changing doctors again?

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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/18/2010 2:36 PM (GMT -7)   
I live in rural Iowa... near U of Iowa. I have been through the doctors at U of Iowa and was disgusted with the treatment. Moved on to Mercy GI and as many of you know am not happy. I was happy when he referred me to Mayo but now he seems to be in disagreement with everything Mayo says. I thought they would work together but now I just am frustrated and torn over what to do. I feel like I get more information from you ...and the Mayo doctors are in agreement with you the majority of the time.

I hate to switch again. Hate it. What would you do? I can check the Quad Cities or Cedar Rapids but wow.. to start again. Am I not being patient enough? I am still so nauseous and have pain from what I gather is residual effects from either Imuran or Pancreatitis. The entocort/prednisone combination is making my guts hurt so bad...this is the second time for entocort.. I am not sure I handle entocort. My joint pain is coming back stronger and stronger...The Mayo wants me on methotrexate or remicade. They feel that my inflammation/ulcers and joint pain warrant the meds.. my current GI seems to think that "i am not that bad , why do i have issues?" which leaves me feeling stupid and annoyed and crazy. I brought up the LDN, that was an epic fail with both the Mayo and my current GI.

I am sitting here today, thinking and discussing this with my hubby and I don't know.. I am scared to start over again. Short of moving up to being near the Mayo... what would you do?
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/18/2010 3:12 PM (GMT -7)   
I've no advice, June, because I'm not American, but here's a huge hug for you:

(((June)))

It would be easier to make these decisions if we didn't get so emotionally attached to hospitals and doctors... easier, too, if all the options were close to home...
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8545
   Posted 7/18/2010 4:11 PM (GMT -7)   
It's hard to know what to advise. I do feel for you in the sense of feeling annoyed that nobody seems to really give a fig if you get better or not. I've changed hospitals twice. The first time I let my dad talk me into it. We were positive at first but in the end the second hospital turned out to be no better than the first one. The second time we had moved house, so it made sense to switch to a local hospital. For a while I regretted the switch, but now I am glad I made it. Not just for travel reasons, but because I think this hospital has been somewhat better than the previous two.

I still wish that GI doctors didn't act as though pushing pills at you was the end of the matter. I know they can't work miracles, but they don't even seem to care whether the pills work or not. My current GP is the only doctor I've met with a warm bedside manner and it does make a difference. I feel like he actually wants me to get better. Pity he can't double up as my GI doc as well. That said, I do quite like my current GI, but in the haphazard manner of the NHS, she could be gone and replaced by a different doctor next time I go in. I hate that.

In the meantime, I think I'd go with the Mayo. It depends largely to what extent you can tolerate your current symptoms. I just learnt to tolerate my symptoms when the meds failed for me, but then again apart from late last year I haven't had much pain to contend with. I think if I was in your shoes I'd go for the Methotrexate or Remicade. In fact I will be going for Remicade soon - well, hopefully.

grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 7/18/2010 4:34 PM (GMT -7)   
junerainbow: gosh, sorry you don't feel well yet and are getting seemingly haphazard medical care. Are you guys relocatable? Can you both move jobs and family easily as well as financially handle moving expenses and kids changing schools? If it isn't too traumatic then it seems a metropolitan city would better serve your medical needs that rural Iowa. We have moved a lot in our married lives and it seems it takes a good year to find friends, feel settled and adjust to the new digs. I don't know how far away you are from major cities in the midwest but there have to be pretty good GI's that you can get to without having to move so far away. If you want some physician recommendations I can certainly email you. Take care, Barb
Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin.
 
 
 


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/18/2010 4:52 PM (GMT -7)   
We are definitely not relocatable....ten years ago we moved our whole life to Iowa.. before we knew I was sick. My oldest is a junior and I really don't want to do that to him.. I love the schools and the area...just struggling with the GI portion of my life.. I just don't understand why the doctors are not like the doctors at the Mayo...or why mine won't listen..

and nicecupoftea... you are so right.. I love my primary too.. he seems to get it.. but my GI is getting really weird..especially about questioning everything.. and making me feel crazy..I don't know.. he has really left me in a state of confusion...

with my joint pain.. and not responding to so many drugs.. I would think methotraxate or remicade..

hugs to you guys too.. thank you.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8545
   Posted 7/18/2010 5:13 PM (GMT -7)   
When you say "questioning everything", do you mean he's questioning you or you questioning him? If the latter, I think that can safely be put down to ego. Even in an age where doctors aren't omniscient gods any more, very few of them have ever learnt to relate to their patients as equals. For the most part, it's probably a cover up for simple frustration or embarrassment at not knowing. It's hard to admit you don't have a clue when you're supposed to be the expert. It then becomes only all too easy to blame the patient for having the temerity to continue being ill, make out it's all in their head, and hurry them out of the surgery as quickly as possible.

That's the lazy, dismissive but unfortunately quite common approach. If you are unfortunate enough to end up with a doctor like that, you have basically two choices: get them to take you seriously or change doctors. Neither are always possible to do.

Well anyway... On a more optimistic note, I hope Methotrexate or Remicade makes a difference for you! I do understand the frustration of not responding to drugs. I've been there, albeit over a much longer time span. Remicade is pretty much my last shot at finding something which actually works, too :-/

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/18/2010 5:48 PM (GMT -7)   
Its definitely the latter and yes.. he is making me feel bad for still being ill...or all in my head.. yes.. you got it. And when you mention the mayo.. wow..the look in his eyes.. at the beginning he was receptive but now, not so much. I try and be tactful when speaking about the Mayo.. but he knew from the beginning that I was interested in a team approach between the two of them.

hugs to you...I hope you are successful as well. =)
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/19/2010 12:32 AM (GMT -7)   
What about your primary care doctor treating you w/Remicade or Methotrexate under the guidance of the Mayo doctors? Maybe even start your first dose of Remi whilst at Mayo. Then follow up doses at home at directed by the Mayo docs under the supervision of your PCP.

Who is your Mayo gastro? I see Dr Tremaine when I go.
My computer says I need to upgrade my brain to be compatible with its new software.


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/19/2010 3:42 AM (GMT -7)   
I never thought of that. I see my primary on Friday and will run this by him. Thank you.

I have been seeing Dr Samuels and Dr. Loftus.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 7/19/2010 6:11 AM (GMT -7)   
I'd ask the Mayo doc if they have someone in your area that's worked with them before. Your current doc is probably over his head and won't admit it!

Good Luck
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 7/19/2010 7:57 AM (GMT -7)   
Changing doctors can be expensive and frustrating so we tried to stick with the doctors we had. But it was just postponing the inevitable. Now that I look back on it, I see how much time was wasted. You seem to know in your heart that the doctors you have are not working with you. It's not going to change.

The doctors we had at first were annoyed when I asked questions, especially about things I had read on the Internet. What were they afraid of? I guess they thought I was wasting their valuable time. The doctor that works with us now actually asks for my input. You might think our doctor is less educated on the subject but since no doctor knows the solution for each person, I know he is the smarter one. Keep looking.

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 7/19/2010 12:25 PM (GMT -7)   
The Mayo is willing to work with me from up there, or work with my primary. I think you are all right about my doc being over his head or a really big ego...

I think I am going to go with the methotrexate.. Mayo said injection only with folic acid...they feel that would help my joints...I am in so much pain today with my joints and I swear the entocort makes my belly hurt. I am tapered down to 20mg of Pred and its not doing anything for my joints. I am ready to feel better.

thanks so much..
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol.Nexium, Propranolol, Vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 7/20/2010 2:14 PM (GMT -7)   
I'd stick with The Mayo whether you find a local doc to work with them or not. If travelling is what was required to get better care, that's what I'd be prepared to do. Good luck!

firecracker1
Regular Member


Date Joined Apr 2007
Total Posts : 208
   Posted 7/20/2010 3:41 PM (GMT -7)   
I hate starting over with a new dr too. If you're not happy, though, find a new dr. In the past I've stayed with dr's entirely too long and regretted it. Also, I get more helpful info from my pharmacists and this forum than from any doctors.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 7/20/2010 3:46 PM (GMT -7)   
Do you really have to move close to Mayo to be their patient? Can you work with their team through a GP in your area?

I'm in Houston, with a world-class major medical center 1 mile away from my house, but I've had 3 GIs in 10 years. I'd be set if I had cancer or heart disease, but Houston is not a center for IBD. I guess U of I is not either.

Sorry you're still feeling so bad.

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 7/20/2010 8:18 PM (GMT -7)   
June, I'm sorry you're having to go through this as well as your pancreas issues. I'm in the same boat. I'm
really unhappy with my current GI. I spoke to my primary this morning, and she's of the opinion, that you
really must have a good relationship with gastro's and so does she. She needs to know that when she calls
them to discuss an issue, that she gets a response.
So even though I hate to start all over again, I'm going to, because I need to be comfortable, and so do you!
I hoping we both have some good luck....
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

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