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Systemic IBD, Systemic Anti TNF Therapy
Digestive Health | Last Active: May 3, 2019 | Replies (20)Comment receiving replies
@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.