Pentasa and Bleach

Has anyone had weird reactions to bleach after taking Pentasa. I have noticed in the 8 months I have been on it, if there is any bleach in the toilet my urine turns red and it also stains the toilet seat.
A month ago I went to the hairdresser and got a head full of bleach not even thinking about it and had a terrible reaction . Has anyone had the same sort of thing happen?

This has only happened since starting Pentasa, it also leaves a reddy brown residue around the toilet bowl. We have two toilets in our house and it only happens in the one I use. I know urine changes colour with bleach but with Pentasa it seems to happen on an extreme level, I have read about this happening with other people on it too. I was just wondering if anyone else had the same thing happen with their hair.

I have switched to Pentasa sachets, I swallow the granules as I can't stand the size of the tablets. Before this I was on the 500mg tablets which are grey/white. I have had the same reaction with both forms of the medication.

I was originally diagnosed with UC, but then this changed when I travelled to see a GI. They recommended I stay on Pentasa as my inflammation only appears to be in the terminal ileum and large bowel so it may have some effect. I also read on here about the staining, it doesn't worry me but the hair part does as it has burnt off a lot of my hair (sounds very vein but it doesn't help how I feel about myself and having this disease take away all pleasures is very disheartening)

I live in New Zealand. So I need to travel 3 hours to the nearest city to see my GI as I live in a small town. The help here is not the best and have been misdiagnosed a lot. It wasn't until I was admitted to hospital that I was investigated seriously, but even then it took 4 months to get seen by a specialist. Previous colonoscopy showed inflammation but I was sent on my way unaware of this before the hospital stint, my GI looked at this and instantly diagnosed Crohns.

Ah, ok, I see. I've never been to New Zealand, but it sure seems like a beautiful place.

Sometimes Crohn's and UC can be distinguished in a colonoscopy (UC tends to be more continuous and usually starts with inflammation in the rectum; whereas Crohn's is often more patchy/discontinuous, and may include the anal area, may skip the rectum, and may include the small bowel terminal ileum more).

But usually to really make sure you know what it is, it's critical to look at biopsies and see exactly what kind of inflammation is occurring and how deep it is.

As for the Pentasa, like I said, it helps with UC, but studies show it's no better than placebo for Crohn's, even when the Crohn's is in the terminal ileum and/or colon. Many doctors use it for Crohn's, even though it was never approved, because of wishful thinking. Also, some early studies (15-20-25 years ago) showed it may have some small benefit in Crohn's. But as more data has come in, that benefit just kept getting smaller and smaller, to the point that it's really no benefit at all.

So if you have UC, it's worth staying on. But if you truly have Crohn's, you're wasting money by using it, and you're risking complications developing by being under-medicated.

How long were you symptomatic before your diagnosis? Did your colonoscopy show any signs of stricturing/narrowing, or deep ulcers?

Hi Beave

I have the skip inflammation shown in my colonoscopy. Luckily here in this beautiful country we do not pay for medications only the $5 prescription fee (which I no longer have to pay for a year as I received over 20 this previous year). I have also been prescribed Azathioprine, I am very naughty and havn't taken it since feeling quite bad after trying it, I'm unsure if it was the drug or being anxious about it. I have been waiting a few months to try it again but keep getting infections and viruses so I am reluctant to start.

Unfortunately I have not had as many investigations into this as I would like, only having a colonoscopy 4 months before diagnosis (being told It was all clear when it wasn't), and a small bowel MRI. I will be doing the 6 hour round trip to see my GI in two weeks so will be putting the pressure on for more investigation.

I guess because the government pays for our healthcare we don't get the prompt care you would if you paid. But even if I use my health insurance I would be seeing the same team of Drs.

The skip inflammation indicates it's *probably* Crohn's disease and not UC. What did your small bowel MRI show?

Azathioprine is moderately effective in Crohn's for many people, but it needs to be taken consistently for a long time to do any good. And whenever you decide to start it - if you decide to start it - you will need blood tests frequently to make sure your body tolerates it ok. Lots of people have some nausea and/or fatigue when they start it. For some people that goes away; for others it never does.

Jasanne- yes I know about the difference in bleach but pentasa is the only thing I can pin it down to at the moment....hairdresser mentioned anaesthetic but I havnt been under. Doesn't it suck having burnt hair

Yes I had those in hospital. I used to take them occasionally and yes they mentioned that before diagnosis. I no longer take nsaids. I have had prolific bleeding and upto 25 bms a day, mostly under control after an extended time on prednisone (Not back to normal but I'm taking this as normal for me). My specialist is completely certain I have crohns. I get fatigue, fissures, hemorrhoids, mouth ulcers etc

Meegee said...
Yes I had those in hospital. I used to take them occasionally and yes they mentioned that before diagnosis. I no longer take nsaids. I have had prolific bleeding and upto 25 bms a day, mostly under control after an extended time on prednisone (Not back to normal but I'm taking this as normal for me). My specialist is completely certain I have crohns. I get fatigue, fissures, hemorrhoids, mouth ulcers etc

OK, good to know they did those tests and that they talked to you about NSAIDs. It's good that your small bowel MRI didn't show anything. That means you haven't developed any strictures or fistula. That's good too.

With the bleeding you've had, were you ever anemic? Were any of your blood tests out of range? Ever get fevers?

Another colonoscopy might be appropriate, or just go ahead and start Azathioprine and plan for a colonoscopy in another 6 months or so after, to see whether things are improved.

You should really consider looking into other meds. Take it from one who paid the price of putting off the more powerful meds. I have reactions to just about all of them too (I have a long list of never again meds) so I completely understand you being terrified because that was me for quite a few years. I'm sure it's hard though having limited access to doctors. one reason I refused the meds was because at the time the doctor I went to was about 2.5 hours away and I was concerned about having issues with the meds so far away from the one who prescribed it because this had been an issue while I was going to him. The one I go to now is 1.5hrs and better with follow up so I have more peace of mind while being on them. But untreated crohns catches up to you.

Thanks Larbradorite & Beave

I really do want to give it another try, but as I have had sinus infections, stomach viruses, boils, and now a flu in the summer I havnt had much chance to start. I don't really want to start it being sick as my immune system seems to be giving up on me already without the meds.

I do understand I have to try it, sadly its the only option I have at the moment as in NZ the criteria for other medications is very strict.