I started noticing, after symptoms of UC began occurring, that if I go to the bathroom (mainly pee) I will leave then go back & see purple stains from splash on the seat & under the seat. My urine is yellow/pale yellow but these mysterious stains show up. Has this happened to anyone else? I also do not have abdominal pain, save the gurgles & gas associated with UC (I'm assuming). Certainly not acute pain.
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Purple Stains on Toilet Seat & Under Seat
- Thread starter Kristin1979
- Start date
Just saw this post. I take Pentasa and I've been noticing the same thing!
Pentasa can create purple stains and Lialda can create light brown/pink stains. I bought plastic toilet seats for all of my toilets to avoid the permanent stain.
There have been many arguments about Pentasa stains versus porphyria. Some people do in fact have porphyria, but in most cases when someone is on Pentasa and the purple stains show up on the underside of the toilet seat, it is indeed the Pentasa causing this. I broke open a Pentasa capsule and put it in some water. I checked it a few hours later and the water was a slight purple color. Women on Pentasa are going to see this happen more than men will due to the fact that when we urinate the urine splashes all over the underside of the seat.
If you are still concerned, definitely see your doctor about this.
For some reason, it seems that only the patients are aware that this can happen as a result of the medication. Pharmacists, doctors and nurses that I have talked to have all said they did not know this could happen and even some drug reps claim they have not heard of this--which I find highly unlikely.
Like SarahD, once I stopped Pentasa the purple staining went away. Once I stopped Lialda, the light brown/pink staining went away.
There have been many arguments about Pentasa stains versus porphyria. Some people do in fact have porphyria, but in most cases when someone is on Pentasa and the purple stains show up on the underside of the toilet seat, it is indeed the Pentasa causing this. I broke open a Pentasa capsule and put it in some water. I checked it a few hours later and the water was a slight purple color. Women on Pentasa are going to see this happen more than men will due to the fact that when we urinate the urine splashes all over the underside of the seat.
If you are still concerned, definitely see your doctor about this.
For some reason, it seems that only the patients are aware that this can happen as a result of the medication. Pharmacists, doctors and nurses that I have talked to have all said they did not know this could happen and even some drug reps claim they have not heard of this--which I find highly unlikely.
Like SarahD, once I stopped Pentasa the purple staining went away. Once I stopped Lialda, the light brown/pink staining went away.
This sounds familiar - I noticed the exact same thing when taking 2g Pentasa a day.
I once saw the result of urinating into a toilet that had bleach in it: deep red water. I thought my kidneys had explored inside me and were leaking out
But from memory of my chemistry lessons at school, it looked like sulphur dichloride. So assuming the chlorine is coming from the bleach, I am guessing that Pentasa takes sulphur out of the body at some point - as the drug's molecule doesn't contain a sulphur atom.
So, I think it's a reaction between the waste metabolites of the drug and the chlorine in your toilet basin - rather than a problem in the body
I once saw the result of urinating into a toilet that had bleach in it: deep red water. I thought my kidneys had explored inside me and were leaking out
But from memory of my chemistry lessons at school, it looked like sulphur dichloride. So assuming the chlorine is coming from the bleach, I am guessing that Pentasa takes sulphur out of the body at some point - as the drug's molecule doesn't contain a sulphur atom.
So, I think it's a reaction between the waste metabolites of the drug and the chlorine in your toilet basin - rather than a problem in the body
OK, now I'm curious. I found this from Stanford U Department of Urology
http://urology.stanford.edu/about/articles/abnormal_urine.html
But it doesn't say exactly why.
I foudn this from something called the GP notebook
I found a bunch of even less useful stuff, but no definitive answer on the chemistry. It sounds like it might have nothing to do with meds, it might just be a reaction between urine and bleach.
Nope. In my case it was the medication. Purple with Pentasa and Brown/Red with Lialda. I left some granules from a Pentasa capsule in a bowl of water for a few hours and the water turned the same color as the spots on the underside of the toilet seat. I've been off all meds for almost 2 years and still using the same toilet cleaner as I have for the last 5 years or more, and no more spots.
Same for me too. I no longer take Pentasa and since stopping I've had no purple stains on the toilet seat and no colour changes when my urine comes into contact with bleach.
Purple stains on toilet seat enigma.
I have been on 4 mg daily Pantasa. I have noticed the purple urine, my Dr. ran a bunch of tests and can't find anything.
I wanted to know if others using the medication have the same effect.
Please share as I am doing all these test without a concrete result.
I read that if you dissolve a tablet in water it will turn purple as well. The meds are so expensive I have not yet conducted the experiment.
This is freaking me out just a little
I have been on 4 mg daily Pantasa. I have noticed the purple urine, my Dr. ran a bunch of tests and can't find anything.
I wanted to know if others using the medication have the same effect.
Please share as I am doing all these test without a concrete result.
I read that if you dissolve a tablet in water it will turn purple as well. The meds are so expensive I have not yet conducted the experiment.
This is freaking me out just a little
Thanks for all the input. The group of gastroenterology (Australia) have never heard of this reaction but on showing them your feedback they are taking it up with the manufacturer.
All I would like to see is some written information on the Pentasa pack or the Side effects brochure to make patients aware this can occur - rather then us worrying unnecessarily.
Cheers
All I would like to see is some written information on the Pentasa pack or the Side effects brochure to make patients aware this can occur - rather then us worrying unnecessarily.
Cheers
I agree. My docs had never heard of it. I find it hard to believe that this has never been reported before to the manufacturer or to all of these GIs. It happens with Lialda and Pentasa, so how come nobody ever mentioned it before? Highly unlikely! Nonetheless, at least we have each other here to share our own findings.
Guys I've had the same issue and have had anxiety about this for s long time. 3 separate doctors said they never heard of it. And they've been GIs for a long time. I stopped taking lialda out of fear that I was having kidney failure or something. One thing that's annoying me is that no one is posting pics so we can compare and see if we are talking about the same thing!
I'll do the honors. Is this what it looks like???
These were from separate days. I don't know if anyone else had the entire toilet contents turn dark purple like that. Thats all urine, no poop. There was no toilet bowl cleaner in there when i peed. The bowl wasn't blue from fresh toilet bowl cleaner but I'm not sure if it was recently cleaned.
Attachments
I am no longer on any meds, so I can't send pics, but I can tell you that this discussion has come up on other websites as well. It is definitely the Pentasa and/or Lialda that is causing the color change. I took a Pentasa capsule apart and set it in a glass of water for a few hours and the water changed color. I realized one day that I forgot to flush after I urinated because 4 hours later when I went to urinate again, the bowl was full of purple water.
If you are concerned about your kidneys, get them checked out! Go to a urologist...do something. It is much better to get that checked out than to worry, and much better for you to get it checked than to just stop taking a medication that potentially solves your bowel issues.
If you are concerned about your kidneys, get them checked out! Go to a urologist...do something. It is much better to get that checked out than to worry, and much better for you to get it checked than to just stop taking a medication that potentially solves your bowel issues.
How are you not on any meds anymore? What do you do to stay in remission without meds?
Total colectomy for UC. No colon, no disease, so no meds necessary.
Hi there. New to group and have a comment and a question. I was prescribed Mesalamine which leaves stains on the toilet seat as well as the drugs you mention. A tip in another group was to use Krud Kutter. I haven't tried it yet but thought I would share it here.
My question is for BOB. You say you have a total colostomy and I have a feeling I may be headed in the same direction. Would you mind giving me your initial thoughts and feelings when you had the operation. Is it annoying? Something you get use to? I would like to know what to expect if it should occur with me.
Thanks BOB, a/k/a 2th Fairy
My question is for BOB. You say you have a total colostomy and I have a feeling I may be headed in the same direction. Would you mind giving me your initial thoughts and feelings when you had the operation. Is it annoying? Something you get use to? I would like to know what to expect if it should occur with me.
Thanks BOB, a/k/a 2th Fairy
Hi darkeyes7 and welcome to the forum! I have had a total proctocolectomy (removal of entire colon and most of the rectum) with formation of a J-pouch and now have an ileostomy (stoma from small intestine). I went into surgery with the intention of the stoma being temporary. The J-pouch surgery I had makes it possible for my stoma to be reversed. I thought it would be the end of any sort of life I envisioned for myself and wanted nothing to do with it other than bide my time until the 3 months was up. However, what I found instead was new health and a new me, all because of Bob!
Surgery is hard and recovery is long. It certainly takes some getting used to the trial and error, and new routine of having a stoma, but for me and many others, it has made a NEW life in a POSITIVE way. Bob allowed me to get off of meds, eat more foods I love, and leave the house without fear of having an accident for the first time in 20 years. By the time 3 months came around and the surgeon said I could have the reversal surgery, I chose instead to keep Bob. A year after that I went back to school ad now I work in surgery assisting the surgeons.Not everyone has as positive of an experience as mine, but it also doesn't have to be the worst thing to happen to you. I ran out of options and that led me to surgery..... and boy am I grateful for it!
:thumleft:
Thanks 2thFairy for your reply and the information. At (almost) 74 I see I still have a lot to learn. (and, it doesn't take much to confuse me) I've never gotten into using 'initials' instead of full words, so I had to search for a few of the ones I came across in the links you mentioned. (plus, I put my glasses on - just had cataract surgery and sometimes I read words differently - then too, I never paid attention in biology class) I read the pet peeves of people and thought we were more evolved than to make fun of people with problems. I do not interact with others much so I've been spared the embarrassment. My pet peeve would be - doctors who diagnose you and then do not explain their diagnosis and get upset when you go online to get more information. However, thinking to myself that my problem was strictly caused by what I was eating, I ordered 2 cookbooks to check out how I should be cooking foods differently. Maybe they will help but I do wonder how I got an enlarged colon to begin with. My doctor is good but I wonder about people that specialize in rectums. He prescribed Mesalamine for me and told me I would be taking it forever or for the rest of my life, whichever comes first. He has a sense of humor. He hasn't mentioned any surgery but the thought has come to me and I do try to pay attention to what I feel.
Now, do I refer to you as BOB (or are you using 'initials') or 2thFairy (great handle by the way). Just so I know and can end my confusion :lol2:
P.S: In my previous post I mentioned Krud Kutter. Be Very Careful. It not only takes the stains away but the finish (when rubbed with a scruby sponge - almost down to the paint). Thought I'd let you know.
Now, do I refer to you as BOB (or are you using 'initials') or 2thFairy (great handle by the way). Just so I know and can end my confusion :lol2:
P.S: In my previous post I mentioned Krud Kutter. Be Very Careful. It not only takes the stains away but the finish (when rubbed with a scruby sponge - almost down to the paint). Thought I'd let you know.
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You can refer to me as 2thFairy. Bob is the name of my stoma, full name Sideshow Bob. My husband and sister named him while I was still in the hospital.
Thanks 2thFairy for your patience in answering my questions.
Between dealing with the stains on the seat and the physical pain of an enlarged colon, I'm thinking enough already. However, an operation to fix my plumbing is nothing I'm looking forward to either. I do have trust in my doctor but I do not think doctors are aware of how these Mesalamine pills affect people. I do intend to ask him at my next office visit, next month, if there might be another pill that would work, minus the stains, or exactly what my alternatives are.
If there is anything I am not asking here but should be, please feel free to let me know as I would appreciate any suggestions from anyone.
Thanks again,
Irene
Between dealing with the stains on the seat and the physical pain of an enlarged colon, I'm thinking enough already. However, an operation to fix my plumbing is nothing I'm looking forward to either. I do have trust in my doctor but I do not think doctors are aware of how these Mesalamine pills affect people. I do intend to ask him at my next office visit, next month, if there might be another pill that would work, minus the stains, or exactly what my alternatives are.
If there is anything I am not asking here but should be, please feel free to let me know as I would appreciate any suggestions from anyone.
Thanks again,
Irene