The Official MT Colitis & Crohns Sufferer's Thread

As it's been ongoing for myself to the extent that I can't even gym it at the moment due to feeling so weak (although I manage some light weights at home), I was wondering if any other sufferers could fill me in on how it affects them:

1)How long does a flare up typically last? With me it's been a gradual build up over 6+ months but I had ploughed on thinking it was IBS before the camera went up my bum to have a look, however the last 6-8 weeks it's been really bad in how it affects me day to day.

2)When you have a flare up, how tired does it make you feel? How unable do you feel to train or even do normal things?

3)Is there anything you find helps you along with it?

I think that's all for now, might think of more. Thanks guys!

Hi mate - sorry you're not so good ATM. I'll answer this as a fellow patient, as opposed to a professional

1) Varies - my big one went on for months, with periods of not so bad where I was 80% and perdiods of a few days when I was 10%

2) That flare up made me a bit more tired. But I'm always knackard anyway due to too much work and lack of sleep so it's hard to tell

3) Yes prednisolone - cleared me up a treat. Loads of side effects though, some good ones! Now I self medicate and a couple of nights with one mesalazine 'pebble' up the Gary Glitter seems to sort me out. One's going up tonight!!

Really feel for you m8 its an aweful illness

Ive just come out of hospital after another 10 day stay. My flare up was quiet bad and had have meds i.v AGAIN!!!!

I went training today m8 after only being out of hop less than a week. And ive got to say i wasnt the smartest thing ive done. I feel shattered now had cold sweats in the gym but was surprised as my strength wasnt bad.

The medication james has mentioned help im currently on quite a strong dose. Dont know bout james but also makes me very hyper sought of like taking efedrine

JAMES??? Your flair up that went on for months how bad was that was it just loose stools and regular??

When you have a flair ul know mate with out these meds i dont think id be able to train. I remember when i had my last flair up i could sleep on 3 efedrine ( i didnt know what was wrong with me at the time )

GROOVEMEISTER what meds have you been put on m8??? How bad is your flair up???

Well I'm constantly on the mesalazine. I got some suppositories now. The specialist thought my headaches mght be due to the oral mesalazine, but I still get them.

I did have prednisolone but no change so specialist told me I should stop. However it's getting worse again now.

When you say how bad is the flare up, this is kinda why I find it hard to say because I don't know what's normal.

I feel tired and like utter sh1t every day. If I go for a half hour walk I'm shattered. I've quit going to the gym but I do have some free weights (about £35 KG total, great!), and a laughably small bench and I've been doing what I can at home. Exercised on Friday but still feel so tired that dunno if I'll do any today. I mean, when you go to the gym you should enjoy it and feel exhilarated by lifting the weights, but whenever I exercise ATM it just feels like a chore, which h it shouldn't do. So I'm not working out properly at all and I feel really guilty for it.

It's really depressing because there's nothing you can actually do to get better, you just have to wait and wait and wait until it decides to just go away and so every day I just go about my business of nothing much, hoping that it'll clear up soon so I can get back on with things. Not that I think it will, mind.

Another question, when you first got it did it build up over a long period of time? It was over about 6 months that I had IBS symptoms and a bit of tiredness that gradually ground on.

My 1st flare up was back bout a year and a half ago but it only lasted 2 weeks. I had been taking ephedrine for cutting and dieting for a long time so just put it down to that and stomach problems.

Then in bout 6 months time it started again i thought i was the same again so i left it for another 3 weeks. Then on about week 4 i went to the docs and he told me i was fine. Whic at this point i was passing blood up to 20 xs a day. Then on week six i was up to bout 25/30 10 0f these being in the night. I went back to doc and demaned i get sent to hospital and was then diagnosed. And was then told if they couldnt slow it down in a day or to they would have to operate as it was/had got to bad.

I normally find that my stools get looser and looser then eventually blood. I know what you mean about tired. At the height of that flair up i was doing a very hard manual labouring job and weights 5 xs a week. My consultant couldnt believe it and now looking back i dont know how i managed it.

I think the tiredness you really just have to live with i know its hard m8 but uve just got to make good a bad situation. I always thought i was me and i was just lazy its nice to know it wasnt.

I know what your saying about the headaches they put me on aziapine or something in hop. I was nearly crying like a girl, i was head butting the wall the works. In the end i called for the doc at 3 am in the morn i couldnt take any more. Ive now been taking of it for a while but i have to go back on it

How bad is your flair up are you passing blood???

Strange how pred didnt work i thought this and hydrocortisone where the strongest you can get.

I have it diagnosed too:
Usually its the tiredness and superlooseness and blood that you guys get - never had any meds for it yet.

So far its only been a month or so long and cleared up on its own - although it virtually nowt most days.

of course any weight lost goes back on immediately when I eat anything!!!!

One thing i couldnt get my head round james/les

Is even though you use the toilet very frequently your body still absorbs the nutrients from the food you eat. Is this correct???

Just seems strange to me as your using toilet so much how can your body have time to absorb it???

Obviously i know fro experience that in a height of a flare up a lot of it wil be blood and not the food consumed.

CHEERS

My knowledge is limited to knowing the function of the colon on this
given the colon is absorbs mostly water and digestion is the function of the small intestine - and colitis is a problem with the colon - then only absorbtion from the colon is affected.
and given the symptom of lots of water with the blood - seems to hold

I would guess that the products of bacteria and flora that operate in the colon is going to be messed up by colitis too - which could cause its own problems in the long term if we dont get those micros (vit K is one I remember).

Thanks guys, I'll reply properly tomorrow as I'm really tired and grumpy (big surprise there), just also want to ask if any of you ever feel surreal, sort of like when you're drunk but without the poor judgement?

Have any of you tried VSL#3?

Silly strength probiotic (450 billion cells per dose) - has good results with UC - http://www.vsl3.com/VSL3/uses-ulcerative-colitis.asp

Pretty sure you can get it shipped over, though landed price may get high..

I recently suffered from a severe case of Campylobacter and at first I thought it was Colitis or IBS. Doctor didn't see me for a while then finally did, sent off a stool sample and came back with Campylobacter. Had 17 days signed off sick from work, not good!

Definately don't want it back! As its a health standard warning I had to be reported to the Health Standards people, still waiting to have my interview or so about it, hope they dont expect me to remember what I was doing over 4 weeks ago..

Doctor told me the bacteria/illness stays in my system for a year which isn't to pleasant. I **** myself (ha literally) everytime i have chicken (which is everyday obviously) as its the main source of it. I have to make sure its cooked 100% so i usually end up over cooking just to make sure :(

I feel for you guys who suffer from Colitis with flair ups that last ages, i'd hate that I was on the brink of insanity after a couple of weeks! I practically lived on the bog, and when I "tried" to eat it was like i had no stomach, in the mouth and straight out 1min later!

Right well, richyds I have never had it that bad. I have had blood in stools and been going several times a day but not much past 10 times. I must say i my doctor had been that lax and said it wasn't an issue then it got to the point that I'd been hospitalised and had to be operated on if meds didn't clear it a bit in 24 hours, I'd have taken it to court.

I must say that my doctors are all useless. Anything that doesn't need a cream for a rash or similar and you're better off researching it yourself, telling the doctor yourself and pressing them into prescribing the right thing which I have done before, to my own good too.

I've also had the GPs misdiagnose my kids and my wife before, although nothing serious. But seriously, what f*cking hope do we have with these morons being responsible for our health?

Anyway, I don't get blood ow I'm on the mesalazine although the pains are getting worse again and I fear it may return. I'm taking all the right stuff so I'm surprised it's getting worse. Specialist took me off the prednisolone as it seemed to make no difference but maybe it did and I didn't realise because it was preventing things?

If you're still absorbing the nutrients then why do you feel so sh1t all the time just from a 20cm stretch of inflamed colon?

I have looked into food intolerance testing but there seems to be no science to back it up, so I'm rather sceptical about it.

Tony - do you know how much that stuff is? I currently take a probiotic which has 16 billion bacteria in per 2 caps (take 2 daily) and cost me £25.

Looks to be about $2 per serving in America, but no idea about over here.

What brand do you take at the minute?? £25 is even more expensive than our high strength ones - they're 30 billion cells a capsule - though you may be getting more in a tub?

What do you mean the pred was preventing things???

Im still worried bout mine ive been let out of hosp but im still passing blood. No where near as regular but still bit worrying.

As regard to the doc i dont see the point hes a clown!!! but more the fool me as im still with him. I think he feels bit guilty as anything i ask for he does with out even questioning it.

Dont think i bother with a food allergy test m8 apparently my specialist is won of best about in wales. I ask him does my diet effect my colitis?? He said i dont know, i then asked does training hard and hard work effect it?? He said i dont know.

He basically said he know how to treat it to a certain extent but not what causes it, why you get.

Just typed a long reply and lost it - my motivation to retype is low now!!! blame the kids for disturbing me mid post!

I'll try to retype tomorrow

Groove - did the probiotic thing imrove things for you - just that I found I got loads worse and then when I stopped using a probiotic drink I love - cleared up no end
and I have noticed if I eat pro-biotic products there is always an effect - which makes mrs les's yoghurts safe thats for sure!!!!

Some Dr's are good some are bad - its a shame yours have failed you - just to let you know I have experience of both - so there are some good uns - have you tried a different practice or making appointments with specific ones to see which are which.

In the practice here in Newcastle the best ones seem to the ones getting there GP experience as part of their training as apposed to the practice partners.
the best one I saw as a GP - that did loads for me - I saw about 6 months after she left in ENT when admitted to hospital.

All the permanent ones get jaded it seems!

ORIGINAL: Tony Barnes

Looks to be about $2 per serving in America, but no idea about over here.

What brand do you take at the minute?? £25 is even more expensive than our high strength ones - they're 30 billion cells a capsule - though you may be getting more in a tub?

That's 60 capsules I buy 2 caps per dose - didn't occur to look on your sit

ORIGINAL: richyd

What do you mean the pred was preventing things???

Preventing things getting worse.

ORIGINAL: James

Just typed a long reply and lost it - my motivation to retype is low now!!! blame the kids for disturbing me mid post!

I'll try to retype tomorrow

Tell me about it. Seems to happen to me a lot recently. Just this morning in fact; if make a long reply, I do so in Word to avoid accidental back-clicking or something and I did this for a long email but apparently the email never got there - should've saved the doc! Look forward to what you have to say.

ORIGINAL: Big Les

Groove - did the probiotic thing imrove things for you - just that I found I got loads worse and then when I stopped using a probiotic drink I love - cleared up no end
and I have noticed if I eat pro-biotic products there is always an effect - which makes mrs les's yoghurts safe thats for sure!!!!

Well, I found the pro-biotic drink made things worse; I put that down to the milk, but even after stopping, things are just as bad wit the dairy free powder caps I have.

Perhaps I should try a couple of days without, didn't think of that - cheers Les.

James if you get time id be really interested in what your reply was. Being a suffer yourself and and dietician id imagine it will be very helpful.

I think you also mentioned before about writing an article on it?? Have you had any more thought on that??

Yeh Ill write the long post again tomorrow (I hope!)

I will write an article - just got alot in the article queue!

ORIGINAL: groovemeister

ORIGINAL: Tony Barnes

Looks to be about $2 per serving in America, but no idea about over here.

What brand do you take at the minute?? £25 is even more expensive than our high strength ones - they're 30 billion cells a capsule - though you may be getting more in a tub?

That's 60 capsules I buy 2 caps per dose - didn't occur to look on your sit

Have a look at the Super 8's mate, 30 caps £18.95, 30 billion cells a cap, 8 strains of probiotic in them. If you google around, you might be able to find them cheaper somewhere else, never looked into it personally.