Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
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Moonface apparently... of as it perhaps could be called these days "Putin face"
There are a range of side effects from steroids tbh.. the gastro or pharmacist should be able to advise you on those, not everyone will necessarily get any given effect. I've avoided pred in the past and had budesonide which (AFAIK) has a lower risk of side effects but I guess pred is perhaps stronger stuff...
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From what I recall boy did swell up a bit on steroids but forget which he had. Been though a load of meds now with not great results. Currently trying Ustekinumab on an 8 week injection cycle and fingers crossed he seems a bit better overall.
Soldato
@tang0 hope it works out dude
Soldato
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- 25 Nov 2005
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Water retention, my ankles swelled up abit on those roids
I'm sure it's been mentioned before, but have any of you looked at Keto or Zero Carb as a way of improving or managing your conditions?
I'm still undiagnosed thanks to Covid (many years of perpetual diarrhoea, pain, bloating, bleeding etc etc) but it was suggested to me to try the carnivore diet. I can only speak for myself but in 3 months all of my symptoms have entirely vanished. I'm actually having formed and regular stools once a day/every other day. Instead of diarrhoea etc 6+ times a day. This is a complete novelty to me.
I've seen lots of anecdotal claims that match my own experiences and wondered what you guys thought?
I'm still undiagnosed thanks to Covid (many years of perpetual diarrhoea, pain, bloating, bleeding etc etc) but it was suggested to me to try the carnivore diet. I can only speak for myself but in 3 months all of my symptoms have entirely vanished. I'm actually having formed and regular stools once a day/every other day. Instead of diarrhoea etc 6+ times a day. This is a complete novelty to me.
I've seen lots of anecdotal claims that match my own experiences and wondered what you guys thought?
Suggested by whom?
One issue with Crohn's is that you're already suboptimal at absorbing nutrients thanks to inflammation/scarring, trying an (arbitrarily) restrictive diet doesn't seem like a very good idea.
Best to speak to a dietitian for advice (ideally one who specialises in IBD) and not a nutritionist (anyone can call themselves a nutritionist) before trying diet-related stuff for Crohn's.
Soldato
I've tried paleo and still follow sometimes, and looked into AIP but latter is too many sacrifices for me.
I've had prednisolone with every flare, approx once a year or so. However last time I had prednisolone, I got a side effect I've never had before, which was shaking/trembling. I found out it's a rarer side-effect, and wore off after I'd finished the course. Other than that, bloating/increased appetite/weight gain (due to appetite partly), sweaty/clammy.
It's not nice, but it's worth it because for me it's always cleared every flare. Just the tremors thing was a *****r that was unexpected.
I only get Pred induced high blood sugar. and an almost immediate reduction in Colitis symptoms.
Being able to recognise the start of a flare helps massively in getting it under control quickly. My last flare was brought under control within a few weeks of just Asacol enemas.
Being able to recognise the start of a flare helps massively in getting it under control quickly. My last flare was brought under control within a few weeks of just Asacol enemas.
It's a wonder drug; for short term management it was brilliant for me. The problem was getting off them, and what they do the longer you're on them.
For me, the first time it was weeks until the real bad side effects kicked in. The longer I was on steroids, the faster and worse the in symptoms came on. True for pred, budesonide and beclametasone.
Really glad it's helped, fingers crossed you can get off, and stay off them, as quickly as possible.
So far so good. Went to hospital today for checkup, nurse now wants me to go straight on Azathioprine 150mg whilst on steroids whcih I wasn’t expecting, thought they would at least wait to see what the steroids would do but my Calprotectin was 2800 so I think they don’t want me to slip back. Apparently you take these for life 
Was also diagnosed with some long doubled barrelled name to do with extraintestinal manifestation of inflammatory bowel disease which affects the joints that was picked up on the small bowel MRI, for me when I’m bad my whole of my middle back around my ribs hurts bad whenever I sneeze/cough/laugh so I’m glad they know what that is now, I’ve had these symptoms longer than I’ve had Crohns symptoms. Annoying that I can’t remember the name of what it is as I wanted to look it up
Was also diagnosed with some long doubled barrelled name to do with extraintestinal manifestation of inflammatory bowel disease which affects the joints that was picked up on the small bowel MRI, for me when I’m bad my whole of my middle back around my ribs hurts bad whenever I sneeze/cough/laugh so I’m glad they know what that is now, I’ve had these symptoms longer than I’ve had Crohns symptoms. Annoying that I can’t remember the name of what it is as I wanted to look it up
Pred/Steroids is a horrible drug to get off if you get stuck long term. It took me 3 years after surgery and some serious side effects to finally get off it, The mental health effects were horrific for me too.
Hopefully the Azathioprine will keep you in check they can take quite a while to start working so probably why they have started you now rather than waiting. Hopefully they will kick in and you can tapper off the steroids without a flare up.
Hopefully the Azathioprine will keep you in check they can take quite a while to start working so probably why they have started you now rather than waiting. Hopefully they will kick in and you can tapper off the steroids without a flare up.
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Had a colonoscopy today, last one was in 2019 which showed mild inflammation (UC and proctitis), however today's showed "normal vascular pattern", "no macroscopic inflammation", and "no evidence of cancer". I asked how the polyps looked, and they said there weren't any.
Whilst I understand these are positives, and I'll be receiving a full letter in a couple of weeks for detail on the biopsies taken (presumably for evidence of micro inflammation), does anyone here have any further information on what this means, as I'm somewhat confused?
I've had IBD for 20 years since a young teenager, this is my fifth or sixth scope, and the diagnosis has always been the same or similar in vein; you have UC, it's mild but you definitely have inflammation, but today the doctor was pretty much in awe, he said everything looked normal, so I asked him what he meant by that. "Normal for an IBD patient, yeah?" I asked, "normal for a normal person..." was his response. Few of the other nurses couldn't really understand it either, said it's fantastic news.
I don't mean to come across as crass, insensitive, or rubbing it in as I know there's plenty of people suffering in this thread, as I have done in the past, but I'm genuinely confused. The recent stool sample in Jan came back very mild in inflammation, too. I feel exceptionally fortunate but similarly baffled.
e: just remembered, he also said unless I continue to get major symptoms, I may never need a colonoscopy every again.
Whilst I understand these are positives, and I'll be receiving a full letter in a couple of weeks for detail on the biopsies taken (presumably for evidence of micro inflammation), does anyone here have any further information on what this means, as I'm somewhat confused?
I've had IBD for 20 years since a young teenager, this is my fifth or sixth scope, and the diagnosis has always been the same or similar in vein; you have UC, it's mild but you definitely have inflammation, but today the doctor was pretty much in awe, he said everything looked normal, so I asked him what he meant by that. "Normal for an IBD patient, yeah?" I asked, "normal for a normal person..." was his response. Few of the other nurses couldn't really understand it either, said it's fantastic news.
I don't mean to come across as crass, insensitive, or rubbing it in as I know there's plenty of people suffering in this thread, as I have done in the past, but I'm genuinely confused. The recent stool sample in Jan came back very mild in inflammation, too. I feel exceptionally fortunate but similarly baffled.
e: just remembered, he also said unless I continue to get major symptoms, I may never need a colonoscopy every again.
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You’ll have to forgive me because I know very little to nothing about the affliction so apologies if I am misspeaking.
But please be very very careful with the carnivore diet. There are a ton of issues with it. Some fighters I know have used it very successfully to cut weight long term but the amount of work and supplementation they had to use to get it to work healthily was more than any diet I’ve ever known, and some had some disastrous issues after about 6 months, and it had done long term damage before they realised it.
Never heard of it mate, seems almost miraculous.
Sounds like you're free. Congratulations, I'm delighted for you.
I'd be interested to hear the disastrous issues they faced, as I've heard very strong arguments for carnivore.
I've tried many diets over the years, with carnivore I managed 5 days before giving up because I missed the food too much, so I didn't give it long enough, but my stomach was definitely improved on it. All anecdotal, of course.
I really appreciate your kind words. Having had the worst year of my life this year, with losing a parent, I'm thankful for some positive news.
Having slept on it and dwelled on it some more, I'm still really confused, I've spent 2/3rds of my life "identifying" as someone with an incurable disease (mostly internally, I rarely let people know about it). It's become part of me, so to be told that it's not there anymore, feels very, very strange indeed.
Obviously better to be talking to my GI specialist in due course to go over what has actually happened, I'll get back to everyone when I know more.
Sounds like your in remission and whatever you are doing is working well for you. Fingers crossed it stays that way for as long as possible…..
Thanks mate, I thought this too.
I attribute this almost entirely to my gluten and dairy free diet. I also try to be as active as possible, sleep well, get out as much as I can, that sort of thing. I'm very fortunate that my IBD symptoms are very sensitive to diet.