Crohns / ulcerative colitis sufferers

WantoN said:
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.
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not at all, I simply clarified my position after you questioned it - it is a pretty important topic to me

WantoN said:
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.
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well that's a nice ad-hominen to chuck in, I'm not being rude I just don't have the same opinion as you, I've laid out pretty clearly why that is too. I'm not going to change my view and suddenly become "open minded" to nonsense just because you think I should accept every possible suggestion regardless of how ridiculous some of them are.

WantoN said:
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.
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that is again a bit dubious, I'd strongly recommend you read the book I suggested and you might well get a better idea of why. The whole "it worked for me" thing has plenty of issues, we do have clinical trials for a reason!

the quick snippet was from an article by a pharmacist who is part of a group of doctors and pharmacists writing articles on the website "science based medicine" - they're trying to correct some of the dubious stuff that gets promoted such as the very thing we're talking about - it is a bit dodgy for you to take exception to that and yet berate me for not being "open minded" towards the alternative medicine suggestion by an random poster

WantoN said:
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.
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That isn't necessarily true, I was just giving it as an example in an attempt to agree with you that dietary changes can help but if you're going to insist on arguing the point then - do you have strictures in your small intestine? That is the reason for a low residue diet sometimes being recommended, if you haven't then what you have said isn't surprising. Here is some NHS advice relating to it:

NHS said:
A strict low fibre diet is not required but indigestible foods containing large amounts or ‘lumps’ of fibre which pass through the intestine unchanged, should be avoided.
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http://www.nnuh.nhs.uk/publication/download/stricture-information-10-0-101/

This is perhaps a good illustration of why someone popping into a thread and saying "try XYZ" can be dodgy - people have different conditions.

WantoN said:
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?
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Maybe... point is you don't really know for sure - you might well have gotten anyway better if you hadn't taken XYZ supplement, especially as you're apparently taking a bunch of different supplements (supposing one or two genuinely had an effect, you don't necessarily know which) - it isn't like there are another bunch of people who have been blinded and are taking a placebo that can be compared against. I mean you probably can infer that some food causes a bit of a reaction (like eating a big green salad and a bowl of all bran when you've got multiple strictures in the small intestine) and I'm not objecting here to someone say adding lots of turmeric because there is some evidence for anti inflammatory effect. I don't really want to conflate dietary stuff with someone recommending something as a medication, that was what I took issue with. (though perhaps it is wroth noting that some dietary supplements like garlic capsules can have an effect on medication too so perhaps worth checking with your doctor if you are experimenting with this stuff)

WantoN said:
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.
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I disagreed with the suggestion and still disagree with the suggestion because such a recommendation is potentially dangerous. As for personal experience, I don't need personal experience with say homeopathy or magic healing crystals in order to dismiss them (though at least with those there is little chance of interactions). That isn't being rude or belittling people, perhaps you're being oversensitive about it. IMO recommending a "medicine" to a random person or people is a silly and irresponsible thing to do.. especially when you're claiming it is a medicine not just some dietary supplement. It potentially breaks the rules of the forum anyway (no medical advice) - I thought I made my reasons pretty clear before but essentially:

Firstly there is no evidence it actually works, secondly if it does work and has a significant effect it could easily have side effects and interactions - some of those interactions could be with the medication the person is already taking - that is dangerous. The person recommending the "alternative" isn't the guys doctor, doesn't have the background of his condition etc..

Here is another article on the product the poster recommended: https://sciencebasedpharmacy.wordpress.com/2009/03/27/oil-of-oregano/

sciencebasedpharmacy said:
Despite its popularity, there is no science to support the use of oil of oregano for any medical condition. It’s not even pseudoscience. Suggesting that this herb is can effectively treat serious medical conditions like diabetes, asthma, and cancer is dangerous quackery. Unless your local drug store also sells groceries, oregano has no place in the science-based pharmacy. Save your oregano for your cooking, and use proven medicines for your illnesses.
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MOOGLEYS said:
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.
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Fingers crossed, friend has colitis so know what it's like figuring out what is going on down there.
 
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Just so we can move on with this. Dowie, my point was your attitude and approach. I didn't like your rudeness.

There's no maybe about the efficacy of the changes in my regimen. I was extremely, extremely ill, and the combination of changes I have made has had a profound effect. I was awaiting complete colon removal, and now I'm not. I have never reached remission in all the years I've been I'll, and now I'm there.

I genuinely appreciate you taking the time to provide references, and after this post I will enjoy reading them, thank you.

I still don't like your attitude, and find you rude. Though your civility has increased significantly since I initially called you out on that, so thanks for that too.

As to this it being strictly true, it absolutely is. The dietary advice I have received has been very limited, and is as I have described. I have no strictures.

Would you care to share the severity your IBD, and the successes you've experienced applying your mindset? I'm sure it would be much more useful for those reading this thread as that is its entire purpose.

ergonomics said:
Anyone with IBD take a bucket load of vitamin C? Do you find it helps your condition?
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I take vitamin C and zinc, although this was also to help with the terrible stretch marks I've gotten from the years of steroid use. I can't say individually if it's had an impact, but I've tolerated it well and as I've said before I've achieved remission for the first time ever through supplementation and specific dietary choices (contrary to those given by the NHS)
 
Had my appointment with the consultant today. I have to take 40mg of prednisone for 10 days to get my proctitis under control so I can use rectal meds....

Must admit I’m a bit nervous about going on pred haven’t been on it for years.
 
MOOGLEYS said:
Had my appointment with the consultant today. I have to take 40mg of prednisone for 10 days to get my proctitis under control so I can use rectal meds....

Must admit I’m a bit nervous about going on pred haven’t been on it for years.
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I understand your reticence, I don't like it at all. If it helps at all I found I had take it for longer than 10 days before I got any of the sucky side effects, I felt great for a couple of weeks.

Proctitis sucks too, feel for you bud.
 
Admiral Huddy said:
It seems you both have strong opinions about this which isn't being perceived as maybe it should be so maybe both you just need to take a steps back before things get too personal and off topic.. Okay?
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Fair enough. I think it is perhaps a perception issue, I've got a strong negative opinion towards the suggestion of alternative medicine for pretty valid reasons, I didn't mean to offend anyone by holding a strong view though.

I would however like to ask if some clarification re: alternative medicine can be made ref this thread. There is obviously a forum wide ban on "medical advice" and my objection in here is to someone suggesting a very dubious "natural" antibiotic in this thread, in my mind that is pretty similar if not worse really.
 
BigB@dJ@y said:
I was diagnosed with UC last October and instantly had a severe flare up which ended with a week in hospital in December. I was pumped full of steroids and antibiotics as well as 4.8g of Mesalazine tablets per day.
The flare up eased but the mesalazine has not managed to control my symptoms which seemed to get worse every couple of weeks, like being on a roller coaster!!
My IBD nurse has suggested a change in meds so I've been on the oral prednisolone steroids for the past week and I start Azathioprine on Monday (still taking the mesalzine too!!).
I'm worried about the possible side effects of the Azathioprine but need to try it.
Any tips for taking the Aza (e.g. is it better to take them at night to avoid nausea)?
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Update from me as things have moved on recently....
currently in hospital since Friday 26th Jan as the the oral steroids (Pred) have not been able to control my inflammation whilst also taking AZA.
I've also developed a fistula between my colon and bladder, which frightened the life out of me!!!
Since Friday i've been on i.v. hydrocortizone (still on Octasa and AZA) and i've had a sigmoid colonoscopy as well as a CT scan. Latest thoughts are I have Crohns and not UC.
I'm waiting on blood tests to see if I can move onto Biologics (Infliximab) with the hope that it may calm things down and close the fistula, either that or surgery.
 
I have just finished 10 days of pred which made no difference at all. My fistula has healed now after surgery so less pain but still going loads especially at night.

Awaiting a call from my IBD nurse to see what the next plan is. Apparently it’s a bad case of proctitis but nothing seems to be calming it down.

Could do with a break from it for a bit tbh....
 
BigB@dJ@y said:
Update from me as things have moved on recently....
currently in hospital since Friday 26th Jan as the the oral steroids (Pred) have not been able to control my inflammation whilst also taking AZA.
I've also developed a fistula between my colon and bladder, which frightened the life out of me!!!
Since Friday i've been on i.v. hydrocortizone (still on Octasa and AZA) and i've had a sigmoid colonoscopy as well as a CT scan. Latest thoughts are I have Crohns and not UC.
I'm waiting on blood tests to see if I can move onto Biologics (Infliximab) with the hope that it may calm things down and close the fistula, either that or surgery.
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Feel for you dude my fistula was a nightmare and tbh still is at times. Hopefully they can get you sorted. My Consultant said steroids are a big no with a fistula but they are all different.
 
Thought I'd bump this thread.

I'm free of steroids for the first time in 4 to 5 years, this is by far best I've been, and it's without anti inflammatory drugs. I've lost 2 stone 2 lbs.

I was on the cusp of life changing and dangerous surgeries, and so far I'm well chuffed. 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 still take quite the cocktail of supplements, and I'm still on vedolizumab, but I feel comparatively great.

For those of you currently suffering, I hope this provides a bit of hope. First time in remission, wooooo!
 
WantoN said:
I'm free of steroids for the first time in 4 to 5 years, this is by far best I've been, and it's without anti inflammatory drugs. I've lost 2 stone 2 lbs.
[...]
I'm still on vedolizumab
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congrats on being in remission, genuinely happy for you :)

just to clarify though isn't vedolizumab an anti-inflammatory drug?
 
dowie said:
congrats on being in remission, genuinely happy for you :)

just to clarify though isn't vedolizumab an anti-inflammatory drug?
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Nope, it's an anti-integrin. It's a method of modulating my immune system, much like anti-tnfs (ie Adalimumab) and Azathioprine (which I'm also on). I've been on Aza for a couple of years, and was on Adalimumab for about a year before switching to Ved. It's nice not having to inject myself! I have an infusion every 8 weeks. I've been on steroids like prednisolone, budesonide and beclametasone; all steroidal anti-inflammatories. Those drug combinations are the most powerful medical interventions available, in fact (because they weren't effective) I had already had my surgical consult for complete removal of my bowel and rectum, before starting my new regimine. It's what kickstarted me actually; I was totally bricking it given additional risk factors due to my other illnesses.

I also suffer from pancreatitis, Non-Alchoholic Steatohepatits and a number of other less serious auto-immune conditions. What's really awesome is that I haven't had any pancreatitis issues and my liver markers have almost returned to normal.

Do you have Chron's or Colitis dowie?
 
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Yup I do, currently taking the Humira (Adalimumab) injections myself, used to be on Aza but didn't tolerate it. Have been on budesonide a few times.
 
dowie said:
Yup I do, currently taking the Humira (Adalimumab) injections myself, used to be on Aza but didn't tolerate it. Have been on budesonide a few times.
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Budesonide worked well for me, but the side effects got pretty awful on the end. Steroid use has weakened by bones quite considerably, I have osteopenia now.

I like the convenience of Humira a lot, it's a good drug, I was gutted it didn't work.

The best steroid for me was Beclametasone, by far. Lowest side effects and effective. Consultant insisted on the 'Clipper' brand.

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.
 
Hi all, update/word of caution.

For anyone having a illeosotomy or colostomy made permanent. (Where they stitch things up at the back end at the same time or after)

I have had the illeostomy for years and got it made permanent last june. Recovery time for me was suggested as 2 months. Upon reading forums a lot of people said longer.

As it stands I'm 10 months after operation. Still not healed. Can't drive as I can't sit down and have a vacuum dressing fitted to somewhere you don't want it!

Obviously this has financial implications which is why I've decided to post so people can be warned. I've been allowed to work from home. So I was only on half and then zero pay for a short time luckily!
 
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