Crohns / ulcerative colitis sufferers

I was wondering why you said 'yup I do' then I realised I'd framed the question badly. I meant which do you have, I'm guessing colitis now though.

Ah OK I have Crohn's. Sorry I should have realised, I thought you just meant in general as Crohn's is a form of colitis.

Yeah I am a bit wary about steroid use (fortunately it has only been short courses so far) and while the humira seems to be doing something I'm not in remission yet.
 
Ah OK I have Crohn's. Sorry I should have realised, I thought you just meant in general as Crohn's is a form of colitis.

Yeah I am a bit wary about steroid use (fortunately it has only been short courses so far) and while the humira seems to be doing something I'm not in remission yet.

Friend of mine found Infliximab good for his Chron's and Vedolizumab is a good biological too so you still have some options dude.

I know I give steroids a hard time, but for most people they're a wonder drug. It was the years of use that did me. I don't blame you for being wary though.

Hope you hit remission soon.
 
Pred is a wonder drug for me. Gets me back to "normal" within 3-4 days. And a side effect is it clears up my plantar fasciitis within a few days too......
 
Friend of mine found Infliximab good for his Chron's and Vedolizumab is a good biological too so you still have some options dude.

I know I give steroids a hard time, but for most people they're a wonder drug. It was the years of use that did me. I don't blame you for being wary though.

Hope you hit remission soon.

thanks, yeah my courses have been say 4 weeks at 9mg, then at 6mg then at 3mg etc.. had that about three times...

First time I had it the GP who prescribed it (after advice from the IBD team re: a flare up) gave me the wrong drug! This was after they'd noticed the prices and done a bit of tooth sucking re: whether they were going to prescribe it or not. (as if the GP turning around and saying "actually though this is available on the NHS and the IBD team have requested it I'm going to deny it for [reasons]" was a feasible option for them)

I wonder if, after they were being funny about the price they perhaps thought they were being a bit clever and prescribing a cheaper version or something but basically I needed Entocort and I ended up with a prescription for another variant of Budesonide that (though also used for treating forms of IBD) targets a different area... this was then pointed out by the IBD team a bit later. So I had to go back back to the GP to get them to prescribe the correct drug... and of course dispose of the first prescription (which was probably circa £200 or so of medication).
 
Sometimes GPs dealing with serious illness terrify me. And it invariably ends up being more expensive and convoluted anyway!

I'd like to mention Beclametasone again. It's by far the best steroid imo. Budesonide was very effective too, but sent me ****ing mental in the end (was on it for a long time though).

IBD teams are awesome aren't they?
 
My diet regimen is delicious and fulfilling, and I'm even eating nuts, fibrous foods, skins, you name it. I do fancy something unhealthy sometimes, but it's not worth it.

I'd be interested if you could post about your diet regime.
I had my colon removed and J Pouch surgery, currently struggling lately with recurrent pouchitis. What I eat definitely has an effect on my pouchitis and output.
 
I'd be interested if you could post about your diet regime.
I had my colon removed and J Pouch surgery, currently struggling lately with recurrent pouchitis. What I eat definitely has an effect on my pouchitis and output.

It may be quite different as I have (at least so far) avoided surgery.

I was very much like you though, food dramatically affected my symptoms, and the advise from the NHS (pasta, potato etc) actually made me worse. My diet has always been pretty clean, so it wasn't as if I suddenly just started eating healthy.

I'll happily post as much as you want, just so you know I'm not saying it'll work, or that it won't make you worse.

I started very simple and light, because anything with skins, seeds, fibre etc was horrific, as were most vegetables.

So the firstly the miserable bit, things I have completely banned :

- caffeine
- dairy
- alcohol
- processed foods of any sort
- refined sugar
- additives like acidity regulators, preservatives, emulsifiers and sweeteners
- processed meat unless it's organic and from a particular body part (i.e. Organic steak mince)

I eat good quality fish almost every day: salmon, trout, Seabass, mackerel, tuna steak, preferably organic or from a fish monger.

I consume some dairy alternatives and have slowly introduced grass fed organic butter, but I don't have much. I use Plenish Almond or Mylk as a milk alternative. Both are delicious and organic.

The general rules :
- Consume good quality Organic Live Bio yoghurt daily. I think Yeo Valley is excellent. Greek is no good as it needs to have the whey.
- good quality fish for most dinners.
- select spices known for positive impact on health. I.e. Turmeric
- consume tolerated fruit daily. Blueberries and Pineapple are particularly important.
- consume tomatoes daily, in large amounts, preferably cooked with olive oil

One thing to consider in particular are foods belonging to the nightshade family. Some think these are excellent, others really struggle. I now eat a lot of tomato, aubergine, onion etc and I've found it helps a lot, I introduced onions particularly slowly.

My advice is to introduce each meal individually and with care, monitor ingredients which don't work. I started with overnight oats, which at first I heated after soaking to make them easier to tolerate. I started adding things to this on a weekly basis as long as I tolerated it: organic honey, chia seeds, organic cacao powder, organic Chlorella, milled flaxseeds etc

I eat some bread, but I choose either organic or ones that don't include fortified flower. I don't choose any with seeds as I can't guarantee I'll chew them properly. I use Waitrose Pugliese or Cranks Organic.

I am cooking a meal for everyone on Sunday and it's completely 'anti-inflammatory' for me. I'm doing garlic mushrooms in a cream sauce on the pugliese bread toasted, it's actually cooked shiitake mushrooms with organic yoghurt as the base, with some organic mustard, organic lime juiced, and organic pink peppercorn with organic minced garlic. Then I'm oven baking organic salmon with minced garlic, thyme, organic honey, organic soy sauce and some baked organic carrots. We're having a fresh mixed salad with that and tomatoes cooked in balsamic vinegar and olive oil.

It sound fancy but it's super quick to knock up big meals like this which are delicious and filling. I make a tomatoe base for about 6 meals and freeze it for later, then I can just add some fish, chicken or turkey and I've got something delicious I can have with say, wraps or wild rice.

It's worth bearing in mind that diet only took me some of the way, supplements, for me at least, seemed to take me to where I am.

I don't profess to be a guru, I just know what's worked for me. I started by searching for anti inflammatory foods and started building recipes based on what worked for me.

If you want to more just ask, sorry for the long post.
 
Thanks WantoN for that post, really appreciate the time you've put in to writing that. I suppose the keyword is quality ingredients.
I know tomatoes make me really sore and oats have caused issues with blockages no matter how I prepare them. Dairy causes me increased frequency and urgency, anything remotely spicy gives me butt burn.

I struggle to put on weight at the best of times and eliminating food groups makes things harder.

I could honestly live on a tasteless gruel if it didn't cause any issues and fulfilled all my nutritional requirements.
I'll definitely take the information in your post to try and help me build a better diet.
 
Thanks WantoN for that post, really appreciate the time you've put in to writing that. I suppose the keyword is quality ingredients.
I know tomatoes make me really sore and oats have caused issues with blockages no matter how I prepare them. Dairy causes me increased frequency and urgency, anything remotely spicy gives me butt burn.

I struggle to put on weight at the best of times and eliminating food groups makes things harder.

I could honestly live on a tasteless gruel if it didn't cause any issues and fulfilled all my nutritional requirements.
I'll definitely take the information in your post to try and help me build a better diet.

I really feel for you mate. I've gone many days without eating, and flared no matter what I put in my mouth. One day foods would make me feel better and the next cause horrific pain, frequency and bleeding. It's an awful place to be and your relationship with food can be really negative. Hope you get through it.

What started me off was looking for foods that improve healthy gut flora, and foods proported for anti-inflammatory properties. There are plenty I've had to rule out. Perhaps you could start there and trial one thing at a time.

Turmeric, ginger and mint have helped with pain and cramping too. Might want to dodge the ginger if you're getting ring sting (I tried to explain this to a douchebag registrar once and they were oblivious, it's a special pain!).

Hit me up on Trust if you want to email back and forth.
 
I know tomatoes make me really sore and oats have caused issues with blockages no matter how I prepare them. Dairy causes me increased frequency and urgency, anything remotely spicy gives me butt burn.

Do you have strictures? If you're having problems with blockages? It might be worth seeing a dietitian.

Google "low residue diet"

Basically if you're finding oats a problem (and certainly if you've got strictures) then some of the healthy eating advice for you could be counterintuitive. Essentially you cut down on fibre - white bread/rice instead of brown etc... (I don't even eat bread usually tbh...). Salads were a big no no for me too. Could be worth asking your gastro/IBD team about seeing a dietitian.
 
Do you have strictures? If you're having problems with blockages? It might be worth seeing a dietitian.

Google "low residue diet"

Basically if you're finding oats a problem (and certainly if you've got strictures) then some of the healthy eating advice for you could be counterintuitive. Essentially you cut down on fibre - white bread/rice instead of brown etc... (I don't even eat bread usually tbh...). Salads were a big no no for me too. Could be worth asking your gastro/IBD team about seeing a dietitian.

This is exactly what I did for a long time. And when my flares are at their height it's the only thing I can stomach.

That being said, these foods never helped me recover. I was constantly heavily bloated, cramping, in pain and fatigued beyond belief, steroids were the only thing keeping me out of hospital and they were wrecking me. I mentioned in previous posts that I ultimately had to go against NHS advice. I've seen dieticians and to be frank their advice was sparse and vague. Though of course everyone's mileage will vary.

That's not to say I think I have some special cure, or that it will for everyone, or anyone else, I was just desperate.

For the record I don't eat 'healthy', I've always had a clean, balanced diet. Now everything I eat is chosen because of proported anti inflammatory benefits, or pain relief, cramp reduction or to bolster the deficiencies my illnesses create.

Strictures and blockages are a serious thing indeed, surely as Dowie says it needs investigating?
 
I sort of had a low-ish residue diet before I was officially diagnosed, gallstones were discovered by a gastro consultant before I got a Crohn's diagnosis and gall bladder issues usually dictate a low fat diet... as my workplace was near a bunch of sushi places I basically started eating sushi for lunch/dinner (not ideal in terms of getting enough fruit and veg so I got myself a juicer too) . Without knowing it I was inadvertently perhaps making stuff easier for the yet to be diagnosed Crohn's too. (plenty of ginger in there too if you like your anti-inflammatory foods).

I sometimes switched to just having soups etc.. when I've flared up a bit, but the first proper food I revert back to is usually still sushi.
 
I'd like to mention Beclametasone again. It's by far the best steroid imo. Budesonide was very effective too, but sent me ****ing mental in the end (was on it for a long time though).

Damn this takes me back to first getting diagnosed (with UC), I went from pooping 8 times a day to once or twice, and I think clipper was what really helped. I was prescribed clipper and mezavant XL, and my symptoms disappeared so quick, so I can agree it was brilliant. I had GPs try to make me take prednisolone instead - presumably because it's much cheaper, I think clipper is £££. But it really did do the business. Wonder if it might be worth another go, I've been in sort of half remission for about a year and just putting up with it while I continue with asacol (2.4g mesalazine, just upped dose a month ago to 4.8g but doesn't seem to help much).

This article might be posting what a lot of people know already, but a good read nonetheless about how bacteria affect us

http://www.bbc.co.uk/news/health-43674270

I'm convinced they play a massive role in IBD, I quizzed my GI consultant on c-diff and role of gut bacteria about a month ago and he said that in colitis patients unfortunately the latest trials showed no improvement following efforts to promote and improve gut bacteria. But I think it is the answer to a lot of people's problems.

"At the moment every time you're taking one of those data dumps ( :p ) as it were, you're just flushing that information away.

"Part of our vision is, in the not too distant future, where as soon as you flush it'll do some kind of instant read-out and tells you are you going in a good direction or a bad direction.

"That I think is going to be really transformative."
 
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It's funny you mention gut bacteria, I was still getting diagnosed with no definitive answer. Around November I took a fall and ended up with a nasty infection in my leg that required 3 different courses of anti biotics to sort. The 3rd course was very strong with a ton of nasty side effects including the most painful burning every time I went to the toilet it was awful, apparently this was because this stuff had killed off all bacteria in my gut.

Well while not perfect and still having to avoid certain things I'm no longer going the loo upwards of 8 times a day and don't have as many issues.
 
It's funny you mention gut bacteria, I was still getting diagnosed with no definitive answer. Around November I took a fall and ended up with a nasty infection in my leg that required 3 different courses of anti biotics to sort. The 3rd course was very strong with a ton of nasty side effects including the most painful burning every time I went to the toilet it was awful, apparently this was because this stuff had killed off all bacteria in my gut.

Well while not perfect and still having to avoid certain things I'm no longer going the loo upwards of 8 times a day and don't have as many issues.


Sounds like classic C-diff in my anything but expert view. Did you take any medication to improve?

Link from Selekt0r said:
In a dramatic case study from 2015, a woman got new-onset obesity after receiving FMT from an obese donor – her daughter.

Wow very interesting. Good article too.
 
Touch wood, my j-pouch has been perfect for the past 24 months. Had it around 10 years now, it was fine for the first 2, then got really bad around the 4-8 years mark. It would flare up monthly for a week or two at a time.

My surgeon then 'widened' the join as he said my problems stemmed from it beginning to heal up/close over. Been living pretty care free for the past 24 months.

I feel for everyone in this thread, these illnesses are a horrific burden, they just sap the life out of you :(
 
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