Crohns / ulcerative colitis sufferers
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Though it might be. I don’t particularly rate that steroid for IBD, it’s ok. Budesonide is decent, but it messes with me emotionally. I’ve found beclametasone (specifically the brand Clipper) to be absolutely brilliant. Much more bearable side effects, and a more pleasant taper.
If you aren’t feeling the steroid is working, might be worth a discussion.
Good luck mate.
I had to see the out of hours doc so they weren’t as clued up. I usually just call the IBD nurse and get advice from the Consultant but they are closed for business until Tuesday... I’m just wanting it to deal with the cramps tbh the rest can be dealt with once I get in touch with the ibd team. I would rather they just took the ruddy lot out and gave me a bag in all honesty.... Lol
Cheers mate...
Hahaha I know that feeling.
Thankfully I’m in remission for the first time in 4 years, it’s a rough ride mate, hope it gets sorted ASAP.
28 y/o UC sufferer here, diagnosed at 11 via colonoscopy, and have had diarrhea since (pretty much no other symptoms, thankfully).
Two further tests via colonoscopy, one at 18 and one at 25, both came back with the same result.
I've been on 500mg of Pentasa Mesalazine for the last decade or so, which has been allowing me to go three to four times a day, always loose stool.
Cut gluten from my diet just before Christmas and I've not had diarrhea since. Always solid movements, and typically once per day.
Magic... next step for me is coming off medication entirely should my doctor agree, which he probably won't.
Anyone else attempted this and had positive results?
Two further tests via colonoscopy, one at 18 and one at 25, both came back with the same result.
I've been on 500mg of Pentasa Mesalazine for the last decade or so, which has been allowing me to go three to four times a day, always loose stool.
Cut gluten from my diet just before Christmas and I've not had diarrhea since. Always solid movements, and typically once per day.
Magic... next step for me is coming off medication entirely should my doctor agree, which he probably won't.
Anyone else attempted this and had positive results?
No but the OH get bad wheat bloat so has attempted it...He step dad is Celiac so we always accomodate that in any family gathering. We went to a celiac approved restaurant in London called Niche I couldn't believe the food was Gluten free it was fantastic...So it can be done without having to eat cardboard...
I should try it...
I had something similar. I have a pretty aggressive form of pan colitis.They tried for years to get me in remission, and I had my surgical consult and it terrified me. So I ignored the dietary advice, and began an anti inflammatory diet of specific foods, shakes/smoothies and supplements.
I take quite a lot of medication for it too mind; loperamide, Mesalazine 4g, mesalazine 2g enemas, azathioprine, Vedolizumab, and was on beclatetasone too. Tried adalimumab, presinisolone and budesonide too.
Been symptom free for months now. They say diets and supplementation don’t do anything, but it did for me. NHS diet advice was terrible, service is awesome though.
Glad to hear diet worked for you too mate, awesome news.
It is a bit surprising that they didn't test you re: gluten sensitivity - tis simple enough for them to just run that test among all the others (AFAIK)
Sounds more like Celiac than U/C. 500mg of Mesalazine is a very small amount I take 4.8g orally and 1g up the chuff daily. I doubt such a small amount would have any effect on U/C tbh.
Have you been tested for Celiac ? Your symptoms and improvements cutting gluten fit it almost perfectly.
Naturally I've been reading up considerably on UC and gluten diets as of late.
It's a very small study, but this was a good read:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4331053/
Weirdly this bloating thing comes up often in Celiac sufferers/gluten sensitivity but it was a symptom I never had, which made me question if I do have gluten sensitivity. I guess these issues manifest themselves differently for different people.
Thanks mate, appreciate the kind words.
That's the issue with doctors and I guess our system in general, is that we don't get enough bespoke time dedicated to us. Like with me, I see my doctor once a year for less than ten minutes all in. I told them I reduced my medication (years back) and they weren't best pleased about that, but I told them that the change in medication levels made no difference. They were reluctant to look into that any further.
I'm not sure... I've heard it's actually quite difficult to diagnose. I've had multiple blood tests over the years (an average of one or two a year), colonoscopy, endoscopy and nothing has ever shown or led me to believe I could be gluten intolerant/Celiac.
I guess I've been wrapped up in my own little world as I'd forgetten how little medication I'd be taking, that explains why the doctor was annoyed that I'd reduced from 2 500mg daily to 1 500mg daily. As I said above, it just didn't seem to make me feel any worse and more medication made me nauseous.
Not been tested for Celiac yet, no. The doctor said - at my last consultation - that if I wanted to go down that route I'd need to have a heavy gluten diet for 6-8 weeks and then have an endoscopy. I'd bet my life on it that I have a have a gluten intolerance of some degree, there's *almost* no doubt in that (I say almost as I can't be 100% certain, but it's pretty obvious what happened, my symptoms disappeared within 48 hours, after 17 years...!)
Perhaps I am Celiac rather than UC, and the symptoms of eating gluten have manifested themselves to ulcerating my colitis, perhaps leading to the wrong diagnoses with the colonoscopies I've been having?
Or is that just wild speculation?
It could be mate Colitis basically means inflammation. Celiac can cause inflammation so it could have been mis diagnosed or just that you were inflamed when having your camera. I have had horrible symptoms but having a camera showed I was fine and the opposite too been feeling pretty good but the camera shows bad flaring.
If what you are doing is working then I would carry on especially if cutting the gluten is helping. Try getting settled on your new diet and see if it lasts.
IBD is so different for everyone and finding what helps can be a lot of trial and error. The docs are not always right and sometimes we can help our selves more trying things they would not necessarily recommend.
Just be careful cutting meds to quick as your body will need to adjust which can cause issues too.
Good luck.
If what you are doing is working then I would carry on especially if cutting the gluten is helping. Try getting settled on your new diet and see if it lasts.
IBD is so different for everyone and finding what helps can be a lot of trial and error. The docs are not always right and sometimes we can help our selves more trying things they would not necessarily recommend.
Just be careful cutting meds to quick as your body will need to adjust which can cause issues too.
Good luck.
To give you an idea of my UC, so you can decide. Toilet up to 20 times a day, full of blood and mucus. Not really solid. Terrible pain, terrible fatigue. Didn’t want to eat, constantly up at night. That’s worst case but until a few months ago that was my life most of the time.
I had 3 or 4 colonoscopy or flex sig a year, consultant every 3 months and IBD nurses in between. Blood tests every 4 to 8 weeks (I have other conditions too mind)
That’s not to say if you didn’t go that many times or have that many appointments / investigations it’s not UC, but it gives you some idea.
Might be worth digging through your hospital letters to have a look. If it was celiac I’d have thought they’d test for it and give you a specific diet though, maybe just a less aggressive form of colitis?
I had 3 or 4 colonoscopy or flex sig a year, consultant every 3 months and IBD nurses in between. Blood tests every 4 to 8 weeks (I have other conditions too mind)
That’s not to say if you didn’t go that many times or have that many appointments / investigations it’s not UC, but it gives you some idea.
Might be worth digging through your hospital letters to have a look. If it was celiac I’d have thought they’d test for it and give you a specific diet though, maybe just a less aggressive form of colitis?
You forgot the urgency part of the 20X a day toilet crab walks...
When I flair I barely make it to the loo.. Just standing up from the chair can be enough to forecfully eject.
I can go from not needing to go to the loo to having a shower instead...Within 2-3 secs..But some of you guys have it much worse than me
When I flair I barely make it to the loo.. Just standing up from the chair can be enough to forecfully eject.
I can go from not needing to go to the loo to having a shower instead...Within 2-3 secs..But some of you guys have it much worse than me
I went to my GP a week or so again and asked for beclomethasone dipropionate (clipper), but it was greyed out on the GP's list of medication she could prescribe. Which we concluded was because it's quite expensive and needs an GI specialist to approve. So in the meantime she prescribed Budenofalk rectal foam, which is quite interesting! Like taking an explosive poo in reverse.
I'm in semi remission so just after something to supplement my daily 4.8g Asascol (was on 2.4g until a month ago) to try and really knock it on the head.
Interesting the discussion about coeliac disease and inflammation and colitis. We're all still guessing at this point is my answer. Some people's inflammation has an identifiable root cause, some people's doesn't. And some of us have a bit of inflammation, some of us get it absolutely chronic (as WantoN has so well described). I think we're overdue a breakthrough in understanding all this stuff.
I'm in semi remission so just after something to supplement my daily 4.8g Asascol (was on 2.4g until a month ago) to try and really knock it on the head.
Interesting the discussion about coeliac disease and inflammation and colitis. We're all still guessing at this point is my answer. Some people's inflammation has an identifiable root cause, some people's doesn't. And some of us have a bit of inflammation, some of us get it absolutely chronic (as WantoN has so well described). I think we're overdue a breakthrough in understanding all this stuff.
Soldato
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Sorry to hear that
**** fistulae. They are my worst nightmare. I'm on my third round of antibiotics for one right now, in the hope that I can kill it off before it forms into something nasty. I don't know if it's working, to be honest, but the recovery from the surgery is just too traumatic.That's what I'm thinking. I don't want to make any rash moves, obviously, as if I come off the meds and I awaken the beast - for lack of a better phrase - I might not be able to put Pandora back in her box.
Having said that it makes sense why, over the years, variation in dosage haven't really helped. Especially since I have a love of bread, pasta, pizza and beer... (having said that, the lack of symptoms has made it stupidly easy to give up those things. People I know are constantly surprised and impressed by how I've just "dropped" these foods, and my answer is always the same, if you had the symptoms and could get rid of them relatively easily, you would too).
I'm annoyed with myself, my parents and the NHS to be honest, I wish I'd have trialed things more extensively, but it was always just a given that I had UC and that was that. I remember removing bread from my diet as a kid, to no avail. I ate a lot of pasta, so we all know why that didn't work.
I figure I'll give it a year which coincides nicely with my annual hospital visit and I'll suggest coming off the meds then, with their direction (whatever that is worth).
UC is a spectrum, was always my understanding, but looking back now I can see where there were holes in the symptoms I just wasn't experiencing. Pain wasn't really there at all, although I did have to go to the toilet a lot in the early years (I missed the acedemic Year 7 because I was going around 8-10 times a day).
It's possible I have, like you say, a mild form of UC and an aggressive intolerence to gluten, and a small medication of Pentasa coupled with a GF diet is keeping it all at bay. Almost have to look at myself as a project! But this thread has reiterated how little medication I do actually take. I'll trawl through my original letters tonight (2001, they'll be dated, crazy).
I find it amazing how few people still have any basic understanding of it at all, but I guess the same could be said about any disease. Wish I were smarter so I could put my energies into creating a cure, or alleviating symptoms.
That’s a bummer mate, I find the enemas very good if my inflammation is the last third of the colon, so I hope they help. I did get my prescribed by a consultant, I highly recommend it though. Now I have it on repeat I can order it if needs be, I mostly manage steroid use myself at this point and update consultants in appointments.
Ha! Sorry about that, believe it or not I cut out some of the more graphic descriptions before posting
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