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?

@kanaazpereira

Hi @katie215,

I'm so glad you've joined Connect on behalf of your daughter – managing a chronic condition is a tough journey, but you don’t have to do it alone. I’d like to start by connecting you with other members who have experience with Crohn’s — either themselves or a family member. Please meet @bonitav @mswanda @kaycigirl @judylindholm @gillyk14 @thankful @spiderwebb @jay_baruch @guener @joannem @chicoco @gillyk14 @kaycigirl, @tracyann @1228angela @amyk811 @jkellyjones @lisa1965.
You can view their messages in these discussions:
– Crohn's disease https://connect.mayoclinic.org/discussion/crohns-disease-2ed085/
– Diagnosed with Crohn's but having weird symptoms https://connect.mayoclinic.org/discussion/diagnosed-with-crohns-but-having-weird-symptoms/

I'd also sincerely encourage you to view the Gastroenterology & GI Surgery Page on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ where you will find many videos by Mayo Clinic experts, discussing IBD, recent news, medication and treatments.

Here are some that might be of interest to you:
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/anti-tnf-agents-for-crohns-disease-1/
Dr. Sunanda Kane, M.D., discusses the efficacy of anti-TNF agents for Crohn’s disease.

https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/vedolizumab-safe-for-inflammatory-bowel-disease-1/
Dr. Edward Loftus, M.D., reviews a study in which researchers reported on the safety profile of vedolizumab (Entyvio)

https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/insight-into-endoscopic-balloon-dilatation-for-crohns-disease-1/
Dr. Kenneth Schroeder M.D., talks about Endoscopic balloon dilatation (EBD) as a recognized treatment for symptomatic Crohn's strictures.

@katie215, what concerns does your daughter have about Systemic Anti TNF Therapy?

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@kanaazpereira Replying to your question re daughter's specific concerns. The conflict between proposed Treatment for advanced Crohns and Whipples Disease with now neurological involvement are urgent and immediate. As she has been deemed a non candidate for bowel resection, and now moving to a more permanent cervical port for iv nutrition and medical delivery, we feel there is an urgent need for quality assessment, as in Mayo…as opposed to reliance on medicine in Croatia. We, her parents are Canadian but know Mayo fist hand with regard to our father in law many years ago. Sorry for long post and much appreciate your time an effort. K

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@katie215

@guener Your comments are most welcome and I thank you. One further question/request. Would you be able to share contact name, telephone, email of office responsible for inquiries such as mine outside the US. If I can facilitate some of the preliminary legwork for our daughter, she may be willing to return. Both she and we are well aware of the world renowned reputation of the Mayo clinic. As you have conceded, this case is very complicated and her health is now compromised severely. She has recently been discharged from the Rebro Medical Clinic in Zagreb, Croatia with recommendations. Now, back in Zagreb she will tomorrow have a cervical port installed for iv nutrition, as the central port installed at Rebro could only be used for one month. This new cervical port will be able to remain for one year. Since her husband is an RN, he will be able to administer meds at home partly. Before the Anti TNF medication for IBD begins, she will receive a drug called Meropenem as a precaution to treat the neurological Whipples Disease. Apparently the Anti TNF treatment can cause any kind of bacterial infection to run wild in the body. So, as you may detect we are very anxious and wish only the best outcome for our daughter. Any information you could provide would be most helpful. If you are not able to provide same, we understand. Than you so much for your time.

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@katie215 , I do not have any specific contact information about medical queries outside of country of origin, but you might contact your local consulate/embassy about your daughter's situation, especially if she is no longer a citizen of Canada. I do not know about dual-citizenship cases. The Mayo clinic folks on here may be of further help about international resources and for making appointments (getting referrals) from abroad for treatment there if that is what you decide. If your daughter is too ill to return to North America, they may provide some recommendation about European resources, but I don't know. When my mother was ill my father just flew her home on an emergency medical exit Visa (from Saudi Arabia) directly to Rochester based upon reputation of the Mayo clinic, and she was admitted.

TPN sounds favorable for getting your daughter the nutrition she no doubt needs to fight the infection and to bypass the gut in this case. Total bowel rest, or mostly so, will help alleviate the symptoms of IBD that are presenting in that aspect. It's probably a good course to treat the infection primarily now and defer any immuno-suppressant therapy until she is in a better state and can be closely monitored. I am no expert about CBD oil or cannabis therapies or how that can impact the immune system, but some people with IBD swear by the benefits — if you are willing to consider that route for symptom relief as a non-conventional approach under a doctor's supervision.You certainly have a lot to think about and hope you get as much good information and advice as you can from all sources.

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@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

@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.

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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

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.

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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?

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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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