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Testing : How often ?

Lynda Lynda

Member
How often does your Gastroenterologist order :

1) a blood draw
2) a poop sample
3 ) a colonoscopy or endoscopy

I haven't had a colonoscopy for almost 4 years.
I haven't had an endoscopy for almost 2 years.
I haven't had my poop tested for about 1 year.
I haven't had a blood draw for 1 year.

I think this is exact information from what I can remember. 🤔

I have Crohn's Disease, Gastritis, Acid Reflux and Bile Acid Malabsortion.
 

Bufford

Well-known member
I usually get a colonoscopy done every second year, but its been three years due to the pandemic and hope to get one done later this year. I have blood tests done every year, and if I am flaring twice a year.
 

my little penguin

Moderator
Staff member
Blood draws every 3 months due to methotrexate.
Scopes were yearly in the beginning but will be 5 years since last
Then every few years for cancer screen since it’s been 10 years since dx
Fecal cal is only as needed for insurance - right now once a year
But he is stable
 
1. Every 16 weeks for inflectra, every other infusion, I think?
2. Only when needed
3. GI told me yesterday that if there are no problems, the current recommendation for colonoscopy is every 5 years for IBD patients.

I have upper GIs at least twice a year due to dysphagia and esophageal lichen planus.

If I complain of symptoms, he orders more tests.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Blood draws every 4 months (every other Remicade infusion)
Only when needed - had one done last year due to issues (came back ok)
I was having scopes once/year , but when my GI retired the 'new' GI mentioned only every other year - I am considered 'high risk' as I've had past polyps and disease for over 40 years now.
 
For me I have blood tests for azathioprine every 3 months, that doesn't test for inflammation or anything though, just kidney and liver function.
Stool sample normally yearly or more, I have it done at home with a app now which sends the results straight to him.
Colonoscopy is about 4 years. The prep puts me straight into a flare or obstruction so I end up not able to get to the test at all. So I have a barium MRI done now. Still causes troubles from prep but nowhere near as bad. I am in remission otherwise I would not have got away with it so long. Also where my crohns is, the terminal ileum.. it seems to not show on endoscopy or colonoscopy annoyingly. But I know as time goes on he will want me to be tested for any nastiness that could happen.
 

Lynda Lynda

Member
I just had a tele-health phone video appointment with my Gastroenterologist.
I won't get a blood draw until 8 weeks from now.
I have been taking the methotrexate, Budesonide and Folic Acid for 10 months now.

I started the Stelara 4 months ago.
There was a delay in starting the Stelara because I had to find patient financial assistance.

Per my GI's instructions, I have been tapering down my Budesonide since January 17th.
On January 17th I went from three 3mg capsules a day to two 3mg capsules a day.
On February 18th I went down to one 3mg capsule a day.

I have just been instructed by my GI to continue with one 3mg Budesonide capsule a day until my next appointment 8 weeks from now ( that appointment is with their Nurse Practioner.)

After my blood draw is done ( in 2 months ) and my GI sees the results, then he will decide what to do about my Crohn's medications ( lower the dosage, raise the dosage. )

Take Care 🧸
 

my little penguin

Moderator
Staff member
Stelara only has one dose -90 mg
The frequency can be changed
Normal frequency is every 8 weeks
But some folks need Stelara every 6 weeks
Or every 4 weeks
Good luck with the wean
 
I ask the doctor for tests outside of the protocol if I think the circumstance warrants it. For example, if we go on a long vacation and eat out for every single meal then I would 1) clean up the diet upon returning and 2) also ask the doctor to order the inflammation markers.

Right now I am actually trying to figure out how the IUS fits into the conventional testing scheme of things.
 

Lynda Lynda

Member
@asadmom. I have Medicare / United healthcare health insurance so I think a doctor has to prove why the blood draw, test, procedure is actually neccessary to the Medicare people before it can be done. ??
 

Lynda Lynda

Member
Stelara only has one dose -90 mg
The frequency can be changed
Normal frequency is every 8 weeks
But some folks need Stelara every 6 weeks
Or every 4 weeks
Good luck with the wean
Ok. So it's 14 months from my post here about my tapering of Budesonide. So since February 2022 I have been taking one 3mg capsule of Budesonide for the past 14 months. Wow. If completely eliminating the Budesonide ( tried twice this year ) is making me sick then I am really interested in what my current Stelara levels are ? I am having my Stelara blood draw in one week.
 

Lynda Lynda

Member
This is my latest scan result from my Hospital stay. Don't know what all of this means. I now have access to the Hospitals portal, which is nice because honestly my Gastroenterologist is sick of my crazy long frustrating portal messages to him. Any insight into my scan results is appreciated. I am going to start looking up some of the results that I don't understand. Thanks. [ In 2018 I was diagnosed with Crohn's Disease and told I have stricture and inflammation in my terminal Ileum.]
 

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Scipio

Well-known member
Location
San Diego
This is my latest scan result from my Hospital stay. Don't know what all of this means. I now have access to the Hospitals portal, which is nice because honestly my Gastroenterologist is sick of my crazy long frustrating portal messages to him. Any insight into my scan results is appreciated. I am going to start looking up some of the results that I don't understand. Thanks. [ In 2018 I was diagnosed with Crohn's Disease and told I have stricture and inflammation in my terminal Ileum.]

This is mostly good news. Except for a mildly fatty liver and definite signs of inflammation in the small bowel consistent with Crohn's disease (both of which you already knew about), everything else looked more or less normal. No small bowel obstruction. No build-up of fluid in the abdomen. No signs of cancer, Kidneys look normal, etc.
 
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