ORIGINAL: richyd

JAMES???

I know your not a doctor mate but what are your thoughts on low fiber diet when its a bad flair up??? Last time i did the low fiber diet and my colitis cleared up. This time i havent fold it just eat healthy foods.

And this time its been nearly 2 weeks out of hop and im still passing blood an its getting worse by the day. So much so ive rang today to see my specialist tomorrow my colon hurts when i walk and my bodys aching all over.

Do you think that diet is good on flair up?? Im also thinking that the pred might not be working as i wasnt off it long before i got this flair up. I suppose its probably like any steroid or drug your body adapts to it?? CHEERS

Im well annoyed now was hoping to get back to work this weekend and start training properly.

The low fibre or low residue diet can be used as a short term treatment for colitis during a flare up to allow the bowel a degree of rest (as fibre is hard work). I feel for you buddy, really I do. I see no harm in trying it. If you want a diet sheet, I have one but I can't email it as it's an old one typed only - but I can get my assistant to photo copy it for you and snail mail it - please email your addy and we'll sort that. It's a very hard diet though and means cutting out fibre almost totally - to the extent of peeling grapes and tomatoes - so beware.

I suggest drinking a whey isolate in water at the mo. Whey is naturally semi-elemental - this means it is naturally pre-digested and already in short chain peptide form - this means it's easy on the digestive system too. I also suggest sugars if possible for the same reasons.

James Collier MuscleTalk Co-Owner + Head Moderator
Nutrition Consultant www.healthyaction.co.uk
Email: james@muscletalk.co.uk

Good stuff windlepoons, sounds like you've been getting your moneysworth out of the NHS!!

If it's anything like my AS, you may get lucky and get remission - it was pretty unexpected for me, but it's been fantastic ever since.

SAVANT SITE - let me know if you need info on our products

Cheers james

I can honestly see me having another stay in hop after tomorrow. Ive got a diet off the hospital dietitian. Its got all white options like bread, rice and no skin on jackets and fruit and only certain veg. Maybe i should give it a crack see if it helps.

One last one sorry to be a pest i just dont know any one else that got it. Did you or do you try and train when your flair up is bad or your recovering?? or do you think its a bad idea??

THANKS for your help

Morning all,

Long time no post. James, I doubt you recall me but I was diagnosed about a year before you and when I heard about your problems we had a bit of a email session discussing the supplement effect (in particular creatine...)

Anyway, 4 years on and a friend points me to this thread so I thought I'd throw me 2 pence worth in, if anyone has any question please feel free to ask as I feel I've a good handle on my condition now and have been fastidious in studying diet and colitis over the past 4 years, plus I try and spend a lot of time locally and online trying to support fellow sufferers.

As with a lot of people my first UC flare did start to slowly ramp up. It started with blood, then alternate days of loose / ok which lasted weeks, if not months then onto a full blown flare which landed me on 35mg/pred. It took me 9 months to get off the pred in which time I lost most of my muscle (previously nearly 15 stone at 5%) which was somewhat demoralising. First reflare was at 3 months, controlled with pred, then 6 months on from that another 6 week course of pred.

At this point I started something called the SCD, or specific carbohydrate diet (google it) and bar a few pred free wobbles I was flare free for a year, in fact I was feeling so good I even got off the 5-ASA (asacol / pentasa etc). A year later I started to flare again but me being a subborn **** and not wanting to lose my muscle again I thought I'd avoid the pred and try and kill the flare off with diet. BIG mistake. By the time I gave in and started oral pred it was way too late and I ended up in hospital for 8 days on IV pred which as you can imagine seriously messes with your body.

This was 13 months ago and I'm happy to report I'm feeling healthier than ever. The SCD diet I follow is naturally high protein and fat so I've managed to build back nearly all my muscle without touching a supplement and feel healthier than ever. I still pretty much bleed a little every few days but the difference is it's attached to well formed stools.

I would certainly suggest everyone have a read of the book "breaking the vicious cycle" if they have colitis. You may not agree with the science behind it and you probably won't follow the diet as it's extremely limiting but reading the book is a reasonable insight into our horribly non-understood conditions.

Richyd, I certainly have tried to train after every flare too soon and regretted it every time (stubborn me...) I would suggest to sticking to some light weights at home unless the chemical balances in your body start to return to normal.

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Thanks for posting box

I really appreciate all the help i can get.

What do you mean iv pred messes your bod up what are the side mate. Ive had to have them administered 2 in ten months now. Also what does normal pred do?? You say you lost loads of muscle does pred eat away at your muscle??

Ive got formed stools to but loads of blood. I thought the blood is suppose to stop?? Or is it a case of you will always bleed?? What about the stomach cramps do you still get them??

Im on my way to see doc now il let you all know what he says. That if they dont keep me in

Probably not what you want to hear right now but prednisolone is slightly muscle wasting. Pred, coupled with a serious flare where you don't absorb much nutrition means muscle can fall off quite quickly. On the positive side I seem to get a natural test kick when I'm down to around 5mg/day and another once I've been off pred for a week which means muscle comes back very quickly! There's a number of other side effects with the drug, your doctor should have briefed you on the serious ones.

The blood stops for some, not for others. I seem to always bleed a small amount and have nearly every day for 4 years. Not ideal but as it's only a small amount of active inflammation I'll get by. The more important thing is the cramps and pain stops as that's usually more serious inflammation. Although I bleed I'm in no discomfort.

Good luck with the gastro, I hope you get better soon.

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Cheers box

Didnt keep me in my specialist isnt there till nxt week so not much they could do said the pred is already high at 40 mg. They where dew to drop the pred today but decided to leave it at 40 mg.

He said looks like there gone have to try alternative medication when my specialist is back.

(please keep in mind any advice I give has worked for me but might not work for you)

I find when flaring I can help reduce symptoms by going low carbohydrate and not worrying about protein and fats. I tend to stick to home made chicken soups with plenty of healthy broth, eggs and various other bits. If I feel I need carb a bit of honey or an avocado omelette seems to help.

Another thing that I find with a lot of people is they drop pred blindly according to the Drs instructions (normally something like 5 days, drop 5mg, 5 days, drop 5mg etc.) The doctors obviously have to put a time limit on for the stupid but I feel people like us who are more at one with our bodys should take control and drop when we feel ready, not when the Drs chart say so. If the X day mark appears and you don't feel any better, wait until symptoms start improving until dropping. Of course, never drop pred too fast or stop taking it without tapering as your body becomes dependant on it. Also it's really worth staying on the current dose for a bit longer than coming down too quickly. Many times I've been in such a rush to get off it I've dropped it when I shouldn't have, all that's happened is instead of spending 7 weeks on a 6 week course I've spent 13 weeks on a 6 week course as I keep on having to jump back up.

40mg is getting close to the limit they like to give you by mouth, after that it's generally IV.

Jonathan

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Yeah m8 i totally understand its only personal opinion and thanks for the replys.

Why did you not train heavy on weights just out matter of interest. Was it cause you just didnt have the strength?? Or thought it would slow the healing process up??

What are your thought also on a hard manual job when in mist of a flair up?? I really need to get back to work do you think could make my condition worse?? Or slow the healing process down.

THANKS

I just felt training my muscles would overwhelm my bodies healing capacity and slow things down as my colon was still in a pretty bad state. Generally I start moderate training when I'm down to 10 or 5mg of pred as by the time I'm that low I'm happy I'm coming out of the flare.

I can't really comment on a manual job. I'm a web developer so don't really move much, your body will be very differently conditioned to mine.

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I appreciate you popping in to give us your rather experienced take on things, b0x. Well, your whole condition sounds much like mine when it started. No blood in stools anymore thanks to mesalazine though. I really do think I should give pred another go given people's opinions on it - I still have 14 days worth left, thing is the doctor only prescribed me a 14 day course initially anyway whereas it looks like I'll need more, especilly given how things are now. Problem is that I won't be seeing him until October so that's all I've got!

Failing that there are other options. I really think I should moan a bit more to get proper treatment though.

I'd like to ask how low carb you took things? Being inactive a lot of the time, my daily carb intake comes from 1 slice bread, some fruit and veg and a couple of small poatoes in a day. And maybe the odd treat.

I do find it really odd that pred reduces muscle - it's a type of steroid after all. I've been doing light weights at home for a bit, hope pred doesn't mess with that as it sghould be preserving what I can. Thankfully I'm a student so no manual labour job. richyd, I feel for you mate - bear in mind how bad colitis is, I think you should be applying for incapacity benefit as well as or instead of sick pay because the reality of this is that you are very unwell, certainly not well enough to work.

Any time groovemeister, I know how hard it was for me to get answers 4 years ago and how isolated you feel so I always try and help where I can.

When I'm unwell I generally drop down to well well under 100g carb/day which usually comes from a bit of honey with an omlette a few times a day or a bit of well cooked vegie in my chicken soup.

Ironically the more masalazine I take the more I bleed, I just take 4 tabs of pentasa at the moment having given up on asacol, I once I tried an asacol foam product and my condition got many times worse very quickly. My dad who has crohns doesn't seem to tolerate 5-ASA either. Runs in the family I guess.

One thing worth talking to your gastro about if you feel your condition is mostly leftside is "predfoam". Has worked wonders for me in the past, however uncomfortable it is to use.

Unfortunately there are many types of steroids and pred is cataboloic. If they gave us an anabolic steroid to get over a flare colitis would officially be the best auto immune condition on the planet ;)

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Cheers groove

I am gone apply for incapacity benefit but i recon they wont give it to me. Box did you or do you know any one thats successfully claimed incapacity with colitis?? Ive been signed on the sick indefinite by my gp.

I recall one UK case many years ago but can't remember the details. Unfortunately most of the people I speak with online are from across the pond so it doesn't really apply. Let us know how you get on.

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Cheers bud. :)

Predfoam is actually the stuff I was given. I didn't now steroids could be catabolic. :/

ORIGINAL: richyd

Cheers groove

I am gone apply for incapacity benefit but i recon they wont give it to me. Box did you or do you know any one thats successfully claimed incapacity with colitis?? Ive been signed on the sick indefinite by my gp.

I'm aware of disability advocates that will help you fill in the forms - it's a very finicky business so I recommend getting their help as the criteria are stringent but you are deserving. Some asthmatics even get it.

Do me a favour though: when it ask you how it affects you, etc. make sure every example you give is the worst you have ever been. Apparently it's what they expect anyway.

Just filled them in with my mother she works for the job center She also told me to put worst case scenarios.

Dont know why i feel like im lying but everything ive wrote does happen to me but not all the time. I put extreme tiredness, bad joints, bad vision, all symptoms just not all the time. Bet they will try and catch me out but ive got nothing to hide i aint lying.

Also does any1 know how much disability is?? I know its gone sound bad to people reading this but there is know one that wants to work more than me. But if its enough to live on while i recover fully then i think il take that option. The kind of work i will be going back to is very hard manual labour on the railway line with could affect me getting better. But if disability is not good money il have no choice soon as i have a loan to pay

I suffer from an obsessive disorder and depression which is how I know about this - and I have been told by advocate bodies to do exactly the same - I do feel like a liar too, but I know the condition of my life is totally ruined by my obsessions and depression (which is why I'm only getting around to doing a degree next year when I'll be 26 - I had to put it on hold this year.,.. AGAIN!) and I do deserve the Disability benefit I receive just as much as a physically disabled person.

But yeah, it makes you feel dishonest when you fill it in but the truth is that some days I am as bad as it says on these forms, like not being able to leave the house or get on even in the house like preparing a meal for myself - or sometimes just getting out of bed!

you have to put in the worst case and have very much a victim mentatlity to get the claim accepted!

I have had experience and you have to play it right up or the claim gets thrown out - if you are incapable of work then you are - and you are enititled to claim.

The way that people on incapacity are villianised is completely out of order in my book - because it is the few that give the many a bad name!

Les Willis
Nutrition Consultant
Healthy Action
"But it ain't about how hard you hit, it is about how hard you can get hit and keep moving forward, how much can you take and keep moving forward. That's how winning is done! "

ORIGINAL: richyd

Cheers james

I can honestly see me having another stay in hop after tomorrow. Ive got a diet off the hospital dietitian. Its got all white options like bread, rice and no skin on jackets and fruit and only certain veg. Maybe i should give it a crack see if it helps.

One last one sorry to be a pest i just dont know any one else that got it. Did you or do you try and train when your flair up is bad or your recovering?? or do you think its a bad idea??

THANKS for your help

I try to train. When I had that bad one it was a problem being out the house for so long, and the strining of weights made me 'touch cloth' However, unlike you guys I felt ok in myself, just had uncontrolable bowels!