Journey

[millerkat7801]

Back in 2013 I had the Promethus IBD blood test that came back as Crohn's. My GI had done every test and never found any evidence. A month ago I was having large amounts of rectal bleeding and had a CT which showed 60 percent of my colon inflamed more so on the right (right colon and transverse) and then the sigmoid colon. Stool tests came back normal. I was started on antibiotics anyways. I continued to get worse on the antibiotics. Ended up being hospitalized for a couple days and started on steroids, I slowly got better. I stopped the steroids and my symptoms came back. I was subsequently restarted and my symptoms started going away (abdominal cramping, nausea, vomiting, diarrhea, and bleeding). I had a CT enterography which came back normal. My GI still has a strong suspicion it is IBD due to the improvement in my symptoms when on steroids. He ordered the Promethus IBD blood test again, came back negative even though previous consistent with Crohn's. I was on prednisone when that was drawn. I am scheduled to have upper and lower scope next month. I feel frustrated with this situation. When I was in in the hospital the doctor actually mentioned that my abdominal pain was likely due anxiety even though not even a week earlier the CT showed all the inflammation. I am currently on an 8 week prednisone taper. I have lost 16 pounds over this past month when this all started.

 

[my little penguin]

Get a second opinion
the “ibd blood test” is not recommended since as in your case it flip flops
Negative/ct scan is good
Most Gi will not scope after you have been on steriods for so long prior to any diagnosis
Scope on steriods during a flare after already being diagnosed with crohns is a different story

you really need to get a second opinion
Some places give second opinions by record review
Meaning you don’t have to physically there
They review your imaging /blood tests /pathology slides etc and decide what next steps are abd get back to your current Gi

Cleveland clinics /Mayo etc….
Not sure if adult Gi hospitals
My child is still under 18 so no dealing with adult hospitals yet

 

[millerkat7801]

Get a second opinion
the “ibd blood test” is not recommended since as in your case it flip flops
Negative/ct scan is good
Most Gi will not scope after you have been on steriods for so long prior to any diagnosis
Scope on steriods during a flare after already being diagnosed with crohns is a different story

you really need to get a second opinion
Some places give second opinions by record review
Meaning you don’t have to physically there
They review your imaging /blood tests /pathology slides etc and decide what next steps are abd get back to your current Gi

Cleveland clinics /Mayo etc….
Not sure if adult Gi hospitals
My child is still under 18 so no dealing with adult hospitals yet
[/QUOTE

I will have to look into this. My GI assured me that the prednisone will have no affect on the colonoscopy/EGD results. Thank

 

[my little penguin]

Steriods reduce inflammation
Your scope is looking for inflammation
Chronic changes may still be present in the tissue possible
But acute changes may not be since it will be over a month of steriod treatment
Not days of steriod treatment

please get aSecond opinion
Tagging some of the other moms on here
@crohnsinct
@pdx
@Maya142
@Pilgrim

I have never heard of being on steriods for over a month prior to being dx and doing a scope expecting the steriods not to have any effect

 

[Lizzyg]

I am guessing when you have the lower and upper scopes that you will have a biopsy too! It will be the biopsy that will give the diagnosis.
So frustrating when doctors put stomach pain down to aniexty.

 

[millerkat7801]

I am guessing when you have the lower and upper scopes that you will have a biopsy too! It will be the biopsy that will give the diagnosis.
So frustrating when doctors put stomach pain down to aniexty.

Will biopsied be accurate after being on prednisone for a total of 7 weeks during the 2 months before the scopes? This round of steroids will be my second round with less than a week off the first round before starting this second round.

 

[Lizzyg]

Yes definitely biopsies are what gives a definite diagnosis. Being on steroids won't make any difference to the biopsy.

Really hope you can get some answers.

 

[millerkat7801]

Yes definitely biopsies are what gives a definite diagnosis. Being on steroids won't make any difference to the biopsy.

Really hope you can get some answers.

Thanks! I am just so weary of being on prednisone before having answers.

 

[Lizzyg]

It is really good that you are having scopes. All can look quite normal with scopes but the biopsies can tell a different story.

Let us know how you get on.

 

[my little penguin]

@Lizzyg
Steriods reduce the inflammation present in the cells of the intestine
This changes the biopsy results since the biopsy is simply samples of the intestinal cells
If there are no cellular changes then Crohns can’t be dx
This is why the majority of Gi will not put a patient on steriods prior to a scope

Abstract
Corticosteroids (CS), first-line therapeutics for Crohn’s disease (CD) with moderate or severe disease activity, were found to restore intestinal permeability in CD patients, whereas the underlying molecular events are still largely unknown. This study aimed to investigate the effect and mechanisms of CS prednisolone on epithelial barrier using CD patient-derived intestinal organoids. 3D intestinal organoids were generated from colon biopsies of inactive CD patients. To mimic the inflammatory microenvironment, a mixture of cytokines containing TNF-α, IFN-γ, and IL-1β were added to the organoid culture with or without pre-incubation of prednisolone or mifepristone. Epithelial permeability of the organoids was assessed by FITC-D4 flux from the basal to luminal compartment using confocal microscopy. Expression of junctional components were analyzed by qRT-PCR, immunofluorescence staining, and western blot. Activity of signaling pathways were analyzed using western blot. Exposure of the cytokines significantly disrupted epithelial barrier of the intestinal organoids, which was partially restored by prednisolone. On the molecular level, the cytokine mixture resulted in a significant reduction in E-cadherin and ILDR-1, an increase in CLDN-2, MLCK, and STAT1 phosphorylation, whereas prednisolone ameliorated the abovementioned effects induced by the cytokine mixture. This study demonstrates that prednisolone confers a direct effect in tightening the epithelial barrier, identifies novel junctional targets regulated by prednisolone, and underscores intestinal barrier restoration as a potential mechanism that contributes to the clinical efficacy of prednisolone in CD patients.

From
https://link.springer.com/article/10.1007/s00109-021-02045-7no damage seen equals no diagnosis

 

[my little penguin]

https://crohnsandcolitis.ca/About-Crohn-s-Colitis/IBD-Journey/Treatment-and-Medications/Steroids

 

[my little penguin]

In the past, patients with moderate or severe states of inflammation received GCs as a first line therapy with an important effectiveness in terms of reduction of the disease activity and the induction of remission.

From
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5643284/
Reduction in disease activity is what is seen on scopes /biopsy slides
gC stands for prednisone
And sometimes it introduces remission while on steroids meaning mucosal healing of the intestine so nothing is seen on the scopes or biopsy from the intestine

 

[my little penguin]

@Lizzyg
You can have a normal looking scope (my kiddo did ) and still have chronic /acute changes detected on the biopsy slide results since those changes occur at the cellular level
But steriods treat those inflammatory changes and return cells to normal
That is why steriods are used despite side effects they stop the inflammation cycle from happening and heal the gut to that of a normal gut
Maintenance meds like remicade /humira and Stelara then take over and keep the inflammation from starting over again once steriods are stopped
This stops the inflammation cycle of cells
Cells that keep cycling through inflammatory changes not only cause damage (ulcers ,strictures, obstructions they can also change to cancer cells )
Which is also why after 10 years of being dx with ibd -yearly surveillance colonoscopies are performed taking lots of biopsies to find cancer quickly
My kiddo is just hitting 10 years now at 17 almost 18

 

[Lizzyg]

Great thank you so much for all the info.