How to enjoy life while immunocompromised?

[Cheryl C]

I have had Crohn’s for 31 years, and UC for 6 years and have taken mesalamine, Humira, and one treatment of Remicade. The mesalamine provided the most relief for many years but has stopped reliably controlling my symptoms. The Remicade did not work, and I had serious side effects with Humira. My doctor wants me to begin Stelara. I am anxious about taking Stelara for fear of what life will be like living immunocompromised. My husband and I babysit our young grandchildren (ages 2 & 4) once a week, and we are the backup carers when the kids are too sick to go to daycare or preschool. I can see masking when we care for them during sick days, but I don’t want to mask at other times. We love hosting friends and family on holidays - many children and adults sharing food and conversation in our small home. Since Covid, we don’t eat out as much as we used to, but we still enjoy occasional restaurant meals. I am an active volunteer at a museum and plan on volunteering at my grandchild’s school next year. I am concerned about how Stelara will affect my ability to do all of these things. How do you share your life with others while immunocompromised?

 

[my little penguin]

My adult child has been on biologics since age 8
He is now 19
He has been on Stelara for 6 years
He currently is in college living in a dorm
Regular school prior to that
Risk of infection is extremely low with stelara compared to other biologics
It’s just makes you more likely to have complications from the flu or COVID or rsv etc
It does not make you more likely to get sick
No issues with extra illness in 11 years
Including elementary school
He is far healither than my other non ibd non immunocompromised child
He takes two biologics Stelara plus another one for different condition and methotrexate
Doesn’t stop life or hanging out etc ….
So for him at least college is what it should be

enjoy life
Hope the med works for you

he does get all the vaccines recommended by his Gi
Pneumonia, flu ,COVID, shingrex etc….

 

[Cheryl C]

My adult child has been on biologics since age 8
He is now 19
He has been on Stelara for 6 years
He currently is in college living in a dorm
Regular school prior to that
Risk of infection is extremely low with stelara compared to other biologics
It’s just makes you more likely to have complications from the flu or COVID or rsv etc
It does not make you more likely to get sick
No issues with extra illness in 11 years
Including elementary school
He is far healither than my other non ibd non immunocompromised child
He takes two biologics Stelara plus another one for different condition and methotrexate
Doesn’t stop life or hanging out etc ….
So for him at least college is what it should be

enjoy life
Hope the med works for you

he does get all the vaccines recommended by his Gi
Pneumonia, flu ,COVID, shingrex etc….

Thank you so much for your reply...it truly helps me put this in perspective.

 

[Babs65]

I have had Crohn’s for 31 years, and UC for 6 years and have taken mesalamine, Humira, and one treatment of Remicade. The mesalamine provided the most relief for many years but has stopped reliably controlling my symptoms. The Remicade did not work, and I had serious side effects with Humira. My doctor wants me to begin Stelara. I am anxious about taking Stelara for fear of what life will be like living immunocompromised. My husband and I babysit our young grandchildren (ages 2 & 4) once a week, and we are the backup carers when the kids are too sick to go to daycare or preschool. I can see masking when we care for them during sick days, but I don’t want to mask at other times. We love hosting friends and family on holidays - many children and adults sharing food and conversation in our small home. Since Covid, we don’t eat out as much as we used to, but we still enjoy occasional restaurant meals. I am an active volunteer at a museum and plan on volunteering at my grandchild’s school next year. I am concerned about how Stelara will affect my ability to do all of these things. How do you share your life with others while immunocompromised?