Best IBD Centre in US--Your Recommendation for Young Adults

[happy]

Hi,
My young adult son needs a diagnosis. He is also a professional beginning his career. We are thinking of trying a week-long stay at the best US IBD centre for young adults to see if he can get a diagnosis and treatment started. He has had IBD-like symptoms for about three years, with the past year being the worst.

Top and bottom scopes gave 'mild colitis-perhaps'. Lab work shows nothing that can be treated. No small intestine imaging done or in the works. "Try Low-FODMAPS diet" has resulted in him being stuck in the elimination phase of the diet due to the severity of his symptoms. A three-month trial of Mezavant has not relieved symptoms of weight loss, bloody diarrhea, nausea, bloating, brain-fog, intermittent night sweats and intermittent joint pain.

(My scopes and lab tests did not show the severity of my disease either until I lost 60 pounds and developed blind spots in my eyes from anemia. I do not want him to end up like that.)

Please send us your recommendations. Thanks so much.

 

[Scipio]

There are many fine IBD centers in the US. Off the top of my head I would suggest:

Mayo Clinic (Minnesota)
Mt Sinai/ NYU (New York City)
Univ. of California, San Diego
Univ. of California, San Francisco
Cedars-Sinai Medical Center, Los Angeles
Univ. of Chicago
Univ. of Miami
Dartmouth-Hitchcock Medical Center, New Hampshire


And you don't even need to leave Canada if you don't want to. Mt. Sinai/Toronto is also excellent.

 

[Manzyb]

UCSD is absolutely amazing. University of San Diego. Doctor Sandborn and his team are wonderful. I was so happy to find them when I lived there, and so sad when I left, because I’ve not been able to find a good doc where I am now in Florida.

 

[aypues]

UCSD. so happy I live in town and have the best right here. My doctor, Brigid Boland, trained under Sandborn...they all did there at UCSD's IBD center. You can see him once but thereafter you deal with a NP, so didn't want that and prefer a female doctor anyway.

 

[afidz]

People from all over the world go to Cleveland Clinic. Their IBD center is one of the best. I didn’t go to the IBD Clinic, but I had to have surgery there this past fall. It was by far the best hospital I’ve ever been to. If I ever needed to go there again, I wouldn’t hesitate in a second. The hospital runs like a well oiled machine, the staff is incredible kind and caring, the doctors are knowledgeable. The place is perfect

 

[DCCrohns]

Having been enrolled in a clinical trial at Mayo (and traveling there six times for surgeries, visits, etc.), I can say I was very happy with my care there. My doctor recently moved from Mayo to Cleveland Clinic, which I also know has a phenomenal IBD team. Best of luck!

 

[Mountaineer01]

While it's natural to want to go to the best treatment facility, one thing my Crohn's diagnosis has taught me is there is a lot of trial and error and no two people have identical responses to treatment. Also, one week isn't likely going to be enough time to get a definite diagnosis, let alone know if a treatment is going to be effective or not.

Humira has helped me immensely, but it took about six months before I really started feeling like myself again. Before that, it was about a ten year process of ups and downs. I went to several hospitals (including Johns Hopkins) before I got a definite diagnosis.

 

[happy]

Thanks everyone for your replies. They are very helpful. I have been away so have been delayed in responding.
My son has recently seen two GI's here at home. Small bowel imaging is finally scheduled for September and he has a prescription for Budesonide to try from one and some kind of medication for severe IBS from the other. He is going to try to hold off on taking either medication until the imaging is done if possible. One GI says, "I don't know what is causing his symptoms", the other thinks he has some kind of bowel flora imbalance and does not have much hope that his symptoms will be treatable as he has failed the LowFodmaps diet. He believes that my son may have had some sort of infection that triggered the problems and that although now there are no signs of it, his brain keeps sending him pain, cramping and bloating signals. The medication is supposed to interfere with those signals. I am not convinced of this theory and I think telling a young man that this will be his quality of life forever is a bit harsh. The doc also suggested medicinal cannabis if nothing else works; however, this could cause him some problems at the Canada/US border. Some testing for malabsorption is also being done and a liver US.

We have decided that if there are no positive findings after his SI imaging in September we will pursue an assessment at a big US centre in October. My son recently had one good day. He said it was amazing, but it also showed him how poorly he has been doing. He feels he has just gotten used to feeling bad all the time. Again, thanks for your help.