IBD nurses

[Amanda89]

So just out of interest how many of you have an IBD nurse and if so do you have a good relationship with them?

 

[afidz]

I live in the US, so things are done differently here. But, my GI does have a nurse that I talk to more than my GI. I would say as far as a patient/nurse relationship goes, we are pretty close, but I have been a patient for 4.5 years, so it didn't happen over night.

 

[scottsma]

We have an excellent IBD nurse at our local hospital.We can phone her anytime,and if she's busy she will get back to us A.S.A.P. Her name is Judy,and others I know who have IBD speak very highly of her.

 

[bexy4256]

We have an IBD line at our hospital & they are all really helpful especially the IBD nurse & they always get back to you in 24hours. Only bad thing for me is there's no one about on a weekend to contact

 

[nogutsnoglory]

Like Afidz said it's different here. My GI has a nurse but they aren't specialized in IBD. I don't talk to them about anything because they only take my vitals and check on my meds.

 

[Ness1993]

I have an IBD nurse but the only problem is I have to travel hundreds of miles to see him. I have a direct phone number for him and he is excellent at getting back to me. I haven't been diagnosed long but i do feel we have a good relationship. He just speaks to me like a person rather than other doctors that act like I don't have feelings.

 

[emmaaaargh]

I've never had an IBD nurse, not when I was being treated by a paediatric GI and not now that I'm being treated by an adult one either.

 

[Grumbletum]

I have an IBD nurse on the mainland. I only found out about him when I was admitted to hospital in Inverness where he's based. He's the only one in the Highlands and Islands apparently! He's really good. He was the one who did my Infliximab infusions and, cos of the distance involved, he told me to phone or email him any time I had a concern.
When I flared after a brief remission and felt sure my fistula had opened up again, I emailed him, he spoke to the GI for me and I had an inpatients appointment a week later. An absolute Godsend for us remote Scottish Crohnies.

 

[Droopy Drawers]

I'm truly blessed to have a wonderful GI nurse give me my weekly mtx injection

Sue & I hit it off right from the start & it's not uncommon for her to ring me to see how I'm doing

I also get return calls in 10-15 minutes after leaving a message & the Practice I go to is quite large

Color me lucky

 

[KayleighMeek]

I see a fantastic IBD nurse at the hospital she is very knowledgable and really caring. It feels like she really wants to listen to everything you have to say and I have never felt rushed by her. Last year when I was having problems with the rheumatology team looking after me she stood in my corner and helped me get them to listen and to get their arses in gear, it was a massive releif emotionaly to have her help me out like that.

 

[Amanda89]

They really are great. I was Dx in 2011 and never even knew about IBD nurses as my doctor in England didn't even tell me about it, but when I moved to Scotland last year, when I was admitted to hospital they came up to the ward to introduce themself and make sure I understood what was going on. I'm quite lucky as I have 2 IBD nurses, but mainly deal with one of them called Seth who mostly does my Infiximab infusions. I really don't think IBD nurses get enough credit for their job!

 

[Amanda89]

I've never had an IBD nurse, not when I was being treated by a paediatric GI and not now that I'm being treated by an adult one either.

Hi Emma, Have you spoke to your GI about this?

 

[pattle66]

I had an IBD nurse when I lived in Scotland. I had a direct number with her and we had a great relationship. She was always available to talk to and if she was concerned she was always able to get me in to see the Professor on short notice. During my pregnancy she saw me regularly to make sure things were going ok. I don't think we have them in Australia or I didn't have one back in the 90's.

 

[SarahD]

Am I the only person to have a bad experience with an IBD nurse? There are two at the hospital where I'm treated. One is very nice and takes the time to listen, but the other one who usually calls me back upsets me nearly every time I talk to her. She's very dismissive and doesn't seem to be able to understand when a patient is suffering and needing help. She also doesn't seem to understand that I don't want to discuss my Crohn's over the phone with her whilst I'm at work surrounded by my colleagues, and it was really difficult at first to get her to call me back outside of work hours.

 

[sasz11]

I'm very lucky as my ibd nurse is very good. When I spent two months in hospital. I cried in hospital I cried on his shoulder most days. I have a direct line and a bleep. Although sometimes he is very hard to get hold of!

 

[DustyKat]

My kids have never had an IBD nurse until the new GI took over the practice they go to. I haven’t really had a need for her but the couple of times I have emailed as I wanted a question answered she has been back to me within a couple of hours to say she will speak with the GI ASAP and then rings me back within 24 hours. I have never needed anything urgently.

She always says without fail to let them know if there are any issues and to not hesitate to ring if I am concerned about anything. The GI has also given me his email address and mobile number.

So yeah, very positive experiences with our IBD nurse.

Dusty. xxx

 

[HorseLover!!]

My IBD nurse is brilliant I never had when I was first diagnosed at the age of 3, but when I asked about it they gave me a contact number for her and she really helpful I've been i touch with her for four years now she can sometimes be hard to get old of but she always gets back to me within 24hours or one of her colleagues will see if they can help me out .

 

[Farmwife]

Grace has one. She's amazing, caring and not paid enough to deal with us parents.:lol:
She does it all, takes messages, reschedules to get her in sooner and takes time to listen and not make me feel foolish for calling three times in one week.