Community Forum

I was diagnosed with CD in 2001,  battled to get everything under control for two years, then sort of went into remission until November 2009.  When I was initially submitted to the hospital in 2001 (before the CD diagnosis), I was assigned a GI doc.  I didn't like him at all, and as soon as I was well enough to give it much thought, I got a second opinion and switched docs.  I only saw the new doc once, at which time he told me I didn't need to come back until I had 2-3 flare's in a small amount of time (I was off all meds by this time). 

I didn't have a flare that was bad enough to send me to the doctor until a few months ago, at which time I had to find a new GI as the last one I saw had moved away.  I did find a doctor that I like, I feel that he treats me with respect and listens to my questions, the problem is, I don't like his nurse.  I called once about 4 days before an appointment with him to ask a question about whether or not he was going to continue me on Pentasa as I was almost out and didn't want to shell out $40 bucks for a med he was going to discontinue.  I never received a call back and when I went to my appointment she told me that she did relay the message to him, but she had booked his schedule so full he didn't have a chance to give it much thought (not sure if she was telling the truth or not).

There are a few other minor things as well (such as not knowing how to spell Crohn's or how to pronounce the name of meds) but they are minor in comparison to the way I "feel" when around her.  I had my mom with me at one appointment, and she felt the same way I did.  My question is, do I have a right to ask for a different nurse?  How do I express my concerns (which are really more of a personal opinion than anything) without causing problems for anyone?  Has anyone had to deal with this before?

I would love to hear everyone's thoughts!

 Reply posted for jazzy.

Hi there,

I had to respond to this because I am a nurse myself.  You deserve a nurse who is going to listen to you with empathy and call you back in a timely manner.  If you don’t receive a call back, make sure you keep calling back until you do.  You should not have to wait around especially if you are suffering.  This is a GI specialist’s office and the nurse should be able to spell Crohn’s correctly and be familiar with all GI meds.  I would definitely let the physician know how you feel in a nice way.  Take care.  I hope you can switch to a caring, understanding nurse.

 Reply posted for jazzy.

I have not had this experience but I can imagine how you must feel and im sorry this has happened to you.

 Reply posted for jazzy.

For me it is very important to feel comfortable with the dr and all of his staff. i have been lucky so far in that my GI doc has a very nice attentive staff and his PA is wonderful. As a matter of fact although the dr did the colonoscopy and I have met him and consulted I have most often seen his PA. I called the office once with a question and I did get a call back although the front desk advised me it would probably be after 4:30. My call was not emergent so I was ok with that. This is your body and your treatment. you absolutely have the right to never deal with this person again. It stresses you out and we all know how stress affects our IBD. I think if you speak to the dr in a nonconfrontational way he will be very understanding. Obviously this nurse does not have an intimate understanding of this disease and what issues we may have. We know our bodies i think better than anyone else and for her to tell you to drink gingerale was beyond ridiculous. I hope you get this resolved to your satisfaction.

 Reply posted for jazzy.

I am a doctor, and I very much appreciated hearing about problems with my staff.  Often, I could guess who was causing what kind of trouble, but without patient complaints there was not much I could do about it.  Once a patient complained, then I had something to write up for the employee's file and if the behavior continued, then I could have means to terminate their employment if necessary.  Without it, I was empty handed.

On a separate note, I am also a Crohn's patient, and I feel we all have the right to be treated well by doctors and staff. 

So, please tell the physician about the problem and request that you not receive care from that person again.  You'll be helping yourself and quite possibly protecting other patients as well!

 Reply posted for jazzy.

I've had the EXACT same experience. I have since moved away from the area but at the time, I went to a doctor who I really liked and felt that I had a great relationship with. He was always respectful and thorough and attentive. I had started a flare and I was having awful nauseau.  After day after day of feeling so nauseous that I could barely eat or function, I called the office. Now, I'm somone who never calls the office. I never make requests or bother the doctor or anything other than my regular appointments, blood tests, and Remicade visits. This P.A. got on the phone with me and was dismissive and rude and asked me if I had ever tried ginger ale. I wanted to scream and cry at the same time. GINGER ALE????? I was way beyond ginger ale at this point. If she bothered to even glance at my file before calling me (I don't think she did) she would have seen how serious my disease is.

I really stressed about this experience because I didn't know what to do and beyond that, I felt that my true medical needs were not being met by this staff member. I happened to have an appointment with my doctor and I told him, honestly and calmly, how she made me feel. I emphasized that I know their staff is very busy and I'm sure they handle all sorts of requests from all sorts of people, but that I felt minimized and dismissed by her and that I didn't deserve that. He truly apologized and addressed it with her. I requested not to see her again. He told me to make sure that i told him if it ever happened again.Also, I made sure to tell my current doctor recently how supportive and kind his staff is. He thanked me and then told me, quite directly and seriously, to please tell him if I ever felt anything differently because he needs to know from patients.

Doctors might not know until you tell them.  Remember your rights and be the squeaky wheel when you need to. You are your best advocate. Good luck!