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Stay at Home Parent w/Crohn’s

Stay at home dad for the past 5 yrs. Two boys ages 5 and 3. Wife is the COO of an organization and a very supportive mother and partner. I mention her title because it requires long hours and many days I am with the children from morning until bedtime. So this job as a SAHD is way more rewarding and challenging than I can convey. On good days when I was in remission it took all my energy. I was diagnosed at 14, hospitalized in my teens and twenty’s , no surgery’s, then went into remission with an occasional hiccup for over a decade. Lialda, Ascol, and some probiotics. Then about 2 years ago I flared up and I have been trying to get back in control. Started Humira 3 months ago but no real help yet. Still hopeful but the pain and frequency of restroom use is tiring enough. Add on the fatigue and two young kids and I’m burnt. Plus I gained a ton of weight while on prednisone. Lots of guilt lately for not being able to take the kids out as often as I’d like, have to route out the bathrooms when we go places, and no vacations for Dad this summer. Heck, last summer as well. It’s a lonely disease this Crohn’s and I hurt and I bleed and I cramp up and poop in my pants. But I keep on keeping on even though I’d love to just crawl in bed somewhere far away. Anyone else raising kids while flaring up?
 
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I do t have Crohns but am s mom of two kids with Crohns. You sound like an amazing dad and partner. I am all too familiar with flares that sideline you from activities as my older daughter has been having trouble for three years now.

3 and 5 year old boys require a lot of energy. Kudos to you for being home with them and making them your priority. Your sons dont really care about where they go as long as they are with you! You can have fun at home! some ideas for fun at home things:

Kick it old school with a backyard or front yard sprinkler.

Take the summer to plant a garden

Spend time in the kitchen exploring new recipes

Camp in your backyard

Have the boys help with housework...put shaving cream and a little water on the floor and let them scout around on Their bottoms in towels. The floor gets clean and they can have silly races etc.

Does your library have a summer program?

You can get a book of silly science experiments and blow stuff up in your backyard.

Hang in their. Some biologics take a bit to kick in and sometimes it takes a couple of tries before you find the right one. Be kind to yourself.
 

my little penguin

Moderator
Staff member
Again another parent who child has crohns (not me)
Humira took 5-7 months to kick in for ds
For him he needed higher dosing
Higher frequency
It worked for 5 plus years though
 
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I do t have Crohns but am s mom of two kids with Crohns. You sound like an amazing dad and partner. I am all too familiar with flares that sideline you from activities as my older daughter has been having trouble for three years now.

3 and 5 year old boys require a lot of energy. Kudos to you for being home with them and making them your priority. Your sons dont really care about where they go as long as they are with you! You can have fun at home! some ideas for fun at home things:

Kick it old school with a backyard or front yard sprinkler.

Take the summer to plant a garden

Spend time in the kitchen exploring new recipes

Camp in your backyard

Have the boys help with housework...put shaving cream and a little water on the floor and let them scout around on Their bottoms in towels. The floor gets clean and they can have silly races etc.

Does your library have a summer program?

You can get a book of silly science experiments and blow stuff up in your backyard.

Hang in their. Some biologics take a bit to kick in and sometimes it takes a couple of tries before you find the right one. Be kind to yourself.
Thanks, I’m still hoping the biologic does the job. And yes, backyards in the suburbs is a life saver. First few years with the boys we were city living with no yard and now that we have one it’s great and they love it.
 
Again another parent who child has crohns (not me)
Humira took 5-7 months to kick in for ds
For him he needed higher dosing
Higher frequency
It worked for 5 plus years though
5 years is a good run. I may need the increase in doesage and or frequency. I was always skinny skinny skinny and diagnosed young so always told to eat more and “ why you so skinny?” (Italian family). Well a decade plus in remission some kids and a run of steroids and I a big guy now. I wonder if that may be something that affects the Humira dose. Anyway. Meeting with Dr on Monday. Day before my next injection so we will be able to get some numbers. Thanks for the encouragement
 
LOL! Italian here also and totally get that! Once when my daughter's GI asked me to rate her quality of life one of the things I put down was lack of appetite and told him YES! As an Italian mama I consider not eating a quality of life issue! Also a city girl who was dragged kicking and screaming to the burbs. Forced to admit with kids it does have it's advantages but I am running back to the city as soon as I can.

Ask about a Humira levels test. That will let you know if you have therapeutic levels of the drug or if you might need the injections more frequently. They do those tests right before your next dose so they see what the lowest levels are.
 
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