Doctors

[xX_LittleMissValentine_Xx]

Ok, I just want to have a bit of a complain about doctors. Reading alot on here I know we all have problems with them from time to time and can all relate to this. Obviously I want to say that I know I am very lucky to even have doctors, and that I would probably be dead without them, but there are still definately some flaws in the system and the way some of them think that I want to vent about. I would also be interested in what you all think and your experiences.
My main thing that I have noticed in my experience with crohns. It took me ages to get them to at first see that there was something seriously wrong with me. Then when they did my diagnosis was quite quick and good, but pretty much after my diagnosis and after they had put me on successful meds they left me to it. They have never offered me and nutritional or psychological advice. When I have felt unwell and tried to contact them I have almost had no help. I have had more help from my GP recently than from my GI.
We have a disease which is constant and is almost always changing in some way, I saw my GI in october after not seeing him in about 10 months dispite being unwell. And when I told him I was unwell he organised a colonoscopy in Jan. That is almost three months later, and I am feeling alot better! This whole thing just seems stupud to me.
I think there needs to be a better system where when you are diagnosed with a chronic disease, they teach you about it and try to help you work out for yourself what is wrong so you dnt have to wait around for doctors so much. Give you the freedom to go to nurses and organise your own blood tests. etc.
I am interested to know if other people have had similar problems to me and or if they have better systems where they are.
x x x x x

 

[D Bergy]

I had trouble getting diagnosed, until I went to a good Gastroenterologist. Then, just like you, I was diagnosed very quickly.

I go the a GP, pretty much because I have to for my prescription of LDN. Other than that I will have them run vitamin D, Iron, B-12 and CRP blood tests. Most of those tests were my suggestion, as GP's are not going to be experts on all diseases, and I do not expect them to be. I pretty much am not going to the doctor unless they can do something needed, that i cannot do.

I guess I agree with you, and pretty much try to do as you are suggesting, but I do not get much information from doctors, other than on the internet. I do tons of research on the internet, and come up with my own treatments. Then I find a way to get the treatment I decide on. Doctors only have one perspective of the disease, and it is incomplete, in my opinion. I like to hear what they have to say, but they do not have all the answers. I used to think that they should know more than anyone, but I no longer have that expectation.

I think the problem you are talking about is pretty common. I just work around it.

Dan

 

[uab grad student]

Sorry to hear it took them 3 months to get you in to get a colonoscopy, Miss Valentine. I used to have the same experience with doctors but now I'm lucky to have a good GI. I think as Dan said, many docs just aren't experts in Crohn's. Luckily, I finally found one that is.

 

[Agent X20]

They have never offered me and nutritional or psychological advice.

This made me think. Some nutitional advice would be good, I think... but I've never been offered it. Some psychological advice might have been helpful when I was first diagnosed at the age of 16. All I got was... "we'll give you a 50/50 chance" and "of course, you'll never live a normal life"... then they dosed me up on pred and sent me out into the big wide world... nice!

 

[imisspopcorn]

I agree that there needs to be education for more chronic diseases...Coming from a hospital setting, there are not many educational programs at all...Most of them are for diabetics, heart patients, or ostomy/wound care patients......I think it has to do with how pervasive a particular disease is and unfortunately how expensive treatment is....Insurance companies lose money when people are non-compliant with their treatment and end up back in the hospital, so that is why they start educational programs....

 

[xX_LittleMissValentine_Xx]

Insurance companies lose money when people are non-compliant with their treatment and end up back in the hospital, so that is why they start educational programs....

And over here so do the NHS. I think its something they should invest in, it would save them money rather than us having to go to them all the time.

And Dan, I guess it is a good idea to try things yourself. But to be honest I'm a bit scared of doing it. What if there is something I dont know and do more harm than good?

 

[shazamataz]

Yup, I hear you. In my experience, they don't tell you anything. I was in for 10 days in July and they hardly let me know anything that was going on. Then sent me home with Pred and said to call if i had any problems. I DID have problems (the effects of pred making me feel more than a little crazy) and rung only to get a call back over 24 hours later, and when I told him my 'problem' he said if my bowels were fine, there was nothing he could do. AAArrrrgggg!!
I also have had a battle with the tapering (depression etc) and when I managed to get hold of him to discuss this his only answer was to stick to the schedule he'd given me, even though I'd done some research and found smaller increments can be helpful.
I think I'm needing to go back and really dreading it!
As for nutritional/psychological advice - nothing. I just got told to go low residue. When I went to the Dieticians a couple of weeks after coming home they were HOPELESS! In fact it wasn't until about 20 minutes into the meeting they even realised I had Crohns!!! WTF!!??
And I do think we need psychological support, but it just doesnt exist here. I could go to therapy of some type of course, but I donlt have the money to do so.
So I guess we all just battle on as best we can?

 

[Pirate]

Doctors that don't listen to you and don't seem to care about your opinion because 'THIER THE DOCTOR" So glad my GI is great about letting me be involved in my treatment.

 

[Peaches]

What LMV is saying is a concern for me if we get nationalized healthcare. I realize we need a change, but I am hoping it will be different than in the UK and Canada. But, knowing our bureaucracy here - I'm doubting it.

 

[D Bergy]

It certainly is possible to do harm by making a mistake, but my family has repeatetly been harmed by Doctors mistakes, so I really do not feel that I am going to do much worse. I also have had a couple of really good doctors, but they are scarce.

I also look for treatments that have minimal risk, so I start out with that in my favor. Of course there is always the risk that it won't work, but that is pretty universal with any treatment.

It has worked for me, but it certainly is not something everyone is comfortable with. I guess I am not that risk adverse to begin with. Life is a risky proposition, and I will go whenever my time is up. Though I do not want to speed up the process.

Dan

 

[Guestly]

Agree.

I have had most support and educational information from this site... my GI is nice enough but hardly speaks.... He said "You have the Crohn's disease - here are some steroids"... I think the next time he spoke a few weeks later it was to say, "You should try Pentasa for maintenance".... a month later it was "OK, lets try Azathioprine", followed a few months later by "OK, then lets go for Mercaptopurine"... thats about as verbose as he gets... he did once complement me on a bracelet I was wearing just as I was drifting off for a colonoscopy, and that is about as sociable and conversational as he has ever been... don't get me wrong, he's a perfectly nice chap, but no one has told me what to expect, how things will progress...nothing... everything I know about Crohn's, I learned from you guys...

Thank god for you lot is all I can say.

Lishyloo x

 

[pewpewlasers]

It would be nice to have good doctors that cared and took the time with their patients.
I would kill for a doc that listened and cared. One that called to check up and offer advice!

 

[shazamataz]

It's hard isn't it? I find that I never get enough informaton because we have like 15 minutes and then I feel I need to rush because there is someone else waiting! How they think people with a serious illness can be dealt with in 15 minutes is beyond me!

 

[Pirate]

My GI is great. When I go in for an office call, she takes the time to really find out whats going on and she listens. Janis usually goes with me and we really ask questions. When I wasn't sure about going on Remicade she put me on Entocort to give me a chance to think about what I wanted to do.

When Janis and I see her at the hospital she always calls us by our first name and Chats for a few minutes. The nurses in the hospital just love her. When they get a patient that is having problems, they have been known to call her and she has dropped what she was doing to go talk to the patient. She just has that down to earth air about her.

 

[xX_LittleMissValentine_Xx]

Aw thats lovely Pirate. I hate my GI lol, ok maybe he isnt that bad. But I dislike him. He acts almost as though things are a bit embarresing and shameful. I saw another one recently tho. He did my colonoscopy yesterday, well they both did. And I much prefer him. He seems alot more caring, more like a human being.
x x x x

 

[Becky]

I am lucky to have a great Dr as well. I go in about every 3 months and have blood work done before every visit. He always sits down and talks to me. Asks how I am etc. He gets mad when I do not call if I have problems.

When I was in hospital and diag. I HATED the Dr. He was horrible. He forgot about my test and made me stay an extra day. His treatment was predisone and that was it.

I am lucky to have the practice I am with.

Good luck!

 

[chelli]

I guess I'm one of the lucky ones also. As soon as I got a GP who would listen to me and not dismiss my symptoms things moved very quickly. My GI is awesome. He actually calls me at home to make sure that I'm ok. When I was having problems with medications, he took the time to talk to me and explain the various meds and their potential side effects. He also made sure that he gave me the stats of the side effects so that I wouldn't worry.

Thanks God for good Insurance.

 

[Agent X20]

My current GP is very good and listens a lot. The downside is that you're always late in to see her because she's listening to everyone else before you. I think it's worth it overall, though