questions from a nursing student

by egb
(vermont)

Hi--I am a nursing student writing a research paper on Crohn's, and various nursing interventions for someone diagnosed with Crohn's. What I am curious to learn from you folks is the following: what was the most/least helpful thing that was done for you by a nurse if you were hospitalized? What is the best/worst advice ever given to you by a nurse with regard to your Crohn's? Has a good nurse ever had any impact on you while you were in the hospital, or through your specialist's office? Can you recommend any websites/articles for me?


Thanks in advance for any responses.

EGB

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Medical stories NEW
by: Annette

Hello there,

It's great that you are taking time out to find out more information directly from those who have either first-hand experience of the disease or who live with those who are suffering.

My mother was very ill with Crohn's disease and although she had a number of other health issues too, I wanted to share her story with you because she felt terrible after some of the comments she received whilst in hospital.

Firstly, it took a long time for her to be diagnosed. She was told that she had Irritable Bowel Syndrome and as the months and years rolled on, we were certain that this was not the case. Then she was diagnosed with colitis and spent a lot of time trying out different medications that did not work. She became depressed, lonely and terrified and lost a great deal of weight.

I know how easy it is to be misdiagnosed with this disease, it happens to Crohn's sufferers constantly.

Eventually, she was taken into hospital, anemic and bleeding and had to have a blood transfusion, even though her condition was very serious, she was horribly embarrassed by her constant bouts of diarrhea as she was a very private person.

She'd had enough of hospital as she had been in and out of it for years after contracting Rheumatoid Arthritis and various other things so you can imagine, she felt very low. She was told to pull herself together one day by a young nurse who whilst might have been trying to provide a more practical slant on the situation, did not help my mother at all.

When you have someone who cannot just up and walk to the toilet but needs help, a more sympathetic approach would be appreciated.

A doctor also was abrupt and unconcerned when regaling the worst case scenarios of the disease and I have to say, these were the only words that she remembered.

There was certainly no bedside manner or comprehension that she might have been terrified of what was to come. Crohn's (the final diagnosis) enabled us to do our own research and with a lot of patience and understanding, she became able to cope with the disease and it became less aggressive with time and once they had found suitable treatments for her.

It took a long time for her to come to terms with the disease though. It impacted every area of her life, it was made worse by the fact that her physical disabilities didn't make it easy for her to get to the toilet in time. She had carers at home but became very dependent on them for the basic things in life.

My point is, that I am sure the nursing profession did not mean to make her feel bad and it must be easier to detach your emotions when caring that taking on everyone's fears. It is important that medical staff remember that people are genuinely afraid of their own mortality and the fear of the unknown. Once you have a diagnosis, you can learn about it and try to fight it or at least live with it. The way she was treated at that time was quite cruel and unnecessary and I know that is not necessarily the norm.




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