I feel for you!

I was diagnosed in Nov ‘23
With candide and pilorie (sp?)

I was on strong antibiotics for 63 days. Screwed up my gut!

They ran scopes from top down and bottom up. Said I might have crohns but needed a pill cam to see.

They didn’t get around to running a pill cam until April of ‘24!

No idea why the delay. Much much pain in torso. Not their problem. Ha!

Then diagnosed with crohns!
Maybe also irritation from ibruprofin!

Forbade me from it and back pain increased!

Sent me to a spine doctor and I got spinal steroid injections. Helped but not a cure.

From April until June before they got me on inflexemab (remecore). First one helped almost immediately. Then not so much. Second infusion- no change. But overall, I am much better today than when I started! So?

But I have much more pain!
Abdominal cramps and pain.
And the shooting pain - severe! Like random wasp stings! So severe they cause me to shout out!

During the wait, I lost 120lbs!

I was so weak that I could barely stand up.

But now I’m gaining my strength back and I’ve gained 25 lbs.

Medicare (75 male) called me asking about the unreasonable delays!

I had no explanation so they said they were going to call the gastro and see. Never heard back.

I’ve been hauled to the ER twice. Once at mayo Rochester.

At mayo I got connected to one of the best doctors that I’ve ever had! Dr Wang. She is awesome and extremely caring! I love her!

If I didn’t live over 500 miles from Rochester mayo, she would be my gastro.

Saw my local gastro (actually assistant - I have never actually seen the real gastro) today. She’s gonna run another lab and then see me in a little over 8 weeks! Delay delay.

When I asked why the delay - she said because they were busy! But all the times that I’ve been to see her in the last 10 months - there’s never been many people in the waiting room. 1-3 people at the most! Maybe she should try working an actual 40 hour week??!!

I live in a remote western region. Where the ‘cream of the professional crop’ typically does not settle. I understood that when I moved here. But dang it! Do your job!!

So hang in there! Do as much research as you can, understanding that much of what you read on the internet is conflicting and not always the straight truth.

Check out who wrote the info.

Good (great) doctors are out there. Ya just have to dig to find them.

And even most of the great doctors, only really know as much as they learned from the last big pharma salesman!

I have learned that they don’t really get a commission on drug sales, but big pharma might pay them big bucks for putting on a seminar that no one actually attends or in a nice, plush location!

We have a daughter in law, who worked for big pharma and from other research we’ve done. And, we’ve learned

It’s your responsibility to stay alive! No one outside of great friends or family is gonna help much with that!

I ask a lot of pointed questions. I’m not anyone’s favorite patient.

I don’t care! It’s my job to stay alive and learn. And you can’t learn by not asking intelligent questions.

Sometimes it’s good to know the answer before you ask!

That way you can tell if they’re dealing off the top of the deck. Many times they are.

But it’s good to know the ones that aren’t!

I wanted to know why the constant push for RX’s?
Now I know!

Good luck and stay alive!