Advertisement
If you have a new account but are having problems posting or verifying your account, please email us on hello@boards.ie for help. Thanks :)
Hello all! Please ensure that you are posting a new thread or question in the appropriate forum. The Feedback forum is overwhelmed with questions that are having to be moved elsewhere. If you need help to verify your account contact hello@boards.ie

Ulcerative colitis and diet

Options
2

Comments

  • Closed Accounts Posts: 2,980 ✭✭✭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.


  • Closed Accounts Posts: 2 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...:)


  • Registered Users Posts: 22 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


  • Registered Users Posts: 5,143 ✭✭✭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.


  • Closed Accounts Posts: 2 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 )....


  • Advertisement
  • Registered Users Posts: 22 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 :D. 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 :D


  • Registered Users Posts: 22 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


  • Closed Accounts Posts: 1,956 ✭✭✭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!


  • Closed Accounts Posts: 34 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..


  • Closed Accounts Posts: 8,073 ✭✭✭sam34


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


  • Advertisement
  • Registered Users Posts: 11,469 ✭✭✭✭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.


  • Registered Users Posts: 32 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


  • Closed Accounts Posts: 2,980 ✭✭✭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


  • Closed Accounts Posts: 34 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!!


  • Closed Accounts Posts: 8,073 ✭✭✭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


  • Closed Accounts Posts: 34 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.


  • Closed Accounts Posts: 1,956 ✭✭✭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.


  • Closed Accounts Posts: 1,956 ✭✭✭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".


  • Closed Accounts Posts: 34 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


  • Closed Accounts Posts: 8,073 ✭✭✭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.


  • Advertisement
  • Closed Accounts Posts: 1,956 ✭✭✭consultech


    sam34 wrote: »
    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.

    Well no, of course not; But he didn't dimiss medical advice on the whole at all. He advocated a balanced approach to treatment, incorporating meds/food/life changes, with the warning that consultants generally aren't too au fais with appropriate nutrition, which - based on a lot of my discussions with them - they're not. They're not nutritionists.


  • Closed Accounts Posts: 602 ✭✭✭eman66


    consultech wrote: »
    ...the Specific Carbohydrate Diet..
    has been the best thing that ever happened to me. Worth a read, might help, might not.


  • Closed Accounts Posts: 27 mickedm


    I've had UC now for 8 years and like many on this thread have learned that there are no easy answers and discovering what works is a very personal thing. It also seems to me that what works for one person does not work for the next.

    Ive tried lots of diets, supplements, acupuncture...exclude this/that, lactose free, low fibre, aloe vera, wheat grass..... and unfortunately I've yet to find anything I'd swear by. While I've not tried this specific carbohydrate diet that some seem to be promoting strongly, I'd be skeptical, especially as such a drastic lifestyle change is required. I'm delighted to hear that it has worked for some of the posters here but I'm not sure I'll be running to give it a go.

    Having said that I don't think the medics know all either and I often feel like I'm on my own. Steroids are the only things that seem to work for me when I get really sick but unfortunately I've been quite unwell on and off since November. The usual steroid dose does not seem to be doing the job and I've unsuccessfully tried to come off them twice. Maybe I've become dependent, has that happened to anyone else? I'm avoiding going back to my consultant and suffering pretty badly even though I know deep down I'll have to go back soon. Just scared about going on the Imuran, which is next on the list for me I'm sure.

    Sorry for rambling a bit but I'm sure you all understand, I'm just desperate to find anything that can help. Giving up the spuds may be a step too far though:D


  • Closed Accounts Posts: 34 geor


    Hi Mickedm,

    Don't worry too much about Imuran, i was on it for 2 years and found it much better than steroids.

    I agree the SCD is very difficult to follow and probably not practical for most people. However knowing that large amounts of starchy carbs, dairy or wheat may exacerbate your symptoms can help give you the knowledge on how to eat plain for colitis when your experiencing a flare-up.

    Anyhow, I know it seems like everyone is peddling a particular 'cure' or theory, but don't give up trying to find out what works for you.

    The important thing is that many people are managing this disease successfully, whether it be SCD, probiotics, acupunture or whatever...


  • Closed Accounts Posts: 1,956 ✭✭✭consultech


    mickedm wrote: »
    I've had UC now for 8 years and like many on this thread have learned that there are no easy answers and discovering what works is a very personal thing. It also seems to me that what works for one person does not work for the next.

    Ive tried lots of diets, supplements, acupuncture...exclude this/that, lactose free, low fibre, aloe vera, wheat grass..... and unfortunately I've yet to find anything I'd swear by. While I've not tried this specific carbohydrate diet that some seem to be promoting strongly, I'd be skeptical, especially as such a drastic lifestyle change is required. I'm delighted to hear that it has worked for some of the posters here but I'm not sure I'll be running to give it a go.

    Having said that I don't think the medics know all either and I often feel like I'm on my own. Steroids are the only things that seem to work for me when I get really sick but unfortunately I've been quite unwell on and off since November. The usual steroid dose does not seem to be doing the job and I've unsuccessfully tried to come off them twice. Maybe I've become dependent, has that happened to anyone else? I'm avoiding going back to my consultant and suffering pretty badly even though I know deep down I'll have to go back soon. Just scared about going on the Imuran, which is next on the list for me I'm sure.

    Sorry for rambling a bit but I'm sure you all understand, I'm just desperate to find anything that can help. Giving up the spuds may be a step too far though:D

    I would say give the S.C. Diet a go if all else has failed. It's actually not as dramatic as its probably being made sound in here (by myself included). It's very do-able if you buy a good recipe book, a yoghurt maker, and plenty of almond flour! www.scdiet.org and www.pecanbread.com are good resources. Readng "Breaking the vicious cycle" by Elaine Gotscheill(?) is the first step though.

    The only considerations (as voiced by Dr. Murphy's clinic in Vincent's on Friday when I attended) is the lack of Calcium in the diet. If you go on it you'll need to find a vegetable-based calcium supplement. I don't think regular calci-chew cuts it as it has sucrose and soya bean extract (These are "illegals" on the diet).

    Give it a few weeks, as it sometimes apparently gets slightly worse before it gets better (e.coli releases a toxic by-product as it dies off).

    Also; Have you been put on Mezavant XL? It's a new anti-inflammatory that is receiving great feedback in Crohns and Colitis treatment. Look into it. Aswell, I've been on Imuran twice (for prolonged period) and never experienced so much as a headache because of it. It's been extremely easy for me to take, and I'm generally quite sensitive to medications.

    Hope this helps...


  • Closed Accounts Posts: 27 mickedm


    Hey thanks geor and consultech.... always great to get advice/feedback from people who know what youre going through. Good to hear that neither of you had much side effects on the Imuran too , makes me feel a lot better about it, especially after reading long lists of side effects online (I know I shouldn't pay too much attention to them but its hard not to sometimes).

    Youre right that we all need to keep searching for what works for us and the SCD thing may have some role to play for some people. Id just worry about quoting the SCD science as fact when I think its all very theoretical in relation to UC. Some people with this condition, myself included, often find themselves so desperate for any help that they are very impressionable. Id just be careful about promoting any one of these unproven diets/therapies too strongly on a public forum. And I certainly dont think the doctors are conspiring against us. While pharmaceutical companies may be inherently evil, I think doctors in general only want to help, even if sometimes their style/whatever indicates otherwise. For anyone in difficulty, I think they remain the best source of help/information.

    Forums like this of course are really helpful too, I just think we all have a responsibility for what goes on them. Im trying to go back to the frame of mind of when I was just diagnosed and how eager I was for new ideas. Unfortunately I've become somewhat of a cynic since then although I certainly have not given up looking for new ideas. Anyway I think its really important to make sure nobody reading the forum could be easily (unintentionally) misguided

    ps - unfortunately I react badly to the whole family of drugs that Mezavant belongs to so no go for me


  • Closed Accounts Posts: 10,025 ✭✭✭✭-Corkie-


    Hi folks havent posted about this before. I am on 3200mg of asacolon at the moment and .25 mg of steroids which finish saturday. Im also on the calcichew. My question is can you drink while on this or is it a no no. I am going away at weekend with friends and would like to know im not a big drinker and never was, if i drank 4-5 pints in a night it would be a lot.

    Thanks


  • Closed Accounts Posts: 27 mickedm


    hows it going SARASON? If you are feeling pretty well, Id say having a few social ones is OK. Depends how well you are I suppose though. Wouldn't go on the piss for the weekend but sounds like you're not planning to. I did something like that a few months ago... My symptoms got better quickly over a couple of weeks and out of frustration of not having been able to go out for ages, I went to Paris for a weeks holiday and drank way too much. Have been regretting that since. I hate completely ruling out things if I don't absolutely need to, wrecks my head when I have to. And I like a drink to be honest. I certainly haven't figured this out either though so hopefully not giving bad advice.
    Years ago did get swollen, red cheeks when I was drinking on drug called salazopyrin but think that was just me, probably shouldn't even mention it. Came off those drugs shortly after anyway.

    Hope that might help


  • Closed Accounts Posts: 10,025 ✭✭✭✭-Corkie-


    Cheers mick i never drink much alcohol but i think i would be better sipping a bottle of beer than drinking coke o


  • Advertisement
  • Closed Accounts Posts: 1,956 ✭✭✭consultech


    SARASON wrote: »
    Cheers mick i never drink much alcohol but i think i would be better sipping a bottle of beer than drinking coke o

    Vodka and diet 7-up is the absolute best (No disaccharides).


Advertisement