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Well, after a particularly stressful summer, my hopes that UC was in my past have been dashed.. I'm suffering a full on flare-up with inflammation spreading into my hip and knee joints..
My sister put me off taking medication following her own research when she was diagnosed, and she controls her UC with a strict macrobiotic/vegan diet (with varying success)
This particular bout is causing me to experience difficulty in walking and I have been quite unwell, uncomfortable and lethargic for at least a month so I am trying Pentasa..
Has anyone had any success with this drug?
Anyone got any dietary advice which isn't too extreme?
Cheers 🙂
her own research
Did she get a PHd out of it or was this from GoogleU?
my wife suffers occasionally and she's tried so many diets to help, and none of them really have. From this experience I am not sure a given diet will work and certainly it seems very hit/miss until you find a combination that helps for you personally. But for me even this sounds a little optimistic and that actually perhaps colitis controls itself. Nobody really knows. Ultimately I think external factors play more of a role, the stress of life, the mind. For my wife if it gets really bad steroids seems to be the only thing to help, nbut they are the last option. Its not good. Have a hug, my post doesnt help. 🙁
Pentasa is just branded Mesalazine isn't it ? I used to have UC 10-15 years ago and took Asacol (another mesalazine brand) with variable results. My flareups always seemed to be stress related but the consultant at the time reckoned that research hadn't proven a link (whadda they know). Had to go onto steroids a few times when the flareups lasted ages.
Wierdly, the one thing which did stop it in it's tracks were arsenic based suppositories (how apt!). Had to get them specially ordered/made and eventually they stopped making them.
Diet didn't seem to make any difference. In the end it just went away.
In hindsight, taking any notice of my sister was a daft move.. She's a raging hippie with some weird beliefs
yeah asacol is the same thing
One thing to bear in mind is that the different mesalazine formulations have different release profiles. So whilst the active ingredient is the same, the speed at which it's delivered differs between products. Pharmacists are advised not to switch patients between brands and manufacturers, because once a patient is stabilised on one switching to another can cause problems. So that's something to look out for, now you're started on it it's probably a good idea to stick to Pentasa for a decent length of time to see if it helps, rather than switching between different mesalazines. You can ask your pharmacy to supply the specific product you need.
UC is grim, good luck, take it easy, I hope it settles down sooner rather than later.
My sister in law had it bad. Had to have her bowel taken out and had a stoma bag for a few years. She has had reversal surgery a few months back and hopefully is getting back to a bit of normality. It's a horible thing. My post probably doesn't help but take it easy fella.
Yep, been on immunosuppression for 5 years or so now and it's kind of under control.
I've never found foods make a massive difference although I can't drink beer and expect to be OK.
I do eat a lot of junk food during a flare, it's all going to come out rapidly and I find the greasy, bulky stuff causes less pain than a sensible healthy diet.
I also found that increasing the asacol on its own was never enough to get a flare under control, I always needed steroids.
It's a horrible thing to have and I hope you start to feel better soon
I was prescribed pentasa (50mg 3 times a day with food if I recall) after having my ileum removed just over 10 years ago, I personally didn't get on with it at all as it made me feel constantly sick so I stopped taking it after about 6 months.
As it was post op I have no idea if it was making a difference either way really - but just couldn't face taking it any longer.
Areas of possible experimentation/investigation - 1-probiotics 2-Helminth therapy 3-fecal transplant
your doctor might be able to prescribe vsl#3 a strong probiotic.
I'm on Pentasa, 1.5grams per day. No obvious side effects from the drug, lucky so far. Even luckier in that I've never needed steroids or antimetabolites.
Personally, I'd get back on the Pentasa, and also use a strong probiotic:
and get some Aloe Vera drinks from Holland and Barrett.
But these are just symptom control methods- what are you doing to eliminate or deal with the stress? Can you do that?
I've had great results using Predsol Retention Enema. About a week and a half on the stuff to completely defeat my first really bad flare last year. Then symptom free for about 12 months. It was much easier to administer than I'd anticipated.
Not a UC sufferer, but I have had (luckily very mild) Crohn's Disease for the past decade. Pentasa worked for me for a couple of years, but gradually got less and less effective. I found that steroid treatments had some pretty strong side effects, but when I had a flare up nothing else got rid of it faster. Though take everyone's diet and medication advice with a pinch of salt, as pretty much everyone I talk to with IBD has a different experience/success with different methods and treatments. I never found any diet changes to have any effect. Although weirdly, pepsi makes me feel like I'm about to die, while coke is absolutely fine.
You should be thinking about ways to reduce stress though - I found that at university my bowel health cycled pretty nicely to match with exam season. And if you aren't already, do go see a specialist. I'm eternally grateful for how the NHS has helped me out though all of it. Good luck with finding a treatment that works for you - I know how unpleasant it can be.
Know someone that had it for many years, tried to control it with steroids, these buggered his hip bones and now has had both hips replaced in early 40's and ended up with a colostomy, life seems to have improved for him since. Father in law had it till it turned to bowl cancer in early 50's then 5 years later secondary liver cancer and this finished him pretty quick, sorry nothing much positive here, horrible thing to have.
Sorry that was a crappy post and I've missed the deadline to delete it, pj.
I had UC for six years, for me antibiotics and stress had something to do with it.
Ended up swapping jobs when I was made redundant form a stressful office job and decided to go for a more active job, now work in a factory, loads of walking, lifting, but no stress, my health is so much better now.
The stress thing was the answer for me, I tried different diets but now I eat and drink whatever I want, but vary it. I also make sure I am drinking enough fluids, as dehydration can be a trigger for me.
I also look out for the tell tell warnings signs, feeling tired, aching joints, etc. Then I take it very easy, back off the riding get more sleep in and chill.
I also have two close friends who also suffer with UC, they treat their condition completely differently to me, one via diet and no meds, the other is on a cocktail of drugs, I think there is no one, correct path to take with this condition, you just have to find what works for you.
Good luck by the way, hope you find what works best for you soon
had it on and off for a few years now. Really badly the first time and was on the measalazine and steroids for a while. flairs up now and a again but not to the same extent as I get it treated quickly knowing what is happening. Agree with most of what others have said. I work in retail and find my flair ups are around christmas, dont know why but I put it down to any of three things. 1. I am more stressed 2.My diet suffers, more drink, eating too much crap, skipping lunch at work 3. lack of exercise, due to work load never get any nov-jan. I find all this leads to me putting on a bit of weight which then triggers it. Works out a bit like a built in weight control for me, loose a bit of weight and I get better, put it on and it flairs up. Not that simple, but its along these lines.
Our son got it aged 7, he's 12 now and we never really had a grip on it, the best he has been was after seeing a nutritionalist who gave him high quality probiotics and some gut cleansing stuff, he looks like a little vampire he is so pale and it breaks my heart as it's hard to get hold of it as he doesn't know how to manage it etc
Please don't take any chances if anything doesn't feel right, out of the norm so to speak. Seek advice as soon as possible. Not wishing to alarm anyone but my son, at the age of 21, contracted UC and within a few weeks we'd lost him. This horrible disease doesn't just affect the lining of the colon but other vessels too. He died of a brain haemorrhage. He went into hospital and was quickly diagnosed with UC, but we were given little information and we had no idea that this could happen. He was just given a card to show anyone if he needed urgent access to a toilet. If there are any symptoms of loss of sensation to limbs then seek advice.
Had it about 20 years. First 5 were the worst. My pharmacist sister had a patient who'd had a massive flare up on holiday in the US and was treated with big doses of vitamin B12. I bought some 1000 microgram B12 tablets from Holland and Barrett and started improving immediately. I was taking Pentasa too. Exercise really helps.These days I take both for a few days if I feel a flare up coming on. Massive empathy with all the sufferers, keep smiling.
Mother in law has it quite badly - when steroids and other meds stopped working she started on a course of Infliximab - which is administered intravenously. Seems to have really helped so far. WWW.remicade.com