Can life be about more than Crohn's?

[hockeymom]

Hi everyone.
I'm new to the forum and finding it a most wonderful resource with kind and very supportive people.
Here's our story: My 13-year-old son - hockeyboy - was diagnosed with Crohn's in August after a bloodwork, colonoscopy, endoscopy & biopsies and MRI. He seems to have pretty mild symptoms compared to many of your brave children. We start Remicade treatment Friday (tomorrow). I am nervous. He just made the decision not to play hockey this year as it's his first year of checking and at 85 lbs. he and his hockey trainer agreed that the risk of getting hurt was too high.
I got some great advice from people so far, here's my selfish question:
How do you make life at home more than all about Crohn's? I am constantly asking him about how he's feeling, BM's etc. which he is handling, but the rest of the family has also started doing it and hockey boy is irritated to say the least. His new answer is "I feel good" when I can see he doesn't.

 

[CrohnsKidMom]

Welcome to the forum from one hockey mom to another! My 9 yo son was dx'd last yr. The first few months after diagnosis can be the hardest. Once treatment begins and your son starts feeling better, you will find Crohn's takes a little more of a backseat in life, although there may be some bumps along the way. My son is considered to be in remission now, so we can breathe a little easier (I'm always on edge though), but I still ask him about his BMs. I keep it light and just for fun, ask his brother too, "So boys, tell me all about your exciting trip to the bathroom!" It usually gets an eye roll. My son was also getting a little irritated about me asking how he was feeling, so I told him I would assume he was feeling well, as long as he promised to tell me if he was feeling ill... I still ask from time to time though. I hope the Remicade works well for your son and he gets back on the ice before too long. Don't lose hope, things will improve in time.

 

[MamaHenn]

Others will be by with a lot better advice than I can give. Yes, life can be more about Crohn's. I'm assuming your son was very recently diagnosed? I know when we found out in Feb. that our son has Crohn's we were completely blindsided. It is always at the front of our minds but we do have days where we try to "forget" and just be normal. Our situation may be a little different as we're in the process of figuring out meds and figuring out our next steps. I mostly lurk on this forum but I have learned a LOT. There are some great parents on here with lots of information. Hugs to you and your family.

As far as everyone asking him how he is feeling all the time, I'd flat out tell other people to stop asking and make it a conversation between you/husband/son. I try not to ask leading questions of my son and try not to pepper him first thing in the morning or when he clearly doesn't want to talk.

 

[SupportiveMom]

Having this battle for the last 2.5 years and on many days I would say no, it is about the crohn's. Not just with the kid that has it, but also with the rest of us in the family.

The 1st year or so is the toughest when diagnosed. Finding that new normal can be tough but it will come. Great people here make it easier.

We make a contentious effort every day to discuss non IBD stuff 1st. How was your day, that cool band/sport/event, news etc. Most days we are successful & it has helped immensely. Like my kid told me, Crohn's is just a part of me, there is so much more I am than this disease.

 

[Tesscorm]

Yep, same as all above... first few months are the toughest. Personally, it helped me to learn as much as I could. I was blindsided by the diagnosis and would not let myself be in that position again so I learned about symptoms, complications, tests, treatments, etc. :lol: No doubt, I was an annoying 'mother' at appmts and maybe even annoying here with all my questions! :ack: But, I felt I had a bit more control if I knew what could be coming and what plans A, B and C might be.

I was also constantly asking my son 'how are you?' and, good heavens, the questions if he went to the bathroom at what I thought was a questionable time :lol: After a few months, I also did as said above - promised him I would stop asking all the time if he promised to tell me if anything was different. It's worked fairly well.

As your son starts feeling better and the remicade infusions start to run smoothly, I'm sure you'll get to a new normal. During good times, it may always remain a back-of-the-mind concern, ready to jump to full panic mode in an instant but, even that softens with time and knowledge.

Talking with the other parents here has been amazing!! They are an amazing resource for knowledge, experience and support!

I hope you start seeing improvement in your son very soon!

 

[Clash]

Once treatment starts and things even out you'll find that Crohns can take a back seat to everyday life.

I was quick to tell everyone that it is up to my son to discuss his health and not to inundate him with questions. It wasn't an issue really since my son was fairly open about what was going on. I think the hardest part was abiding by the rule myself. We finally came to the agreement that he would keep a bm journal using the Bristol scale as a reference and to write any additional details like mucus, bloody, etc. He switched to an app on his phone and sent me the notes weekly. As far as, "how do you feel" constantly coming out of my mouth we decided I won't ask as long as he comes to me when he is concerned about symptoms.

My son has been asymptomatic for awhile yet his disease simmered along even on meds. So he recently had resection surgery and will soon start his meds back. Something like surgery brings it all screaming back but really he is moving along enjoying his senior year and making plans for after graduation.

Hope remission comes soon and you guys find a good balance.

 

[my little penguin]

DS has had crohn's for 3 plus years . He is 10.
His Gi stuff is mostly mild but EIM are dealing havoc right now.
We designated a bathroom just as his -that way after he is done he leaves it so I can see how things really are plus teach him what is concerning and what is not .
So no asking just at bed a bout how many times ..

He aslo has a myibd app from Toronto sick kids
https://itunes.apple.com/us/app/myibd/id444728980?mt=8

He can log symptoms and I can look later
No Internet needed .

Once you get things under control things can go back to normal
My kiddo swims competitvely plus music etc..,
Few people outside of family/teachers know he is sick .

Keep in mind some meds restrict the ability to play contact sports
Mtx is one of those
Can't remember on remicade since it's been a while since he was on it .

I aslo was blind sided by the dx and had no idea what drugs did what
Not a good place to be to make decisions about .

Hugs

 

[CrohnsKidMom]

hockey mom, sorry to sabotage your thread... MLP, you mentioned in your above post that some meds, like MTX, can restrict one's ability to play contact sports. My son is on MTX and no restrictions were placed on him, but he plays hockey (no checking yet), soccer and baseball in the summer, and may try out football next yr. Now I'm scared. Can you give more info on this?

 

[kimmidwife]

I agree with the other's it takes time to come to a new normal. But you will get there. Using the app is a good way to handle things or a chart Can work too. Welcome to the forum. Keep us posted on how he is doing.

 

[Farmwife]

Welcome aboard. Sorry your son as this.

You've been given fab advice.

Life will get back to normal and your family will learn how to treat him. :kiss:

 

[my little penguin]

Avoid contact sports or other situations where bruising or injury could occur

From:
http://www.mayoclinic.org/drugs-sup...e-subcutaneous-route/precautions/drg-20064776

 

[my little penguin]

Mtx can lower platelets and that makes contact sports an issue.

 

[CrohnsKidMom]

Thanks, MLP, I appreciate your helpful info!

 

[Mehita]

Hello from a fellow Minnesotan!

Six years later and I still ask about poop. I'm the only one in the family that asks though. I can see how it would be annoying to be asked constantly and by everyone. Does he have a phone? Maybe try the GI Buddy app and tell him if logs everything and lets you see it every day you won't bug him?

Like the others have said, you get used to a new normal after awhile. I always feel like we're waiting for the shoe to drop, but even that fades a bit over time and as you see your kiddo feeling well with the right meds.

Where is he being treated at? My son loves Remicade. One, since he's in remission it means he doesn't have to think about Crohn's except this one day every eight weeks; two, it's a no school video games all day kind of day. Win win in his book.

Keep us posted on how it goes today. Good luck!

 

[hockeymom]

We are just finishing up our first Remicade treatment. Hockeyboy is doing fine. I'm sure it helped that we stopped on the way to pick up the new super smash brothers game for his 3ds. Hoping for a good night!

 

[Ali29]

It's hard to have the disease brought up all the time by caring people/relatives. It brought me down when they kept asking. I nicely told everyone, please assume nothing has changed - please don't ask how I am, if something changes I will let you know asap (good or bad). This was hard on my mom, so I agreed to give her updates after every doc appt and she felt better about it. Everyone cares so much but it is hard to move past it in every day life if it is constantly brought up.

Hope that helps! Sending support for your son/family.