Ulcerative Colitis

Saruman

OK Saruman is back after over 3 weeks being off.. first week was for recovery on laser eye surgery but the rest was spent in Hospital where i was diagnosed with Ulcerative Colitis! Not the most pleasant time of my life but im getting better now with the combination of drugs im taking and taking a firm grip in my diet! I have done a lot of research on it and am confident i will beat it. Im also trying eastern remedies like Aloe Vera juice (im taking tablets though) and drinking Green tea (chinese or Japanese).

Im on a Low fibre diet at the moment until such time as im completely better or in remission as they say then i can start to bring it back.. also no citrus fruit or green vegetables.. its a LOW fat diet also so its not bad in that sense..

Any others out there who suffer from it (Or Chrones Disease) any tips etc? Recipies etc would be handy.

Walter_Sobcek

Hey,
I was diagnosed about 2 months ago -
not too bad but still a pain in the arse (boom boom!)
anyway - i've found that probiotic yogurts are really good straight before bed.
UK website for ulcerative colitis is good too

www.nacc.org.uk

smiles

My mum's a very bad sufferer, with a lot of very unusual complications due to it.

I'd suggest having a series of food allergy tests done, or keeping a food diary for a while, to see if there is a reoccuring theme which makes your symptoms worse.

I know mum can't touch mushrooms (and she loves 'em)! And antibiotics (for other things) tend to make it a hell of a lot worse.

Hope you're feeling ok,
Fionnuala

dudara

My cousin suffers from Chrons disease, and for a while he was doing really well. He had had surgery and was taking a cocktail of steroids etc. However, at the moment, he's having a bit of a relapse, because apparently you develop a resistance to the steroids and so on.

I was at a talk here in UCC a while ago, given my a member of a new research unit here called the aliamentary pharmabiotic centre. One the researchers there, called Dr. Fergus Shannahan, is really interested in Chrons disease and related gastrointestinal illnesses. They really recommend probiotoc treatment for such illnesses. APC

Walter_Sobcek

Actually does anyone know the name/link of any good nutritionists in dublin.
Starting to think that alternative medicine is probably the best way to deal with this.
My consultants best suggestion is to keep taking steroids for the rest of my life (not orally as well shall we say).

dudara

Ah, that's a bit more information than I wanted!!

Orla99913

Try this lady: Anna Collins Nutritional Therapy <annacollins@improveyourhealth.ie>

Hope this helps, and good luck with it.

Orla

Walter_Sobcek wrote: »

Actually does anyone know the name/link of any good nutritionists in dublin.
Starting to think that alternative medicine is probably the best way to deal with this.
My consultants best suggestion is to keep taking steroids for the rest of my life (not orally as well shall we say).

r3nu4l

As UC (IBD) is a chronic but intermittent disease I'm moving this to the LTI forum ( with 1 month redirect). LTI Mods, if you feel this is not within the forum scope, please move to Biology and Medicine.

Cheers,
r3nu4l.

Saruman, best of luck with the treatments, at least you have a diagnosis to work with!
Orla99913, a bit more information as to your relationship with the centre you mentioned would be useful as full disclosure.

Orla99913

Hi R3nu4l,

here's the name of the agency I work with: Spectrum Translation, and here is the letter that I am asked to forward to potential respondants:

IRISH ENGLISH PROJECT

Hello

This project involves another aspect of translation—called localization—which has to do with tailoring a translation and the language in it to a specific target country or area of the world.

The original text is already in English, and now we need a number of Irish subjects who can participate in the evaluation of it. A number of people will be put on the list, and from this list five or six people will be chosen based on age, gender, geographic location and level of formal education. If a person does not participate this time around, there will always be the chance to take part in a future project.

We need a mix of both men and women and a range of ages; the only requirement with regard to age is that a person be at least 18 years old.

Geographical variation within Ireland is also important, as the survey cannot be too biased towards any one area of the country.

Since the survey to be evaluated is for the general public, one requirement is that two out of every five subjects have less than 12 years of formal education; participation does not require that a person be a linguistic expert, only be a native speaker of English and be able to read the survey.

A subject will:

1/ receive the questionnaire by e-mail, fax or post from the interviewer.

2/ review the questionnaire in their own time, making note of any language which is unclear to them.

3/ have an interview of 30-45 minutes in length in which the interviewer – from Corporate Translations – will go over each question of the questionnaire, asking the subject to paraphrase the English (put it in his/her own words) to make sure that everything is properly understood. The subject can also provide comments about anything else he/she thinks would be difficult for someone in Ireland to understand.

The entire process will take at most one hour of a person’s time. The subject gets to set a time for the interview which works best for them, and there should be no telephone costs involved, as the interviewer will call them.

Following participation each subject normally receives $35 US (or the equivalent in euros) from me for their help. This can be done by bank transfer or PayPal.

People who are interested should provide me with the following information:

Full name:
Age and date of birth:
Gender:
City of residence in Ireland:
E-mail address:
Telephone number:
Best time to be contacted:
Years of formal education and what kind if beyond secondary school:
Preferred method of payment (PayPal or transfer in euros; if bank transfer, please provide the IBAN and BIC numbers of your account):

Any information you provide will of course be kept confidential. A subject may participate in up to three projects per year (for additional payment, of course); so if you would like to take part another time, let me know afterwards and your information will be kept for when another Irish English project should come up.

Thank you for taking the time to read this message. Should you or anyone you know be interested, please feel free to contact me at the e-mail address below. I’ll be glad to answer any questions you may have.

Best regards,

Brian Granger
Project Manager and Translator
________________________________
SPECTRUM TRANSLATION
Sionsteeg 3, III
2312 WV Leiden
The Netherlands
info@spectrumtranslation.com
www.spectrumtranslation.com
Tel. +31 (0) 71 522-7271
Cell +31 (0) 6 429-12834

(I'd like to point out that bank transfer are a regular means of payment in the Netherlands)


If you could help, that would be great. Thank you so much.


All the best,
Orla

r3nu4l wrote: »

As UC (IBD) is a chronic but intermittent disease I'm moving this to the LTI forum ( with 1 month redirect). LTI Mods, if you feel this is not within the forum scope, please move to Biology and Medicine.

Cheers,
r3nu4l.

Saruman, best of luck with the treatments, at least you have a diagnosis to work with!
Orla99913, a bit more information as to your relationship with the centre you mentioned would be useful as full disclosure.

The_Conductor

Hi Orla-

Can you clarify the nature of the survey- is it related to Ulcerative Colitis or other IBD? If not- what exactly is its relevance with longterm illness.

With kind regards,

SMcCarrick

Orla99913

They needed one person in Ireland with Ulcerative Colitis, and one person with Crohn's Disease. They already have someone to do the Crohn's Disease survey.

Basically the interview is just checking that a person from Ireland would be able to understand some instructions, and they need people familiar with what's required in certain medical conditions to answer certain questions. The end client is a medical company.

Hope this helps. Feel free to e-mail Brian Granger about it at [FONT=&quot]info@spectrumtranslation.com [/FONT]and he can explain it much better, he's been involved since the project started a year ago, before people with specific medical conditions were required.

All the best,
Orla

smccarrick wrote: »

Hi Orla-

Can you clarify the nature of the survey- is it related to Ulcerative Colitis or other IBD? If not- what exactly is its relevance with longterm illness.

With kind regards,

SMcCarrick

LegacyUser

Hello Fionnuala,

Do you have an e-mail address which can be used? We have an Irish English evaluation project for people with Ulcerative Colitis. Perhaps your mother could participate.

This will involve a bit of time over the telephone; your mother would only give her opinion of the quality of the English, and whether it would be suitable for an Irish publich or not.

The pay for the evaluation of around 2700 words (perhaps an hour of time, or a little more) is $35 US. Your mother would be able to select a time which works for her best for the interview.

Thank you for your time.

Brian Granger
info@spectrumtranslation.com

LegacyUser

Hello Mr/Ms Carrick,

Do you have an e-mail address which can be used? We have an Irish English evaluation project for people with Ulcerative Colitis. Perhaps you would be able to participate. I work with Orla, and there is an introduction letter which I could send you. I could also answer any specific questions which you might have.

The project involves a bit of time over the telephone; you would only give your opinion of the quality of the English, and whether it would be suitable for an Irish public or not. These are materials intended for patients with Ulcerative Colitis and Crohn's Disease.

The pay for the evaluation of around 2700 words (perhaps an hour of time, or a little more) is $35 US. You would be able to select the time for the interview.

You can write directly to info@spectrumtranslation.com for more information. Thank you very much for your consideration.

Brian Granger

LegacyUser

Hello S. McCarrick,

I have also just sent a message via your wife's site. I'm not sure that Orla answered all of your questions. I will be happy to provide the information you need.

We just need one person with Ulcerative Colitis to help evaluate the quality of the English for some questionnaires intended for an Irish public.

Sincerely,

Brian Granger

LegacyUser

Hello Walter,

Are you currently in Ireland? I'm following up on Orla's messages of the last few months.

We need one person with Ulcerative Colitis, a native speaker of Irish English, to help us complete an Irish English evaluation.

Sincerely,
Brian Granger
info@spectrumtranslation.com

Walter_Sobcek wrote: »

Actually does anyone know the name/link of any good nutritionists in dublin.
Starting to think that alternative medicine is probably the best way to deal with this.
My consultants best suggestion is to keep taking steroids for the rest of my life (not orally as well shall we say).

metrovelvet

OP

I had been initially diagnosed with severe chronic UC. I was prescribed colozal. For diet, I cut out all acidic foods, no seeds, no bran, read a book called the PH diet, I took fish oils and chlrophyll tablets. When I went for a colonoscopy 5 months later the GI said I didnt have it anymore and there were no signs of me ever having it and changed the initial diagnosis to infectious UC.

When I had UC I was severely allergic to fruit[except bananas] in particular, would go into anaphylactic shock [not anymore], and fructose or corn syrups.

smileykey

I was diagnosed with UC about 3 years ago and had a very difficult time with it. It didn't help that the steroids they put me on messed up my hormones and probably were a big factor in my developing depression (I didn't believe they were actually to blame until I had to go back onto them a few months ago and started getting very emotional and teary and had to stop taking them).

I think its my stress levels as opposed to my diet that affect it but thats not an easy thing to control. I tried different diet things and they didn't work but I do find that when I'm happier and have less to worry about it stays away for longer. It might be of use to you to look at your stress levels as well as your diet when trying to fight UC. Some relaxation techniques might help

scargill

I was diagnosed with UC in 1998. I was in a bad way back then - lost nearly 2 stone in 3 months. It took a while to get a proper diagnosis but once I did and was prescribed steroids for a few months it settled down an awful lot.
I have been on Salazopyrin since then (low dose - 2x500mg twice a day).

I attend Prof O'Morain's clinic in Tallaght Hospital.

Over the past 18 months or so it has flared up again. Going to the loo 5/6 times a day, bloody mucussy stools, etc. It has been particularly bad over the last few months so I went to Tallaght during the week.

They have now put me on Asacolon (1 x 800mg 4 times a day) and Colifoam for a few weeks. I'm hoping it will settle down again.

(That Asacolon is damn expensive stuff - it costs around €120 quid a month. With the drug refund scheme I pay a max of €100 a month.)

Reading some of the posts here it seems some people are attributing a change of diet to an improvement in their symptons.

I can't say I have ever noticed any discernable change in symptoms by eating a 'healthier' diet. The doctors in the Tallaght clinic don't seem to think there is any link between diet and UC either ?

I'd like to hear other people experiences of this...people who have specifically been diagnosed with UC or Crohns (and not IBS) and have seen any improvements ?
What do your doctors make of it ? Or have they passed any comment ?

The clinic in Tallaght are doing a research project on UC at the moment and I've been asked to participate - has anyone else ?

FinoBlad

Mrs Blad has UC for nearly four years now and she has really suffered especially in the early days when GPs, Doctors and Consultants all struggled to get a handle on her condition.

She thinks diet has very little to do with it, though very spicy food and alcohol don't "agree" with her system. You may be different though.

She thinks stress is a bigger factor and one of the best things she ever did was join a Facebook group for Irish people with UC and Crohns Disease

Unfortunately what works for one patient doesn't seem to work for another and just contacting other people has made a huge difference to her outlook on the whole thing.

I hope its ok to post the link, if not feel free to remove Mods and OP please PM me.

http://www.facebook.com/group.php?gid=106491930028&ref=search&sid=729010030.2892555798..1

One more tip from me. Weigh yourself every week and keep note of it.

dloob

Hi All,
I'm curently receiving Remicade for ulcerative colits, I'm just wondering if Humira is used for Colitis in Ireland or is it still only used for Crohns.
It would be nice to have another option to fall back on if the Remicade stops being effective.

fighterman

Hi,

I know I may be opening up an old thread here but it is with a positive intent.

Dr. William Davis, a cardiologist in the US has written extensively about the role of wheat in the diet and how individuals can experience remission from conditions like joint pain, asthma and ulcerative colitis by removing wheat from the diet.

This story which he posted recently may be of strong interest to sufferers of ulcerative colitis.

http://www.wheatbellyblog.com/2013/03/ulcerative-colitis-tamed/