Thanks very much for this all important information! The team was interested in my details at the start, but now they are interested in getting me on the biologic despite the details. I just want to stop bleeding. It's been going on for over two weeks despite the prednisone, although the steroid helps a bit. I'm out of my head between the bleeding, steroids, and the sinus infection I got from being dehydrated. I'm terrified of going on a biologic. Thank you so much for your help, I really need the cheering and support!You got this man!
You're doing the right things
You're asking the right questions, and it looks like your care team is putting in work
... pretty damn cool how they are stepping up for you and expiditing testing in these trying times!
please be sure to thank them for their efforts!
It would help them a bunch if you logged some information about your symtoms
If you're like me (and I'm not saying you are, you sound pretty "together" ) I have trouble remembing things well, and just make a total hash of it when they ask for specifics
Maybe make some notes would help make most the most out of your face to face time
(good docs like data!)
for starters, your symptoms/bleeding/just general symptoms
a diet log (what you eat/how well you tolerate it)
med list / how you're taking them / well they are working, what (if any) side effects you're having
anything you're doing at home (supplements/exercises/p.t./
please include anything that's helping calming for you like meditiation/relaxation (things that are helping you cope) etc
this is critical, as they can help you a ton on this topic and other mental health impacts of this condition
.... you just gotta ask ...
... sucks, because this is a tough thing to do, ( ihad a really hard time doing it myself)
however, it has made ALL the difference day to day, and went along way towards getting staff on board with ,my approach/goals
I had no idea how much it would help just to have that resource advocate for me when things werent going well at the clinic and they really helped when communication got rough
So cool that they are getting you in!
Make the best of this opprotuninty!
Follow all the prep instructions to the letter!
there's a lot you can do at home to prepare for this procedure
the better you prep, the better this testing group will go, and the better the data will be
You're gonna some good data from this, and that;s going to help guide your care team on the most sensible path forward
Goood luck, and post up any and all questions you have
There's some super smart folks here that live this ... they have knowledge and perspective doctors just ... don't ...
p.s. don't lose any more weight, boss
check out the diet supplement area of the board for ideas
... hell ofa lotta awesome information in there
It's where many of us have found really good ways to build an individual, targeted nutrional plan that help us cope
You got this man, just stay the path!
Yes, I read the story about this man a few months ago and ordered some probiotics. He's amazing. I don't understand why some people figure it out and others don't. What I don't get is that some make it work somehow but the answer seems so elusive. I'm happy you were in remission for 3 years! It sounds like stress could be the source of your need to go back on the biologic. BTW, I didn't see the diet itself on the page you linked.This helped me get in remission for over 3 years once, no meds.....but then the war and divorce and ya back on biologic. It's a strict diet at first but felt so healthy.....I should try again.
I see, I'll check out his books! Good luck getting strong again. I'm trying - taking prednisone right now and so sick from it I'm but dr says to stay on it. Going out of my head.Ya I've bought three of his books. Sugar is chips are my down fall addicted bad to those. Hopefully I can get strong again. The diet wasn't on the page sorry it was the book. Sort of European diet.
Thanks. I really appreciate your support, understanding and camaraderie. This sure is trying!Ya that bites....Dr might put me on steroids until I'm able to get approved for Entyvio again. The military VA always takes forever but worth it since it's paid for 100%. Haven't been on steroids for years.....I'm horrible on them with no sleep and anger.....ya not fun for sure. Hopefully you wont have to be on prednisone for too long. Take care.