Taking Control

[NoahsMommy]

RE: http://petoftheday.com/talk/showthread.php?s=&threadid=87135

I'm fed up with the lack of treatment I've gotten from my "specialist" at the IBD Center at Cedars Sinai. I wrote him an email (and will mail him a copy to ENSURE he gets it) outlining my dissapointment. Although I asked for him to call me, I think I've already made my decision.

I was searching online and found this website:
http://www.centerwatch.com/professional/pro5.html

Its a center that deals with research, treatment and testing of patients with Digestive Diseases. I emailed the head doctor there (Medical Director, Digestive Diseases Foundation, Professor of Medicine, UCLA School of Medicine <---under his name) at 5:30 p.m. and saw that he got back to me at 6:58 p.m. on a SATURDAY!!! Wow!

I asked if that center saw patients because it wasn't totally clear from the website if they took "walk ins" (as in, coming to them, instead of them seeking you out). This is his response:
Hi Kelly,

Yes, of course I see patients. I'm especially interested in people with Crohn's Disease.

Please call my office and make an appointment

Best Wishes!

Dr Rubin
(phone number)

This looks promising. A while ago, before my surgery, I was looking at how the countries hospitals were rated based on particular diseases. UCLA was the #1 in digestive diseases!! When I was looking at this site, it shows that this center works with Cedars, UCLA and something called the CURE Foundation (assoc. with veterans).

I'm going to do some more checking, but I think I'll make an appointment on Monday. :)

Thanks for all your prayers and good wishes. I know I've said this before, but you, my support, are amazing. YOU keep me positive and I'll never be able to express enough how thankful I am for you all. ((((((GROUP HUG)))))) :)

Hugs,
Kelly :)

[grybai]

Somehow I missed that post, though I did read something on Laura's livejournal. I'm glad about the good news and hope it works out well!

[poofy]

I havent replied to one of your post before, but I will pray that you will find a really good doctor. Its very hard to find one I know.We had some terriable instances caused by bad doctors in our famiy. And if one of the family goes to the hospital we take turns staying with that person at all times and grill doctors and ask all kinds of questions. You have to , to get the right kind of help. I pray I will never have to go to the hospital or have to have a doctor take care of me like some others have had.
I had a cracked vertabrae in my neck was really bad, I didnt know how I got it till my daughters told me. I had passed out and hit my head they took me to the hospital and the doctors said nothng was wrong. A year later it was like a melon on the back of my neck, went to another doctor, and she asked wheni had the car accident..ummm. any way, they said they would have to cut my throat and go thu there to the back and fix it..I said no way. I putit in Gods hands and today I have no cracked vertabra, it woud have been wrose if i had let them do that. God has been very good to me and kept me healthy and away from docotrs and i pray for the same for you.

[G535]

My mother had Crohn's Disease, she didn't develop it until in her seventies which the doctors said was unusual as it is normally a younger persons' disease. Finding a good, understanding doctor is the best thing you can do. Good luck. :)

[Daisy and Delilah]

Dear sweet Kelly, it seems finding a good, dedicated doctor these days is almost impossible. It's so sad. I often wonder how some of these people got through med school and it's pretty frightening to think about it. Having a chronic illness, like you do, is exhaustive enough without adding unwanted frustrations. With the high cost of "anything" medical these days, you would think you'd be somewhat getting what you're paying for wouldn't you? Do you ever talk to anyone that is completely satisfied with their doctor? Do you ever wonder why this seems to be a so called epidemic in this country and no one seems to ever really question it? I am hoping and praying that everything gets better for you Kelly and I hope you know that all of us here at Pet Talk feel your pain. You deserve better sweetheart. You've been so patient through all this and we hope so much that your Dr. Rubin will be the doctor you've been looking for. Take care. {{{HUGS}}} as always:)

Love, Terry, Daisy and Delilah

[krazyaboutkatz]

Kelly, this sounds wonderful and hopefully they'll be able to help you and treat you with the respect that you deserve. Good luck and please keep us updated.:)

[shais_mom]

In my thoughts and prayers always.
Praying that this is the miracle you deserve.

[catnapper]

Wow, that does sound promising! Please keep us updated on what happens!

[Rachel]

Kelly, I am pleased that you have found another resource try. Remember that the real healing comes from the body itself and anything that you can do to reduce your stress is going to be beneficial. That may mean letting go of the disappointment and anger (although justified) at uncaring persons, whether they be personal or professional relationships.

Also to keep searching on your own, as you have been, to find any technique that will provide even an iota of benefit. Maybe keeping track of everything you eat to see if anything in particular is more or less tolerable. (You've probably already done that, but you never know when a connection may become apparent.) That support group sounded like an excellent idea. Did you go? What did you think?

[K9karen]

Kelly, I'm sorry I neglected to reply to your earlier link (it was around 3am). But my first thought was that you need to change doctors, a million times, if that's what it takes. I also was so upset and disappointed with my mom's care. Shre refused to change our primary doctor (hated him but dad loved him) when she started getting sick. He has no personality, is rude, hates to be questioned etc. He and my mom simply didn't hit it off at all because she felt entitled to ask questions and get answers. I finally took it upon myself to switch the family to another primary and he is the most compassionate, caring, sweetest individual. He will talk to you for an hour if he has to. I also changed orrhopedics 2x. before I found one (same wonderful personality) who immediately realized my agony and immediate need for surgery or face paralysis. My theory is that it's MY body and I have the right to know everything. I've noticed that a lot of the younger doctors have better bed side manners these days, but maybe I've just been terribly lucky lately. I'm so glad you decided to ditch the jerk and find a doctor who, not only replies to you on a weekend (!) but invites you to make an appointment and is interested in helping you. I hope he works out and that he gives you good counsel and comforts you. So far he sounds like an ace.
ps.. I think "Bedside Manners 101" should be mandatory

[NoahsMommy]

Thanks so much for the support, guys! :)

Alexa...thanks, hon. What is your LJ name? I'll add you!

Poofy...that's so wonderful that you've been healed. Praise God!! :) I'm glad you're out of pain, that sounds horrible.

I agree on the hospital thing. My mom stays with me now after numerous issues that have come up with our local hospital. I'll now ONLY go to Cedars-Sinai as their care is excellent. Its so sad that I'll drive an hour out of the way just to get CARE. :( :rolleyes:

G535...I'm sorry to hear your mom has crohn's. It is unusual to develop it that late. How is she? Is it active?

Crohn's is now becoming a much more "younger person's disease" which ISN'T good because it hurt developing organs and body functions. :( My heart aches for the children that get it. :(

Terry (Daisy & Delilah)...Thank you so much for your kind words and support. I hope you're feeling OK. ((((hugs))))

I agree, its VERY hard to find a good doctor. I do have a wonderful internist, but he too recommends I stay with Cedars. :( Hopefully my specialist will read my email/letter and take this seriously.

Tracey, Stacey & Kim...thanks, honies! (((hugs))) :)

Rachel...the support group is tomorrow evening...and my mom is going with me. I think it would be nice for her to see other people that deal with Crohn's and maybe meet the support of other patients.

I do keep a food (and symptom) journal and its a VERY good idea. I actually have it online and its viewable to a few close friends so they can help me spot trends. :)

Your suggestion on keeping my stress low is a very good one too. I'm considering going back to my therapist. He always was VERY good at keeping my stress in check.

Karen...I agree...the younger doctors I've dealt with have been a lot nicer to me. Bedside Manners are so important...why don't they get that? They should be patients themselves...jerks!

I'm so glad you've found the right doctor for you. Its like anything, really...you have to find what's right for you in all things.

Hugs to you all. :)

[K9karen]

There was a movie out a long time ago starring William Hurt (I forgot the name of the book) who was a miserable, cold doctor who developed throat cancer and for the first time in his life was a patient. It wasn't until he went through painful, demeaning procedures that he realized the error of his ways. After he recuperated, he went back to work a changed man, and also made it mandatory in his hospital for all residents to go through all kinds of procedures and tests so they could "feel" them for themselves. What a good idea. How's THAT feel, huh, doc?

[NoahsMommy]

Guess who got a call early this morning with an appointment for next Thursday???

Guess my email worked. If I don't like how he behaves, I'll move on to this new doctor.

Its my life and I'm done being the "nice patient".

:)

[NoahsMommy]

Originally posted by K9karen
There was a movie out a long time ago starring William Hurt (I forgot the name of the book) who was a miserable, cold doctor who developed throat cancer and for the first time in his life was a patient. It wasn't until he went through painful, demeaning procedures that he realized the error of his ways. After he recuperated, he went back to work a changed man, and also made it mandatory in his hospital for all residents to go through all kinds of procedures and tests so they could "feel" them for themselves. What a good idea. How's THAT feel, huh, doc?
I agree 100%!!!

"This weeks lesson is colonoscopy! Everyone change into these gowns..."

;)

[K9karen]

That's exactly what happened in the movie! Good luck on your appointment! That was pretty fast! Remember..it's YOUR body (and your money). And they're human beings, not Gods, although some think they are....