Saw new GI today...We have a plan!

Meet new GI today, who was great. He reviewed all my 20+ yrs of recorded BEFORE I got there so he was ready for me. Basically, he says I am very drug resistant, and time to try Entyvio. He will bridge it with Humira for 60 days before stopping the Humira. He just doesn't want to talke a chance that Humira is doing some good. Also, he started the referral proces to send me to Mayo clinic in Rotchester MN to a Dr he works closely with on patients like me. He wants a second opinion on his approach. He says there is a group of Crohn's patients that the meds do not put into full remission, they just seem to maintain it to a slow progression and he thinks I might fit that group,

He also, felt that I was much over inflamed than I might think. He pushed around my belly at the Antamossis site and I about threw up on the table! His point was my inflammation was doing a number internal and I was not even that aware! He said we need to get aggressive to try to prevent a surgery, if possible. He also knew my history of getting very sick on the TNF meds and methotrexate so he knows he has to be careful. He said it is a delicate balance.

He also set up a lot a blood tests, a bone density test and a follow up in one month. The Entyvio paperwork was started and the referral to Mayo.

Wow, it was so nice to meet a Dr who was prepared for you and understood why you were there. It made for a very productive meeting. BTE, this group did testing for Entyvio, stellar a, and has two more neighborhood tested that are pill form and work. He said the issues is finding the right dosage. His point was there are more meds coming to help. He concern was all my other medical issues and medications and the issues they cause with interactions. He said, Brain and Heart medications take priority over crohns in medication protocol, except for a cute issues.

This guys knew his stuff. there are good Drs out there!

I'm so happy for you that you found a dedicated doctor who cares about you! What great news! I hope he can find a treatment regimen that will work well for you. You know you have a good doc when they are welcoming of second opinions and don't have such a big ego. Glad you can get the opinion from Mayo clinic too. You have been through so much stress....hopefully things will start to get better for you!

Yeah, that does sound like a very good doctor. Thorough, knowledgeable and has good people skills.

I'm pretty sure I fit that group of Crohn's patients as well.

Good luck with the Entyvio.

Congrats on find a good GI!! Always a very exciting when that happens.

My referral is already set up at mayo clinic. I go may 15th. They said to plan on 5 to 7 business days for the visit, tests, procedures and consults. They said I meet with the first GI at 730am for interview and full review of my file. Then they go from there with tests. I wonder if they will do a colonoscopy.? They told me to fast the day before, but no prep.

I hope I make it till then with no major problems

mirowpl said...
Hey NCOT, how have you found the Entyvio? Has it helped?

Not as much as I would have liked :-/

It apparently brought down my calprotectin from nearly 1900 to under 600, so there's that. But in terms of symptoms, it's almost impossible to tell. I don't have a colon so I can only really compare myself to the j-pouchers, because they don't have colons either: even in the best case scenario we are never going to have normal stools. But the j-pouchers on this site who have had a good outcome appear to be doing a lot better than me!

I'm just dealing with annoying proctitis-ey symptoms really: passing little, often acid-ey, bits a time. Occasional passing of blood. The other main symptom is LRQ pain. I have noticed my stool is much more voluminous and less splattery after a large bowl of oatmeal (with oats soaked the night before), but insoluble fibre slays my stomach if I eat too much of that. I really ought to look into taking a soluble fibre supplement, cos at some point I'm going to want a change from oatmeal for lunch.

Sorry, I kind of went on. I hope you will be okay until your Mayo appointment.