Bowel inflammation when I take steroids, is it Crohn?

[Aviorrok]

Bowel inflammation when I take steroids

*Long story* and weird
So I’m 26 years old, 2 years ago November 2020 sudden tinnitus ear fullness and hearing loss in my left ear after 4 months right ear joined to the party
I met with more than 20 ENT no one have answer, some of them said autoimmune disease (not AIED) but immunology doctors found nothing.
Move on to December 2021 got steroids cause my hearing get worse
When I start to take prednisone my fever reach to 40.5c , night sweats, CRP elevated up to 120 and liver enzymes elevated a little bit.
I hospitalized for 4 days, all autoimmune blood test was perfect, CT chest and belly was perfect except liver lymph node enlarge a little bit and enlarged spleen (I’m tall I’m 190cm so maybe my spleen is not enlarge) I went home with diagnosis: FUO (fever unknown origin)
April 2022 hemoutly said I need to do bone marrow, results perfect.
I decided to make colonoscopy + gastroscope because every time I take steroids I feel so bad but my hearing improve.
August 2022 Finally diagnosis with pancolitis mayo grade 2
I said to the doctor I don’t have pancolitis and the inflammation is because I took steroids 2 weeks ago and it’s like the previous I took steroids and hospitalized, he said it’s not true and the steroids “helped me” but I don’t accepted with him.
3 weeks later I did a calprotectin test and it was low 9! And my CRP was almost normal!
I go to another gastroenterologist and she said he never see a case like mine (steroids make inflammation and not help inflammation)
I tried to take low dose steroids (10mg for 3 days) to be 100% that steroids make my bowel inflammation and I was right, I tried it again and again and all symptoms returned and when I stop after 7-21 days all symptoms gone.
so I’m without steroids about a month I feel 10x better than with steroids my fever is normal, I don’t have night sweats and I don’t have diarrhea but I have a stomach pain and right groin pain and liver enzymes (ALK) elevated a little bit.
Currently I’m waiting for endoscopy capsule next month and another calprotectin test, groin ultra sound and endocrinology doctor to explain why steroids make inflammation in my body and not reduce inflammation.
Anyone have any tips? Is it Crohn? It’s sounds like Crohn?

Thank you!

 

[Pangolin]

That doesn't sound like Crohn's, but it does sound like a very bad reaction to prednisone. Maybe with more investigation you could figure out what the problem with your ears is and find something other than steroids that would improve them?

 

[Aviorrok]

That doesn't sound like Crohn's, but it does sound like a very bad reaction to prednisone. Maybe with more investigation you could figure out what the problem with your ears is and find something other than steroids that would improve them?

More than 40 ENT still no answer I think it’s related to my jaw and neck muscles + immune system
Currently I have diarrhea since Saturday , I will request another calprotectin test hope it will be low again

 

[Aviorrok]

UPDATE:
Dummy capsule endoscopy stuck so I can’t do the real thing.
I have a pain on my right lower abdominal and sometimes on rectum
My stool looks very weird and sometimes I have had diarrhea but not watery
Calprotectin still low 5-9, folic acid low, CRP 20, low WBC
MRCP was perfect
It’s still a IBD? What to do next?

 

[xmdmom]

When I read that steroids make you worse, I wonder if you could have a chronic infection. Steroids can make infections worsen and there are chronic infections that cause pancolitis, lymph node enlargement and liver and spleen enlargement.

For example, Strongyloides is a parasite that can cause GI symptoms and colitis as well as other symptoms. Steroid treatment in people with this parasite can cause a hyperinfection that can make people extremely sick. Google CDC and Strongyloides for more info.

I’m definitely no expert, just someone who googles and can understand med papers. I would see an infectious disease doctor or ask your doctor about the possibility os Strongyloides or another infection causing your symptoms.

BTW, where do you live? Any travel to tropical areas?

 

[Aviorrok]

When I read that steroids make you worse, I wonder if you could have a chronic infection. Steroids can make infections worsen and there are chronic infections that cause pancolitis, lymph node enlargement and liver and spleen enlargement.

For example, Strongyloides is a parasite that can cause GI symptoms and colitis as well as other symptoms. Steroid treatment in people with this parasite can cause a hyperinfection that can make people extremely sick. Google CDC and Strongyloides for more info.

I’m definitely no expert, just someone who googles and can understand med papers. I would see an infectious disease doctor or ask your doctor about the possibility os Strongyloides or another infection causing your symptoms.

BTW, where do you live? Any travel to tropical areas?

I’m from Israel and never fly to other countries
I attached some tests results

 

[xmdmom]

The labs you posted show your doctors did some tests for bacteria and parasites and these were negative but I don't see any test for Strongyloides. It's probably very unlikely but it might be worthwhile asking about. It is a very common infection that is often asymptomatic but flares with steroids. I don't know if it exists in Israel.

How sure do you feel that steroids have caused your symptoms?

What did your doctor say about the dummy pill getting stuck? What does your doctor advise now? Have you/will you have any imaging studies of your intestine?

I really hope you can get some more clarity about the cause of your symptoms and relief very soon!

 

[Aviorrok]

The labs you posted show your doctors did some tests for bacteria and parasites and these were negative but I don't see any test for Strongyloides. It's probably very unlikely but it might be worthwhile asking about. It is a very common infection that is often asymptomatic but flares with steroids. I don't know if it exists in Israel.

How sure do you feel that steroids have caused your symptoms?

What did your doctor say about the dummy pill getting stuck? What does your doctor advise now? Have you/will you have any imaging studies of your intestine?

I really hope you can get some more clarity about the cause of your symptoms and relief very soon!

Hmm the doctors said nothing about the dummy pill stuck they said you can try one more time with preparation like colonoscopy but I don’t want do to it I’m scary from the real capsule will stuck
Steroids help for my hearing loss but make my ears super fullness and my CRP get elevated to 80-120 when I take them but WBC,HB and RBC get better
I don’t have any bowel imaging I just have a CT and MRCP because they think it’s PSC (Primary Sclerosing Cholangitis) or IBD or something else