difficult child 1 in pain still...

gcvmom

Here we go again!
difficult child 1 has Crohn's disease and has been having moderate pain, enough to interfere with his daily activities, for over 2 weeks now.

At first his GI said it was IBS and not disease activity because his labs last month were "perfect." Then she said it was bacterial overgrowth because of his stricture (scar tissue) at the end of his small intestine, so he's been on an antibiotic since last week. And he's essentially on a liquid diet now.

But the pain persists. :( Extra strength Tylenol just about cuts it in half, but not enough to keep him from walking around hunched over like an old man.

He almost had surgery for this last June, but it got indefinitely postponed because his obstructive symptoms had improved/resolved. Now I'm wondering if he's headed in that direction again...

He's missed 3 days so far this week, 4 last week, and 2 the week before.

I just want him to feel better and get back to his life!

Been swapping emails with the GI nurse, now waiting to hear back from her.

Did I say that I hate waiting? Ugh.
 

WhymeMom?

No real answers to life..
Nothing worse than a pain that can't be eased and refuses to go away........hope he can find some relief!!
 

'Chelle

Active Member
So sorry that he's experiencing so much pain. I hope that you get this under control soon and he's feeling better. {{{{HUGS}}}}
 

gcvmom

Here we go again!
Well... they ordered more labs so off we went to have blood drawn this afternoon. I should know by morning what's up.

To make matters worse, he started getting pins & needles/tingling in his fingers and jaw/tongue after his last dose of Flagyl this afternoon. Needless to say, he did NOT get his evening dose and the pharmacist said to cease and call the doctor.

At least everyone else around here seems to be stable... knock wood, rattle beads, cross fingers...
 
I am not familiar with your difficult child, but I have Crohn's too. It is SO painful!! I have been on long-term narcotics, MS Contin and oxycodone for 7 years and that saves my life. During a flare, those just barely take the edge off the pain. I assume your difficult child is a child, so narcotics are probably not an option. Hugs to your difficult child, Crohn's is a wicked disease!
 

gcvmom

Here we go again!
Okay, update...

They said his labs were fine, but wbc is low. No inflammatory markers. I just don't get it. Doesn't make sense. I'm betting money that he does have inflammation and it's near his scar tissue/stricture.

So they're doing a colonoscopy bright and early Monday morning -- we'll have to leave our house a little before 5am to get to the hospital by the 6am check-in. Fun.

I can hardly wait for the lovely prep on Sunday (NOT!) At least they don't make him use that god-awful magnesium citrate! He gets to do 80oz of clear liquids only Sunday with a capful of Miralax for every 8oz. I better go stock up on apple juice, gingerale and Sprite. Hmmm, maybe I can put some Miralax in some chicken stock or jello?

So pray for no emotional meltdowns (he IS a difficult child after all)... and pray for NO traffic and pray for answers. I'm so sick of seeing him hurting :(
 
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