Hi, my name is Ciaran [42yrs] and I live in Ireland. I’ve just been diagnosed with UC at start of April 2010, after weeks of becoming the best friend to many toilets in my local vicinity.
I am really tired and feeling pretty shocked by it. On meds [pred’s and salazopyrin] and was doing ok until last week when I fell ill [headaches nausea], still off work, thought it flu but seems to be infections according to Doc, who has now put me on antibiotics.
Pretty pissed off with everything at the moment, but delighted to come across the site….Just wanted to find shelter and make contact with people who know what this thing of ours is like as I feel that anyone who doesn’t have UC doesn’t really perceive it as serious…sometimes get feeling that they think that I am not feeling down and ill as I say I am…I am attempting to look into my diet etc but am confused as hell as I went to see dietician who gave me plan of foods but every site I look at had different things…
I would like to hear back from those who have more experience then me in this area and to look at how I might take some control back from those who prescribe, and dole out the meds without counting the costs both financially and psychologically. Once again thanks for the website as it will help me a lot to take care of myself and those around me who I care for.
All of the posts from “Annonymous UC” are from ulcerative colitis people who anonymously submitted stories or Doctor Reviews, medication, supplement reviews etc… I post all these stories to the site, but they’re different from my own personal stories so hopefully this account makes more sense:) -Adam – founder of iHaveUC.com
Hey Ciaran!
Welcome to the site. It is a great site to be a part of. I myself am from Ireland. Whereabouts are you from?
Hi Jen
I am based in the People’s Republic of Cork [East]. Need all the support I can at this moment….
Ciaran
Hi Ciaran.
Same, I was diognosed last August, and am of the same opinion as you, only those who have it can know how bad it is. The thing is too, the Dr’s just say….you have ulcerative colitis….. well what is that??
We know what has happened to us, but what next????.
I am so glad I found this site, it is so helpful. I am 6 weeks into the scd diet and the bleeding has stopped and the pain cramps are gone.
I am on pentassa, and due to a recent downer I am coming down on 12.5 prednisone. All the best look around, surf out anything that may help you.
Shirley
Hi Shirley
definitely going to look into the scd diet….all you guys are a huge help for me to just come to terms with UC and that it will be a part of my life…I thank you all
Ciaran
Hi Ciaran,
I know how confused you are about the whole food deal. When Adam (owner of this awesome website and my dearest husband :) was diagnosed, we were facing the same problem. I remember how frustrated we got after couple of months when everybody were telling us something different. The doctors actually weren’t overly concerned about the diet at all. It was driving me crazy….I thought, how come that food isn’t important if everything you put in your mouth goes eventually through your intestine?
Anyway, since I’ve seen unbelievable progress in Adam’s conditions after he started with the diet, I would highly recommend it to everybody. I mean…. I personally would rather cut some foods out than popping pills my whole life or having a needle in my arm every 2 months. I say that it’s worth the try! Also, there are no crazy side effects….but I don’t want to get into this because that’s another story :)
The book explains why you need to cut certain foods, what is allowed, what is not etc. It made sense to me when I red it. After you read it, you should be more clear about the diet.
I wish the best for you, Ciaran! You are definitely not alone in this world who suffers from UC! But the good news is that it’s manageable. Hope you get better soon!
Michaela
Hi Michaela I am going to look into the diet to see what I can do
Go raibh mile maith agat [thank you in Irish!]
Ciaran
Hi Ciaran,
I have been diagnosed with UC 7 years ago when I was 19 years old, it was pretty bad back then, but what I feel that I got better within time, I have learned to cope with it and stopped telling everybody that I have UC since they will put the sick person label on me and I am not sick, you can call it allergy to certain type of food, and yes we sometimes have to use the bathroom more than the regular people , when I used to have bleeding I thought that my UC turned into something worse , but it’s just a phase that you can avoid with the most suited diet for you as each case is different that’s why you find all the different diet programs you just need to know what works best for you .
You are not alone and welcome to this amazing website :)
Tayra
Thanks Tayra, your words and support mean a lot to me, onwards and upwards!!!
Ciaran
Hello, I’ve just found this site and am finding it quite encouraging! I was diagnosed ten years ago in Scotland (it took a year of symptoms and investigations before I was diagnosed) and one of the most helpful things for me was joining NACC, the National Association for Colitis and Crohn’s. I wonder if they are active, or have a sister organisation, in Ireland? One of the most useful things they send me each year is my “Can’t Wait” card, that you can show in petrol stations etc if you have to go.
I had an excellent Gastro doctor in Nottingham for five years, and one of the things I discovered was that the symptoms and the effects of medications vary considerably from person to person. I’ve been on sulphasalazine, prednisolone, ciprofloxacin, predfoam among others. Personally, I’ve found ciproxin to be best for me, but apparently it’s quite strong so I shouldn’t really use it as a first port of call – my new London doctor has just put me on Pentasa, but I’m not convinced it’s working! Anyway, it’s just a mild flare up at the moment, I’ve been really lucky, after the first bad year and the second bad flare up that had me off work for two weeks, since then I’ve been able to nip any flare ups in the bud.
I hope that you will be the same – once you’ve got in under control, make the most of your life when you are healthy and enjoy it! I eat pretty healthily most of the time (although still enjoy an occasional takeaway as well!) and the only thing I avoid is orange juice. I met with a nutritionist about seven years ago, who suggested I should stick to plain foods during flare ups and avoid sweetcorn and peas (lots of fibre in those little skins!) but I don’t even do that most of the time!
Ask lots of questions, and get over the embarrassment of talking about colitis with friends/colleagues – it’s amazing the number of people who do actually know someone with IBD once you get talking! I wish you all the best, and may your periods of remission be long ones!
HI, MY HEART AND PRAYERS GO OUT TO YOU. My 21 yr. old baby girl was diagnosed with UC 2 months ago. Remicade and Prednesone also did not work for her. She got thrush too and her tiny 5’2″ frame dropped to 88 pounds.I bought an e-book called self-healing Crohns and Ulcerative Colitis and called Dr. Klein for advise. With juice made from fresh fruits and vegetables, my daughter’s thrush dissappeared, her hemo went from 7.6 to 9.5 in 4 days 9 she received a red blood cell transfusion two weeks ago when her hemo dropped to 6.9) and she is in what we believe on the road to recovery….Please Miohelle don’t wait for the doctors to tell you the only answer is surgery…Oh and today is my daughters first day without Prednisone…She is med free and on the road to recovery.. May God bless you and help you make the right choice, He helped us..Maria
OOPS SORRY CIARAN. I HAD JUST FINISHED WRITING MICHELLE AND COPY AND PASTED THE MESSAGE AND FORGOT TO CHANGE THE NAME …
Hi Ciaran,
Hope you’re getting on a bit better now and yeah have to agree with Shirley there, most people who don’t have the condition have no idea what the colitis actually does to your body and life.
I am a van courier and when the condition developed you can imagine the effect it had on my life – god bless the nine-one-one Esso stations – I think without them I couldn’t have continued!!
I have the book myself and I have took on some of the info in it and would definitely agree with one of the posters and advise you to stay away from diary and especially wheat – I also find after a couple of beers I start to have laxative effects which I never had before!
Best of luck in dealing with it Ciaran!
Drink 1.5 litres water when you get up in morning before brushing teeth.
After one hour have 2 glass cabbage+battle guard juice . Follow it for 2 months and do proper yoga excersice bael fruit is very effective.
Mudpacks on stomach.
I’ve got UC and having a really bad time of it im feeling tired and having headaches and have no energy, I really hope this gets better??