I'm back and I need a hug ;-(

[greypup]

My daughter, who had resection surgery in June, fecal cal of 35 in July and good scopes in Aug just had a fecal cal test of 250 plus a cystic acne breakout.

I think the cystic acne coincides with the crohn's inflammation.

She is only a few months out of enjoying a stellar return to good health, her junior year, reconnecting with friends, etc.

She is admitting to having a bit of pain, prior to the fecal cal test last week she has always told me that everything is fine. Argh. She's almost 17 and I'm trying to give her space, independence, respect, etc.

We need to get back to the doctor. We need to start Imuran. I need a hug ;-(

 

[Clash]

Sending hugs and support your way! I'm so sorry to hear that things may be trending downward. I do understand about giving some independence, I am in the same boat with my son...trying not to overstep or intrude but still stay on top of things. I hope you get into see the GI quickly!!

 

[Jmrogers4]

Hugs, so understand the "fine"or in may case it is more of a grunted good (those communicative boys). Hope you get in to the GI quickly and get things back under control

 

[araceli]

:ghug:A big Hug your way.

 

[my little penguin]

Hugs to you
Hope Imuran works quickly and well for her

 

[ChampsMom]

So sorry to hear... (((HUGS))) to you...

 

[Cross-stitch gal]

Hope things will start getting a little easier for both of you soon. :hug:

 

[Sascot]

Sorry to hear that, hope she gets back into remission quickly on the meds

 

[greypup]

I appreciate your support so much. Still playing phone tag w/doctor's office...

 

[Tesscorm]

Sorry to read you're seeing some worrying signs. I hope it's quickly brought under control!!!

And, totally understand the 'I'm fine...', also try not to nag and question too often but, I can't help the occasional 'Seriously... Are you sure you're fine?'

Hugs...:ghug: :ghug:

 

[crohnsinct]

Oh man! I am sorry she is feeling poorly again. You can add me to that teenagerdom "I'm fine" gang. I think they really do want to be fine and almost try to will it so by saying it and ignoring things longer than they should. It must stink for them to always be dragging to docs, pooping in cups, taking meds etc. I don't blame them!

I hope the Imuran brings her relief real fast and that she truly is fine for a nice long time.

 

[greypup]

So what's the best way to get thru to them when asking how they are w/out them feeling nagged?

 

[Tesscorm]

Hmmm, I don't know... I try not to nag S too often with the 'is anything wrong?' questions but I do remind him regularly (especially if I'm feeling a twinge that he's not telling me 'everything') that HE has to be vigilant, as much as I will suffer with him, it will be HIM dealing with the consequences and, as unfair as it is that he has to have these responsibilities, ignoring symptoms will not make them go away and that I can't guess what he's feeling so it really is up to him to recognize them and tell me.

I'd love to hear other ideas but, that's the best I've come up with...

 

[my little penguin]

We are so there as well and DS is only 9.
He now has a book / app etc which he makes down
Things so he doesn't have to tell abx I don't have to ask .

I will let you know if he actually uses it once

 

[Jmrogers4]

It's that fine line we walk. I have no idea if it sinks in but I always tell him he wants more freedom (drivers license, going off with friends, etc.) this is one way he can show us he is responsible, that we know he will be doing what he is supposed to when we are not there, that it is a trust builder but then he is 14. I also tell him we always find out and I have eyes every where (evil laugh....)

 

[kimmidwife]

Sorry you're back, sending hugs! I like MLPs book idea. I am thinking of trying something like that. Like a symptom diary. There is an app for it and I downloaded it for Cailtyn but she never used it. I was thinking g of getting a daily planner book and try to use that.

 

[greypup]

I've read about the GI buddy app that the Crohn's and Colitis foundation designed. Maybe I can encourage her to use it. Although, when it's not their own idea...

 

[Cross-stitch gal]

I tried GI Monitor, but didn't do well at keeping up on it. It was geared more for Crohn's than Ulcerative Colitis/Proctitis and I just lost interest. I hope your daughter does better than I did and that GI buddy will work for her.

 

[Mehita]

Is Aspiro in the same family as Pentasa? Pentasa didn't help my son after his resection. He flared big time and was put on Azathioprine.

We've also tried the various apps out there, but they all seem kind of cumbersome. I just have a weekly calendar and jot down notes in there. I'm trying to get DS to be the one writing the notes, but he has no interest. I'm not sure how to encourage kids to be more responsible for something they want to go away and not acknowledge.

If someone figures it out, let me know!

 

[Jmrogers4]

Yes, Apriso is a 5-ASA. Jack was on it for a short while, we did not see much difference one way or the other on it and it was expensive! Are they thinking in addition to the Remicade?

 

[Mehita]

Jmrogers - Not sure if you're asking me or Greypup? I just wanted to share with Greypup that a 5-ASA wasn't strong enough for us after surgery either. Neither was Aza for that matter

MLP shared a great study on the most effective treatments after a resection. Remicade came out on top. Wish we would have just done that in the first place.