hope this was helpful, and I would appreciate any additional input.

http://www.ncbi.nlm.nih.gov/pubmed/1771936

http://en.wikipedia.org/wiki/Porphyria

http://www.goldbamboo.com/topic-t164...Porphyria.html

Last edited by Wooddy; 09-28-2012 at 07:58 AM.
07-31-2012, 11:16 AM   #5
Sophia
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Wow, a lot of information there... I'll keep the information about porphyria in mind, even though I've never experienced a change in urine colour like you describe. Interesting that you were told that Pentasa stains the stool - my specialist said "Definitely not"! I don't know if I believe him though...

Crabby: Only a fecal-test and hemo-fec test so far. I think the specialist's plan is to see if Asacol will work now. Hopefully it will. I think I feel slightly better today compared to yesterday, which is good news. Fingers crossed!

Thanks for your replies, guys!
07-31-2012, 01:00 PM   #6
Jennifer
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Your GI doesn't want to do a small bowel follow through or any scopes or an MRI or nothing?
07-31-2012, 03:01 PM   #7
Wooddy
 
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[QUOTE=Sophia;480207] Interesting that you were told that Pentasa stains the stool - my specialist said "Definitely not"! I don't know if I believe him though...



Sophia,

The part about Pentasa changing the color of stool is in the prescribing information that the manufacturer provides with the drug. However, it is written in a very non specific way. If you look on under Adverse reactions and then under gastrointestinal the second to last side effect listed "stool abnormalities (color or texture change)". However, what you describe is very specific so I don't think that's what the manufacturer was trying to describe. So I definitely think you should not ignore it.

I am also not suggesting that you have Porphyria either, from the information you gave there would be no reason to suspect it. I was just pointing out a specific situation that I had to deal with when I complained to the doctors about a problem and wasn't taken seriously. I just got a little carried away writing about it


One of these links should take you to the page that has the prescribing info for Pentasa:

http://pi.shirecontent.com/PI/PDFs/Pentasa_USA_ENG.pdf

If that link doesn't take you there click the following link then click on the upper right hand corner of the page where it says "Full Prescribing Information"

http://www.pentasaus.com/important-s...formation.aspx
07-31-2012, 04:37 PM   #8
Sophia
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Crabby: Nope, nothing of the sort. Should I ask for this? What is normally done during a flare? I haven't even seen him yet, only spoken over the phone, and I have no appointment with him until next year.

Wooddy: thank you.
07-31-2012, 09:21 PM   #9
Patricia56
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Are you seeing a doctor that specializes in treating IBD? Because, frankly, I have never (never) heard of an IBD doctor who takes a Crohn's patient off a 5-ASA without replacing it with another 5-ASA or a step up medication like 6-MP or Methotrexate.

Do you have UC rather than Crohn's? If so then I could maybe see the doctor taking you off to see if you could handle it but even so I don't know why he would have done that if it was working for you.

I just saw your latest post. Your next appointment isn't until next year???

If it is an option for you to get a 2nd opinion from an IBD clinic at a major medical center then I strongly suggest you do that. Sooner rather than later.

Good luck.
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07-31-2012, 09:36 PM   #10
Jennifer
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Are you still bleeding or having the possible bloody mucus? My GI usually does some tests to find out what's actually causing the bleeding and based off the cause and location prescribes the right meds for the job. They usually jump right into upper and lower scopes and if nothing is found then a small bowel series/barium swallow with x-ray. They should see something on the last test at least and if not then there's always the CT scan, MRI, capsule endoscopy, ultrasound etc.

With your symptoms you'd think he'd want to see you sooner. I agree that you should start shopping for another GI if yours is just playing around with one medication and then taking you off it to make you flare and hope that the same med will work again without doing any testing (other than checking your poop). Not even blood work? Really? Sounds like a bad relationship. "Drop that zero and find you a hero!"
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