Does it get better?

[FranG]

Sorry to be Debbie Downer, but I'm so struggling watching my 15 year old struggle. Things seemed to be going fairly well after being diagnosed in March, however, this past week has been one of stomach cramps, sore throat and a cough. I know he feels so defeated....just when things began looking up, we've gone five steps back. Will this ever get any better?

 

[Clash]

It does get better. There are a number of kids on the forum that once they found the right combo of meds things went back to everyday teen life.

Even though my son still has active disease he is asymptomatic so honestly he rarely thinks about CD. The only reminders are his med day (Sundays are humira and mtx days) and iron infusion days.

 

[FranG]

Thank you so much, Clash, for giving me hope. It means the world to me. So happy that your son is doing well, despite having active disease. Hopefully, my son will get there one day soon. Hoping you're having a great weekend!

 

[Clash]

The thing to keep in mind is that you never want to settle for asymptomatic. Because even though he has no symptoms there is still damage occurring so we keep working toward deep stable remission with mucosal healing. Keeping the bowel healthy is the number one goal.

 

[Maya142]

It does take time. He has just started his medication - right? 6MP takes weeks to kick in.

The first few months are the hardest. Once you find the right combination of meds, most kids live pretty normal lives. The best advice I got was that "it's a marathon not a sprint" -- hang in there!!

 

[pdx]

It really is overwhelming at the beginning, but it does get better. Just to give you a realistic picture, though, it can take a while sometimes to find the right treatment plan, and some of the medicines take a while to work. My daughter was really sick when she was finally diagnosed, but we had the unrealistic idea that she'd start Remicade, and then everything would be back to normal a few weeks later. We ended up having to add several other medicines and EEN to tide her over until the Remicade kicked in. It was about 6 months after diagnosis that I finally felt like she was going to be OK. Now, about 18 months after diagnosis, she is doing great--feeling good and growing like crazy. Hang in there!

 

[Mj1gaynor]

The first year after my son was diagnosed was difficult for me. It was a roller coaster. It may take time to get in the right routine/meds. As a parent we will always worry about our kids, but after you get the right treatment it will alleviate the Crohns worries.

 

[Mehita]

Hang in there, FranG... it does get better. Like the others have said, once you're able to find the right medications for your son, things can improve dramatically. It took two years of trial and error (mostly waiting for meds to work or fail), but now my son is on Remicade and only thinks about Crohn's on infusion days. On the days in between, he's living a normal teenage life, going to school, playing sports and planning for his future.

For the "off" weeks of stomach aches, nausea, etc. I guess I just focus on getting through the day and hope for better tomorrow. It sounds like your son might just be fighting through a virus with the symptoms you listed? Try not to let normal life things, and colds and viruses are normal life things, get you down. They'll pass.

Hugs to you and be sure to take some time for you. Do something for yourself that allows you time to breathe.

 

[Jmrogers4]

As the others have said yes it does get better. I don't even freak out (that much) about normal everyday illnesses. I watch a little closer when he is ill but don't generally jump to it being about crohn's first off.
The first year was the hardest. Hang in there and we're here anytime you have concerns