Having been diagnosed with UC in February this year, I saw the specialist last week (May) for a follow up. I asked him something along the lines about an inevitable flare-up. He said that it wasn't inevitable and that some people never have another flare-up.
Can this be true?
Is there anyone out there who's never had a second flare-up?
At this point I must mention that I've slowly been pushing all the boundaries and having foods that I thought were a no-no: the skin on a jacket potato, dairy, tomato based sauces, alcohol etc. and not had any major side effects from any of them.
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Shoeysmum
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Firstly UC is a life long condition that will likely mean you have flare ups. I have never yet met anyone who has only had a single flare up.
secondly don't believe all the hype about special super diets. Whilst during a flare up a low fibre diet is best, we are all different and what one person may tolerate another cannot. I was told this by my dietitian after trying a gluten free, then dairy free, and lactose free diets because some people found it worked for them. It didn't work for me, the only thing I cannot eat is high fat foods and chinese!
you will find in time there are some foods that will cause you some discomfort or diarrhoea, but dont feel afraid to eat and enjoy all foods just because a few make you worse.
I've had UC for nearly 40 years, only got an official diagnosis around 20 years ago, I was put on Asacol and only take 1 tab a day (when I remember! ) and I can honestly say I have not had a flare up since, my Gastro told me I may never have any further problems but he's happy for me to continue on Asacol just in case.
I'd been put on Asacol too; 3 x 80g tablets as well as the foam enema. Gastro told me to stop using the enema but carry on with the tablets.
I had read (must've been on here) that if you never had any flare-ups you'd probably been misdiagnosed in the first place so it's good to know that others don't get flare-ups.
I definitely have UC, have endured many colonoscopies to prove it !!
Asacol works for me and I have no doubt that keeps me in remission and my Gastro Con agrees, although it is affecting my liver enzymes there is no way I'm stopping it.
Good luck with your treatment, hopefully you will be in remission vey soon and long may it last.
So i know Im late to the party on this one, but im in a weird boat and feel like I should share my experience. I was diagnosed with left sided UC when I was a junior in highschool.
It came on quick, I thought it was from bad sushi, but I had severe diarrhea that quickly turned to straight blood. After about a week of it being nothing but blood, I was taken to the doctor where they ran tests on my stool, did a colonoscopy, and put me on lialda. I was taking 12 pills a day, and the symptoms completely went away. Being a stubborn kid, once the symptoms had cleared, I convinced myself that I didnt really have this illness, I mean who wants to hear that at such a young age? So I stopped taking the meds.
Flash forward to college and I had still not taken any meds. I also didnt have any symptoms. I literally forgot I had it. I should also note that by my sophomore year, I was also an avid cigarette smoker. I smoked all the way up until 5 years ago, when I started seeing someone who hated smokers. Within a month, I noticed I was having diarrhea that wasnt going away. Still no blood. At this point, I humored the idea that it could be the UC again, but it had been so long! So I went to see a gastro, and had another colonoscopy, and again was told I had UC, was prescribed lialda and some rectal steroids. When I asked the doctor why I went from literally feeling normal all these years without meds, to suddenly getting the symptoms. Thats when he asked me if I smoked. Turns out nicotine can suppress the immune system, and I shit you not, had been protecting me from the inflammation all these years, and apparantly once I got off nicotine, the symptoms could return. (Took mine about 3 weeks after quitting to kick in) Once I got the news, it didnt take much convincing to hop back on the nicotine, and since then I've been wearing a 24 hour nicotine patch. I'm 32 years old now, and dont want to be on nicotine forever,so for the last month I weened off it again ( stubbornly). This time, I was more keen to my symtoms, so before it got to the point of abdominal pain, diarrhea, etc I went back on the patches, and booked a gastro appointment for this week. Who knows what this doctor's gonna see in there...
Anyway, although my story is anecdotal at best, there have been other case studies surrounding the effects of nicotine and UC. And it seems its played a positive roll with my situation thus far. Positive to the point where it was out of sight out of mind forgotten. Of course I woudl never advocate nicotine to a life long non-smoker, as they woudl most likely have adverse reactions to the nicotine way before theyd see any relief. Just curious if anyone else on here was a smoker/still smokes?
Thank you for your reply jjoshh86. It was a very interesting story.
I stopped smoking about 4 or 5 years ago but did it via an e-cig, which I still use constantly. Obviously I'm getting nicotine from that but probably not the quantity I would've got through cigarettes.
It was a couple of years after I switched to e-cigs that my symptoms started so I don't think there's a correlation there.
Just to add, I did have another flare up which started in late September/early October last year. It just went on and on and on for just over 2 months and so I was put on steroids which immediately killed it dead. But don't get me started on the side effects that the steroids caused!
Very interesting, and thanks for your reply. What was the steroid they put you on if you don’t mind me asking. I think for as easy as it is to be upset we have this condition, we can be grateful that medicines are still responsive to it. Wishing everyone here the best of luck!
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