Crohns / ulcerative colitis sufferers

[wingman]

Eliminating too much needlessly is perhaps a concern too. Ideally you do this stuff with an IBD dietitian involved (not a nutritionist) and with some guidance from them.

Doctors/dietitians/nutritionists are all in conflict against themselves, I've spoken to numerous doctors and some are in complete agreement with me in that I should not be taking medication, and others are suggesting that I very much should be taking medication. Go figure.

If you've genuinely tried every type of diet and food group elimination to the point where you've even tried carnivore, and are still receiving symptoms,then I very much believe that, of course, you should be medicating. I just doubt many people have tried those things.

We're continued to be fed the lie that everyone needs to medicate all the time when more and more research is suggesting diet and lifestyle can be all the "medication" you need for many types of autoimmune diseases (I know the science is still unproven if IBD is autoimmune).

After 15+ years of symptoms not one doctor suggested a certain food group might be causing me to have these symptoms, not one. Medicate, medicate, medicate - that's all they care about, with the ten minutes they spend with you each year.

Treat your body like a project IMO and see what works for you. Of course, most people won't, because we're all addicted to various food groups.

 

[dowie]

I am very much in a position to make the claim that my diet has changed my personal medical circumstance.

No you're not. I don't think you're following - you're in the position to say that you're probably not being aggravated by certain foods, you're in the position to say your symptoms are under control now. You're not in a position to therefore conclude that food is the reason for that, for no longer needing medication.

That's a conclusion you simply can't draw from your individual sample of one person... I mean if you could then what are we bothering with clinical trials for?

You said it's just food, implying there's no difference between food A and food B, when there is.

And I've clarified for you that the implication was that huel is just food and I'd suspect neither good nor bad it wasn't intended as a statement about all food.

 

[dowie]

Doctors/dietitians/nutritionists are all in conflict against themselves, I've spoken to numerous doctors and some are in complete agreement with me in that I should not be taking medication, and others are suggesting that I very much should be taking medication. Go figure.

[...]

But that is somewhat subjective judgement calls on what treatment is best for you at some time - it's not really about whether the disease is present or which medications have been shown to work for it etc..

That there can be a place for taking people off medication when they're in remission etc.. isn't very solid evidence that stuff you did re: diet caused that, you'd need a study to confirm that. You might conclude that stuff you did cause the opposite, aggravated stuff etc.. as it was a direct and immediate result of that stuff...

Treat your body like a project IMO and see what works for you. Of course, most people won't, because we're all addicted to various food groups.

"works for you" has limits - again you're a sample of one - this is the sort of fallacy the alternative medicine brigade fall into "it works for me". You might well be able to observe that you eat some things and you get a reaction. You can't necessarily attribute your ability to come off medication to that though - there also exist people who haven't tried various diets as much and also get peaks and toughs with their illness or times when they've plateaued a bit and are under control...

There are perhaps people out there who've tried the power of prayer, converted to a new religion and or become more devout with their current religion - perhaps some of them have been in remission for a bit and conclude that it was the power of prayer. (Maybe the reality is that they're less stressed now and so less prone to flare ups - they're not actively aggravating things but beyond that it's just circumstantial that they're in remission for now).

I mean if you were to have a flare up in future would you then conclude that your diet doesn't work and/or blame your diet for it?

You've got an underlying condition here regardless of your diet.

 

[wingman]

You're not in a position to therefore conclude that food is the reason for that

I had symptoms for 15 years. In my late twenties I drop gluten from diet and within 72 hours my symptoms disappeared.

My medication was for controlling these symptoms, and were not working anywhere near as effectively as I'd like (for the 15 years I was taking them).

 

[dowie]

I had symptoms for 15 years. In my late twenties I drop gluten from diet and within 72 hours my symptoms disappeared.

My medication was for controlling these symptoms, and were not working anywhere near as effectively as I'd like (for the 15 years I was taking them).

So perhaps gluten was aggravating things... Have you been tested for celiac disease etc..?

 

[wingman]

You've got an underlying condition here regardless of your diet.

Try again

Last years colonoscopy revealed I still have UC, that's never going away

 

[dowie]

Try again

Try what again? Please at least try to enter a constructive comment here.

 

[wingman]

So perhaps gluten was aggravating things... Have you been tested for celiac disease etc..?

Many, many times. Every test sample I've had (typically yearly) come back suggesting there's no celiac there. Not even a sniff of intolerance.

I've had myself convinced and beaten myself up over not trying it before, hence my encouragement of other people trying it or different food eliminations.

I wish I could get my adolescent and teenage years back, and if just one person reads this and tries it, to positive results, that's all I care about.

I was very much in the camp of telling people that diet doesn't correct anything, and for some, this may well be the truth.

But this has led to massive amounts of personal research into other problems, such as my family history of diabetes (I don't have it, but my sister and father do). My father has recently followed a semi strict carb reduction diet based off of my advice and has enabled himself to also come off medication, with proven results via blood sugar levels etc. for well over six months. He's also lost weight and felt much better within himself.

It will come across as a hippie statement and I've said it before, on this very page, it's different for everyone and not everyone will be able to come off medication, but I thoroughly believe everyone should at least try it.

 

[wingman]

Try what again? Please at least try to enter a constructive comment here.

I very much already have.

 

[dowie]

I was very much in the camp of telling people that diet doesn't correct anything, and for some, this may well be the truth.

That isn't what I'm saying - diet seemingly can aggravate things, that's a different claim though!

It will come across as a hippie statement and I've said it before, on this very page, it's different for everyone and not everyone will be able to come off medication, but I thoroughly believe everyone should at least try it.

Try what exactly? Try eliminating certain foods - sure, but do it with the assistance of a dietitian. This isn't something radical, plenty of people with Crohns will do that and will have been advised to try that by their IBD team/IBD dietitian!

The issue is the conclusion that diet is the reason for being in remission - you can't conclude that, that's not me denying you're in remission it's just highlighting that you simply don't have the evidence for it.

You may have made sure that you're no longer aggravating your gut with your changes in diet, you may be helping in some way etc.. but you've still got the underlying condition as you acknowledge too and you can't draw the conclusion that diet is the reason for being off medication... you could still get flare ups in future in spite of this change to your diet - would you then conclude the diet doesn't work?

I very much already have.

It was in reference to a post that simply said "try again"... that isn't constructive at all.

 

[wingman]

you could still get flare ups in future in spite of this change to your diet - would you then conclude the diet doesn't work?

I do have bouts of flare ups, if you can call them that as they mean different things to different people, but I'd conclude that I still have the disease and this is par for the course. I'd also conclude that perhaps there was gluten in something I ate by mistake, I avoid the obvious food groups but you can't always be sure. I'm not denying I have an illness, as much as I'd love that, colonoscopies suggest I do and always will.

All I know is that removing gluten from my diet has made my symptoms go from circa 5 urgent movements of diarrhoea daily to one/zero movements daily (almost always non-diarrhoea, almost always non-urgent) for most of the year.

Medication never did that for me.

Perhaps medication never did anything for me, I don't know and it's impossible to really say.

All I'm giving is my truth, and to encourage others to experiment yourself, don't wait for a dietitian to give you the green light to try something, if I had done this I may have never discovered a method for controlling my symptoms.

Genuine question (assuming you have IBD and are not here on behalf of someone you know) have you tried any strict food eliminations for any prolonged period of time?

 

[dowie]

You’re not just giving “your truth” you’re adding to it and drawing conclusion you’re not in a position to make, that’s the point.

It’s one thing to say you’re probably aggravating thing when eating certain foods, it’s another to claim you’re medication free because of diet.

Yes I’m aware of what foods I need to avoid, that’s changed a bit recently following surgery as previously I had stricturing.

 

[wingman]

It’s one thing to say you’re probably aggravating thing when eating certain foods, it’s another to claim you’re medication free because of diet.

Unequivocally I'm medication free because of my diet. It's not up for debate..

I stopped eating a certain thing, my symptoms disappeared, and I was able to come off medication because of it.

 

[dowie]

Unequivocally I'm medication free because of my diet. It's not up for debate..

I stopped eating a certain thing, my symptoms disappeared, and I was able to come off medication because of it.

That is up for debate. Again you don’t seem to get it, I’m not denying your experience - I’m telling you your conclusion is dubious.

Again I’m not doubting that your previous diet could have been aggravating things unnecessarily.

You’re off medication presumable because your condition is mild/you’re in remission. Perhaps a bad/unsuitable diet could otherwise aggravate that but even then you may still get a flare up in spite of your dietary changes. I suspect then you’d want some medication. I’d be very wary about making claims about diets working better than medication etc...

It’s also a dodgy idea in general - that people could sort this if they just ate the right foods - the implication being that perhaps people with bad cases of the disease have bad diets etc.. see the previous poster a while back banging on about raw food vegan diets etc..

To be clear - I’m not denying that diet can help with not aggravating things further. Claims that go beyond that though ought to have some more evidence for them than “it worked for me” or “it’s my truth”.

 

[wingman]

To be clear I've been on medication whilst on a gluten free diet too.

My timeline is as follows:

• 2002: diagnosed with UC and proctitis, constant watery and urgent bowel movements, always on various doses of 500mg pentasa mesalazine daily
• 2002 - Nov 2017: ate a varied diet, including all the good and bad things you might consider
• Nov 2017: heard about gluten free diet, went gluten free, 72 hours later, watery bowel movements symptoms disappeared (I've had bouts of bloating and constipation since, which I'm more than happy to suggest is probably diet and illness related).
• Nov 2017 - June 2018: small, random flares, nothing major, mostly symptom free, continued medication
• July 2018: cut medication cold turkey
• July 2018 - May 2020: small, random flares, nothing major, mostly symptom free, possibly even normal for the "average" non IBD person.

I already suggested the below:

Perhaps medication never did anything for me, I don't know and it's impossible to really say.

But all I know is that I'm able to be medication free due to my diet change.

My main consultant has agreed that I am able to continue to be medication free as my diet is seemingly controlling my symptoms.

Claims that go beyond that though ought to have some more evidence for them than “it worked for me” or “it’s my truth”.

Does any claim one person make need the backing of science data? We're on a PC forum, this isn't the WHO. To be clear if there's anything that I'm suggesting here is to be deemed dangerous then so be it, have a dig, I'm not suggesting gamble your life savings on what I'm suggesting, I'm just giving anecdotal evidence for my situation and it might help someone else.

I’d be very wary about making claims about diets working better than medication etc...

I've said it multiple times that for me it has been, but for others it might not be.

Medication NEVER controlled my symptoms. Diet did.

 

[dowie]

That’s the problem, it’s just anecdotal advice and you don’t understand why you can’t draw the conclusions you’ve drawn.

This is a bit pointless if you get why that is. Again I’m not arguing that changing your diet can be helpful, especiallly if a previous diet was aggravating things - that is a different claim though (and it’s kind of an important difference here).

 

[wingman]

That’s the problem, it’s just anecdotal advice and you don’t understand why you can’t draw the conclusions you’ve drawn.

Of course it's anecdotal advice, what do you think I'm trying to prescribe here? I've not stated that I think everyone can cure their symptoms.

I can draw the conclusion that a change in my diet has improved my symptoms to the point where I can come off the medication that was previously prescribed to me.

Whether or not medication was doing anything previously is debatable (which I have acknowledged twice now). But even so, the various medications I was previously on were there to the try and prevent flares and symptoms, but seldom made much difference, but that was their intention.

The reason for my taking of the drug was to reduce symptoms of Ulcerative Colitis (https://www.webmd.com/drugs/2/drug-3332/pentasa-oral/details) and as above, it was not particularly effective.

A change in diet was.

This is the conclusion I'm drawing from my experience.

To make it clear I'm talking about my own experience here, I am not speaking on behalf of anyone else. I'm simply advocating people consider alternative therapy.

 

[dowie]

You can’t draw the conclusions you drew and you don’t seem to understand why so I’ll leave it there. Again I’m not doubting your experience, if you were just taking pentasa then I’d assume perhaps you only had a mild case anyway.

I’d definitely not recommend alternative therapy. Changing your diet isn’t something radical or out there it’s something any one of us can do in conjunction with our IBD team.

 

[Reezer]

Does anyone get a fever when their IBD flares up? I tend to only experience it at night but sometimes I wake up to rush to the toilet and find I'm running a fever. It's usually gone or at least much lower by morning. 3 days ago I got up at 4am and had a fever of 39.5 which was down to 38.2 by 9am and back to normal a few hours later. In theory it could be something else but it always seems to align with really bad UC flare ups and only lasts 8 hours or so.

I'd ask my "IBD team" which I see people keep mentioning but I'm STIIIILLL waiting for an appointment - I had the diagnosis after a biopsy in Jan 2019 and I have no idea what's going on with the follow up appointment. The consultants secretary was a right bitch about it when I chased (every 2 months for a year) and I had my GP chase it after 6 months and again at 12ish months. I know the local health authority de-funded a load of gastro services including laying off all the dieticians and shutting down all the nutritional support services - the gastro warned me about that (that I'd get no support on diet or vitamin supplementation, etc) on my first appointment before the biopsies.

The surgeon who took the biopsies gave me a prescription for Octasia because he was 90% confident just from camera but it made me muuuch worse. After ~5 days on it I'd flare up worse than ever until I stopped taking it. With my GP I tested the Octasia again in case it was a coincidence but it was even worse the 2nd time - he had to give me prednisone to stop the flare up and I'm convinced it did permanent damage; my baseline and flare ups have been substantially worse since. Again, won't really find anything out until I get an appointment with the gastroenterologist.

 

[Zico]

Yes, had night sweats when either having a flare or just not feeling comfortable. Touch wood I've not had them in a while now and have been pretty comfortable when sleeping.