154,913 registered members
Many not coping well with Crohn's
[Posted: Mon 26/01/2009 www.irishhealth.com]
One in five Irish people living with Crohn’s disease is coping poorly or very poorly, according to the findings of a new research study conducted by the website Crohnscolitis.ie.
More than 15,000 people in Ireland are affected by Crohn’s and ulcerative colitis. These conditions are collectively known as inflammatory bowel disease (IBD). For people with IBD, their digestive system is impaired and the gut becomes inflamed and swollen. People are most likely to develop Crohn’s disease in their late teens or early 20s.
The new research findings on Crohn’s were announced in conjunction with the launch of a major new patient education programme entitled ‘Life and IBD’, developed by the European Federation of Crohn’s and Ulcerative Colitis Association, which are available to download free of charge from Crohnscolitis.ie, the specialist clinic developed by Irishhealth.com.
The online guides in the ‘Life and IBD’ series are designed to be personalised so patients can access information appropriate to their life stage and disease severity. The first guide contains useful information about preparing for visits to the doctor, questions to ask your gastroenterologist and a self-assessment tool to determine the severity of IBD symptoms.
The second guide in the series is in developing an IBD management plan. This gives patients a clear strategy for keeping their IBD symptoms under control.
“The ‘Life and IBD’ programme is a great resource for all people living with Crohn’s disease or colitis, particularly as little information on IBD exists specifically for Irish patients,” said Elizabeth Lattimore, secretary of the Irish Society for Crohn’s and Colitis.
“Depending on the patient’s age and the severity of their condition, educational material can be downloaded that will be relevant specifically to them. This programme will help to broadly improve quality of life in general in addition to enhancing the clinical management of your disease,” Ms Lattimore added.
In addition to the ‘Life and IBD’ education programme, the website has been updated with a range of new material including a downloadable Rediscover Life newsletter. It also includes expert online video advice, is supported by an educational grant from Abbott. For more, visit http://www.crohnscolitis.ie
|tessieb Posted: 14/01/2010 23:44|
I have lived with Crohn's Disease for several years now & apart from flare-ups over the years, it has not been necessary to have surgery or take steroids. I take pentasa regularly, and manage to hold down a part-time job.
Up to 7 weeks ago I was also on Nexium (40mg) to protect my stomach (originally prescribed in hospital). My gp has changed me over to Germac, & I have been experiencing nausea/vomiting, heartburn, constipation & sometimes severe diorhrria and complete exhaustion. First I was on the lower dose, & then he increased it, but my symptoms got much worse. I am on asprin, & plavix also, & for this reason my gp decided Nexium was no longer safe to take with those. It does not make sense to me, as I felt perfectly well before the change, & I now have no quality of life.
Can anyone tell me if I have an allergy to something in the Germac, or are they very different to Nexium? Personally I would prefer to deal with any longterm affects of Nexium, than to live in constant agony.
|broken1 Posted: 10/05/2011 19:05|
i have crohns too and i take nexium.
there is more info now on meds and medication mixes and how suitable one is with the other etc.
not really for me to comment here, and dont really know what to say other than speak to your gastro or the person prescribing the aspirin, defo tell someone about the repeated complications you are experiencing, this doesnt seem right to me and may need further investigation or a med change.
i am wondering if people with crohns are prescribed the polymetric diet, if so how is it being monitered and are bloods done weekly. i was put on this and virtually walked away from the hospital with bottles and told to take seven a day with no further info and no further follow up, crazy i think, as does my community dietitian who says she is no expert and i should be referred to an expert. i have multiple health difficulties, advice here needed.
i am now on this regime over a month.
no follow up but told to keep on it a further five weeks.
|To join the discussion, register by clicking here|