Changing Drs.

[jac521]

I have been going to a Crohn's specialist since August. I have been diagnosed with Crohn's in my small bowel and he did a colonoscopy and endoscopy a couple of weeks ago and told me I don't have Crohns. I asked him why every time I go off on Entocort for 4-5 months do I get sick. He said maybe it is my adrenals. He did an MRE a couple of months ago and it showed strictures in my small bowel. I have bad left side abdominal pain (the strictures are on the right) and have had difficulty passing stool lately which I never have had. He wants to do a pill cam which can't be scheduled for a few months. I am confused. If I don't have Crohns and it could be my adrenals like he said, why does he want to do a pill cam.

I found another Dr. closer to where I live and I have heard good reports about him. I absolutely hate the idea of changing Drs., but can't take this merry-go-round much longer. My Dr. also told me that I call the office too much. I have been calling the office because I have been in bad pain. Also whenever he does biopsies, tests, no one ever lets me know the results. He refered me last week to another Dr. for a test on a nodule in my stomach and no body ever told me he was referring me to this other Dr. or why.

Am I jumping the gun changing Drs? I went to him because of pain on my left side and it is 100 times worse now along with having difficulty passing stool.

 

[nogutsnoglory]

I think you have very obvious signs of IBD and have done the proper tests. This doctor sounds rude and unsympathetic and isn't giving you a proper diagnosis if its something else.

The idea of a pill cam horrifies me if you are stricturing. Those should only be used in someone who is healthy or in remission.

I would definitely seek out another doctor. Good luck!

 

[jac521]

Thanks Nogutsnoglory

This Dr. is very rude. He never even acknowledged my husband's presence when he came in the room after the scopes.

Also, when I left the Hospital after the scopes, I noticed when I got home that I had been given another patient's discharge papers with the Dr's. Impression for the colonoscopy and her colonscopy results.

When I called the Hospital colonoscopy unit and told them I didn't have my discharge papers but was given someone elses, it was like they didn't even care. I guess they never heard of HIPPA?

 

[LisaL]

HI jac521...I agree with Nogutsnoglory...find another doctor!! You are not nuts, and you deserve to be treated respectfully by your doctor. Your symptoms do sound like signs of IBD, and need to be better assessed. I also agree that the pill cam is a risky idea given that no one knows what is really going on inside of you. If you are having stricture, due to inflammation or scarring, you run the risk of the pill cam getting stuck and needing surgery. There are better tests ( less risky) that can help your doctor determine what is going on.

Switch doctors and tell the new doctor all of your symptoms and what has or hasn't been done thus far. I hope that you get some relief soon. Keep us posted.
-Lisa

 

[jac521]

At this point I am scared to death of Drs. Any advice is appreciated.

 

[CrohnsChicago]

I think it is a good idea to at least get a second opinion. It sounds like your doctor is a poor communicator. If you are having strictures and experiencing pain such as what you describe then there has to be something going on. Maybe your treatment plan is something that needs to be readjusted and someone to help confirm what it is you are dealing with overall.

Before you see a second doctor, make sure you get copies of all of your medical records from this "crohn's specialist". You will thank yourself later.

 

[jac521]

The new Dr. I am thinking of going sent me a release so he could get my records. Should I go and get my own copies of the records as well?

Thanks.
Jac521

 

[hthompson631]

I had a bad problem with my first GI. I fired him in December and got my new GI in January. So far he seems great and understanding. I went in and got my records and made me a copy for my records. Do not ever feel bad about switching doctors, if they are not helping you or listening to you they have got to go. Remember you are paying for their services!! I hope everything works out for you. Keep us updated.

 

[CrohnsChicago]

That's good. I would do the release so he can get your records but it's also good to have copies of your own for your home records. That way not only will the doctors know what is going on, you can quickly access what has gone on as well.

The new Dr. I am thinking of going sent me a release so he could get my records. Should I go and get my own copies of the records as well?

Thanks.
Jac521

 

[jac521]

Thanks to everyone for your help!!!!!

Jac521

 

[jac521]

I changed Drs. The new Dr. I went to kept saying over and over that the Dr. I had been going to was a Crohn's specialist and the best there is in this area. He told me that he was the Dr. that other Drs. sent complex patient to. He kept asking me if I was sure I wanted to changed Drs.

I felt like he didn't want me as a patient and told him "that if he didn't want me as a patient to come out and tell me so". He said "if he didn't think he could handle me he would tell me, that he wouldn't do that to me".

He also kept stating that I "had seen quite a few Drs." He said he had to get their records and wasn't really interested in looking at my file with biopsy results, etc. in it.

Your thoughts are appreciated.

jac521

 

[nogutsnoglory]

Is he part of the same hospital? Sometimes they don't want to step on a colleagues toes? Sounds like this doc won't be particularly helpful.

 

[jac521]

No, he is not part of the same hospital or network. Do I try another Dr. before I get established with this one?

 

[nogutsnoglory]

I really don't know than sorry. Maybe try one more first and see whom you prefer.

 

[Nessie]

I am in a similar situation at the moment. I have been with my gastro for 5 years and when my disease is calm, he's great but when I'm not doing well he will often say things like " you've done this before..." and I feel like my 15 years of experience of living with and knowing this disease is invalidated. I have currently been sick for about 4 weeks. I haven't felt this sick in a long while. He asked if I thought it was my crohn 's, I said most definitely and here I sit tonight in worsening pain. I want a second opinion and a doctor who I can feel comfortable with talking to, and who will take my concerns seriously. Why do I feel guilty about doing it though? I am so upset and feel like the last thing I need to be stressing about is finding a new doctor.

 

[jac521]

I agree with you Nessie. There is nothing I quite hate more than having to change Drs. Starting over is not easy. I've been told that when I see a "red flag" to not ignore it, but get away from the Dr. Sometime's it is easier to keep ignoring the red flags than to change Drs. Also, I'm always afraid I will end up with one worse than the one before.

 

[darster]

Keep looking! You should continue till you find a doctor that you can work with. I know it's a huge pain in the butt, I myself am researching a new doctor. Good luck!