Is it safe to take mesalazine/octasa long term for ulcerative colitis?

[Claire_1c]

Hi everyone, I'm Claire and was diagnosed with mild/moderative ulcerative colitis last year.

Apart from an initial flare up (followed by diagnostic procedures leading to a diagnosis), my only symptoms have been an uncomfortable/slightly painful feeling in my stomach/upper intestine.

My gastroenterologist prescribed mesalazine at 2.4mg daily. He explained that long term inflammation can lead to bowel cancer, and mesalazine is effective in calming the inflammation and keeping symptoms at bay. Three weeks later and the symptoms have completely disappeared.

However I'm also seeing a herbalist, and she is very against the long term use of mesalazine. She persuaded me to stop taking it, and use herbal mixtures plus various supplements instead. Two days after I took my last mesalazine tablet, the discomfort is back.

Does anyone have any thoughts on the long term safety of this drug? I'd be really grateful for some reassurance.

[BabsyWabsy]

Hi Claire, I am sorry to hear you have this diagnosis. I think you have answered your own question if your symptoms have returned on stopping the prescribed medication. If you are concerned about long term use, your gastroenterologist should be able to help you. Mesalazine is a new drug, approved in UK by NICE in January. Regular blood tests are recommended to keep an eye on long term usage.

Your herbalist might have a vested interest in keeping you as a customer and is unlikely to have the specialist knowledge that your gastro has.

[Claire_1c in reply to BabsyWabsy]

Great points, and food for thought about the herbalist! I have a follow up appointment in March, so I'll make sure the regular blood tests are discussed. Thank you for taking the time to reply.

[artisticmum in reply to BabsyWabsy]

Mesalazine/Octasa is not a new drug as I have been on it since 2015. Whether you can be on it long term is not a question I can answer, but I have tried to come off it and I am in agony if I do! A consultant put me on it with a steroid ( which I managed to come off), but I haven't managed to come off the Mesalazine. I only went to him with IBS. Also he suggested I went on Pregabalin for the pain which initially helped, but it is one of those drugs which helps initially and then you end up taking more of it to help. I have tried to come off this as well because of side effects, but I end up with rebound pain. He has tried to put me on other drugs, but I say 'no' now. Moral of the story I think, keep away from drugs!

[BabsyWabsy in reply to artisticmum]

Interesting. I was quoting the NICE website. There is a story there clearly. Doesn't it have a protective effect in damping inflammation and thereby reducing the incidence of bowel cancer? SIL struggle with pregabalin. Either way, a herbalist is unlikely to have the training and expertise that a gastro specialist has.

[artisticmum in reply to BabsyWabsy]

I am not sure what it does. I was just given it to take with a steroid. Obviously, the consultant thought I might have IBD. I have had a colonoscopy in the last three weeks to test for microscopic colitis as the last two calprotectin tests were slightly raised and I have had blood in the stool, but no sign of cancer, thankfully.

[Claire_1c in reply to artisticmum]

I'm so sorry to hear of your experiences. It makes you wonder whether doctors are too quick to prescribe drugs, especially when coming off can be so problematic. Sometimes though I do think they are unavoidable, especially when, as BabsyWabsy says, something is needed to keep inflammation in check to prevent potential bowel cancer down the line.

[MyStar86]

There is also a crohns and colitis group on here which is a much better place to ask your question and I think there is a digestive disease group as well. The gastro would not of put you on something longterm if any risks didn’t outweigh the benefits. Every drug comes with a risk even paracetamol but herbs have not been tested so they can claim they are natural and safe but that is far from the case many people can also die from taking unsure untested herbs and I am sure if these herbs went through the rigorous tests drugs have to go through they would also come with a long list of risks as well but due to them being untested that is why they appear risk free and the natural option is the safer option but personally I would trust a medical professional who has spent their life dedicated to studying what they are practicing and been through years of tests themselves vs someone who just maybe sits an online course at home for an hour and prints of a certificate but that’s my personal opinion as I have had terrible experiences with supposedly natural safe herbal supplements.

[Claire_1c in reply to MyStar86]

Those are very good points - thank you!

I'll post the question on the other group as you suggested as well, just in case anyone has something to add.

[xjrs]

You make very good points BabsyWabsy & MyStar86 .