Systemic IBD, Systemic Anti TNF Therapy

Posted by katie215 @katie215, Sep 2, 2018

Age 45, advanced Crohns, now Diagnosed with Systemic IBD (irritable bowel disease) complete with brain lesions, left sided partial paralysis, vision difficulties. New treatment proposed is Systemic Anti TNF Therapy. Grim outlook. Anyone here experienced similar or same symptoms and/or treatment?

@katie215

@guener Than you for your interest and comments. Encouraging we are going in a forward direction at least. @kanaazpereira has so kindly sent along a link to which I will peruse and inquire after today's holiday. I do know our daughter remains a Canadian citizen. Your thought on the possibility of Mayo having European resources may be helpful in the event she chooses not to come to the US or in the event she can't be stabilized to travel. Not being a US citizen may complicate travel directly to Mayo, however you've given plenty of food for thought and resources to explore. An aside, I came to Mayo Connect the other evening to research my own spinal stenosis issues and fir some strange reason, providence perhaps, I've happened to find this very valuable information for issues vastly more important than my pain.

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@katie215 , In addition to Mayo Connect, you probably should check out the Crohn's and Colitis Foundation of Canada website at http://www.crohnsandcolitis.ca as another resource for information on IBD and especially for contemporary research and location of support communities in Canada.

Hi @katie215,

Mayo Clinic specialists have experience collaborating with doctors all over the world. Patients often receive a diagnosis at Mayo Clinic and then receive subsequent treatment in their own countries. The Clinic has several offices for international residents who wish to make an appointment; representative offices are located in:
-Canada
-Central America
-Colombia
-Ecuador
-Mexico
Although you mentioned that your daughter lives in Croatia, if you'd like to find out more about visiting Mayo Clinic you could speak with the patient advocate located in Canada – call 807-346-2218 – messages are checked daily and calls are returned in the afternoons and evenings. This representative does not provide medical advice.

Mayo Clinic also cooperates with independent referral organizations that facilitate the referral process for patients to all its campuses. These recognized referral facilitators have worked with Mayo Clinic to establish a reliable process for assisting patients who wish to visit Mayo Clinic for health care services.
Here's information about the Independent Referral Facilitators in Canada: https://www.mayoclinic.org/departments-centers/international/locations/independent-referral-facilitator-canada

Not to inundate you with more reading, but you can find all the details about the appointment process for international patients here:
https://www.mayoclinic.org/departments-centers/international/appointments

@katie215, I wish you and your daughter all success; please keep me updated about her progress, and more importantly, feel free to lean on the Connect community for support.

@kanaazpereira

Hi @katie215,

Mayo Clinic specialists have experience collaborating with doctors all over the world. Patients often receive a diagnosis at Mayo Clinic and then receive subsequent treatment in their own countries. The Clinic has several offices for international residents who wish to make an appointment; representative offices are located in:
-Canada
-Central America
-Colombia
-Ecuador
-Mexico
Although you mentioned that your daughter lives in Croatia, if you'd like to find out more about visiting Mayo Clinic you could speak with the patient advocate located in Canada – call 807-346-2218 – messages are checked daily and calls are returned in the afternoons and evenings. This representative does not provide medical advice.

Mayo Clinic also cooperates with independent referral organizations that facilitate the referral process for patients to all its campuses. These recognized referral facilitators have worked with Mayo Clinic to establish a reliable process for assisting patients who wish to visit Mayo Clinic for health care services.
Here's information about the Independent Referral Facilitators in Canada: https://www.mayoclinic.org/departments-centers/international/locations/independent-referral-facilitator-canada

Not to inundate you with more reading, but you can find all the details about the appointment process for international patients here:
https://www.mayoclinic.org/departments-centers/international/appointments

@katie215, I wish you and your daughter all success; please keep me updated about her progress, and more importantly, feel free to lean on the Connect community for support.

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@kanaazpereira One further question: Before I begin my reaearch tomorrow with phone calls etc, are you aware if Mayo will contract to assess review all existing tests, reports and history and offer recommendations (for a substantial fee). It seems to me many years ago we accessed this service at Mayo for a family member and received a recommendation. Perusing the Mayo links today I just can't seem to find anything. Our daughter is very astute and has every detail of her condition on file, including scans that would be easily transmitted in today's online world. Of course this will be one of my questions when I call the Canadian contact tomorrow. Again thank you kindly for all of your responses these past couple of days. In our humble opinion, if Mayo can't help there is no help in thiss world to be found and we will know we, as her parents, have done our utmost to help.

My daughter has started infusions of entyvio for Crohn’s and has read that people experience hair loss even though it is not listed as a contraindication. There is no mention if it is total hair loss or hair thinning and if hair will regrow when the infusions stop. Has anyone experienced this?

Hi @sandyjr,

I'd sincerely encourage you to view the Gastroenterology & GI Surgery Page on Connect,
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ where Mayo Clinic experts talk about IBD, recent news, medication and recent therapies.

Here are two videos that might interest you:
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/vedolizumab-safe-for-inflammatory-bowel-disease-1/
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/me-my-child-and-ibd/

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