Hospital

[Lynda Lynda]

The nurse practitioner at my gastroenterologist office took me off of my one 3mg Budesonide on March 26th and I have been sick ever since. I was just in the hospital for 3 days. Got prednisone in the hospital, no Budesonide. Was released from hospital with 40 mg of Prednisone each morning but that will soon change . Have had normal BM for 3 days . Just had Telehealth visit with my gastro. He will send a message through the patient portal on how I am to wean off my prednisone and to reinstate my Budesonide. He spoke about Stelara every 6 weeks instead of every 8 weeks. He spoke about surgery. I have stricture and inflammation in my terminal ileum and have Crohn's disease. I had a CT scan at the hospital and I'm not sure of the results. If my treatment does not work or go well after these changes, my Gastro has mentioned for me to go to the Mayo Clinic in Phoenix Arizona which is where I live. I truly feel like he's just trying to pass me off on another doctor because he does not want to deal with me, but that is not fact. As far as I know my health insurance does not cover Mayo Clinic, I will callMayo tomorrow. I have no money to pay for Mayo Clinic. I have to pay for the ambulance ride and 2 days of Hospital stay right now from my recent hospital stay. So, I will see how everything goes over the next few months. I will be weaning off the prednisone and going back to three 3mg Budesonide, stay on the methotrexate, stay on the folic acid, and go to every 6 weeks on this Stelara instead of 8 weeks if approved by Jansen. This will be my treatment as of today. I really don't know how to go to Mayo Clinic if I have no money and my insurance doesn't cover it, but I will have to wait and see how everything goes in the next few months. I have been diagnosed with crohn's for 5 years, but I have been sick since 1997. I have been an emotional mess with this Crohn's and don't know what to do about that. I am constantly worried about becoming homeless and constantly worried about this Crohn's and how it affects me physically and mentally. I send too many portal messages to my gastroenterologist office and they are very emotional and frustrating messages, so I've been told not to do that any longer by my gastro. I am alone and I have no money and I'm sad.

 

[my little penguin]

Does Mayo Clinic take Medicare? » Mayo Clinic Connect

For those of us who live in the U.S., this is a complicated issue. Whether or not Mayo Clinic takes Medicare comes up frequently. The …

connect.mayoclinic.org

Definitely call per the link
They can tell you what your options are
Hugs
Prednisone and hospitals can make things seem worse
We are here for you
Focus on the good three days of solid bm
Is a good thing

 

[Lynda Lynda]

Hopefully the Prednisone tapering, adding back the full dose of Budesonide, staying on the Methotexate and Folic Acid and then Stelara at 6 weeks instead of 8 weeks will help me out for a while. My relatives that live in Minnesota & Arizona and Wisconsin & Arizona can go to Mayo in Minnesota and Mayo in Arizona. They live here in Arizona part time in the winter months and can visit doctors here. But they are in their 80's and 90's and also have way more money than me.i am in my '60's and collect SSD. My sister is in her '70's and lives in Idaho and her health insurance only covers her in Idaho.

 

[Carabop1]

Hospitals also have financial assistance. I say going to Mayo is a good thing. You may finally get a good treatment plan. Mayo has more stringent regulations for working there so better doctors. Do not let finances keep you from getting the treatment you need.

 

[Lynda Lynda]

Hospitals also have financial assistance. I say going to Mayo is a good thing. You may finally get a good treatment plan. Mayo has more stringent regulations for working there so better doctors. Do not let finances keep you from getting the treatment you need.

Thank You.

 

[crohnsinct]

Shame on your physician for telling you to change your communication with them. The psychological component of dealing with a chronic disease is well documented, especially in IBD and most major IBD centers now have gastro psychologists available to see patients. I know for a fact that Mayo does.

I am surprised Mayo doesn't take your insurance. Generally these tertiary centers take just about everything. Have you called them? Perhaps they take your insurance but it isn't listed on their website. They do happen to be tops in the field and if you need surgery they are also top.

I hope things calm down a bit.

 

[Lynda Lynda]

Shame on your physician for telling you to change your communication with them. The psychological component of dealing with a chronic disease is well documented, especially in IBD and most major IBD centers now have gastro psychologists available to see patients. I know for a fact that Mayo does.

I am surprised Mayo doesn't take your insurance. Generally these tertiary centers take just about everything. Have you called them? Perhaps they take your insurance but it isn't listed on their website. They do happen to be tops in the field and if you need surgery they are also top.

I hope things calm down a bit.

I am prone to terrible panic attacks, catastrophizing, etc. If I can learn how to just go through the panic attack and then wait 24 hours before sending crazy messages to doctors or family members then that would work out....easier said than done. Anyhow, going to check on the Mayo thing later on as now I have to focus on tapering the recent prednisone dose, then going back on the Budesonide, according to my GI instructions. Tapering / weaning will take at least 2 weeks. A gal from GI office called me to set up a 2 week follow up with GI or NP at GI office then she realizes there are no appointments available, wierd. Have access to my Hospital portal now, what a great tool as I got to look at my Hospital CT scan results today. Thanks for everyone's help here on the forum. Lynda.

 

[my little penguin]

Mayo takes minimum 6 months to get in (or at least in 2018 it did )
So better to call now
Get records etc then they can get you on the schedule
Better to call now
Do you have a psychiatrist/psychologist to help you with the panic attacks ?
There are plenty of online therapy groups for true medical professionals so you could talk. And get the tools that can help
Hugs