Hi all,

Just wondering if any Crohn's sufferers have ever been pescribed Azathioprine? been on it for a few weeks now and ever since I upped my dose to 150mg once a day i've been waking up between 3-5pm with severe rib, side and back pain. Tbh i've spent the last week wondering if it was down to my matress or old bed, so spent the last few nights on the floor with no avail. Pain is pretty bad and only seems to go away after 100mg of tramadol, a spliff or 2 and more sleep.

Last night I dropped my dose to 75mg and for the 1st time in a week I had no pain and full nights sleep kinda makes me think it's def the Azathioprine thats causing the pain, can't really find any reports of back side pain as a side effect but muscle and joint pain is listed,

anyway off to see consulantant next week but just wondered if anyone else has had the same problems?

ta

I was taking around 150mg a day 15 odd yrs ago. Think it was about a year or so until I stopped because of fears about a severely lowered immune system (crohns being auto-immune related) and what felt like a dying liver This was causing pain front and back. No tests were done to confirm this, It's just my opinion.

I hated being on it. Didn't seem to do much in the way of relieving Crohns symptoms and I relapsed a couple of times while taking AZ. Not as severely as some of my relapses, it also made me feel like shit.

HTH and your feeling ok.

Should add... I was prescribed AZ for Colitis... I have been undiagnosed and rediagnosed with Crohns/Colitis for 20 odd yrs Each place that I move to gives me another condition . They are so similar, I'm not sure it matters.

e2a- it's Crohns at the moment

Yes! Urgh, it is horrible stuff. Don't want to put you off, but I was dizzy all day, felt like my head was on a roundabout and puked up blood a few times.
It was horrible (for me) and I literally threw it back at my consultant. I may have been the minority and allergic to it, but there is other stuff out there which does the same job and has less side effects.
I think I was on 100mg a day. 'Orrible stuff, but never had any pain, just blood and nausea to the max.

could you elaborate on that at all please scrib?

thank you.....
i asked as i'm just waiting for a diagnosis,got to go back to the hospital to have my picture taken....internally

'Tis bad stuff, from my addled memory anyhoo.

thanks for the replies

tbh i've been feeling pretty well apart from the nightly pains, tho was some sickness after I upped my dose.

I reckon my improvement is mostly down to the steroids (entocort), brilliant stuff that seems to always make me better but you can only take it for so long, not noticed any side effects and have been taking it on and off for 6months.

will be interesting to see what happens when i drop the steroids in the next few weeks, the Azathioprine will have to go also if the side effects continue.

good look with your tests Tightbud tbh took me many visits, a endoposcomy, coloposcomy and a barium following throgh before I got the diagnosis

Are they very different to prednisilone (sp). I was given P long term years ago and I am now trying to distinguish between Crohns related Arthritis and problems brought about by taking steroids. It is nice to know that there is another option, possibly without the awful side effects.

Glad you feel ok.

Keep positive TB mate....Not in the bag yet

no idea see info about Budesonide

i'm sure the consulatant wont let me stay on them long term so I can't be too good for you?

Cheers

thanks for the well wishes SB and cambium
they done blood tests about 6 weeks ago and nothing has shown up
but the symptoms continued ,so already had 1 camera shot,got to go back and be knocked out next time

i've already had stomach ulcers sorted back in 2002
but i have no appetite ......and erm very uncomfortable to say the least

never had an ulcer

what they knocking you out for, the nurese once pointed my appendix out on the tv screen and I only had slight sedation for that

well they never knocked me out tuesday could had done with a bit of wood to bite on
think they want to go further up next time

Hiya SB

Tell the consultant in detail mate and make sure s/he writes it in your notes - the side-effects listed in the BNF are solely derived from patient feedback. Sounds nasty mate, full sympathy to you and TightBud and anyone else with Crohn's I'll know to be wary if they offer me that stuff for MS

A

e2a the consultant'll need to fill out the yellow slip in the back of the BNF to report this as a side-effect

Prednisolone is the dogs bollocks! Got a few bottles in front of me now..shame you can only take it for a few months at a max..
Need to research a way to take away the side effects..hmm

edit - I remember the first timeI had a camera up the hatch. I swear my consultant (now changed) was some sort of homosexual sadist..always scared me, and he went right up to the end of my small intestine then took a sneaky biopsy I never knew about until he told me the next appointment! The worst thing is when you see the shit they suck out and then get inflated...

Never again. Never. I have accepted that I will accept the natural progression of it and live life to the full without insane amounts of medical intervetion.

Fuck Crohns and all who sail in her

hi guys funny I was posting on another thread and in my research on line I came across this ... now I don't know enough to say ye or nay for sure in a medical way ... it does make a very interesting read .... in the world of composting and contaminated land reclamation this stuff is the business
but there is something in what they say ...... and for sure when one of my kids was very sick (8 weeks meningitis ) he was fecked for 2 years after and had the most awful infections that his body could not fight off and was constantly given massive does of antibiotics in the end it got so bad that we decided not to give them to him any more .. as we could not stand the suffering he was going through it was a very conscious choice and we new the risks .... at the time we happen to meet another mother in the hos ... and as you do you chat .....she told us about a diet of bananas and live macro pro biotic yoghurt's .....(my boy would not eat at all) so we tried it .... and with in two days he was eating nothing but the bananas and the yoghurt's..we could not stop him eating them.....he would not eat any thing else for the next six months but these .....by six month later he never had an infection again .................... and all i can say is the probiotic worked for us so reading this just made think a little more about this ............

there you go see what you think .................



Effective Micro Organisms (EM-1) causes remission of Crohn's disease !
Thursday, March 06 2003 - Dossier: General

Below is a message from The Healing Crow, which I thought I'd share with you:
The Healing Crow can be found here: www.healingcrow.com and the newsgroup groups.yahoo.com/groups/HealingCrow

The actual message starts here
February 16th 2003
Hello List!

I have some really good news that I think most of you will find very interesting.

For about a week now, I've been ingesting large amounts of a probiotic brew called Effective Microorganisms (EM). I have Crohn's disease. Results have been rather astonishing! Initially, I went through a rough couple of days with increased D and gas. I reckon this was because of a major shift in intestinal flora balance. Then, things calmed down to a level I've never experienced before. I feel very robust in my abdomen and I've had LOTS of energy and very good BMs (Bowel Movements)!

For social reasons, I had a pizza this Wednesday. Well, historically, that should have resulted in D and increased visits to the toilet for a few days, maybe a week if I was unlucky. So what happened? Nothing. Ok, I had some increase in gas... but that was it! On top of this, I've felt incredibly energetic and clearheaded. It's almost as if I can feel them little guys invading my system and hunting down the bad guys (or whatever it is that is in there that is causing all the problems). And it's only been a week!

Now, I'm still following a mostly raw version of SCD, but since diet alone never really got me into a 100% solid remission, I have continued to look for alternatives. My latest ''finding'' is this wonder called EM. Actually, judging from the past week, it's the most promising thing I've found since I took my quest for health into ''my own hands'' three year ago (I'm 23 years old).

EM comes originally from Japan and is primarily, in the western world, used in organic farming to increase crop yield (!). In Japan, it is also widely used as a health drink. As a nice side effect during the brewing process, the culture of organisms produces vast (VAST!) quantities of antioxidants (this being somewhat more interesting than usual, considering the ''e-vit-treatment for uc'', recently posted to this list).

Oh, did I mention that it is ridiculously cheap? You buy a source-culture called EM-1 from one of the many international resellers (maybe $20 for a litre, from which you then can brew 20 litres in total of the Activated form of EM-1 called AEM (the stuff that you'll actually ingest)). At my current consumption of about 2-3 dl a day (I plan to increase till I reach about 5 dl a day), that one source bottle will last me a long time. So, while not being free, it's pretty close!

So, what makes EM special? Well, for starters, the combination of organisms in EM tend to be very dominant in the sense that they will rather easily dominate the environment into which they are released (read: intestinal tract). This fact, interwoven with the vast quantity of organisms that you'll actually get into your system, makes it a winning concept.

A small warning to some of you here: the precise constitution of EM-1 is somewhat mysterious, and it is probably not something that fundamentalist SCDers would try (i.e. it contains lifeforms that are not recommended by Elaine). For me personally, results is what counts. SCD did not get me the results I wanted (perhaps I did it wrong!), so I went further. I've tried a shipload of different things for my CD: herbal programs, electronic devices (zapper etc.), energy medicine etc. Even though some of these things helped... none of them provided me with long lasting results (at a reasonable price measured in side effects). Also, EM is not recommended for human use by most of the distributors in the western world (even though it is widely used in Japan). Sort of an industrial probiotic :-)

In a way, EM can be viewed as a very powerful kind of Primal Defence, but with a wider set of organisms (symbiosis being a key issue here), and far far more quantity than you'd get from the supplement. I personally was on PD before I started EM, and it did result in some progress over a period of a few months, but nothing compared to what EM has given me in just a week! Looking back seven days, it has been a steady climb towards greater well-being since then. I wonder where all this is going! :-) I can't help but be extremely excited about all this.

I feel that I'm running out of superlatives here! I was introduced to EM by a guy on another e-list I'm a member of ( groups.yahoo.com/groups/live-food , basically a raw foods diet list). He was so amazed by the results he got from ingesting this stuff, that he decided to research it further. It resulted in a very informative website that has all the info you need to know to get started with EM (it is very extensive, but I highly recommend that you read it all, though perhaps not in one sitting):
www.rawpaleodiet.org/em-culture-1a.html

If you need more info, a search on Google for some of these words will get you what you need: ''EM-1'', ''Effective Microorganisms'', ''EMRO'', ''Activated EM'', ''EM Extended''.

The source-culture that you'll need to make your own brew can be purchased all over the world. In the US, the main distributor is called EM Trading. Here are a few links to different distributors around the world + some general EM links:

www.emtrading.com/ (USA)
www.emro.co.jp/english/directory/directoryeurope.html (list of European distributors)
www.agriton.nl/ (Netherlands)
www.emro.dk/ (Danish supplier)
www.embiotech.org/ (general info)'


As far as I know, I'm the first one with IBD to try this. So far, it's looking like a cure... too early to tell though (I usually get overly excited about new health modalities that I try). But, judging from what it has accomplished in only a week, it is looking very very good!

I really hope those of you who're not satisfied with SCD alone will take a long deep look into what EM is really all about, and then hopefully decide to give it a try. It would be very interesting to hear from other IBDers who try this.

Ahhh... now I think I'll just sit back in my big chair and enjoy the nirvana, that has found it's way into my intestines :-)

oh and by the way my son now is like a mountain goat hopping of the walls and very very healthy boy of 13

and this to


Here's an interesting quote on EM:

www.rawpaleodiet.org/em-culture-1a-2.html#Culture
''Interestingly, Dr. Higa has pointed out in several lectures that all three groups of organisms (listed above) have been found throughout the history of the human race in fermented foods, although only the first two groups (lactic acid bacteria and yests) have traditionally been used in Western cultures for food fermentation. It is believed that the apparent ability of some forms of miso and natto (traditinal Japanese fermented soy foods) is in part due to the antioxidant products of fermentation, some believe that may be partially due in particular to the presence and action of phototrophic bacteria. Incidentally, most phototrophic organisms are obligative anaerobes, meaning that they thrive in an anoxygenic environment. Indeed, many species are found at the bottom of the sea or lake beds, or in deep soil. Phototropic bacteria species will not activate or start and reproducing unless they are exposed to either sunlight or food, or both. Further, while lactic acid bacteria and yeasts feed voraciously on molasses, which is the historically-favored culture media for stock EM1 and for Activated EM (aka EM Extension) and other EM applications, phototrophic organisms do not feed well at all on molasses; they vastly prefer animal waste products, other wastes or even toxic wastes or pollutants (although they can apparently survive on the wastes of yeast and lactic acid bacteria -- indeed that is part of their mutual interdependence and synergy.

I have deduced (and this has been confirmed by EMRO) that in EM stock culture and in Activated EM, the phototrophic bacteria survive and grow (if slowly) on the wastes from the other two groups of organisms. So, the phototrophic organisms are (deliberately) not increased as greatly in population count (volume) when EM1 is cultured on molasses, but rather stay somewhat dormant, awaiting a wake-up call by exposure to either a good light source or to a good food (again, their idea of food is waste and toxic waste...) This will often happen only when EM encounters waste products, as when diluted Activated EM comes into contact with animal wastes, soil, toxins, or sunlight (or both!) Further, while the first two families of organisms produce a brew which is very clean-smelling, with a fresh, sweet and sour smell and taste, phototrophic organisms, if present and active in very large quantities, may (not always) produce a bit of a ''low-tide'' sulfur smell or taste. This is due to the fact that many phototrophic bacteria are sulfur-loving and often produce sulfur compounds (such as thiols or mercaptans) as one of their waste products.''

Alright Rip. Interesting read.

I've read so much about dietary cures for IBD over the years of having this shit condition. Micro life, bacteria etc in the intestinal wall plays a big part for sure. I believe there is an infusion treatment called Infliximab that works along those lines (can be quite a harsh experience, so I'm told).

Problem is, I think that everyones Crohns is different. I have tried every diet trick in the book I recon, including Gut wall Micro flora fangelledness. None have worked. The only thing I have found that helps me is (if the waves of nausea allow), to eat a proper balanced healthy diet. No excess and as organic as poss. I am as healthy doing that, as I am taking any of the Pharms they dish out. Along with the healing powers of our favourite herb of course

It's good hear others experiences tho. Nice one

from what I can tell diet plays no part in my crohn's, no sort of food seems to make it worse or cause a flare up. altough I should say I have nowhere near enough will power to stick to some diet that involves eating food I dont like.

Also i'm lucky in that generally dont suffer with bad D or gas problems, my crohn's is more stomach pains, tiredness, loss of appetite and a generally feeling of being ill.

That's good Mine is quite acute. Just had the reversal to go with that

very intreasting about the EM-1 im going to look into that more, already found a supplyer in the uk

much much thanks

just saw this thread and wanted to say if yu'v got crohns i dont envy you, my mum suffers very bad with it and i know what a pain it is.. regarding the tablets iv seen a few different ones leave her 'zombiefied' and pale got me very worried

The nightly pains stopped as soon as I stopped taking the Azathioprine fuck knows what in that stuff to make you feel like that. Told the consultant I wouldnt be taking it anymore and ask him to report the side effects.

Also was told to stop the steroids or risk bone damage, gotta go for scan this week.

Decided to try go med free for a while felt great for a week but just started to get the runs so back on the mesalazine and see if that helps.

not sure what they next long term meds they are gonna throw at me are? any ideas?

It's shit that you feel bad at the mo SB. There are a few other meds that are prescribed....quite a lot out there actually. As far as my experience goes it is dependant on your PCT and how generous they're feeling. I am very limited in the drugs that are available to me locally, my PCT are proper tight arses. Steroids, Aza or surgery I was told. Stuff 'em!!

15 yrs after a prolonged period on steroids, I still suffer the consequences...Sore joints and bones....Gp wants to do the full tests for Ost Arthritis etc....but I'm fed up with it all, so he can wait

Gave up on Pharmaceuticals for Crohns.....they no good. I eat and smoke Cannabis....With high THC ingestion I find relief that no Pharmaceutical can give (except maybe Pethidine )

Good luck mate I hope the Ozzy sort you with something better than the usual shit......Maybe enquire about Infliximab. Heard good things from some

Canada has one of the highest rate of IBD, 0.5% of the population. Having suffered from Crohn's for 22 years and undergone 2 surgeries as well as being a 'host' for various pharmaceuticals has now made me completely aware of what not to do!!! This disease needs 'natural' therapy. Vitamins are essential to replenish the constant wasting that some of us have. Diet needs to be adjusted individually. Exercise is absolutely necessary. It is a constant battle that takes bravery and courage. Positive attitude even when you feel like flushing yourself along with the crap...Apparently I should have been dead by 30 according to my physician, celebrated my 38th year 2 weeks ago!!

xxooMichy