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 the 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.
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Hello I have recently got my U colitis back, just on day 2 of the drugs a depository and foam steroid I'm not happy about drugs but as the condition is chronic and lead to severe bleed it's best to take the meds until the flare up has gone as in bleeding and loose on loo,, it will most likely come back without meds unless you can control it by diet,as well as diet I'm on probiotics I seemed to self cured myself about ten years ago been in remission 9 half years I was on v strict diet soluble fibre food only that's mash potato fish chicken easy to digest food no skin no seeds no high fibre like wholemeal bread tin fruit n veg nothing rough must touch the colon the harder it is to digest the more the colon moves to get it down and the harder the poop the more bleeding will be set off, I managed 3 days with no blood now gone from 4 times a day v loose poop and bleeding to forming a thing stool day before my colonoscopy yesterday which confirmed my colitis, I don't intent to take the drugs forever, I advice try the diet,and chamomile tea not tried any herbal remedies but worth a try give them chance, see if your ok probiotics to get good gut bacteria is vital no extra mature cheddar cheese and as little sugary food as poss, take care,your pain will be trapped wind eliminated various gas producing foods, unless it's possibly inflaming again,the immune system can break down from bad bacteria and stress causing a flare up so I've read,hope the alternatives work for us again if you 😊
Hi TwinklySunflower, I'm sorry you've had such a tough time with the UC. Mine has been nowhere near as severe. It's great to hear how you've learned to manage the symptoms with diet - by far the best way if it works, but also miserable to have to go without so many nice foods. Probiotics are a great tip - thank you!
Hi yes I go shopping and come back with couple items lol today I got bread cat treats and cat food I having bit chocolate on night I feel tiredout still but on mend no bleeding for 2 days before Tuesday's colonoscopy and 4 days now I bled after colonoscopy couldn't poo for couple days now I'm forming little things sasage types not watery like at first, eat apple with no skin I cook it in microwave with bit water,check out probiotic foods 🤗
Hi, I have taken mesalazine for over 25 years and had regular blood tests etc I have never had any issues with it that I can point to, as far as i'm aware it is as safe as it gets. Your herbalist needs to explain why she thinks it is dangerous. Diet can certainly help but you need to find the one that works for you (many people seem to benefit from keto or all meat). In my experience only two herbal treatments have worked for me. One is slippery elm bark, the other is black seed oil aka Kalonji oil, aka Nigella sativa (think that is how you spell it). I wish you luck and health and remember most doctors also want the best outcome for you, they go to great lengths to get you the right treatment and should also be listened to.
Thanks Jameshuh. 25 years is long enough to prove a drug's safety in my book. Interesting to hear which herbs have worked for you. I'll run them past my herbalist and my gastro team. Really appreciate your advice.
I should mention the form I take is either mezavant or salofalk, one of the earlier ones wasn't much good but those two seem ok on the tummy. Wishing you health and vitality.
I was on mesalazine for about 4 years from diagnosis aged 61 and had no problems. It was stopped only because I needed something stronger for my increasingly severe symptoms. I really think you should follow the advice of your gastro doc rather than the herbalist. Also make sure that the gastro team know what herbal remedies you are taking. Hope you find something that helps your inflammation.
Thank you Valbaty. Good advice about running the herbal remedies past the gastro team. It's tempting to think that everything herbal/natural is automatically safe, but herbs can be deadly if taken incorrectly, so this is definitely food for thought.
I was diagnosed with distal colitis way back in November 2011 and have been on 2.4 gms of mesalazine (Octasa) daily (3 x 800 mgs enteric coated 'tablets') ever since with absolutely no problems whatsoever.
My gastroenterologist has told me more than once that this is an extremely safe and effective first-line drug, to the point that when I get the occasional mild flare-up, I can quite safely double the daily dose (ie repeat the 2.4 gms in the evening) without consulting him. Clearly if after two or more weeks the flare-up hasn't subsided then I would approach him for advice, which to date has been to take a short course of a mild steroid ('Clipper') which has always calmed down the inflammation.
So from my experience I would say you need have no qualms about long-term use of this drug.
Of course, should you wish further reassurance do speak to you gastro, and if he/she is open-minded, mention your herbalist's concerns and see what is the response.
Thank you SetteeSofa! This is very reassuring to know you've not had any issues. I know my gastroenterologist will also reassure me it's ok, but I want to do as much research as I can before committing to this drug long term. Just realised how long you've been taking mesalazine. I'd say that was a pretty clear endorsement.
I've been on Mesalazine for 15 years, initially 2.4 mg, but now 1,2 mg Salofalk granules. I understand not only is it very safe, it is protective against bowel cancer. I can increase the dose/add in suppositories if I feel my symptoms are flaring, which is vanishingly rare. My IBD Nurse is very helpful - if I email she is very quick to get back to me. Good luck.
Although mesalazine preparations are generally well tolerated, adverse reactions have been described with their usage. These include worsening colitis; renal toxicity such as interstitial nephritis and nephrotic syndrome; pulmonary toxicity such as interstitial lung disease and fibrosis, bronchiolitis obliterans, pulmonary granulomatosis, and eosinophilic pleural effusion; pericarditis, pancreatitis, hair loss, and Stevens-Johnson syndrome.
I suppose there are always adverse reactions to every drug, but most people here seem to be saying it doesn't cause any issues. Thanks again!
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