Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
- Start date
Soldato
No worries, I went to my GP and he prescribed me Cholestyramine, the SeHCAT scan apparently doesn't always work, and the method people say to use online is just to take a course of the medication and see how it goes, the only side effect I've had so far is nausea.
Soldato
Jeez that is high. My friend invited me to go to Cuba for 12 days. £465/£295 if unplanned/planned. However anywhere other than north america is £100 so that's more palatable given the personal circumstances.
I was going to say that sounds unplanned... but you say you were admitted i.e. this wasn't just an outpatient's appointment?
I got cover from Tesco for a year (only Europe though), they only asked about admissions in the past year... I ended up getting admitted to hospital (in the UK) a few weeks after taking it out... so I'll probably wait a few weeks after it expires before renewing it and as long as I have no more admissions in that time period I can hopefully answer no again.
I arranged a travel insurance policy for my son (who has Crohn's) last year through www.allcleartravel.co.uk, who specialise in travel insurance for pre-existing medical conditions. It worked out a quite reasonable £156 for an annual 'Gold Plus' policy with global coverage.
Admittedly, he had not had any unplanned surgery in the past 2 years (one of their questions during the quotation process), so for someone who has I'm sure that would bump up the premium
May be worth a look anyway.
Admittedly, he had not had any unplanned surgery in the past 2 years (one of their questions during the quotation process), so for someone who has I'm sure that would bump up the premium
May be worth a look anyway.
Soldato
It was an examination under anesthetic so not just an appointment.
I think I will ring a couple of insurers to see if they have any further guidance - I hope it's standard guidance across the industry.
Look into oil of oregano, strongest natural antibiotics you can get.
Soldato
Could be cannabis oil
NHS advice on your intake outside of "take these medicines, sorry they make you feel awful. Just avoid what you think are triggers and eat pasta, potato and rice. Skins and seeds are bad" is severely lacking.
I've made a much more significant impact on my conditions with careful research and slow introduction of many less studied supplements and food stuffs. Some of my research has been initiated by posts just like the one you've just derided.
I'm not saying we should all jump at the chance to put things into our bodies on the advice of a forum post, but perhaps the post you quoted was an opportunity for open discussion, rather than a chance to deride someone without knowing the facts?
Got an ultrasound on my abdomen coming up. Suspect IBS but the Dr wants to try see what's going on.
Well I very much hope it's IBS rather than IBD, either way I wish the best possible outcome for you mate.
not about deriding "someone" but rather deriding the idea of trying some alternative "antibiotic"... and no, it is a dumb idea, we're not talking about trying something different in a diet but someone suggesting a form of medication without necessarily knowing anything about the condition or the side effects/interactions of the thing being recommended with any other medication the person is taking etc..etc. it is stupid and reckless and deserves to be called out/criticised.
I've been trapped on high doses of steroids for years, they've damaged my bones and my skin, and had serious impacts on my life and relationships.
Thanks to carefully researched supplements (I take over 10 a day now, carefully and slowly triales and introduced) and specific dietary choices, I'm on the lowest dose of steroids I've ever successfully achieved, with none of the usual horrific withdrawal symptoms. And I feel better.
I'm not saying the chap you quoted is right, and I'm not saying that supplements are a replacement for medication.
What I'm saying is that when you've reached a point that the drugs that are meant to be making you better are ruining your life, exploring alternative methods is an understandable route, and there are cases, mine so far included, where they can have serious positive Imagine acts.
If you've proof to dispute his claim, post it, and have a discussion?
All I'm saying here is that an open mind and explorative attitude, especially with such an awful and chronic illness group as IBD, would be far more helpful in this thread than the attitude you've presented so far. I'm not trying to get on your back or have an argument here, but this thread should be more about support, and exploring what is working for other people, rather than shooting down any idea you don't immediately agree with.
it is still dubious, changing your diet can help for sure... in particular cutting down on fibre that's rather far removed from giving advice to take something as a form of medicine - we're not talking about diet or dietary supplements.
WantoN said:
The onus is on the person making the claim... there isn't much evidence for what he's recommended... we have clinical trials for a reason... just trying something (as a treatment) and claiming that "it works for me" is silly, recommending something that doesn't have any evidence that it works is silly... there is a rule on these forums about no medical advice - recommending a natural "antibiotic" potentially even worse - for a start supposing it does work or have some effect as an antibiotic and can be absorbed well by the body well we don't know the side effects or interactions with other meds the other poster is on.
WantoN said:
I'm shooting it down for reasons that ought to be fairly obvious - the person suggesting it has given no evidence for it, it is some dubious "alternative" medicine and it hasn't got much place in a thread about a serious set of diseases.
here is a blog post about it by a pharmacist if you want to be open minded yourself:
Sciencebasedmedicine.org said:
I'd also recommend giving this book a read:
https://www.amazon.co.uk/Bad-Science-Ben-Goldacre/dp/000728487X
I wasn't sure whether to reply, because you seem desperate to have an argument and see this discussion as a 'win' rather than a back and forth of opinions.
I've had private messages from members to ignore you, so apparently you've a reputation for this style of 'look down your nose' discourse. That's not what I'm after, and blocking people because I find them rude isn't my style either.
I appreciate the book recommendation thank you, though the quick snippet from an individual unknown source is little use to anyone. And several of the supplements I'm on have insufficient research to support their efficacy, and they have changed my life.
So, as to using supplements as medicine, that is exactly what I'm doing, and it's working wonders. Though I don't suggest that everyone start throwing them down their necks. Nor do I think it works for everyone.
To give you a little background, I have a rather severe form of pan colitis, an aggressive UC that spans the entire colon and rectum, as I'm sure a lot of other posters here people probably have, perhaps you do too. It is horrific. Along side this I have several other inflammatory diseases such as pancreatitis, and non alcoholic steatohepatitis.
I'm on a lot of drugs including an immunomodulator (azathioprine) and a rather new anti integrin (vedolizumab), other biologics have had little to no effect. Steroids I've been on for many years; First I was juggled back and forth between prednisolone and budesonide, but the side effects were so severe I couldn't tolerate them any more, these days I'm stuck on beclametasone. They've caused many side effects including Osteopenia.
It's funny that you mention this, I've seen NHS dietitians, about 8 different top consultants as well as an abundance of their staff, and a military surgeon, and dietary advice is always the same; aside from triggers, skins and seeds diet makes no difference. And even with the conditions above, there can be no real change.
So where are you getting this idea that changing your diet can help for sure? I'm a little confused, as I find this stance contradictory.
Having slowly trialled many supplements and dietary additions proported for their anti inflammatory effects, at least anecdotally, and IGNORING what you've said regarding fibre, and the NHS stance of no seeds and skins, I am on the lowesr dose of steroids I've ever achieved and am feeling significantly better. It's been up and down, but rather than 40mg a day, I'm on 5 mg 1 in every 3 days, and this dose is still dropping. Am I wrong because you can find an unreferenced quote to dispute it?
What I'm not saying is supplements and alternative remedies are a super cure. I'm saying don't be so quick to dismiss something you've no personal experience with. And it doesn't hurt to be polite either. A forum is about sharing and discussing ideas, not belittling people you don't agree with.
Sorry for taking this so off topic by the way chaps, if anyone is interested in the regime that's so far working for me I'd be happy to PM you.
I've had private messages from members to ignore you, so apparently you've a reputation for this style of 'look down your nose' discourse. That's not what I'm after, and blocking people because I find them rude isn't my style either.
I appreciate the book recommendation thank you, though the quick snippet from an individual unknown source is little use to anyone. And several of the supplements I'm on have insufficient research to support their efficacy, and they have changed my life.
So, as to using supplements as medicine, that is exactly what I'm doing, and it's working wonders. Though I don't suggest that everyone start throwing them down their necks. Nor do I think it works for everyone.
To give you a little background, I have a rather severe form of pan colitis, an aggressive UC that spans the entire colon and rectum, as I'm sure a lot of other posters here people probably have, perhaps you do too. It is horrific. Along side this I have several other inflammatory diseases such as pancreatitis, and non alcoholic steatohepatitis.
I'm on a lot of drugs including an immunomodulator (azathioprine) and a rather new anti integrin (vedolizumab), other biologics have had little to no effect. Steroids I've been on for many years; First I was juggled back and forth between prednisolone and budesonide, but the side effects were so severe I couldn't tolerate them any more, these days I'm stuck on beclametasone. They've caused many side effects including Osteopenia.
It's funny that you mention this, I've seen NHS dietitians, about 8 different top consultants as well as an abundance of their staff, and a military surgeon, and dietary advice is always the same; aside from triggers, skins and seeds diet makes no difference. And even with the conditions above, there can be no real change.
So where are you getting this idea that changing your diet can help for sure? I'm a little confused, as I find this stance contradictory.
Having slowly trialled many supplements and dietary additions proported for their anti inflammatory effects, at least anecdotally, and IGNORING what you've said regarding fibre, and the NHS stance of no seeds and skins, I am on the lowesr dose of steroids I've ever achieved and am feeling significantly better. It's been up and down, but rather than 40mg a day, I'm on 5 mg 1 in every 3 days, and this dose is still dropping. Am I wrong because you can find an unreferenced quote to dispute it?
What I'm not saying is supplements and alternative remedies are a super cure. I'm saying don't be so quick to dismiss something you've no personal experience with. And it doesn't hurt to be polite either. A forum is about sharing and discussing ideas, not belittling people you don't agree with.
Sorry for taking this so off topic by the way chaps, if anyone is interested in the regime that's so far working for me I'd be happy to PM you.
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Soldato
Personally, I find eating fibre rich food makes me feel better at least - a lot less bloated.
I struggle with carb heavy foods - bread, pasta, pizza, so limit those. Fibre rich grains, pulses, fruit, cereals - all good!
I struggle with carb heavy foods - bread, pasta, pizza, so limit those. Fibre rich grains, pulses, fruit, cereals - all good!
At the moment Sudocrem is my best friend.... lol... Seeing my consultant on Wednesday to sort out a plan to get my inflammation under control which should then hopefully help everything else along the way hopefully.
I'm exactly the same! The stuff I'm told to eat makes me feel like crap. If I eat against recommend, e.g. fibre rich foods, I'm much less tired, bloated and I'm on the loo less. I eat no pasta, bread etc. The closest I get is whole meal rye bread, which is meant be the worst and yet I tolerate superbly. Likewise loads of cruciferous veg, salad, peppers, fruits with seeds.
Nice know I'm not the only one whose noticed this.
Ain't that the truth. Germoloids are pretty handy for the ring sting too. I also got a steroidal one when I was abroad and that's a godsend.
What meds are you on at the moment?
I also have some steroid cream and lidocaine but as I have been using them constantly for 3 weeks the nurse said I’m a little over the 1 week max and should have a break...lol
Just oral Asacol 6 x 800mg at the moment. I have Penatsa supps but really struggle to use them and then it burns and irritates my surgery wounds and other bits etc....
Just oral Asacol 6 x 800mg at the moment. I have Penatsa supps but really struggle to use them and then it burns and irritates my surgery wounds and other bits etc....