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Crohn's Disease
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Posted 4/7/2014 12:36 AM (GMT 0)
My 17 year old son was diagnosed with Crohn's this past January. Started on Methotrexate and Humira right away along with the dreaded prednisone.
Well, the first few months are not going so well. He is in the hospital again now for the 3 rd time with a blockage. It's been 10 weeks of the big meds and never getting below 25 mg of pred. they obviously are not working.

My heart is breaking for him. He is starting to struggle with school. He is taking physics and Biology and math this term. Not stuff that is easy to keep up on when you are missing a lot of school.
He is worried about failing.
And he plays rugby at the provincial level. It is the one thing that drives him everyday. He worked so hard to get to this level. Now he has to give it up for atleast this season. He is so down about that. He barely has energy to go to school and hang out a little with his friends. He hasn't been able to work out since this all began.

Add to this, the stress of it all is causing my Crohn's to flare. Mentally I am totally worn out. I am physically exhausted, I am working so hard to stay positive for him. I don't want him to have to worry about me too.
I know surgery is lurking around the corner for him. I just don't know how I am going to stay strong enough to care for him like a mom should, and not be spending hours a day in the bathroom taking care of myself.

Well that's it for my unload for today.....thanks for reading.

Tanya
Posted 4/7/2014 2:14 AM (GMT 0)
Hi Tanya,

I am so sorry to hear that your son is suffering and of course, as moms, we tend to not take care of ourselves when our young ones are sick. I have no words of advice as a mom but as a person who had Crohn's like you describe your son having, I am thankful for the surgeons that saved my life and then gave it back to me. I was having blockages as week, finally after the second stricture dialation, they ruptured my bowel and I needed up having life saving surgery. I have a permanent ostomy now but at least I can play with my 13 year old daughter.

I wish you and your son better health in the coming days. I am in Ontario (saw he plays provincial rugby) so hope spring has finally arrived for you guys as well.

Best wishes.

Kelly
Posted 4/7/2014 3:03 AM (GMT 0)
I'm sorry to read this. Take good care of you. Thinking good thoughts.
Trishke
Posted 4/7/2014 3:56 AM (GMT 0)
I've been there. I wasn't big into sports, and I was a crappy student anyway, but even so, high school + crohn's is a huge pain in the ass (har har!).

On the bright side, at least you can support each other! My mom has fibromayalgia and my dad has rheumatoid arthritis, and both have IBS (and we lived in a 1 bathroom home!) so they were certainly sympathetic (plus they're just fantastic parents), but they don't really know exactly how it feels for me. You and your son do! Hopefully you can build your shared misery into an asset.

Have you talked to his school and teachers? My school was pretty accommodating. Maybe he could have work and notes sent home/to the hospital? Or have the lessons recorded or streamed? Or maybe he could do a live video chat. Have someone set up a computer on his desk and set up the video call so he can attend class from the hospital. That way he could participate and ask questions.
Posted 4/7/2014 9:15 AM (GMT 0)
Tanya,

I'm so sorry to hear that your son isn't responding to his meds. I wonder if the blockage is from scarring. If that's the case, the meds might be doing their job, but if there's too much scar tissue, the meds won't help with that.

Have you had any recent diagnostics done? Maybe an MRE which would be the least invasive, and be able to show where the problems are. If it is scarring, which I think is unlikely so early on, you might consider a minor resection at that point.

I would also give the meds more time. You might want to consider Remicade instead of Humira though if you find months down the road, he's still having problems.

Try not to worry. Also, try to keep your strength up, and take care of yourself. You will need to be a rock for him, which of course isn't easy. I pray you feel stronger and more positive with each passing day. I know there's been times I felt like I hit rock bottom over my Daughter's issues with this disease, but things WILL get better, I promise you that. Prayers coming your way. Please keep us updated.

Tom.
Posted 4/12/2014 1:06 AM (GMT 0)
A little update....
My son is still in the hospital...day 7 today. Tests show that he has mostly inflammation. So the meds are not working so great. Though our doc has recent reports that it can take up to 22 weeks for Humira to reach therapeutic levels.
So we are going to wait a little longer to see if things settle down. Being 17 they do not want to start taking out intestines if they do not have to. But if things do not calm down and he ends up completely blocked again they will do the surgery right away.

They did get confirmation that his blood work showed inflammation markers at the normal level, but the MRE showed that it was still inflamed. He still has a partial blockage from the inflammation.
So I guess we do not rely on his bloodwork.

He did start solid foods today and is still pain free. So if tomorrow goes well he will get to come home. From there we will pray that he does not end up back there again in 4-5 weeks like the past 2 times.

I did end up having my little breakdown of crying yesterday. I had reached my breaking point, but it did help and I am doing better now. And luckily my crohn's seems slightly better today.

Thanks for your supporting messages!

Tanya
Posted 4/13/2014 6:19 AM (GMT 0)
also, i prescribe hugs. lots of hugs. hospitals are awful. i have seldom felt so lonely and vulnerable and weak and scared as I did in that room (even though my care team was generally excellent). hugs helped. a lot.
Posted 4/13/2014 10:25 AM (GMT 0)
Just sending my support. I'm glad you had your little (or big) cry. I find sometimes, ironically, that helps. Offers some relief of built-up stress.

Take it day to day, and if you haven't already, I would suggest telling friends, family and co-workers about what's going on. Sometimes we keep things quiet because with chronic illness it seems like "it's always something" - or maybe you have focused more on your son's hospitalization rather than your own needs.

You might find it helpful to let people know, set up a webpage to ask for support, ask a friend to organize some meals, have people come clean the house or run laundry once a week, etc. Another thing I find helpful is to line up a friend to come have a cup of tea (or coffee) or take just a 20 minute walk outside with you. Just having a few minutes of "you" time (with someone else to organize it) might help.

You don't have to wait until you're also bedridden to just get some basic help with day to day life and this might help you get over the hump of your son's current health crisis.

((Hugs))
Posted 4/13/2014 11:34 PM (GMT 0)
Thanks guys for your support! It really does help.
Huckleberry, thanks for the reminders to reach out. I am not good at that.

Tanya
Posted 4/14/2014 11:26 AM (GMT 0)
I don't have any good advice...just sending you healing thoughts and hugs. I can imagine it is so hard to see your son suffer, especially when you have Crohn's yourself. What is going on with your disease? Are you taking care of yourself ok?
Posted 4/14/2014 11:54 AM (GMT 0)
Tanya...I jsut wanted to lend my good thoughts along with the others. Please feel free to vent here so you can let it out. I am hoping things get better for you both soon. If it helps any, I was only 7 years older than your son at my first resection and I ahve been very fortunate since then.

Hoping things improve every day...Take Care
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