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katie215
@katie215

Posts: 12
Joined: Sep 02, 2018

Systemic IBD, Systemic Anti TNF Therapy

Posted by @katie215, Sun, Sep 2 7:11am

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?

REPLY

Hello @katie215 — Welcome to Connect. I know you have a lot on your plate and are trying to find some answers. Connect is a good starting place. You might want to read through the list of discussion in the Digestive Health Group to see if you can find members that share some of your symptoms. Here is the link to the group:

https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/

I'm also tagging our Moderator Kanaaz @kanaazpereira to see if she might have some suggestions for you. I did find some information that may be helpful for you on anti TNF therapy.

Anti-tumor necrosis factor treatment restores the gut barrier in Crohn's disease (2002)
https://www.nature.com/articles/ajg2002518

OP013 HLA-DQA1 contributes to the development of antibodies to anti-TNF therapy in Crohn’s disease FF (2018)
https://academic.oup.com/ecco-jcc/article-abstract/12/supplement_1/S009/4807570

DOP037 Postoperative anti-TNF therapy is associated with a significant reduction of both endoscopic and clinical recurrence following surgery for ileocolonic Crohn’s disease: results of a prospective nationwide cohort conducted by the GETAID chirurgie group (2018)
https://academic.oup.com/ecco-jcc/article-abstract/12/supplement_1/S056/4807997

@katie215 do you have any specific questions or concerns about the anti TNF treatment?

John

Liked by katie215

Thank you so much for these references John. I will surely read. The patient is actually my daughter, A Canadian, now living in Zadar, Croatia. The treatment I mentioned is what is being proposed by physicians there. May I ask you…does Mayo Clinic do this kind of evaluation and treatment in the US?

@johnbishop Am so new here. Did you see my note above, by any chance.

@katie215

@johnbishop Am so new here. Did you see my note above, by any chance.

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Hi @katie215 – I did see your note. Working from my phone right now and not too good at it. Will post Mayo contact info when I get back home. @kanaazpereira can you answer @katie215’s question?

@johnbishop

Hi @katie215 – I did see your note. Working from my phone right now and not too good at it. Will post Mayo contact info when I get back home. @kanaazpereira can you answer @katie215’s question?

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Hi @katie215 – sorry I didn't see your question sooner. When I saw it I was using my cellphone and I'm not much good at texting answers ☺ Mayo Clinic has an excellent IBD care team. You can read more about the services and make an appointment from the following Mayo Clinic web page. There is contact information for each of the three locations near the bottom of the page – Arizona, Minnesota, and Florida:

https://www.mayoclinic.org/diseases-conditions/inflammatory-bowel-disease/care-at-mayo-clinic/mac-20353325

John

@katie215

@johnbishop Am so new here. Did you see my note above, by any chance.

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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?

@katie215

Thank you so much for these references John. I will surely read. The patient is actually my daughter, A Canadian, now living in Zadar, Croatia. The treatment I mentioned is what is being proposed by physicians there. May I ask you…does Mayo Clinic do this kind of evaluation and treatment in the US?

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My apologies for the multiple posts @katie215, but I wanted to answer your question: "Does Mayo Clinic do this kind of evaluation and treatment in the US?"

Mayo Clinic in Rochester, Minnesota, has been recognized as the best gastroenterology and GI surgery hospital in the nation by U.S. News & World Report. Each year, Mayo Clinic doctors diagnose and treat more than 9,000 adults and children with inflammatory bowel disease, including Crohn's disease and ulcerative colitis. Mayo Clinic specializes in helping people with severe symptoms that haven't responded well to treatment in the past. You can read all the details here: https://www.mayoclinic.org/departments-centers/gastroenterology-hepatology-digestive-care/sections/overview/ovc-20348241

@katie215, Your daughter's situation certainly sounds complex and serious, I am sorry to hear it. As has been mentioned, Mayo has an outstanding team of IBD specialists and other great physicians in all areas of healthcare. I'd certainly recommend them, even though I am only familiar with other family members having been treated there (in Rochester). As to the anti-TNF therapies, I can relate by taking Humira (adalimumab), and it has been quite effective for me in terms of reducing systemic inflammation that resulted in diarrhea, weight loss, joint pain, and colonic bleeding. Not everyone responds to one biologic drug the same way, and it can be trial and error to find one that works for somebody. Also, each biologic drug can present its own side effects, though I have had none on Humira. I'm not familiar with IBD having a relationship to brain lesions, since it attacks primarily the digestive tract but can result in other symptoms systemically (like the joint pain for me). In a complicated case with your daughter living abroad, it would be a good idea to get some other opinions, especially in Canada or the U.S. to follow up on care options and especially the brain/nerve injury, too. I wish your family success in finding working solutions for your daughter, and prompt relief in all aspects!

@guenther Thank you so much fir this information. What I neglected to add to my original post was met daughter's added complication of Whipple's Disease which is complicating IBD treatment. To my understanding the treatments conflict..in that treatment fir one exacerbates the other disease and vice versa. Hope I've clarified somewhat. It's a very serious situation and her being 6000 miles away isn't helping.

@katie215

@guenther Thank you so much fir this information. What I neglected to add to my original post was met daughter's added complication of Whipple's Disease which is complicating IBD treatment. To my understanding the treatments conflict..in that treatment fir one exacerbates the other disease and vice versa. Hope I've clarified somewhat. It's a very serious situation and her being 6000 miles away isn't helping.

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@katie215 , Well, Whipple's Disease sounds very difficult, too. (Looked it up.) The antibiotics for treatment of Whipple's could definitely impact the IBD symptoms possibly and potentially put the gut into risk while lowering immune capability alongside any biologic. You probably do need some specialists to coordinate her treatment for multiple conditions and to get the medications right for what works for everything. My mother got ill while abroad and had to come back to the U.S. for treatment at the Mayo clinic, and it was some weeks before she was able to return "home" overseas but was worth the time and effort to get the treatment. It could be a very difficult idea to decide its time to return, at least temporarily, back to North America for help. I wish your daughter success in getting through this all in the best way possible. And better days and less worry for you, too. There are great support groups on Facebook for Crohn's disease and Ulcerative Coltis, BTW.

@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.

@kanaazpereira

My apologies for the multiple posts @katie215, but I wanted to answer your question: "Does Mayo Clinic do this kind of evaluation and treatment in the US?"

Mayo Clinic in Rochester, Minnesota, has been recognized as the best gastroenterology and GI surgery hospital in the nation by U.S. News & World Report. Each year, Mayo Clinic doctors diagnose and treat more than 9,000 adults and children with inflammatory bowel disease, including Crohn's disease and ulcerative colitis. Mayo Clinic specializes in helping people with severe symptoms that haven't responded well to treatment in the past. You can read all the details here: https://www.mayoclinic.org/departments-centers/gastroenterology-hepatology-digestive-care/sections/overview/ovc-20348241

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@kanaazpereira I have just now read your reply with associated link. I wil surely investigate. @guener has been very helpful with pointing me ini the right direction over the past couple of days. Thank you so much.

@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

@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.

@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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