Headed to Mayo

[fish]

I’ve been diagnosed with CD for 5 years now due to ulcers in TI. Very atypical in that food is not an issue, no bowel issues per say except occasional constipation when a doctor tries me on a new med, and biologics have caused migraines as well as other challenges that make life miserable. My main complaint throughout has been pain in rib/sternum area that has progressed to the point that as a once very active person I can no longer even walk around my neighborhood 10 minutes without having extreme pain afterwards. My medical team claims my pain has nothing to do with CD but offers no other thoughts other than seeing a pain management doc. So I’m finally headed to Mayo in Florida. Any one have any experience with the process and can offer insights or tips? This will not be a cheap road to travel nor convenient so I want to make sure we are as efficient as possible with my time there. And of course, I want relief and to get my life back.

 

[Scipio]

Where are you located? I know that Mayo is a golden name, but there may be perfectly-capable IBD specialists located nearer that will not be such an expensive challenge to visit and that can offer the same skill and treatments as Mayo.

 

[fish]

I’ve tried the local experts - Emory, Piedmont, Saint Jos, AGA, Northside. They have all been stumped. Quality of life has gone steadily down hill over the last 5 years and I need an outfit that will take a comprehensive view of the situation since piecemeal isn’t cutting it. Hence Mayo. But I want to give them the best chance at succeeding by doing everything I can to make the visit good.

 

[my little penguin]

https://ankylosingspondylitis.net/symptoms/chest-pain
Have you seen a rheumatologist?
Rib stern pain can be from arthritis inflammation
Which tends to be RA negative
Crohns is associated with inflammatory arthritis
Which can flare independently of crohns flares or at the same time
My kiddo gets that pain in his ribs when his juvenile spondyloarthritis (ERA is the new name)
His is independent of crohns flares
He does not have axial arthritis yet

 

[fish]

https://ankylosingspondylitis.net/symptoms/chest-pain
Have you seen a rheumatologist?
Rib stern pain can be from arthritis inflammation
Which tends to be RA negative
Crohns is associated with inflammatory arthritis
Which can flare independently of crohns flares or at the same time
My kiddo gets that pain in his ribs when his juvenile spondyloarthritis (ERA is the new name)
His is independent of crohns flares
He does not have axial arthritis yet

Yes, been to a couple different rheumatologist. So far their perspective has been just treat the Crohn’s because it would be the same medication without really questioning if there is indeed arthritis of any sort. Unfortunately 2 biologics in and neither resolved or improved the issue. How bad does your son’s pain get and what sets it off? I’m not exaggerating when I say that just walking slowly for a few minutes can have me in the floor in pain later (not heart attack type pain - just ongoing relentless belt tied around ribs type of pain).

 

[Scipio]

How about pericarditis? Was heart inflammation considered by your docs? Pericarditis is a rare extra-intestinal manifestation of Crohn's, but it happened to me. I ended up having surgery to remove the inflamed pericardium. My pain was more like dull discomfort, but some pericarditis cases do cause very sharp chest pain

 

[fish]

How about pericarditis? Was heart inflammation considered by your docs? Pericarditis is a rare extra-intestinal manifestation of Crohn's, but it happened to me. I ended up having surgery to remove the inflamed pericardium. My pain was more like dull discomfort, but some pericarditis cases do cause very sharp chest pain

When I was in the initial throes of diagnosis 5 yrs ago, since my main pain was ribs/sternum I had several heart tests, not sure if specific to pericarditis but would think they would have noticed if that were the case. Fast forward 3 plus years and I did have recorded heart palpitations for a month or so that didn’t worry my cardiologist (though they were freaky to me) but I’m fairly confident they were a reaction to Remicade which I stopped as did the palpitations. Will keep this idea in mind though, and make sure we at least give it serious consideration.

 

[my little penguin]

His arthritis is far worse than his crohns (only mild )
Spondyloarthritis needs monitored - of you have axial then they can need different drugs sometimes IL-17
He takes Stelara but at very high frequency ( 90 mg every 4 weeks ) plus methotrexate plus Celebrex to keep things stable
Rheumatologist has said Stelara alone would not help and if he had axial disease Stelara definitely would do nothing
You need a rheumatologist who specializes in ankylosing spondyloarthritis
eRA abd spondyloarthritis in general

Some need jak inhibitors
Others need the IL -17
They would need to do blood work and MRE specifically for arthritis to determine the extent of things

when his chest is bad he says it’s similar to asthma attacks -hurts to breath or move

 

[my little penguin]

Tagging @Maya142

 

[fish]

When I was in the initial throes of diagnosis 5 yrs ago, since my main pain was ribs/sternum I had several heart tests, not sure if specific to pericarditis but would think they would have noticed if that were the case. Fast forward 3 plus years and I did have recorded heart palpitations for a

His arthritis is far worse than his crohns (only mild )
Spondyloarthritis needs monitored - of you have axial then they can need different drugs sometimes IL-17
He takes Stelara but at very high frequency ( 90 mg every 4 weeks ) plus methotrexate plus Celebrex to keep things stable
Rheumatologist has said Stelara alone would not help and if he had axial disease Stelara definitely would do nothing
You need a rheumatologist who specializes in ankylosing spondyloarthritis
eRA abd spondyloarthritis in general

Some need jak inhibitors
Others need the IL -17
They would need to do blood work and MRE specifically for arthritis to determine the extent of things

when his chest is bad he says it’s similar to asthma attacks -hurts to breath or move

When I got my initial diagnosis of Crohn’s I said “no way!” because my symptoms really didn’t sound like any Crohn’s I had heard of…and to this day Crohn’s patients I know scratch their heads when I say I eat a salad most days for lunch. I actually suggested ankylosing initially but got that “well it’s treated just like Crohn’s” story/attitude. I’ve been unable to find any real expert locally on this subject but yeah, I’m more in line with your son. Stelara did nothing for me but kick off migraine again that didn’t go away until I stopped treatment again. Will keep digging on this subject and try to find an expert that will give it more consideration.

 

[my little penguin]

Hla -b27 is a blood marker which makes AS more likely
Not everyone who is positive has AS or ERA or spondyloarthritis
But most folks (90%) with those diseases are hla-b27 positive
My kiddo is and has it
I am but I don’t have the disease
His crohns dx has been questioned multiple times over the years
But for now it’s what “fits best “ not a good fit though

 

[Scipio]

Another thing to think about is that you might have two things wrong with you. Crohn's plus something else completely unrelated to Crohn's. It's perfectly possible. And when it happens it often baffles docs for a while, because they tend to assume the second condition to be a complication of the first instead of a separate disease - especially in the case of a complex first condition with highly-variable symptoms like Crohn's.

 

[my little penguin]

^^^ yeah that
Ds also has an auto inflammatory condition (Acute Febrile neutrophilic dermatosis-Aka Sweets Syndrome) it took a few years to get dx and made it seem like the crohns meds were not working
When in reality he just needed a separate med for Sweets

 

[crohnsinct]

Have you been to Mayo yet? My daughter is going to another major multi specialist center and they have a department that handles all out of state patients. You send your records to them and they coordinate with every possible department to make sure they cover everything with one visit. They may ask you to stay longer and undergo further testing while there but they really try to do it all during the visit and not make you travel multiple times. I would imagine Mayo has the same type of thing. It might be worth asking about it. Also, check the Mayo website, these type of centers negotiate patient rates at the local hotels. It isn't a lot but when you are taking such a big trip every little bit helps.

 

[Steiconi]

I assume you're not on Medicare, because Florida and Arizona Mayo Clinics don't take it.
I wound up going to the one in Minnesota, for help with long-term post colon cancer surgery issues. I guess they weren't looking for CD, because they didn't find it. A local doctor diagnosed me a couple of years later.