Well, we survived Boston and the new doc

[muppet]

I typed out yet another long-winded (and probably pretty dry) account at: http://www.sarah-story.com/2011/08/18/boston-debrief/

I'm not pimping my blog so much as trying to avoid typing the story out again. I don't want to copy and paste it here because it's just SO MUCH TEXT.

Basically the new doc isn't frankenstein but he's not our old doc. He's definitely pro-surgery which I'm not a fan of, and he's very dubious about Humira for Sarah while I'm convinced it's her next best option.

Time will tell. For now we've bumped up her 6mp to 37.5mg (pain in the butt to split a pill twice without crushing it) and left the allopurinol at 50mg. We've also increased her current (second in a short time) course of pred from 20 to 30mg to give the increased 6MP dose time to kick in. We'll see. Hopefully the 6MP will come back and be therapeutic for her again like it was for years.

 

[xJillx]

I hope this change in Sarah's medication will do the trick.

Have you invested in a pill cutter? I highly recommend one if you haven't.

 

[muppet]

We've got a number of them and most are extremely sharp but 6MP is just a crumbly pill.

 

[muppet]

Sarah's complaining about a "weird headache" and says her stomach and abdomen feel "heavy" tonight. I'm assuming that she's adjusting to the increased 6MP dose. Hopefully she'll level out soon. I'm tempted to get the Prometheus metabolite test sooner than 2 weeks since I have the hardcopy order in hand but I know that will probably be a waste.

 

[DustyKat]

I so hope tweaking the meds works for Sarah muppet. Fingers crossed!

Just out of interest, my son has Crohns but does not have the tell tale granuloma's used for diagnosis.

Dusty. xxx

 

[Dexky]

Good luck untying all those knots Muppet! I'm afraid your 28 years of experience with crohns may be pulling those knots tighter rather than helping to loosen them. The "what ifs" drive us all crazy but you have so much personal experience to draw from. It's bound to become a garbled nightmare! I really hope you guys find something that works for Sarah soon!!

 

[scottmyster]

HI wish the best of luck for sarah, and i hope her pain will end soon. best wishes. keep us posted.

scott

 

[muppet]

Just out of interest, my son has Crohns but does not have the tell tale granuloma's used for diagnosis.

So then how was his CD diagnosed?

 

[DustyKat]

The GI diagnosed him by looking at it. After his scope he said there and then it was Crohns. The biopsies stated there were no granulomas so no definitive diagnosis on their part but the GI was adamant that it was Crohns.

Then the pathology from his surgery also stated that he had no convincing evidence of CD due to the absence of granulomas, but the colo rectal surgeon was in no doubt that it was Crohns.

I have no doubts either.

Dusty. xxx