Mayo or University of Chicago

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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/6/2010 6:59 AM (GMT -7)   
I am trying to be patient...I swear I am..but just in case this doesn't work..and I am still running urgently I am seriously considering going to get another opinion... I need this urgency controlled.. I need to get a life... I need to get a job.. I lost the one good job I had and with medical expenses I am freaking out.. I need to be able to leave the house for an extended period of time..

with that said...

any experiences with Mayo or with University of Chicago? I have already done University of Iowa and Mercy...I read your posts.. and I hear the second dr being dismissive because its "just mild crohn's" yet I lost weight.. have pain every day..and am still running like crazy to the bathroom..I know the antibiotic screwed things up... so I am waiting until things calm down from that.. just lining everything up..and need your input...

hugs and thank you 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- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
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.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/6/2010 7:06 AM (GMT -7)   
I have heard nothing but raves about Mayo. So if I had a choice I would go to Mayo. I think you need to slow down a little though. I know you are feeling bad, but give your body a chance to get the antibiotics out of your system. I really think between the antibiotics and stress that is really whats making you feel so bad. Also, when first diagnosed it takes a longtime to find what works best for you. Have you changed up your diet any yet? If not, you might want to take a look at the low residue diet. I live on this diet at all times, as it works best for me. But it is also a diet they use alot when people are flaring. You might want to google it and get some diet ideas. Are you on Probiotics yet? If not, you really should add those into your med mix too as we tend to have more bad bacteria in our intestines than good, and I am sure since you have been on antibiotics YOU really need them. Some of the brands folks on the forum use are VSL#3, Align, Culterelle and Florastar. I use Primadolphilis Fortify by Natures Way. You can find them in the refrigerated section of your local health food store. Hope this helps a little.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/6/2010 7:19 AM (GMT -7)   
I truly am just gathering information..I promise to slow down.. I have looked at my diet and changed it when this all first happened... I am on probiotics, that was added to the mix when I had to take the levaquin.

To be honest Nanners, your posts sort of scared me when you questioned the fact of being put into remission and pulled off all drugs.. and than to read Nicecupoftea's post and to hear she went untreated for so long because she only had " mild crohn's" My doctor sounds the same way...he wants me off medication and I am not even better yet.. It concerns me greatly because I just don't think I should be having this much diarrhea..and pain.. it seems the pain gets worse , not better. When I tell the dr this, he gets dismissive. I admit that bugs me.

But I know you are making valid points as well.. the levaquin has done a number on me, I am still on prednisone and in two weeks will be adding Pentasa. Maybe I will feel better... but I am afraid that I get better, than he will yank the meds and I end up flaring and do this again. Yes , that is stressful for me.. I am trying to take this one step at a time but you have to understand. I have had medical mysteries for ten years. For ten years I have been in hell. I almost died when my daughter died. I have had numerous things wrong and I don't trust doctors. They don't seem to truly care about what is going on..and now I am diagnosed with Crohn's and I feel lost. A good doctor would not have me feeling lost, would they?

thank you for letting me get that out...hugs
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- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
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.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/6/2010 9:37 AM (GMT -7)   
First off you have me totally mistaken with someone else. I am one of the biggest proponents on this forum of taking maintainence meds because I can testify to the fact of what not being treated can do. I am in remission, but its because I am successfully maintained with the sister med to Pentasa called Asacol.

I do agree that if your doctor is telling you that you don't need to take meds, he is an idiot in my eyes. So in that case, do seek a second opinion. Have all your records with you as that will help not to have to do a bunch a repeat tests, though another doctor may want to do a colonoscopy to see "for himself" whats going on in there. You also have to be your own advocate. Tell this doc if he tries to take you off meds, that you have a family history of this disease, and for your own peace of mind you prefer to stay on the meds. I doubt if the Pentasa works, he will take you off it. If it ain't broke don't fix it is my opinion. Also, I can testify to the fact that there are GOOD doctors out there, you just have to find the right one for you. But I would give him and the Pentasa a chance, if you don't start feeling better and he continues to be dismissive, then DO dismiss him and find another. Sometimes with this disease its miserable because it just takes time for our meds to kick in and in the meantime its rough. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 5/6/2010 9:44 AM (GMT -7)   
You've chosen two excellent gastro departments. I am partial to Mayo in Rochester, MN as that is where I was Dx'd and where I had my resection - and where I went when my Crohn's returned after a 20 year remission and where I will have my next Crohn's surgery when that time comes, if it comes. Mayo is a 12 hour drive, one way, for me.

We had a couple of crohnies in the forum in the past who swear by Dr Hanauer at U of C, Northwestern.

Boy! If you have gluten intolerance you CAN NOT AFFORD to stray from a gluten free diet!!!! My brother-in-law is in the hospital now and will be for at least another month suffering from the effects of long-term, unDx'd Celiac disease. Just a week ago today they did not hold out much hope that he would survive. His family was called in the middle of the night. He has diabetis due to untreated Celiac for so long. They are still somewhat concerned about possible kidney failure. He is down to 110 lbs from his lean, hard, healthy 180 lbs.


My computer says I need to upgrade my brain to be compatible with its new software.

Post Edited (CrohnieToo) : 5/6/2010 10:48:47 AM (GMT-6)


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/6/2010 9:57 AM (GMT -7)   
Time for a new doc June.

Courage and hugs,
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/6/2010 11:53 AM (GMT -7)   
Nanners.. I am sorry.. that is what I meant. You are against him pulling me off of meds if and when i go into remission...you do not think crohn's should be left untreated..he has reiterated to me this week that his goal is to get me off of all meds.. he does not believe in treating Crohn's with maintenance.. only the flare ups.

i am so sorry if i upset anyone.. i am just trying to sort this out.. i am very sorry.

I do not stray from the gluten free diet at all... it causes havoc with my system and takes me down...I have been strict gluten free since April 2009. Even my family is gluten free now.

hugs to all.
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- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
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.


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 5/6/2010 12:00 PM (GMT -7)   
I have to say that it takes some time for meds to be effective, including probiotics. I agree with Nanners to go with low residue while flaring. Fiber will just keep things moving too much. At least that is what works for me. The more I eat of fiber, the more I poo. Uncooked veggies are for only when I am feeling great with no stomach issues. I use VSL #3 and think it has worked well for me. It is the strongest probiotic you can get and is for people with inflammation in the small and large colon. Antibiotics really messed up my system too, they do nothing but give me diarrhea. Good luck to you. It does get better in time, just take it easy. That's all we can do. Take good care of yourself
diagnosed 1/09 with colitis location: sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/6/2010 2:05 PM (GMT -7)   
I see a doctor who is supposedly top 5 in the Nation at the University of Chicago. His Name is Dr. David Rubin.

He is definitly a good doctor. He does recommend surgery a lot if he feels it is needed but says "Tests" means nothing. It's all about how the patient is feeling. But he needs 100% honesty and feels it will work if you accept it. He loves working with others if they are truly ready to do what it takes to get better. He doesn't believe in pain. He always says "It's 2010, and you have a treatable disease"
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Current: Methotrexate Injection, Entocort EC, Vitamin D, Fentanyl 25mcg / 72hrs - Zofran - Folic Acid
Currently On SSDI


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 5/6/2010 2:21 PM (GMT -7)   
I've had nothing but good experience with Mayo. There are a multitude of hotels in town that you can stay at, almost all of which have shuttle services to the clinic. There are also taxi companies, so if they don't have a shuttle they can call a taxi for you. If you're thinking longer term, there are plenty of smaller towns nearby that have lower housing prices, and even Rochester itself isn't bad.

anyway, i can tell you more about the area later if you're interested. The staff at Mayo has been great to me. They are intimately aware of all the various hardships of Crohn's, and are very understanding. They are highly skilled, and I wouldn't want to be anywhere else. As a large institution, Mayo constantly has clinical trials going on, so if you're unable to pay for treatment, that's one option. There are also several different funds set up to cover people like us when we get hit hard.

As others have said, monitoring your diet carefully is immensely helpful. It won't always stop a flare entirely, but it can alleviate some of the pain, making a flare easier to bear.
Diagnosed with Crohn's late December 2004. Controlled but not in remission via ABT-874 (700mg infusion every 4 weeks) and Azathioprine (50mg daily).


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/7/2010 6:30 AM (GMT -7)   
My doctor is at U of Chicago (Russell Cohen) and I've been going there since 1978 - it's one of the premier treatment centers for crohns. Obviously Mayo is at the top the list as well. They're both in the top ten rankings for gastro. Given your circumstances June I'd try the one closest to where I live first. I'm sure they both have programs help out folks with insurance/payment issues. Pick up the phone!

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 5/7/2010 1:14 PM (GMT -7)   
I saw a doctor at the University of Chicago when I went to college there. Her name was Dr. Harrell, and I have nothing but nice things to say about her. She was kind, understanding and easy to get in contact with if I had a problem- also her nurse Mary was the best nurse practitioner I've ever had. She would call me weekly just to see how I was feeling. :)

Obviously, they're both wonderful options. Just my two cents.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Off every med while the doctors contemplate my diagnosis.


*Bibi*
Regular Member


Date Joined Mar 2010
Total Posts : 49
   Posted 5/7/2010 2:41 PM (GMT -7)   
Mayo is fantastic. They know so much about all of the medications, plus they run trials on new meds constantly. I have been going there for about 4 years now, and they have been able to help me so much. Even their nurses are fantastic -- I live 11 hours away, so I usually only go there once a year, and if I need any answers, they are a phone call away!

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 5/8/2010 7:27 AM (GMT -7)   
To h... w/your gastro. If he/she won't script maintenance meds after surgery have your family doctor script them. When I had my resection I was told I had a 60/40 chance the Crohn's would return eventaully. When and how soon was anybody's guess. With a 60% chance it would recur who wouldn't want to be on maintenance meds??
My computer says I need to upgrade my brain to be compatible with its new software.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/8/2010 7:39 AM (GMT -7)   
AMEN C2!!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

sno92c
Regular Member


Date Joined Sep 2009
Total Posts : 78
   Posted 5/13/2010 8:42 PM (GMT -7)   
I was up at Mayo for a resection last September, paid lots of money and now I'm sick again. It's a good place but they couldn't help me much. Make sure your insurance covers a lot because it can be very expensive. I had to get a loan out to pay my part.

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 452
   Posted 5/13/2010 9:33 PM (GMT -7)   
debilitated  and Cleo
I didn't know there were more crohnies living so close to me :)
I see Dr. Hanaur from University of Chicago and have been for quite some time. I've been on pretty much every medicine out there and now nothing is working for me.
One of the cool things about going to University of Chicago is they are a research hospital. So you get to go on free trials. Unfortunately they didn't really work for me.
I am now scheduled for an ostomy on June 11th :(
 

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 452
   Posted 5/13/2010 9:41 PM (GMT -7)   
oh I forgot to add. University of Chicago does have financial assistance available. You just have to apply and submit some info.

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/14/2010 9:43 AM (GMT -7)   
Brian, I had my ostomy surgery U of C (try to get Dr. Hurst as your surgeon) and I can safely predict that once you're on the road to recovery you're only question will be "why didn't I do this sooner".

Advice: when you're told to get up and walk after the surgery --- get up and WALK. It's your fastest route home. I walked so much the nurses would stand in the hall with their mouths open and Dr. Hurst finally told me that there was such a thing as overdoing it. Good luck!

sno92c
Regular Member


Date Joined Sep 2009
Total Posts : 78
   Posted 5/14/2010 3:17 PM (GMT -7)   
My next step is an ostomy and lots of people have told me that my life will be much better. I'm still very nervous and dreading having a bad forever. I just need to get over it I guess.

I did apply for financial assistance and still paid $12000 out of pocket. Crazy!
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