Struggling with how to cope

[blessedby3miracles]

Life is hard in general but since finding out that Drew has Crohns almost 2yrs ago I am in a constant panic when he gets any sickness. It seems when things go well for a while it always creeps back in and I feel so worried and overwhelmed. I have two other children and it is so hard when Drew is in a flare up and things all go south. How do you cope with this and the constant ups and downs? I feel like when my sons health is bad he is the number one priority and should be but I can't be the mom I need to be to my other two. I have no family close by so it makes it even harder. This week has been hard. He has been on Remicade and all has been going fine but the last few days he is going into a flare. We go tomorrow for Remicade I talked to the Dr. and they are doubling his dose. It seems like it is becoming less and less effective the last few times and now this. His belly is hurting he has no energy, it scares me so bad. Last year at this time he was having a bowel resection. Right when it is all good it rears it ugly head. My husband says if I keep worrying like this I am shorting my life. How can I remain optimistic when I know that this is forever. Please share any advice

 

[Mehita]

I wish I had an answer for you. Even though my son is doing well right now, I still always feel like the rug is going to get pulled out at any minute. I just pray. Pray and research and pray some more. :ghug:

 

[Patricia56]

Always ask to have stool tests done when there is a new "flare" that does not fit previous patterns. Sometimes what seems to be a flare is actually an infection like c. diff.

 

[kimmidwife]

I hate to say it but I think a lot of us feel the same way. I do reccomend a support group or counseling. It can be helpful at learning g coping strategies.
Just sending you a hug. Also we have had good success with a medication called Low Dose naltrexone. Look at the treatment section on the front page. If remicade stops working you may want to look into it. It is controversial. It has been shown to work in small studies but unfortunatly being a generic medication has no big money behind it for studies. For my daughter it was her miracle drug. Took a little persuading of her doctor to prescribe it but he came around. But as I said read about it and let me know if you have any questions.

 

[Mehita]

Someone posted this in another thread... in particular page 17 gives me hope.

http://www.chop.edu/export/download...er/IBD_Day_2013_Whats_Hot_in_IBD_Research.pdf

 

[Jenn]

I hear you, it is a constant struggle, I try to just manage one day at a time. Your other children will be stronger for your sometimes lack of attention, they are the lucky ones, truly. Know that you are doing your best.

With the current flare on remicade, have your doctor check for antibodies before you double up the dose. This sounds so much like when remicade began failing my son and we had to switch to Humira.

Hang in there!

 

[CrohnsKidMom]

It always feels like we're walking on eggshells. But like Mehita said, I just pray. And I have a whole chain of people at church praying for my son. It gives great peace of mind. I'd recommend counselling too, and most clergy of any denomination would give free counselling if you don't have ins coverage for a psych.

 

[blessedby3miracles]

Thank you all so much it's so nice to come here and get support and understanding.

 

[Farmwife]

For me the Lord, church family and this forum is how I'm able to cope with it all.

Hugs, their lives are so precious and we as parents want to see them live life to the fullest.
It's just hard to see their future when we deal with their medical issues day after day.

But my Grace always reminds me that despite her disease(s) they are not who she is or what she will become.

Our babies will fight and win and make the healthy kids look like wimps.:lol2:

Hang in there mom

 

[my little penguin]

Family therapy helps for the kids
They ( non Ibd kids and Ibd kiddo) get to voice their feelings .
This helps a lot.
Make a list of what you can control and what your can't with crohn's
Put checks beside all the good control things you are doing
Refer to the list often.
The first two years is the hardest - getting the right meds
Figuring out the pattern when to call etc...
Have ccfa connect you to other local moms with kids the same age in your area.
Take the kiddos out to play together so you can speak freely to someone who gets it ( so worth it)
Schedule regular me time
No Internet just trashy tv/novel /choc / shopping away from the kids
Schedule your doc appts ahead of time - remember oxygen mask first
Also keep those appts

Remember worrying about what ifs is like paying for a debt now that you may never owe.

Make a plan a b and c about what it's then leave it be in a file for when you need it.

Exercise daily outside by yourself if possible walking etc..
If not get the kids involved

Give each kiddo a set date time each week for time with you or DH
Teach your DH how to handle bedtime/meds for Ibd kiddo
Practice with DH a few times a week so they can step in if needed



All of these things are easier said then done but.....

A sane mom leads to a healthier Ibd kid

 

[tannersmom]

Hang in there. I know how you feel. I had to leave my daughter's high school graduation early because my son started getting really sick with his Crohn's. Talk about Momma guilt! Now we are planning my daughter's wedding and my son is in the middle of a flare and needing iron infusions. It is tough but what else can we do? We do the best we can and hope when our kids look back they know we loved them all equally and did the best we could in the situation.

 

[blessedby3miracles]

Thank you very good advice!