Weird symptoms with Crohn's

[AmyQ]

Hi everyone,

Never posted here before but thought I'd give it a go. Almost every day I ask myself "is this a Crohn's thing or something else?" and I'm probably not alone in this so I thought I'd share some of my (apparently unusual) symptoms.

I'm 29 years old, F, diagnosed about 7 years ago with Crohn's disease in the terminal ileum. Been on and off treatment. Had a bad liver reaction to Azathioprine and could no longer tolerate it, so started Stelara. Almost a month later suffered an intestinal blockage in the ileum due to stricture. Luckily, this resolved itself with the Crohn's exclusion diet and ongoing immunotherapy. Not yet in remission but looking positive.

Some odd symptoms I've noticed with Crohns disease in the last several years:

- Dry eyes/sensitivity to light (I had my eyes checked and no physical evidence of any eye issues)
- Hunger pains (usually in the upper right quadrant and goes away with food)
- Upper back pain, centred around the shoulder blades (doctor blamed posture but I'm pretty flexible and active so maybe?)
- Random energy crashes
- Random food intolerances that go away after a few months (I would gag if I even smelled tuna, even though I used to devour it)
- Detached/brain fog/disassociation

If you experienced any of the above, I would love to hear from you!

 

[Scipio]

I've been on Stelara for 6 years now, and I haven't had any of those symptoms, or at least not that I've associated with the drug. I do get mild brain fog and/or energy crashes sometimes, but I associated those with getting old since I had them before Stelara too.

The food taste and odor intolerances is a known lingering side effect of COVID infection. Did you come down with COVID at some point by any chance?

 

[Delta_hippo]

I have had Crohn’s since 2017 and can relate to the dry eyes issue. This is not stelara linked for me has began before I went in that drug (but has continued whilst on it). My eyes can sting and water sometimes quite badly. An optician said they were very dry and recommended eye drops as well as a heat mask (elasticated eye mask you warm in the microwave). You have to use regularly but it does help. I also had to switch from wearing contact lenses almost every day to glasses (I’m very short sighted) as I couldn’t tolerate the contacts any more. I can’t say this is definitely Crohn’s but before then I was happily wearing contacts and no problems for 25 years.

 

[AmyQ]

I have had Crohn’s since 2017 and can relate to the dry eyes issue. This is not stelara linked for me has began before I went in that drug (but has continued whilst on it). My eyes can sting and water sometimes quite badly. An optician said they were very dry and recommended eye drops as well as a heat mask (elasticated eye mask you warm in the microwave). You have to use regularly but it does help. I also had to switch from wearing contact lenses almost every day to glasses (I’m very short sighted) as I couldn’t tolerate the contacts any more. I can’t say this is definitely Crohn’s but before then I was happily wearing contacts and no problems for 25 years.

I have also been told to invest in artificial tears for this reason. Mine also started before Stelera and has been ongoing ever since! Appreciate the advice with the heat eye mask

 

[my little penguin]

My kiddo has dry eyes as well but so does his dad . Only the kiddo has crohns.
In the US at least there is a dry eye shop online.
Gel eye drops for at night
Rewetting drops for the day time (my kiddo likes the ones with omega 3 in them -DH likes a different brand so varies by eye )
Heated mask for eyes as well as the beaded mask you freeze for eyes
There are goggles for sleeping as well (never tried those though)
There are ophthalmologist who only treat dry eyes .

 

[Pangolin]

Have there been further investigations of the formerly strictured part? Does it look ok on colonoscopy/pillcam and MRI? It may be that the area continues to be a problem even if inflammatory numbers are low.

 

[Scipio]

There has been research on the topic. This statistical study of Crohn's vs no Crohn's patients showed that the Crohn's patients were at a significantly higher risk of developing dry eye symptoms:

https://pubmed.ncbi.nlm.nih.gov/37833664/

 

[ronroush7]

I h

Hi everyone,

Never posted here before but thought I'd give it a go. Almost every day I ask myself "is this a Crohn's thing or something else?" and I'm probably not alone in this so I thought I'd share some of my (apparently unusual) symptoms.

I'm 29 years old, F, diagnosed about 7 years ago with Crohn's disease in the terminal ileum. Been on and off treatment. Had a bad liver reaction to Azathioprine and could no longer tolerate it, so started Stelara. Almost a month later suffered an intestinal blockage in the ileum due to stricture. Luckily, this resolved itself with the Crohn's exclusion diet and ongoing immunotherapy. Not yet in remission but looking positive.

Some odd symptoms I've noticed with Crohns disease in the last several years:

- Dry eyes/sensitivity to light (I had my eyes checked and no physical evidence of any eye issues)
- Hunger pains (usually in the upper right quadrant and goes away with food)
- Upper back pain, centred around the shoulder blades (doctor blamed posture but I'm pretty flexible and active so maybe?)
- Random energy crashes
- Random food intolerances that go away after a few months (I would gag if I even smelled tuna, even though I used to devour it)
- Detached/brain fog/disassociation

If you experienced any of the above, I would love to hear from you!

 

[ronroush7]

I experience hunger sometimes when I think I shouldn't. It is normal with Crohn's to experience fatigue and brain fog

 

[Nadia96]

I myself am on stelara and have been since 2018 and I experience all the symptoms that you’ve mentioned. One thing you’ve got to remember is that chrons is an autoimmune disease. So the back pain, the dryness of the eyes, they’re all related to the disease. I’ve seen the ophthalmologist multiple times and have been prescribed eye drops which I now get over the counter. As for the brain fog, that will be down to the medication. It’s why I couldn’t do exams back at school, my mind will just go blank.

Have you had your ferritin levels checked? Because with the inflammation being in the terminal ileum and that you’ve had a stricture, it’s possible that you’re not absorbing the iron as much

 

[my little penguin]

Brain fog from Stelara ….???
I can say for my kiddo
he has been on Stelara for 7 years now plus a second biologic and methotrexate
No brain fog
In College and on the Dean’s list every semester so far
So meds don’t necessarily cause brain fog in most adults .
Inflammation in the brain can cause brain fog /headaches /migraines etc…
Before his crohns and other autoimmune diseases were well controlled, he would get bad migraines .
Hope you find something that works for you

 

[ronroush7]

Brain fog from Stelara ….???
I can say for my kiddo
he has been on Stelara for 7 years now plus a second biologic and methotrexate
No brain fog
In College and on the Dean’s list every semester so far
So meds don’t necessarily cause brain fog in most adults .
Inflammation in the brain can cause brain fog /headaches /migraines etc…
Before his crohns and other autoimmune diseases were well controlled, he would get bad migraines .
Hope you find something that works for you

I am glad for your son

 

[Nadia96]

Brain fog from Stelara ….???
I can say for my kiddo
he has been on Stelara for 7 years now plus a second biologic and methotrexate
No brain fog
In College and on the Dean’s list every semester so far
So meds don’t necessarily cause brain fog in most adults .
Inflammation in the brain can cause brain fog /headaches /migraines etc…
Before his crohns and other autoimmune diseases were well controlled, he would get bad migraines .
Hope you find something that works for you

Not necessarily just from Stelara, but also from other medications and from the Crohn’s itself. When I was back at school, I was on remicade, azathioprine and asacol and I struggled at school due to the brain fog. As for the stelara that I’m on now, I know that I have to have a break for a few days after I take the injection as even my driving gets affected and it’s my lack of concentration.

It can affect each person differently and I am really happy that your son is doing well