Red Urine and mysterious purple stains on the toilet

Have you ever had unexplained abdominal pain and have ever noticed red urine or purple stains on the toilet?
5
YES - 38.5%
8
NO - 61.5%

 
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Colicky
Regular Member


Date Joined Aug 2012
Total Posts : 20
   Posted 11/16/2012 8:56 AM (GMT -6)   
I have had Ulcerative Colitis for at least a decade but for the most part, flares have been well controlled with azathioprine.

I have noticed on occasion mysterious purple stains on the toilet and could not figure out where they were coming from. At first, I thought they were caused by my girlfriend at the time, but a year after we split up, I bought a new house and much to my surprise, I noticed the same stains again, so they were from me. The strangest feature that I had noticed was that sometimes the purple spots would not be evident until after I returned to the bathroom hours later to use it. The urine seemed to stain some areas of toilet dark brown/purple (where the water couldn't reach to draw down after flushing) but only if the urine remained there for what ever reason.

These stains would come and go, from time to time. Sometimes I would notice the entire underside of the toilet seat would change color to dark purple. Once in a while I was able to notice that my urine was actually red/orange when I was going. It looked like blood but then I noticed that the purple stains were more pronounced. During a period of dieting and heavy exercise I noticed red urine more frequently. One episode lasted for quite a while where my pee was a very distinct red and I could see the purple stains forming right before my eyes while I was using the bathroom. The red urine and purple stains were profoundly predictable every time I used the bathroom for at least a couple of weeks.

Then I wound up in the hospital with severe abdominal pain, the doctors tried to tell me I needed an operation to remove my gall bladder, but could not find any gall stones. This was no surprise to me because, I must have had at least a dozen ultra sounds in the last 24 months and had at least 3 or 4 cat scans of my abdomen as well. The doctors were never able to find anything wrong or anything that could explain the level of pain that I was complaining about. Even when my UC was flared slightly, the doctors thought I was over exaggerating the pain.

Eventually, they accused me of being a drug seeker and kicked me out of the hospital.

A few weeks after being kicked out of the hospital, I noticed purple spots again, but this time I had spent a week inside a room with little ventilation painting. Then I remembered that prior to my last hospital visit I was peeing red and the purple stains on the toilet were profound. I did a little bit of research and discovered something absolutely amazing!

The red urine and purple pee was a result of a genetic disorder called Porphyria which is linked to people with inflammatory bowel disease and/or other autoimmune disorders. Acute Intermittent Porphyria causes acute attacks can cause unexplained abdominal pain associated with constipation and nausea. It can be FATAL if the patient is given the wrong type of drug or medical treatment. I will spare you the rest of the details that confirmed this diagnosis for the sake of brevity. (send me a message if you want to know more)

Certain drugs induce the condition, as well as stress, dieting, vigorous exercise, and paint fumes!

Testing for this condition is very tricky and many labs are not experienced in conducting the test properly if your doctor orders it. Even if the lab handles the specimen properly the test is only accurate 1/2 the time. Some people have to get tested several times before they are diagnosed.

If you notice red urine or purple stains on the toilet and/or have acute abdominal pain and you have ulcerative colitis, Crohn's or other autoimmune disorder, it is very important that you rule out porphyria and find a doctor who can help you locate a porphyria expert. There are not many porphyria doctors around so you will probably need help finding one.

Good luck

Madcat25
Veteran Member


Date Joined Oct 2012
Total Posts : 1111
   Posted 11/16/2012 9:02 AM (GMT -6)   
Welcome to the forum!

Interesting read by the way. Never heard of this. Did you get this confirmed by a doctor after your self-Dx?
Ulcerative Colitis diagnosed Oct 2007. Prednisone for flares until Oct 2012. Currently in hopes of remission with new meds -> so close, have 1-2 fairly solid BM per day but have 3-4 yellow liquidy. So close!!!

Currently on: Prednisone 35 mg, Imuran 50 mg, Ultimate Flora x1, Remicade 300 mg (2 infusions).
Failed: 5-ASA, Asacol

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6907
   Posted 11/16/2012 9:03 AM (GMT -6)   
I've never had red urine, but purple stains on the toilet are from mesalamine medications. It's normal and harmless.
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child
Diagnosed with pancolitis in Jan. 2009
Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic
Currently expecting second child, due in early March 2013

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 6750
   Posted 11/16/2012 9:12 AM (GMT -6)   
Red as in blood being present? If that's the case then that is not good.
Asacol 400mgs 2 pillsX4; VSL#3 112.5mgs 2 pillsX4; DGL 400mgs 2 pillsX3; Monolaurin 300mgs 2 pillsX3; Vitamin D 5000 ius 1 pillX2, Thorne SF722 10pills/day, garlic 3 pills/day

Discontinued: Prescription - Glycopyrrolate; Natural - peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Imodium, Beano, Zymactive, Renew Life Probiotic 80 billion, Florastor, Slippery Elm

dinkydonuts
Regular Member


Date Joined May 2012
Total Posts : 81
   Posted 11/16/2012 10:15 AM (GMT -6)   
I have the purple stains. A Mr. Clean magic eraser works surprisingly well to clean them, but the trick is to get them early or they'll permanently set.
Lialda 3.6g daily

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 11/16/2012 10:40 AM (GMT -6)   
Colicky,
 
Welcome to the forum.
 
Very disturbing and interesting diagnosis you made.
I'd like to hear more about it and how you got to it, and what the doctors confirmed and how exactly.
 
Blood in the urine is certainly a problem, unless it could be caused by kidney stone or infection?
 
Purple stains on the toilet typically for many of us comes from using mesalamines.
 
So how are your being treated for this now? How's it affecting your UC?
Rx meds didn't help me. But 4.5 mg LDN +Paleo diet +supplements=REMISSION.Protein shakes w/almond milk,Maca powder,L-Glutamine,D-Ribose,chia seeds.VSL#3,K2,VIt. D3,slippery elm bark powder.For more info,my protocol is the 11th post at this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318
If you have any questions, you can find my email address at my profile.

MaxMilian
Veteran Member


Date Joined Dec 2010
Total Posts : 1228
   Posted 11/16/2012 11:14 AM (GMT -6)   
I have the purple stains but they happen rarely and randomly. I took Salofalk for 1 year and only after that did I start having purple stains.
Oct 10: DX proctitis
Nov 10: DX IBS and cecum inflammation
Aug 12: DX Crohns? (mild ulcers on ileum)
STATUS: Ulcers on terminal ileum. Everything else clear
1g Pentasa supp (1 per 2 nights) + 2x1.5g Salofalk granules daily. Avoid: deep fried foods, caffeine, high sugar. Limit: sugar, lactose, gluten, meats, chilli, processed foods

Colicky
Regular Member


Date Joined Aug 2012
Total Posts : 20
   Posted 11/16/2012 2:30 PM (GMT -6)   
When I first investigated the purple toilet stains, Google sent me to several posts on this as well as other forums. That is when I noticed that a number of others with UC or Crohn's have also posted a similar experience. I was actually very surprised that the purple stains were dismissed so readily as being caused by mesalamine. I am not saying that it was impossible for mesalamine to be the culprit, rather it is highly unlikely that mesalamine has the ability to stain urine that has been described.

Here is what I was thinking when I first read everyone's posts regarding this.

Certain drugs can stain your urine and there is plenty of documentation of the mechanism responsible. Generally speaking it is not a large leap to expect a drug that contains an AZO bond to be able to change the color of urine. Phenazopyridine, nitrofurantoin, and sulfasalazine are 3 good examples of drugs that contain this type of bond and can darken the color of urine. However, I knew that mesalamine was not an AZO dye so if it was changing the color of urine it had yet to be explained why.

Unlike sulfasalazine which can be used used for arthritis, mesalamine preparations are not absorbed very well systemically, which is why they are a good choice to treat inflammation in the colon. The drug stays right where it needs to be. On average only 20% of orally administered mesalamine is absorbed and the metabolites have not been shown to change color of urine either.

Then, I remembered seeing red urine and purple pee stains well before I was put on Asacol just prior to my diagnosis of UC when I was in college. I had asked my physician about the purple stains and the red pee, and I submitted a urine sample along with some blood work. I was told not to worry about it, and that red urine was not uncommon after eating beets. Back then, I ate beets on a regular basis, and the doctor had no way of knowing this, so it was not hard to accept his explanation.

If none of this information was convincing enough, I poked even further. There is no documentation in the package inserts of the various mesalamine manufacturers that indicate it's responsible for changing the color of urine. However, since so many of you suggested that mesalamine was responsible I still decided to call Warner-Chilcot, Shire, and Medeva (Proctor and Gamble) to see if they had collected any post marketing data or have any additional information about purple pee stains or red urine associated with their individual mesalamine preparations. They were all very helpful, some even called me back (after conducting further research) a few days later but they all concluded that mesalamine does not have the ability in vivo to cause red pee or purple pee stains on the toilet.

If someone can provide me with documentation that mesalamine can cause urine color to change to purple please do so because I haven’t been able to find it. Even the food colorings used in the various tablets are not responsible for changing urine color, they are the same colorings used in commercial products most of consume. Can you imagine the rainbow pee and the stains that would be left on the toilet if someone at too many m&m’s? Ok so now that I was sure mesalamine wasn’t the cause, I had to get to the bottom of the cause.

After I did some more digging, I stumbled across porphyria as a possible explanation for causing the purple pee stains on the toilet. I tried to disprove porphyria as the cause with just as much conviction, but the more I tried to disprove it, the more it became likely that porphyria was actually the cause of the severe abdominal attacks that I was having and it tied everything else together perfectly, I could not ignore it.

Several years back I was put on a statin drug to control my cholesterol, after a few weeks I had to discontinue the drug because it was causing rhabdomyolysis, a very rare but serious side effect associated with the statins measured by elevated Creatine Kinase (CK) enzymes. In most people, after discontinuing the statin drug, CK enzymes should return to normal in a few weeks. My levels never returned to normal and it has puzzled every doctor that I have seen for the last 8 years. This may seem irrelevant, but is a feature noticed in porphyria.

about 7 years ago, I had red urine and acute abdominal pains so severe that I passed out and woke up in the emergency room of the hospital. The doctors couldn’t figure out what was wrong and thought I was making up the pain to get drugs. It felt like they didn’t take me seriously. I didn’t want to add another complaint but I also felt tightness in my chest and asked a nurse to hook me up to an ekg machine. The instant she connected the final lead she sprinted out of my room to grab the attending. Apparently, I was in a-fib and they all had missed it. My heart rate was hovering around 210 – 240 beats per minute. They tried to cardiovert me with a calcium channel blocker (this is a very significant detail as it related to porphyria) that did not help two hours later the drug was changed to a beta blocker and after about 5 minutes it my heart was back to normal sinus again. Tachycardia/arrhythmia/a-fib has also been known to accompany porphyria.

Ok so far I found nothing to disprove porphyria, but still have nothing to prove it. But wait, there is more…

In the spring of this year while I was on weight watchers and losing weight rapidly, I was hospitalized again with extremely severe abdominal pain that I knew was not directly related to UC but the exact spot of the pain was hard to localize. It felt like a thousand flaming swords spinning in my gut, but at times it also felt like it was coming from my gall bladder. The doctors worked me up for gall bladder problems every way they could. I had all these tests done before and they always came back with negative results this time was no exception. So they decided to do an upper endoscopy and they found a large duodenal ulcer. I was discharged a few days later and put on meds to treat the ulcer. My GI doctor was away on vacation at the time I didn’t get a chance to speak until a couple of weeks after I was discharged. He put me on an antibiotic called clarithromycin and increased my dose of omeprazole. I also started to notice that since I started weight watchers the toilet was becoming stained more frequently, although I had not necessarily noticed red urine. After I started taking the clarithromycin and the increased dose of the omeprazole, I noticed that the purple stains were becoming more pronounced and my urine was starting to change to red. I made it a point to avoid eating anything red at all. I even looked at my weight watcher log to see if I had eaten anything red that I could correlate with my pee color, but I found nothing. Eventually, my urine was completely red and it stained the toilet instantly when it hit the bowl. By this time I had lost close to 50lbs on weight watchers in a little over 2 months. The red urine went on for several during late to mid May until the beginning of June. The stains were all over the toilet it was embarrassing and I hadn’t eaten a beet or rhubarb in over a month. Then I started to get constipated, and my stomach started to hurt slightly, before I knew it, tremendous abdominal pain, took over, I couldn’t breath, and I was overwhelmed by nausea as well. This was one of the most vicious attacks that I had ever had. My wife was out of town, I had to call my parents to drive me to the hospital. The doctors could not give me enough narcotics to quell the pain. I was admitted again, and again, they preformed every test and found nothing. I was sent home after spending 5 days there. The day after I was discharged, I stepped on my scale and my total weight loss equaled 65lbs since I started on weight watchers. That night, I had an attack so severe that I realized a completely new level of pain higher than the previous one that I had just described as vicious. I wound up in the hospital and was admitted again, but this time the doctors blew me off completely. They told me that I was a drug seeker and that I made everything up and that there was no reason to keep me there. I was given a psychiatric diagnosis and discharged. Even though I was in terrible pain, I wanted to get out of that place as fast as possible. I completely lost faith in the health care system. I went home, by this time I had forgot all about the red urine or the purple stains on the toilet, that was the last thing on my mind.

A week or so later is after my wife and I were painting the house and I noticed purple pee stains on the toilet is when I put all the pieces together that pointed to porphyria. Paint fumes can also induce porphyria.

Porphyria is a disorder in heme synthesis. Heme is a porphyrin ring and it’s synthesis is a highly conserved through out nature. The most well known role of heme is the one that it plays in hemoglobin. Heme is the “activating” ligand that gives hemoglobin it’s unique allosteric properties to enable the exchange of oxygen and carbon dioxide in respiration. However, many other proteins in your body need heme to function, and are designated as hemoproteins. The Cytochrome P 450 (CYP 450) enzyme system responsible for metabolizing drugs and foreign substances that we ingest is one of these hemoproteins. If we are exposed to a drug that is metabolized by this enzyme system your body simultaneously up-regulates both the transcription of the relevant apo-CYP 450 (apo- meaning without heme, or inactive) and heme that the enzyme will need to function. In some forms of porphyria this can be a huge problem because if you do not have enough heme floating around there can be problems.

Furthermore, these cytochrome enzymes are present in the intestines and the colon. These enzymes need heme to function and a depleted supply of heme may not be a good thing since these enzymes mediate a process called apoptosis, which is thought to play an important role in inflammatory bowel disease. There are a few other roles that heme has in IBD as well.
This is getting way too long and is probably hard to read so let me sum up how to tell if you have porphyria.

There are several different types of porphyrias. A 24 hour urine sample can test for some of the porphyrias but it has to be conducted by an experienced lab, and the sample must be completely protected from light and refrigerated. Meaning that you have to wrap the sample jug in aluminum foil and pee in it in the dark, then store it in your refrigerator until you fill it up and bring it to the lab in a cooler. Then you have to make sure that the lab knows how to handle it or all your trouble will be for nothing.

To sum up, here are some things that can induce porphyria, usually takes more than one factor to cause an attack

Fasting, exercise, and dieting
Drugs that are strong substrates for CYP 450 enzymes
Stress
Alcohol, (red wind, whiskey)
Paint fumes
Female sex hormones are a big factor in women

80-90% of people with the gene that causes porphyria don’t know they have it or never have symptoms. It usually takes more than one factor to tip the scale enough in the right direction to trigger an attack. It’s not uncommon for people with porphyria to be accused of being a drug seeker like I was when the doctors had no clue what was going on. I had to explain what porphyria was to my doctor before he finally ordered a test for it. After the first test came back negative my doctor refused to give accept it, we had to test multiple times before it could be confirmed.

If you have Ulcerative Colitis, Crohn’s, Lups. Etc… and you have noticed purple stains on your toilet or red urine then it would be a good idea to rule out porphyria especially if you have unexplained abdominal pain.
Left sided UC Dx 1996

Meds

-azathioprine 300mg
-Lialda 4.8g
-Welchol 3.75g
-Toprol XL 100mg
-Hctz 12.5mg
-Omeprazole 20mg
-vitamin B12 1000mcg
-Vitamin D 2000IU
-folic acid 1g

quincy
Elite Member


Date Joined May 2003
Total Posts : 25764
   Posted 11/16/2012 3:08 PM (GMT -6)   
seems you're here to talk about porphyria...you should title your thread accordingly...

I've actually never heard of anyone here complain of red urine or blue/purple water after urination.

The purplish stains on the rim of the toilet would be the interaction from the 5ASA let go in the toilet and splashed up. They definitely have to be kept in check.

I think you should change the title of your thread...

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 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6907
   Posted 11/16/2012 3:23 PM (GMT -6)   
My pee is clear/yellow. It's never had an odd color.

My guess is a lot of the mesalamine stain comes from my morning-after-enema poop and not my urine. The reason I think this is because we moved into a new house about 8 months ago. The toilet in my master bathroom, where I do 99% of my pooping, now has stains. The toilet on the main level of my house, where I probably pee most often but poop rarely, has zero stains.
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child
Diagnosed with pancolitis in Jan. 2009
Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic
Currently expecting second child, due in early March 2013

Colicky
Regular Member


Date Joined Aug 2012
Total Posts : 20
   Posted 11/16/2012 3:33 PM (GMT -6)   
I appreciate the warm welcome you have all given me to the forum. Thank you.

The purplish stains that I was referring to were on the rim of the toilet and sometimes underneath the toilet seat. There is no reaction from the 5 ASA that can cause cause that change if you would like verification call warner-chilcot, shire or another manufacturer of mesalamine to see if they have any documentation? I would love to see it, because I haven't been able to find anything that indicates mesalamine can cause purple stains that darken rim of the toilet.

I am mentioning this because there is an association with porphyria and ulcerative colitis. Some people who have ulcerative colitis may not know that they also have porphyria, its a very difficult diagnosis to make. I think the title is appropriate even if just one person with ulcerative colitis discovers that they also have porphyria especially if they notice that purple stains appear more readily if they are dieting, or after heavy duty exercise, or the other conditions that I had mentioned.

The point I am trying to make is that Porphyria may ultimately be an underlying condition for some with inflammatory bowel disease. The phenotype is epistatic and is responsible for the causing the resulting pleiotropy which manifests as Ulcerative Colitis.

So this is the most appropriate forum to post this in.
Left sided UC Dx 1996

Meds

-azathioprine 300mg
-Lialda 4.8g
-Welchol 3.75g
-Toprol XL 100mg
-Hctz 12.5mg
-Omeprazole 20mg
-vitamin B12 1000mcg
-Vitamin D 2000IU
-folic acid 1g

quincy
Elite Member


Date Joined May 2003
Total Posts : 25764
   Posted 11/16/2012 3:38 PM (GMT -6)   
well, it's never been mentioned on here as having porphyria.....and we're telling you that the 5ASA the cause of the stains we're having.

I advise you to change the title...

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 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Colicky
Regular Member


Date Joined Aug 2012
Total Posts : 20
   Posted 11/16/2012 3:39 PM (GMT -6)   
Fruitgirl,

Most of the time my pee is yellow/straw color too, however, every once in a while I notice that purple stains are left on the toilet where the yellow/straw colored pee must have splashed up. Most of the time I don't realize it until after I return to the bathroom to use it much later. I have also noticed that these stains become apparent more readily if they are exposed to light.

I have also noticed when I use the mesalamine enemas that I get dark purple/brown stains on the toilet, but these are different altogether.

It took me over 15 years to figure out that my ulcerative colitis was related to a porphyria diagnosis, lots of subtleties that are very easy to over look.
Left sided UC Dx 1996

Meds

-azathioprine 300mg
-Lialda 4.8g
-Welchol 3.75g
-Toprol XL 100mg
-Hctz 12.5mg
-Omeprazole 20mg
-vitamin B12 1000mcg
-Vitamin D 2000IU
-folic acid 1g

Colicky
Regular Member


Date Joined Aug 2012
Total Posts : 20
   Posted 11/16/2012 4:04 PM (GMT -6)   
Here is a link to a photo that someone posted of the same types of stains that I am talking about.

http://www.flickr.com/photos/25973722@N02/5486016609/lightbox/

It would be a very interesting maneuver to use a mesalamine enema properly and have it result in the stain on the rim of the bowl in the photo to appear like it does without making a much bigger mess.

If this only happens occasionally, it might be a good idea to investigate further.
Left sided UC Dx 1996

Meds

-azathioprine 300mg
-Lialda 4.8g
-Welchol 3.75g
-Toprol XL 100mg
-Hctz 12.5mg
-Omeprazole 20mg
-vitamin B12 1000mcg
-Vitamin D 2000IU
-folic acid 1g

Colicky
Regular Member


Date Joined Aug 2012
Total Posts : 20
   Posted 11/16/2012 4:16 PM (GMT -6)   
Q

Are you are so certain that the stains are due to the 5ASA that you refute the manufacturers reply that mesalamine does not cause those stains? Did you ask your pharmacist or your doctor about it? There is nothing in the literature that even remotely suggests that 5ASA is responsible for causing these stains. Furthermore, if the drug were responsible these stains would be noticeable when I was peeing, in fact most of the time the stains don't show up until subsequent visits to the bathroom.

If you notice these stains on the toilet but don't remember putting them there it's because exposure to light darkens them. That is a feature unique to porphyria and certainly not a feature of mesalamine.

I am not trying to argue, I want to know as much as the next person about what is causing these stains. Porphyria offers very good explanation that fills in all the blanks. So far there are many holes in the mesalamine theory, and the manufacturers even deny it, so I am not sure where this information is coming from.
Left sided UC Dx 1996

Meds

-azathioprine 300mg
-Lialda 4.8g
-Welchol 3.75g
-Toprol XL 100mg
-Hctz 12.5mg
-Omeprazole 20mg
-vitamin B12 1000mcg
-Vitamin D 2000IU
-folic acid 1g

libidi
Regular Member


Date Joined Jun 2012
Total Posts : 282
   Posted 11/16/2012 4:42 PM (GMT -6)   
Very unlikely that everyone on this forum that has purple stains on their toilet have porphyria. One member broke their mesalamine pill on their kitchen counter and it stained orange, I squeezed my enema bottle to release the air and ended up squeezing it too much and the fluid made brown stains on the carpet, and there more examples of 5asa pills being weird with their colours. Not belittling your situation but these forums have seen people with stories like yours and diagnoses that they want to caution everyone about.

Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 593
   Posted 11/16/2012 4:56 PM (GMT -6)   
I agree the stains are from the enema. I was shaking mine up and the lid flew off. The next day my white tile and baseboard molding were stained where I had missed cleaning it up. It was clearly stained from the Rowasa.
Sally (42 yrs old)
UC since 2002
Humira and Remicade (discontinued), Asacol HD, Immodium, Rowasa, Transdermal LDN, Calcium, Vit D, VSL#3DS

canadagal
Veteran Member


Date Joined Jan 2011
Total Posts : 599
   Posted 11/16/2012 5:07 PM (GMT -6)   
definite correlation of mesalamine to purple stains for me...

Up the meds... up the purple stains.... guaranteed! Pee is very normal coloured in my case!

someone mentioned the mr clean erasers.. tried that recently didn't help for me! what does work for me is the bleach pens.

My take is it is a reaction with certain waters as it only does it for me in certain cities/ geographical locations... so either a chemical in city water or hard vs soft water...

not saying porphyria is not a real condition and can or can not produce purple staining, but I am saying the back splash purple colour reaction for me is directly related to mesalamine!
39yr old female
1st symptoms 2006, UC diagnosis 2007. 1st flare - 1year. Solid remission with Mesalamine for 3 yrs. 2nd flare - 1 year(Jan 2010 til Jan 2011). steroids (dependant -didn't work) Eventually 4.8g mezavant and 4g salofalk enema and sunflower/spinach. got me into remission. 3rd flare - Mid-Aug 2012 - uped mezavant and enemas right away.
also: mutivitamine and probiotic

Colicky
Regular Member


Date Joined Aug 2012
Total Posts : 20
   Posted 11/16/2012 6:18 PM (GMT -6)   
I am in no way suggesting that everyone that purple stains on their toilet has porphyria, however what I am suggesting is that if you witness purple/brown stains that appear after you visit the bathroom, (in other words, the next time you use the bathroom) it would be foolish to ignore the possibility of porphyria if you have ulcerative colitis and especially if you have ever had acute and unexplained abdominal pain.

Since no one is able to provide any documentation that mesalamine can change your the color of your urine, it stands to reason that it must be something else that's causing it. I agree that it's possible that a strange and unexplained specific reaction from something in the water supply could be the culprit but how likely is it that you all share that same mysterious and specific feature that only mesalamine reacts to? The only other common thread is that you all have inflammatory bowel disease. If you choose to ignore the second possibility, that's entirely up to you.

Multiple autoimmune disorders have been recorded with the neurovisceral and cutaneous genetic porphyrias including ulcerative colitis, Crohn's disease, celiac disease, dermatitis herpetiformis, diabetes, systemic and discoid lupus, rheumatoid arthritis, ankylosing spondylitis, scleroderma, Sjogren's disease and scleritis. Physicians should be on high alert for porphyrias in families with autoimmune disorders and care must be taken with potential porphyrinogenic drugs, including sulfasalazine.

Porphyria is a very rare disorder, however, it is much less rare if you already have ulcerative colitis. In other words, it is more likely that the mesalamine is not responsible for purple pee stains on your toilet. Since no one can provide any documentation that mesalamine changes urine color I am curious to know why people still think it's normal side effect and ignore the documentation that porphyria is associated with ulcerative colitis.

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

80-90% of people that have porphyria aren't even aware of it because it never becomes an acute problem that is easily recognizable however, there is plenty of documentation that people with porphyria have died during acute attacks because they were given the wrong drugs due to ignorance.

And I will mention it again, in case this point is not clear. There is no documentation that mesalamine causes urine to change color to purple. Call the manufacturers of the various drugs, if you believe that you know more than they do about their drug I am sure they will offer you lots of money and a job developing new medicines or they might tell you that you are nuts, which is also common in people with porphyria. :P
Left sided UC Dx 1996

Meds

-azathioprine 300mg
-Lialda 4.8g
-Welchol 3.75g
-Toprol XL 100mg
-Hctz 12.5mg
-Omeprazole 20mg
-vitamin B12 1000mcg
-Vitamin D 2000IU
-folic acid 1g

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6907
   Posted 11/16/2012 7:13 PM (GMT -6)   
I hope you aren't arguing as to what's causing the stains on my toilet. I think it's pretty clear that it's my "enema poops" causing it and not my urine.
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child
Diagnosed with pancolitis in Jan. 2009
Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic
Currently expecting second child, due in early March 2013

Colicky
Regular Member


Date Joined Aug 2012
Total Posts : 20
   Posted 11/16/2012 11:45 PM (GMT -6)   
Fruitgirl

it would be a pretty neat trick if you could produce the same type of stain with your "enema poops." Frankly, I can't see how that would possible, so I am certainly not arguing that point.

However, if it makes a difference I will say this, from time to time over the past 15 or 20 years I have noticed that the underside of my toilet seat was stained purple during the occasional episodic flare of explosive diarrhea that I experienced when I had not used any enemas.

The presentation of this disorder is very interesting. When your body needs to make heme, an enzyme called Aminilevulenic acid synthase (ALAS1) starts the whole process going. That enzyme catalyzes the first step of a series of 7 subsequent reactions that result in the end product of heme. When enough heme is present the ALAS1 enzyme is inactive. Heme is critical for metabolism. It is a messenger ligand that activates proteins responsible for mediating many metabolic processes through out the body.

Here is a link that describes what we know so far about the role that oxidative stress plays in IBD:

http://www.jneuroinflammation.com/content/7/1/37

Heme is one of the fundamental factors that regulates this process, I don't think it's too far of a stretch to suggest that when there is a lack of control of heme production then the consequences can appear as Ulcerative Colitis. I am not suggesting that a disruption in heme synthesis is the only factor responsible for causing Ulcerative Colitis but what I am I am suggesting that disruption in heme control can definitely a factor in some cases.

The interesting thing about heme (porphyrin) synthesis is that the farther you move down the sequence of enzymes in the process the less soluble the product becomes. In other words if you have a deficiency in the 3rd enzyme you can measure it by the amount of porphyrin precursors in the urine that build up behind that rate limiting step. However, if the deficiency is farther down the process like the 5th or 6th enzyme then the precursor is not that soluble and will not be detectable as easily in the urine, however it will be noticeable in the stool.

Whether this is responsible for causing your Ulcerative Colitis or not, I have no idea. From the information that I have gathered so far, I think that porphyria is responsible for a small but significant percentage of people that have UC. The mechanism behind it is clear but the proof is in the pudding and no one seems like they want to eat it...
Left sided UC Dx 1996

Meds

-azathioprine 300mg
-Lialda 4.8g
-Welchol 3.75g
-Toprol XL 100mg
-Hctz 12.5mg
-Omeprazole 20mg
-vitamin B12 1000mcg
-Vitamin D 2000IU
-folic acid 1g

quincy
Elite Member


Date Joined May 2003
Total Posts : 25764
   Posted 11/17/2012 4:40 PM (GMT -6)   
so how long are those stains on your toilet rim?

I wash my toilet very often, after every bm, but on occasion it's a ligherter wipe if I have another bm. I don't have them from peeing, since I know it splashes up from the toilet and it colours yellowish, not purple.

All of us who use 5ASA will have it in our colons continuously...be it from the oral meds or rectal.

Since it would also be in the toilet water, splashing will happen with flushing as well...(good to always keep the lid down, ugh)

So, if you have porphyria, it's unfortunate. But it doesn't seem an issue for those of us who are answering you here.
Most of us get blood testing often.
I would think if there was suspicion, other testing would be done.

I'm not arguing, I'm trying to tone down your alarm.

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 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

ActiveUCer
Veteran Member


Date Joined Jul 2012
Total Posts : 1685
   Posted 11/17/2012 5:31 PM (GMT -6)   
Wow, in your case thank goodness for the internet! That sounds like a not fun problem so I hope you are able to prevent the triggers/aggrevators now that you know what it is. I think the thread is aptly named. I don't think everyone that sees purple in the toilet will think they have the problem.

Red urine is always something that needs to be checked out.
http://activeguts.wordpress.com/

Drug refractory UC
Colectomy with end ileostomy August 30th, 2012 - jpouch sometime
IBD related arthritis and peristomal pyoderm gangrenosome

Pentasa (1000x4), hydrocort enemas, dermal steroid shots, 2.5 mgs pred and dropping!

Tried lots of drugs and diet, didn't work for me.

Colicky
Regular Member


Date Joined Aug 2012
Total Posts : 20
   Posted 11/17/2012 9:42 PM (GMT -6)   
Q,


The stains on the rim don't always happen, and I clean them when I notice them. It's pretty embarrassing when it happens, especially when you go out to a friends house and have no idea that you will be leaving purple stains on their toilet that day.

Testing for porphyria is not as easy as you might think. You have to do a 24 hour urine and it has to be collected correctly and then the lab needs to be experienced enough and know how to maintain it's integrity. More often then not the tests will yield false negative results. There is absolutely no evidence at all that mesalamine (5ASA), causes your pee to turn purple after it sits on the toilet for a few hours. I am not willing to wager my life and believe that mesalamine makes my pee purple.

It's not so easy to tell if the purple stains are coming from your pee or poop. Most of the time I see the stains, my pee is yellow, and I only notice the stains when I return to use the bathroom later. Sometimes when it more profound I notice it on the underside of the toilet seat, presumably from poop. There are 8 different forms of porphyria, all manifest differently.

For me, I have only seen red urine extremely infrequently, less than 5 times in the past 15 years. The first time I noticed red urine, I made sure it was assayed, nothing was found. I got the same result the next time it happened. 15 years went by before I figured out what test was actually needed. It makes no difference what test your doctors have run on you in the past, if they are not specifically looking for porphyria they will never find it and even if they are looking for it if the tests aren't done right they will come up with a false negative. THIS IS EXACTLY WHY THE PEOPLE WHO ACTUALLY NOTICE PURPLE URINE STAINS HAVE NO IDEA THAT IT'S CAUSED BY PORPHYRIA. Porphyria actually means purple urine in Greek.

THIS ALARM IS FOR YOU Q! It might save your life someday, especially if you wind up in the emergency room with acute abdominal pain that is unexplained.

You can thank me later.

:)
Left sided UC Dx 1996

Meds

-azathioprine 300mg
-Lialda 4.8g
-Welchol 3.75g
-Toprol XL 100mg
-Hctz 12.5mg
-Omeprazole 20mg
-vitamin B12 1000mcg
-Vitamin D 2000IU
-folic acid 1g

quincy
Elite Member


Date Joined May 2003
Total Posts : 25764
   Posted 11/17/2012 9:48 PM (GMT -6)   
I'm confident I don't have it...but thanks.

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 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!
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