Ulcerative colitis and diet

mc23

I was diagnosed with ulcerative colitis in June of last year. My gastroenterologist perscribed asacolon(3 800mg tabs a day) and made no mention of any diet. So I continued eating and drinking as normal, which was a heathy diet. In December I had a flare up and had to take a course of storiods and this is when I realised that there must be more to this condition than just taking the meds.
A few weeks ago I took a trip to a homeopathic clinic where I was recommended a diet.The basics of the diet are no wheat, sugar, chocolate, cows milk, pasta, citrus fruits, banannas, honey, beer and wine. I can eat all meats, veg, eggs, rice, tropical fruits, spelt pasta and bread. At the moment the diet is strict and maybe in time some of the banned foods will be left back......hopefully the chocolate.

Only time will tell if the diet will decreases the amount of flare ups in the future. I feel confident that it will help as most of what the homeopathic doctor was saying added up.

I would be interested in hearing what other peoples opinions are about diet and UC.

Fajitas!

I was put on a very low fibre diet for the first few months after my diagnosis. I slowly went back on foods. Helped me figure what works and what dosn't aswell.

snorlax

you probably want to speak to a dietician before starting any diet.

eve

I was diagnosed with Ulcerative Colitis when I was 20 but 5 years down the road I seem to be the exception rather than the rule when it comes to this condition.

After being admitted to hospital I was told to cut down on fibrous foods. Pretty much mean little or no fruit, veg, brown bread, etc for a while. I was also told to avoid spicy foods and eat 'plain' food. Then slowly I started to re-introduce these to my diet. I added a little at a time and gave it a few days to see if my body could process it.

My initial presentation had the doctors confused as it came on very quickly and very badly with no respite. However within 2 years I had returned to eating any food I wanted without (consistent) reoccurance of my symptoms. In the last 3 years I have had very few lapses but all of these have lasted less than a day and then settled down again.

From what I have read I think that this has not been most people's experience. But be patient with it. Learn what you're body can and can't handle and take it slowly.

LegacyUser

mc23 wrote: »

I was diagnosed with ulcerative colitis in June of last year. My gastroenterologist perscribed asacolon(3 800mg tabs a day) and made no mention of any diet. So I continued eating and drinking as normal, which was a heathy diet. In December I had a flare up and had to take a course of storiods and this is when I realised that there must be more to this condition than just taking the meds.
A few weeks ago I took a trip to a homeopathic clinic where I was recommended a diet.The basics of the diet are no wheat, sugar, chocolate, cows milk, pasta, citrus fruits, banannas, honey, beer and wine. I can eat all meats, veg, eggs, rice, tropical fruits, spelt pasta and bread. At the moment the diet is strict and maybe in time some of the banned foods will be left back......hopefully the chocolate.

Only time will tell if the diet will decreases the amount of flare ups in the future. I feel confident that it will help as most of what the homeopathic doctor was saying added up.

I would be interested in hearing what other peoples opinions are about diet and UC.

Hi there,

I'm the same, no diet recommended for me.. Asked my consultant's secretary for refferal to a dietitian "in the know", and all I received was a booklet on UC stating I didn't need to see a dietitian..

Diet is an important factor in maintaining a healthy gut in any normal person, so one would think it would be even more important for someone with Ulcerative colitis trying to maintain remission.. I'm only out of hospital a few months, came extremely close to losing my colon, and I'm quite sure it was a spicy kebab that put me there..

I wouldn't be a big believer in homeopathic therapy, but would suggest that you maybe make an appointment with a qualified dietitian.. High fiber seems to be the main concern during remission, but also different foods seem to irritate people differently and a dietitian could help you figure that out.(Maybe using a food diary or something like that)

No Sugar? I don't understand that one

Milk? Think this recommendation only applies if you're someway lactose intolerant (I Drink lots! Especially when on steroids, they can be a significant drain on calcium levels, risking osteoporosis and the like) dietitian might be able to figure that out..

Pasta? I think it's not recommended because of it's low fibre content.. But don't see a problem in having the odd bowl once you get the fibre in some other way

Citrus fruits, Banannas? That sounds a bit crazy! Lots of fibre, vitamins and minerals..

Honey? Again, no idea where that's coming from..

Beer & Wine? Would agree with that, especially having a rake of pints.. Personally I have the odd beer, and glass of wine..

And drink lots and lots of water while on Asacolon, you risk getting kidneys stones otherwise, I do believe.. Tis good for the gut too, keeps things moving.

My advice is go see a dietitian..

During a flare up low fibre / high nutrition seems to be the way to go (minimise the amount of stuff getting to the colon)..

dloob

I was also diagnosed around June last year, had two major flare ups in October and November.
Lots of fun with IV steroids and a nasal feeding tube on the second occasion followed by a good while on oral steroids.

I'm not sure how useful the diets really are. I can understand avoiding spicey food and things that disagree with you, but some diets on the internet seem to have you eating hardly anything!

I've been off the steroids for a while now and on 2g of pentasa a day.
I've been on pretty much my regular diet for the last 2 or 3 months, I was never a big eater of spicey food or a big drinker anyway.
Well no problems so far lets hope it stays that way.

rubysue

Hi guys, not sure how you are getting on now with your colitis? But my husband's colitis returned 3 years ago after being in remission since his teens. It flared up again after he gave up cigarettes. He started on the SCD diet almost one year ago after a few tough years on steroids and other meds. None of his doctors ever suggested this, but it's worked really well for him and has been completely med free now for one month. It was a big change for him (and me when cooking), no spuds, no guinness, no sugar but it's gotten much easier. We've actually started to collect all the learnings of the last year on a site.

lynda67

Hi there, I was diagnosed in May of 2008 after being treated for internal piles for a while. I was admitted to hospital in May and by that time I was very ill. Two blood transfusions and fasting for 11 days. Tood sick to eat anyway. I was put on steroids and Asacolon 4800mg per day. I was let home after two weeks but was readmitted three days later worse than when I first went in. Another two weeks in the hospital before bleeding stopped. I tapered the steroids for 9 weeks and did really well until March of this year. I tried to go down the non steroid route as I'm also bipolar - a condition that was triggered by prolonged use of the steroids initially. I'm on meds for that and doing really well. However, at the beginning september I went to my gp and asked him to manage it as the bleeding was not responding to the predfoam or the suflack. I've been on 50mg steroids since and started tapering finally on Monday just gone. (I hate the side effects:eek:) I quit smoking too three and a half years ago. 70% of people with UC or the potential for UC who quit smoking are likely to begin a new flare or trigger UC. Also it's the only disease that is helped by the person smoking..that is not to say we should all run out and buy 20. Smoking causes a million other issues so its' not worth going there.
I was assigned a dietitian and she's been great.

My diet is low fibre. No raw veg or fruit with skins on. I eat pears (skinless) and some berries. I miss apples and oranges and grapes oh and lettuce and tomato...and brown bread. I haven't had brown bread is so long. Basically as low fibre as possible at the minute. I did taste an apples two days ago and it was delicious!

To the poster who went to the homeopath. I'm not saying don't go down that road but do some research first. The diet doesn't fit in with UC and so you might be doing more damage than good.

I do have a question though. Over the last 8 months I had been feeling awful. Do any of you UC sufferers feel flu like, feel sick, nauseaus, headache and too sick to get out of bed at times...generally just crap? It was happening to me on a regular basis and I was beginning to think it was just me.

I'm not a complainer so I find that probably I'm not taking enough care and get on with it. it's been a tough year and I don't want this to happen again.

Long winded reply apologies...:)

cupple

Just wanted to know what people experiences are with steroids. I havent been fully diagnosed yet as to whether i have uc or crohns disease but next scope in jan 10 gastro hopes to confirm eitherway. i have symptoms of IBD since july 08 and have been on asacolon. Because i have constant bleeding since this july gastro wants to put me on steroids, in fact he did suggest it before but i wanted to battle it out cause comparing to other people i dont seem as bad as i dont experience pain just some bouts of increased bowel movements and piles and gurgling on the left side. Im just wondering what the effects of steroids are and how long are you put on them?Is everyone different . Im hoping to go to Australia in February 10 wiht my boyfriend for a long term holiday as i lost my job and am wondering what i should prepare myself for ??

lynda67

Hi cupple,

I have UC and have been in a flare now since end Feb beginning of March. Like you I have constant bleeding. I finally gave in to the steroids when it was obvious that I couldn't do anything else. I've been on them since September 3rd and am now tapering. I'm presently on 30 mg and have another 7 weeks till I'm finshed.

The side effects - firstly if you are a vain person...the physical side effects aren't pretty. At this point my face is rather round and my two extra chins get in the way. I'm bloated and look like I've gained lots of weight but my jeans still fit me. The largeness is from my abdomen upwards. My neck is thick (bit like meself ) and it actually gets in the way. BUT it's taking care of the colitis. It's just one of those things that has to be done. In the beginning I was almost apologising for my appearance and told everyone I was on steroids. Now if they can't figure it out themselves well feck it. I've resigned to being this way until...well until I'm not.

The other side effects for me included a burst of energy, sleeplessness, sweating, an increased want for food, not that i was hungry just had a yen for something all the time. That however went back to normal I suppose after about 8 weeks. No want for food so much anymore. I take calsachew for my bones as prolonged use of steroids leads to bone issues like oesteoporosus.

While all these side effects sound wonderfully inviting, the prospect of ending up in hospital again appeals to me less. And of course they'll treat me with steroids so for me it's avoiding the inevitable.

You say you've not be diagnosed yet as to whether it's uc or chrons. Have you tried to diet control it? Chrons can be diet controlled where as UC can not, but there are trigger foods that can upset the equilibrium if the UC is behaving itself.

Stress is also an issue for me which if I'm not on top of it will trigger the UC and I can find myself very sick for a couple of days.

If I've missed anything I'll add it but I think I've covered my experience. But it would be best to sort the issue before you leave, know what you're dealing with so that you are prepared to cope when you move.

Learning to live with it is the key. Not fighting it. Treatment is necessary and I steroids are very much a part of it unless they docs come up with a miracle cure. Next time I flare I'll be straight to the doctor for, hopefully, a much shorter stint on the steroids. Have them and be done with it HTH
Lynda

cupple

lynda67 wrote: »

Hi cupple,

I have UC and have been in a flare now since end Feb beginning of March. Like you I have constant bleeding. I finally gave in to the steroids when it was obvious that I couldn't do anything else. I've been on them since September 3rd and am now tapering. I'm presently on 30 mg and have another 7 weeks till I'm finshed.

The side effects - firstly if you are a vain person...the physical side effects aren't pretty. At this point my face is rather round and my two extra chins get in the way. I'm bloated and look like I've gained lots of weight but my jeans still fit me. The largeness is from my abdomen upwards. My neck is thick (bit like meself ) and it actually gets in the way. BUT it's taking care of the colitis. It's just one of those things that has to be done. In the beginning I was almost apologising for my appearance and told everyone I was on steroids. Now if they can't figure it out themselves well feck it. I've resigned to being this way until...well until I'm not.

The other side effects for me included a burst of energy, sleeplessness, sweating, an increased want for food, not that i was hungry just had a yen for something all the time. That however went back to normal I suppose after about 8 weeks. No want for food so much anymore. I take calsachew for my bones as prolonged use of steroids leads to bone issues like oesteoporosus.

While all these side effects sound wonderfully inviting, the prospect of ending up in hospital again appeals to me less. And of course they'll treat me with steroids so for me it's avoiding the inevitable.

You say you've not be diagnosed yet as to whether it's uc or chrons. Have you tried to diet control it? Chrons can be diet controlled where as UC can not, but there are trigger foods that can upset the equilibrium if the UC is behaving itself.

Stress is also an issue for me which if I'm not on top of it will trigger the UC and I can find myself very sick for a couple of days.

If I've missed anything I'll add it but I think I've covered my experience. But it would be best to sort the issue before you leave, know what you're dealing with so that you are prepared to cope when you move.

Learning to live with it is the key. Not fighting it. Treatment is necessary and I steroids are very much a part of it unless they docs come up with a miracle cure. Next time I flare I'll be straight to the doctor for, hopefully, a much shorter stint on the steroids. Have them and be done with it HTH
Lynda

Thanks Lynda so much. Yes im like you and didnt want to take them cause of vanity.. so silly i know. But had agreed with gastro to go on them after scope in January 10..If they get me in good order for a while that will be the main thing and s ure not many will know me in Australia so they will think i look that way!!.. The asacolon just doesnt seem to hit the mark anymore so im limited but your right i do think its stress related. This was confirmed after watching a horror ...ie got stressed and bled even more.

Yes went to gastro last week then he said it might be crohns that the pathology tests didnt come back conclusive when i had a scope in july 08 but that my colon was severly inflamed. He did say at this time it was most likely UC.. He wanted my to try steroids then too but i said no and was fine on and off for nearly a year..

thanks so much for your help it was great to have insight to what its like !!

geor

Hi Cupple,

Glad to hear you're going on your trip to OZ - you'll have ball. I try not to let this disease control my life wherever possible, although sometimes it can be hard. Australia has better facilities and more public toilets etc than here so I found it easier if anything! Plus they have amazing food , fresh veg, amazing seafood and meats. You'll probably feel better than ever after the trip. There health care and doctors are leagues ahead of here so if you do have a problem, you'll be in good hands.

Steroids are fine for short-term use, generally try to keep it under a year. The important thing is to protect your bowel as much as possible, so in the short term steroids can be a godsend, and very handy while your travelling as you should not have much symtoms iof they are working for you. The only problem is you will prob put on a little weight and they can be difficult to get off...you have to taper off them gradually...

I would take whatever meds to get yourself in as good a shape as possible, <MOD EDIT>

lynda67

Wish I was going ot Oz now...it's sound great:D

Will check out the SCD diet myself. although I find it hard to get into diet mode these days. Pre UC I was fit and healthy, slim, walked a lot, ate well, watched what I ate which included lots of fruits and vegetables. They have been seriously reduced in the last two years and I absolutely crave them. I give in every now and again, like the other night when ate two of the THE most delicious oranges....next morning...I suffered. they were almost worth it:D

It does seem that I have quite a few trigger foods. But that might just be when the disease is active. But seeing as it's been more active than not it's hard to establish any ground rules re my own UC.

geor

I find oranges a problem too, i generally avoid them.....

Banana's are genrally tolerated well by most UC/Crohn's sufferer's and actually slow the digestive system. Cooked veg, especially greens I find very beneficial, broccolli, sugar snaps, peas, also carrots. I stay away from anything starchy like potatoes as complex carbs are more difficult to digest.

I find veg juice very good, Kelkin do a good one with no additives. You can get it in supervalu. Also i tend to water down my apple juice (copella not from concentrate) with fizzy water.

Goats milk yoghurt I find great:D Gelnisk do a range, I stick to the plain one, ya can get it in Dunnes....

Anyhow, thats what works for me so far, and i have been off Meds a year now... YAY!!

cupple

geor wrote: »

Hi Cupple,

Glad to hear you're going on your trip to OZ - you'll have ball. I try not to let this disease control my life wherever possible, although sometimes it can be hard. Australia has better facilities and more public toilets etc than here so I found it easier if anything! Plus they have amazing food , fresh veg, amazing seafood and meats. You'll probably feel better than ever after the trip. There health care and doctors are leagues ahead of here so if you do have a problem, you'll be in good hands.

Steroids are fine for short-term use, generally try to keep it under a year. The important thing is to protect your bowel as much as possible, so in the short term steroids can be a godsend, and very handy while your travelling as you should not have much symtoms iof they are working for you. The only problem is you will prob put on a little weight and they can be difficult to get off...you have to taper off them gradually...

I would take whatever meds to get yourself in as good a shape as possible, then

thanks so much for that.. Knowing that the weather is good , i hope to get back running etc , that has always made me feel good.. but yes now that i know it changes your apperance somewhat im prepapred better .. thanks for the good advice!!

metrovelvet

When I had UC, thank god I dont anymore, I went on a strict low acid diet. I reaad up alot on alkaline foods and keeping the gut green. So, I dropped milk, cheese, sugar [particularly fructose - when I had UC I also had anyphylatic reactions to fruit and fructose], stuck to fish, and took chlorophyll tablets and found the PH diet very helpful.

lynda67

I've had a little look around and not sure whether I'm hijacking a thread or not so if I am apologies....
Am a bit fed up at the moment, having tapered the steroids to 30mg from 50mg over four weeks the bleeding has started again. During the last four weeks there has been some slight bleeding but it would stop and things would settle. this time it's not stopping and clots are present. I have a gp appointment tomorrow morning to discuss things. I'm fed up because the chances are I'll have to increase the steroids again. I'm being as good as I can be food wise and I feel good in myself in that I'm not feeling sick or overly tired. I'm managing life and doing what I have to do without a struggle. Walking is the only issue for me really.
I'm just having a moan. Yesterday I was so uncomfortable with bloating..everything was in the way, my neck, my chins...it was an awful feeling, today is not so bad in that respect, something to be thankful for I suppose.

I make a conscious effort to not let this disease control my life but there are days that I think I've just had enough of it. Between GP appointments, taking tablets, watching what I eat, every time I go to the loo, it's just there regardless of my thinking towards it all.

words of wisdom and encouragement welcome...

shawnee

Have had uc for a number of years. Last two years I have had two bad flare ups. Again diet , is hit and miss, my gastro person tells me that there is no actual diet other than easy on the fibre when I have a flare up. I think my body tells me when I have done wrong. The tierdness is what gets to me and I find late nights are a no no. As for steroids , I have not put on weight and am not aware of any changes in appearance. I dislike taking them and am now finishing a course and hope to stay off them for a while. Uc is a lot about self management and one needs to be a bit selfish to control it. I hav had remissions for up to two years. My eyes seem to give me some trouble recently and I believe this may be linked, I find this aspect difficult.
I am generally very positive which helps and when I see the amount of people with Cancer , heart disease diabetis etc, I think given the choice I can manage my own better !

lynda67

Hey Shawnee,

Yep diet is hit and miss I agree. I do have foods that I know aren't good to eat and like you said your body tells you when you shouldn't have eaten something.
Funny you should say about your eyes. My eyesight has been terrible the past while. It's like over night I went from needing glasses only to read and craft and now I need them all the time. i thought maybe it was coincidental and was planning on metioning it to the gp and going to have them checked.
In regards to remission - I got almost a year out of July to March.

shawnee

Hi,

Still on the subject of colitis. There is still not a lot known about this disease and I think a forum like this is a wonderful help. Doctors and gastro people seem to differ on some things. However for many it is the usual pentasa and steroids. I suppose if one can get off the steroids the pentasa is not a problem. The disease hasn´t really stopped me doing much. I do get a bit concious of it particularily when bleeding and if this can be controlled , I can live with the rest. Presently I am away in the sun and this also helps, coming back soon to the Christmas rush. However I have missed a good bit of it Hang in there Linda, looking too closely at th mirror is not a good idea , others probably do not notice any change. My hobbies seem to take me away from thinking about it and this I believe is very important.

lynda67

Thanks Shawnee, I'm over my moan:D. Onwards and upwards as they say. On the subject of eyes, I spoke to my gp yesterday about my eyesight and he sent me to have my eyes checked after the appointment. There are two things that cause quick onset of poor eyesight
1. Steroids can cause a rise in blood sugars which can and does effect the sight. Have your glucose levels checked.
2. Prolonged use of steroids can cause glaucoma (spelling) An optician will check the pressure in your eye.

My eyes are fine thankfully and he's suggested that I'm tired (he's right) and so my eyes are more strained and I should wear my glasses more. They are just for reading and crafting. Wearing them has helped even in the short time since yesterday. perhaps it would be a good idea to mention this to your doctor or go straight to your optician. Better to check to be sure.

I had a gp visit yesterday to discuss the steroid situation and the fact that the bleeding has started again. He wasn't happy to continue to manage it and felt I needed to see my consultant. I was lucky enough to get an appointment this morning due to a cancellation - happy days. I've to have a scope next Wednesay (yep the day before Christmas eve:rolleyes:) and he's started me on Immuran. I know nothing about it other than it has more side effects than Asacolon and I'm at a higher risk of infection due to it's effects on the white cell count. I'll take this along side the Asacolon. I'm thinking that while it's very effective, apparently it has side effects that are greater than Asacolon in that the drug increases the risk of infection due to it's effects on the white cell count. It reduces them and it needs to be monitored.

However, hopefully this will put the uc into remission. fingers crossed.

It's good to be able to talk about this with people who understand that there are good days and bad days:D.

shawnee

Hi Lynda ,
Yes it is indeed a great help to share experiences. My own belief is that only those that have the illness fully understand it. That is interesting what you say about the eyes and steroids , I am down to 10 mg of steroids at moment but have been on them for past few months, so perhaps that explains the eyesight stuff. I read somewhere that many of the mucous membranes can be affected by the illness. I always find it reassuring when I talk to someone who understands the ailment, be it my gp or my gastro. It can be quite isolating because to someone who doesn´t understand one can seem quite well but can be feeling terrible.
I hope your scope goes well and wil put you in a positive frame of mind for Christmas. I am interested in how the Immuran goes as when I was last in hosp, I was tested for suitabilit for this drug but got no results. As you say onwards and upwards ! Sun is shining here in Las Palmas and that definitely helps what ever you have, back home on Thurs and hopefully the weeks break will carry me through to New Year when I always feel that the days are getting longer and there are new goals to achieve. !!

lynda67

Could do with some Las Palmas sunshine today but alas we have rain, rain and oh yes more rain. Enjoy it while you have it.:D

eman66

geor wrote: »

I stay away from anything starchy like potatoes as complex carbs are more difficult to digest.

Same for me, avoidance/reduction of complex carbohydrates has a positive effect on my condition.

Kevster

Hey everyone,

Those steroids will probably keep you awake at nitght too, and may increase weight. That's what happened to me anyway, but i was put on 40mg of them for a while after I was diagnosed a few years ago. The weight gain is only due to water retention though, and is lost once you stop taking the steroids.

Right now, I've been going through flare-up after flare-up for the past 2 years. The fact that Im bulimic doesn't help one bit. There's no day where I dont have discomfort or pain.



Take care and happy christmas,
Kevin

lynda67

Hope everyone had a good Christmas and that Santa was good.

I had my colonoscopy on Wednesday last, the results showed that since May of this year when I had my last scope the colitis hadn't got any better but hadn't got any worse either. The past four months on steroids kept it at bay. It does feel that it was a waste of time. The consultant has increased the Imuran to 100mg per day and kept me on the Asacolon. I'm tapering on the steroids also so another four weeks I'll be done. I spent Christmas eve in between the bed and the bathroom. I had such a bad attack I think any vet would have been willing to put me to sleep.

would anyone be willing to share your experience during an attack. My body just caves in, I'm weak, feel like I've been hit by a bus. I'm breathless too. It generally makes me throw up quite a bit. I feel like i have the flu and have chills but have no temperature. It's just awful. I can't function or take care of the kids. I mean Christmas eve and so much to do and I didn't care. I couldn't have done anything if my life depended on it. I find these days very unpredictable and now I come to dread them (for obvious reasons) but also the worry in case I can't find anyone ot look after the children or collect them from school. It's the what ifs that worry me.
I'm now looking at ways to boost my immune system as the Imuran is hard on it and reduces my resistence to infection etc. I need to look into the SCDiet, exercise when I can and get as healthy as possible so that I can reduce the risk of these days happening if that's at all possible.

Lynda

Kevster

Hey,

Sorry to hear that things haven't gone too well for you. It might take longer than you think for the medication to work though. Plus, if you've been stressed a lot this christmas, then that will affect the action of the medication. Regarding myself, since I flew home to Ireland from the UK last week, I've been suffering constipation. I know that next week I'll go through diarrhoea though. this has been the pattern I've had for around a year now.

When I have a very bad flare-up, the pain can be excrutiating and I just have to lie down and curl up (and grimace in agony). There's never a day that does by that I don't feel 'stuff' happening in my gut though.

Kevin

lynda67

Hey Kevin, I've suffered with the constipation episodes too. Not very comfortable. And yep everyday there's something going on, noises and discomfort.

The thing I'm trying to figure out is whether or not my symptoms are actually related to the colits or if it's a bug. The only thing that makes me think it's colitis is that it starts and finishes the same way. I'm okay and then I'm not, I go through the same stuff and then it's gone by the next day (suppose like a 24hour bug) but it's so the same each time. I've had bugs before but they differ.

I'm going to start keeping a diary to see if a pattern exists and what might have triggered it each time. I have been stressed...well busy stressed as opposed to emotionally and mentally stressed.

L.:)

Kevster

Yes, my gastroenterologist always told me to keep a diary, but my memory is good enough to recount a few weeks' worth of symptoms. I suspect that your problems are only related to the colitis, to be honest. I know that there are viruses/bugs about, but it just sounds more 'colitis-esque' than an infection. While saying that, the symptoms of colitis are kind of related to a bacterial infection - i.e. our immune system over-reacts to the natural bacteria in our guts.

suppose you'll get to know which foods are best for you with time. For example, I know that spicy foods actually help food pass through me, but I cannot eat Pink Lady apples because they really 'tear' into my gut wall! I can eat all other apple varieties, but not the Pink Lady's! (and they're my fav.!)

Night my friend,
Kevin

LegacyUser

Happy New Year!

Imuran working although very hard on the stomach once I went up to 100mg. Seems to be settling if I divide the doses between morning and bedtime. Suppressing my appetite which is no loss after months on the steroids. And I do feel sick at times. Happy it's working

I have a question though and hopefully someone can answer it for me. There's something i can't quite get my head around. As this is a disease that involves the good bacteria being attacked is it bad then to eat/drink foods that would replace the good bacteria like Yacult or live yoghurts etc? Would that make the situation worse? Adding more of what is causing the issue in the first place?

Lynda

lynda67

lynda1967 wrote: »

Happy New Year!

Imuran working although very hard on the stomach once I went up to 100mg. Seems to be settling if I divide the doses between morning and bedtime. Suppressing my appetite which is no loss after months on the steroids. And I do feel sick at times. Happy it's working

I have a question though and hopefully someone can answer it for me. There's something i can't quite get my head around. As this is a disease that involves the good bacteria being attacked is it bad then to eat/drink foods that would replace the good bacteria like Yacult or live yoghurts etc? Would that make the situation worse? Adding more of what is causing the issue in the first place?

Lynda

Not sure how this happened but somehow I posted as lynda1967...so above post is from me lynda67:)

Kevster

As far as I know, everyone's gut is in a constant state of renewal and 'layers' are always being shed and passed into the toilet. In our cases, the renewal is at a much quicker pace because we have to deal with the inflammation too (this inflammation is due to an adverse reaction to bacteria). However, it's not all bacteria that are problems for people with UC. The 'good' ones are generally thought to promote a healthy gut, even in us, and these are the ones in yoghurts. In UC, we don't suffer adverse reactions to these bacteria. The ones that we DO suffer adverse reactions to (resulting in inflammation, bleeding, and such) are the other bacteria in our guts such as E. coli, Klebsiella spp., Enterococcus spp., etc.

Kittykat29

Hi everyone,

I have just joined boards and have been reading all your posts regarding Colitis. I was diagnosed early 2007 with Ulcerative Colitis and struggled to keep it at bay until the end of 2008. I became steroid dependant towards the end of 2008 and after another scope my Colitis had gotten worse. My consultant then put me on Imuran and Infliximab infusions and thank god I have been in remission since then with no problems at all

It does take a while to find the right meds that work for you. I also have a friend that has Colitis and she is still going through the flare-ups but hopefully it will settle soon enough. Diet wise I mainly stay away from food that contain fibre and I especially stay away from apples as they tend to give me severe cramping.

I also realised I got flare ups within a couple of days when I took any antibiotics or Ibuprofen ?? I asked my consultant about this and he said that they would affect my Colitis and cause a flare-up !

I hope this helps you guys and lets you see that there is light at the end of the tunnel...:)

lynda67

Hi there, it's great that you're in remission. And that you've had no issues with Imuran. I've developed problems in the last week or so. I've been feeling very sick, vomiting sometimes, headache that lasts for a few days, keeps me awake at night. The hair on my legs has disappeared (not complaining about this) and mostly from my arms. Falling out a bit from my head. The fatigue after a few hours of taking it is chronic. I just need to sleep. Not good with 3 kids to look after. I feel like I'm getting the flu with cold chills. And now a rash on my face and neck. It's not itchy but it feels very rough and no amount of moisturising is helping.
Has anyone experienced these side effects? While the Imuran has done the job by stopping the bleeding it has left me feeling almost as bad as I did in the flare.
I'd be very interested in hearing how anyone else has got on.
TIA Lynda

locum-motion

lynda67 wrote: »

... I feel like I'm getting the flu with cold chills. And now a rash on my face and neck. It's not itchy but it feels very rough and no amount of moisturising is helping...

You need to speak to your pharmacist and/or doctor about these symptoms.

Kittykat29

Hi Lynda, sorry to hear you are having a bad week ! I am on 125mg per day of Imuran and I also suffered from some hair loss and to be honest it terrified me but it eventually settled down and but it was not to the extreme you have it ! I aslo feel tired and sick some days but my consultant did tell me it was a side affect of the Imuran. He also told me that the drug does not suit everyone and you would know fairly quick if you could not take it I would advise you to talk to your GP or consultant regarding your side affects as they seen exteme...

I really do hope it settles for you because I understand how hard it is to get through the hard days ( or weeks )....

lynda67

Thanks for your replies...

The consultant had said that 1 in 10 people can't tolerate Imuran but that I'd know almost immediatly as I'd have vomiting and other extreme symptoms within a few hours of taking it. He said that I would experience side effects but 'the benefits far outweigh the risks'.

I think perhaps I allowed myself a bit of a false sense of security after I was 'cured' and out of hospital in June 2008. I thought this is grand, I feel well, I can do this. It's not as bad as everyone is saying. Having UC is no big deal. I feel better than I have in years! What I am experiencing now is what I was reading on a few other forums about the bad days. It's difficult to get my head around the fact that I can't do all I used to do, can't run about getting things done at high speed, organising life for my family, keeping it on track, keeping up housework, and homework, laundry etc etc etc and the basic requirements of a mother like FEEDING your kids . When I get sick I actually don't care who is looking after them (Well I do but I'm hoping you know what I mean) I am just so sick I could die. Then when I'm well I wonder what the day before was all about. How can I get sick so quickly and bounce back just as fast? I'm very thankful for the well days believe me, I'm sure you know all about that. I think it requires a certain amount of resignation as to what makes life easier to cope with UC but without giving in, giving up and becoming fearful of UC. I will admit that I dread the sick days. If I only had me to worry about it might, only just, make things easier, if that's the word. But I don't and it requires calling in the troops. A difficult thing to do for a person who up until this really didn't need to call anyone for anything.

I'm rambling...hope everyone is having a good day. Will be onto the consultant tomorrow so will be interesting as to what he says. Will let you know?

Lynda

lynda67

The doctor took me off Imuran, the rash got worse and my face was starting to look puffier than when I was on the 60mg steroids! I'm glad to be off it. I don't know where it leaves me in terms of controlling the colitis. That remains to be seen.

Lynda

consultech

Hi Lynda, your current episode is very sad to read about, and unfortunately something I can totally relate to.

I've had UC for 10 years now (just 26 now), and have never suffered with it like I have in the last 2 years. I've had about 3-4 prolonged relapses in that time, and am right at that apex point of beginning of another one that could go one way or another. It was literally gone for 5 years before 2008.

My summarised advice is:

- Pretty much the diet guidelines that have been given. I can tolerate steamed chicken and veggie burgers (blended up). Nothing too rich in roughage, keep sat. fats to a min, no nuts/seeds etc. I eat porridge and honey in the morning, not sure how good this is. Was eatin tomato soup until someone pointed out it was v acidic. Last time I kicked a relapse I was livin on chicken soup and a white roll, with my meds. Portion size is a big thing for me, I almost intentionally starve myself so as to give my bowels as little work to do as poss (which prob isn't a great idea though).

- All that's worked for me in the last 2 years is Steroids, starting on 2 weeks of 40mg pred per day, down to 6pd x 1week, 5pd x 1w, 4pd x 1w, 3pd x 1w, 1pd x 1w. I'm on 150mg Imuran pd too all the time (shud be 50mg per 25kg bodyweight apparently). They apparently work well together, I've never had any adverse effects luckily enough. I'm currently on predfoam steroid enema (works for some people, me in the past) as I'm not badly relapsing. If youre using this it's important to "clear out" (sorry) before administering it, or you'll spasm badly. Also if you're on steroids you should be taking calcium supplements, as steroids will crumble your bones.

- Lynda as hard as it is to not stress out about this; you need to formulate some sort of relaxation/meditative de-stressing routine. As you know, the more you stress; the worse it gets. Try and control it, rather than letting it control you.

- Right, the "alternative" stuff I've tried is as follows:

*** Udo's Super 8 Pro-Biotics *** Get these. Refrigerated section of health shops like health matters etc, or the one on top floor of dundrum sc. Bout €25 for 30/40 (:(). I honestly swear by them, and have always tracked positive movement towards remission when taking them. 1-2 a day, with meals. They absolutely mock actimels/probitoic yoghurts (which actually lose most of their cultures in ur stomach acids) by the sheer amount of pro-biotic cultures contained in them. As someone has mentioned - and as is my belief - taking antibiotics kills off a lot of gut flora, and I've almost always relapsed after a course. Get straight on Udo's to replace this ASAP after a course of antibitoics.

Colpermin peppermint capsules (pharmacies, €7ish). Peppermint is an anti-spasmodic and should grant some respite from the multiple bathroom visits, allowing your system a chance to heal. I used them twice a day with very helpful results when on holiday when WC's weren't always plentiful.

Less-so:

Boswelia serrata (frankicense) capsules (from health shops) have been successfully used for inflamatory bowel diseases. Im not sure how much they helped, I was on a lot at once. http://en.wikipedia.org/wiki/Frankincense#Medical_research

Aloe Vera capsules or drops in water/non-acidic juice. Once again, dunno how much these helped, but there's a fair bit of press online about using it (It's a healer I think).



This posted started out as short, and it's late, but I really feel your pain (literally) so I thought I'd share what I've learned. Another thing is that you're gonna need to learn all about this disease, as your GP will most likely not have a clue. I've never had a GP (had 5 or 6 in 10 years) that I didn't have to educate about it. The GP I had 10 years ago even put me on a high-fibre diet/drinks during the first ever flare-up that landed me in hospital for a month. I knew no better!

geor

I agree with alot of what Consultech has said..

I use Natren probiotics - the best on the market - have to come from California, but there is a supplier in the UK. They come in powder form with the growth medium so it helps them colonize in your gut. Personally i believe the whole thing stems from an imbalance in our gut flora.

I have read alot about the disease, Georges always active aloe vera is also the best for crohn's and colitis as it does not contain any of the outer leaf, which may irritate sensitive intestines.

L-Glutamine is also very good for helping your gut heal..

Medications control or suppress the symptoms, but there are quite a few people who have managed to become symptom and med free following alternative paths..

sam34

geor, we have asked you before not to keep mentioning your website here.

Ush1

Some good advice there consultech.

Just about that Colpermin. My specialist prescribed me with that before I got the scope and it had the opposite effect with me, made me need to go to the toilet even more so I stopped taking it. I don't think peppermint agrees with me.

orlanemo

Hey Lynda67,
Sorry to hear you have been having a bad time of it lately. I was put on Imuran 5 years ago. By the time they started me on it I was desperate. I can't tolerate steroids or salazopyrin-type meds. When I took Imuran during the day I would suffer from extreme fatigue, palpitations - I felt awful and slept most of the day for the two weeks.

After two weeks I went to the GP and he suggested taking it at night - seeing as it was knocking me out, I might as well be asleep during the worst of it. This worked, although i was really sluggish during the day. You know when you are that sick you can't even think of a simple solution such as taking your meds at night!

Well eventually the very bad fatigue began to subside. It took over three months for it to begin to have any effect on the disease though. This is the average time for UC, Crohn's can be anything up to 6 months. And then I had my life back for nearly 5 years

Side-effects are there though For me they include palpitations, lower back pain, and really bad urinary tract infections. For some reason i began to grind my teeth when i took the Imuran at night (stopped once i could tolerate it furing the day))

I'm really sorry you could not take the Imuran, it did give me five years of remission Tough medication though, very hard to take. And it does have the added risk of melanoma and lymphoma ( I miss having a tan, can't risk it )

Its no longer working for me so now I am waiting to start on Humira, maybe you could talk to you specialist about Humira or infliximab?

Hope things get better soon for you, I have been housebound since November, its takes nothing short of a military operation to get me out But they haven't reached the end of the road for me with regard medication so i still have hope.

Orla

Kevster

eve wrote: »

After being admitted to hospital I was told to cut down on fibrous foods. Pretty much mean little or no fruit, veg, brown bread, etc for a while. I was also told to avoid spicy foods and eat 'plain' food. Then slowly I started to re-introduce these to my diet. I added a little at a time and gave it a few days to see if my body could process it.

That's weird because my doctor told me to eat lots of fruit and fibrous foods. To be honest with you, I've notuced this and other discrepancies ever since I was diagnosed (i.e. discrepencies in doctors' advice). I think it jusdt depends on the individual. For example, fruit is fine for me (except for Pink Lady apples only), but pasta is a no-no. Spicy foods make my gut feel 'comfortable' too (not in the sense that I get diarrhoea!).

Kevin

geor

Kevster wrote: »

That's weird because my doctor told me to eat lots of fruit and fibrous foods. To be honest with you, I've notuced this and other discrepancies ever since I was diagnosed (i.e. discrepencies in doctors' advice). I think it jusdt depends on the individual. For example, fruit is fine for me (except for Pink Lady apples only), but pasta is a no-no. Spicy foods make my gut feel 'comfortable' too (not in the sense that I get diarrhoea!).

Kevin

My experience is consultants and doctors prescribe medications. I have had very little guidance on nutrition, which food to eat etc.. and they usually conflict with each other.

You need to find what works for you food wise, life wise, medication wise.

I would look at the likes of Imuran/ Steroids and even Pentasa as short term fixes, they alleviate the symptoms but do not help cure the underlying illness and generally come with side-effects.

If you are currently on medication and doing well, I would use the time to research and read as much about the disease as possible. There are lots of Blogs and websites of people who are doing very well using various methods - The Specific Carb diet, certain Probiotics, vitamins and mineral supplements. look at your lifestyle and ensure you eat as healthy as possible - no processed foods, organic, no take-aways, cans of coke etc. Excercise, fun, sleep.

It is possible to make positive differences to your health

Its a long journey, frustrating and painful. But no-one else can take control of your health but you.

I am off all medication now over a year, and i must have tried 100's of supplements , diets and read 100's of books and spent a ridiculous amount of time on the internet.

There are things that will work for you, but I wouldn't trust everything the consultants say in relation to food - the true test is how your bowels are afterwards!!

sam34

geor, it is dangerous and irresponsible to dismiss teh advice of medical specialists and tout internet sources as better - any randomer can post "advice" on the internet

specific diets may work very well for some people, but equally they may be dangerous for others.

people should always seek medical advice

geor

Apologies if I came across as dismissing the advice of medical specialists. This was not my intention, I see an excellent consultant regularly and always follow his medical advice.

However, he will be the first to tell me that they do not know what causes Crohn's or Colitis and they do not know how to cure it.

I am simply suggesting that it is worth investigating what has worked for other sufferer's. This means exploring diet, fitness, supplements, probiotics etc.

Ofcourse you should always check with your GP or consultant before embarking on any major changes to diet and stick to your prescription.

There is alot of junk on the internet, I agree, however there are also some very good user groups, blogs and journals.

It is worth being well informed and asking questions.

consultech

geor wrote: »

My experience is consultants and doctors prescribe medications. I have had very little guidance on nutrition, which food to eat etc.. and they usually conflict with each other.

You need to find what works for you food wise, life wise, medication wise.

I would look at the likes of Imuran/ Steroids and even Pentasa as short term fixes, they alleviate the symptoms but do not help cure the underlying illness and generally come with side-effects.

If you are currently on medication and doing well, I would use the time to research and read as much about the disease as possible. There are lots of Blogs and websites of people who are doing very well using various methods - The Specific Carb diet, certain Probiotics, vitamins and mineral supplements. look at your lifestyle and ensure you eat as healthy as possible - no processed foods, organic, no take-aways, cans of coke etc. Excercise, fun, sleep.

It is possible to make positive differences to your health

Its a long journey, frustrating and painful. But no-one else can take control of your health but you.

I am off all medication now over a year, and i must have tried 100's of supplements , diets and read 100's of books and spent a ridiculous amount of time on the internet.

There are things that will work for you, but I wouldn't trust everything the consultants say in relation to food - the true test is how your bowels are afterwards!!

In spectacularly coincidental fashion: I was literally about to find and post in this thread praising the absolute miracle that is the Specific Carbohydrate Diet. I just got off the phone with my GP who spent the entire time hummm'ing, haw'ing, and I dunno'ing when I told her how the SCD (which I started 3 weeks ago) has cleared up my symptoms in a matter of days, all while I've been on Steroids/Immuno-supressants/Anti-inflamatories for weeks with no results. After all, it's costing her money. The same thing happened when I plonked it on the desk of my consultant in St. Vincents' 3 weeks ago. He had "never heard of it" (For all its sales and good press), and was sure medication was "the only way to go". It can't be argued that medications are pivotally important in the fight against inflamatory bowel diseases; But they need to be supplemented by a suitable diet. This is what I have learned as a long-term UC sufferer. Unfortunately the standard of nutritional awareness in the irish medical system is deplorable, so you're fighting an uphill battle.


Seriously? Buy "Breaking the vicious cycle - Intestinal Health Through Diet by Elaine Gottschall. 15ish quid I think on Amazon.co.uk delivered.

Find resources online and learn what's stopping you kicking UC symptoms. It's so simple. Sure, the diet is tough, and extremely restrictive, but the (proven) benefits are there. You can still get all the nutritional requirements you need to be healthy and recover; You're just cutting out all the crap carbs. No starch/Grains/Lactose/Di-Saccharide sugars etc.

There's still plenty of tasty stuff on there, you just need to do some research. The book has an extensive gourmet section, and the internet is your friend. My brother is a body-builder who is very much into his nutrition. He has pretty much started the diet with me, with added protein etc too.

It's not an easy fix however. You need to make some serious long-term life changes. Be mature, and just accept that you can't plough through takeaways/drink/junk food like everyone else can. For most people, it'll be the difference between being happy, or needing a bag for the rest of your life. These things can generally be re-introduced in moderation no probs after a time on the diet though.

I actually gave some contradictory diet advice earlier in the thread that I'm going to edit. Cant edit, so e.g.: No bread, the intro diet removes veg fibre from soups etc (keep cooked-in vitamins in stock), and Udo's probiotics are actually dairy-based, so are an "illegal" under the SCD diet. Get the one's Geor recommended on page 3.

http://www.pecanbread.com/
http://www.scdiet.org/

I'll add more links later when my browser stops being crap.

consultech

sam34 wrote: »

geor, it is dangerous and irresponsible to dismiss teh advice of medical specialists and tout internet sources as better - any randomer can post "advice" on the internet

specific diets may work very well for some people, but equally they may be dangerous for others.

people should always seek medical advice

In fairness, Geor did advocate food/life/medication balance, all in the one sentence.

For you own information; You should probably check the validity of your own reference to Geor's suggesting a 15 year-old proven therapeutic diet that is used/approved by senior colo-rectal specialists the world over simply as "touting internet sources".

geor

Glad to hear you are doing well Consultech and thanks for the support!

You should join the SCDUK mailing list (none for Ireland yet, but lots of Irish involved) They give great support and tips on what is working for them.

I took your advice on Udo's Super 8, finding them very good:)

May I recommend Natren probiotics, they are the best on the market..expensive...but the founder is one of the worlds leading experts on probiotics. The species and strains used have found to be beneficial for Crohn's and Colitis in studies.

http://www.scribd.com/doc/22853541/Digestive-Health


Also there are clinics in Australia which specialise in treating patients with enema's using only Natren probiotics.

I can also recommend Jini Pattells book 'Listen to your gut' , it takes SCD to the next level. It gives a detailed breakdown of supplements, diets and probiotics which work for IBD.

One of the founders of SCDUK is giving a lecture to the Irish Medical Council next week, he is going to update the mailing list as to how he got on.

all the best
geor

sam34

consultech wrote: »

In fairness, Geor did advocate food/life/medication balance, all in the one sentence.

For you own information; You should probably check the validity of your own reference to Geor's suggesting a 15 year-old proven therapeutic diet that is used/approved by senior colo-rectal specialists the world over simply as "touting internet sources".

geor specifically said he "wouldnt trust everything consultants say" in relation to food

plus, he suggested looking at peoples blogs and websites, which are very subjective. anyone can create a blog about anything.

i'm not saying medics have all the answers, i'm not so arrogant as to suggest that. but dismissal of them is hardly helpful either.