Less than ecstatic

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Love the saran wrap idea! Go down to my antibody disseration, MLP, I've been waiting for your brain. :)
 
Ironically a pretty good day. I can't get a stool sample. She had three bouts of diarrhea yesterday between school and my mom's but nothing at home. We're out eating dinner right now so that oughtta do it ;).

J.
 
Back from the Windy City. Good news is fecal calprotectin somewhat improved - 310. Mixed news is c diff results say "toxigenic c diff detected". Im waiting for a call from the doc. Not sure if the antigen is something you always have if you've had an infection in the past? Or does she have an active infection?

Thoughts????? I'll post when I hear back.

J.
 
Hope it's just an indication of past infection! :ghug: And glad you're seeing improvement in the FC! :D
 
I asked the same thing a year ago to to the Infectious Disease Consultant.

Here's their answer

Yes/No

Yes if OBVIOUS SIGNS of a c diff infection then the test might be right.
No if their is no sign.

BUT...I said she has problems in the bathroom anyways. How can I tell the difference?

They said her inflammation markers would be up. I didn't ask what ones because I still had no idea what she had.

Call you call the IDC and get a phone consult?
 
I spoke with the GI. She is positive and symptomatic so we are processing as such.

Thanks. :)

J.
 
Sorry to hear it J! I hope the flagyl helps quickly! Is she still having joint pain too? Could cdiff have any effect on RA?
 
Julie, when you say symptomatic, did she ever start going more than twice a day? When Brian had first bought of C Diff he was going like 9+ times a day (in December.) His inflammation is creeping up last 3 labs(3 mos). I asked doc yesterday if this could be C Diff cause he's going 1-2 times a day...but always begins with a bit of Diarrhea/gassy then ends with logs. She said if he's having the logs and only 1-2x then its not C Diff. She also said they will not test if its not Diarrhea. I asked...why not? She said, they just won't. I noticed that you said Claire was only going 1-2 times also.

Thanks Julie for taking time to answer my question when you are going thru a lot yourself. HUGS!!!! And I hope the Flagyl helps her quickly :)
 
Kathy - you're a sweetie. :). She's going a couple of times a day. But sometimes 4-5. New onset of bleeding. Random low grade fevers.

That about covers it. Lol.

Claires doc doesn't always check for c diff when she has bleeding but I had emailed him because things were "different" than usual.

Dexky - good question. Her wrists are really bothering her tonight. I'll have to do some reading.

Hugs. J.
 
Day 3 of flagyl - she still seems way tired but somewhat better. Hoping to get out in the sunshine this weekend. We all need some springtime!

At this point we're proceeding with the MRE Monday.

J.
 
Is she drinking the stuff or by NG tube? I hope it goes well. Be forewarned that an IV is involved. We weren't prepared for that...
 
CarolinAlaska - she drank it. All. In an hour instead of two hours. The girl is a machine - god love her.

T - It all went well. :)

J.
 
Got the online report today. See the doc Tursday. No evidence of obstruction or narrowing. So that's GREAT. I didn't expect her to have that anyway but it's good to know. I'll pick her labs up this afternoon.

I guess I expected more detail than "ruling out" but am realizing now that's silly. Im used to what's seen on scope vs impression of the "outlines". Does that make sense?

J.
 
Yeah, Kathy, Im a newbie on the one. First MRE. :) :)

I'll let y'all know what he says tomorrow.
 
Well she spoke up for herself re her pain. So now we're scoping again to get a look at the left side pain that so rarely subsides. That was GI

Rheumy sees active inflammation in hand and fingers on one side. And excess fluid in hips. However no hip joint loss of motion etc.

J.
 
J I'm sorry that Claire is finally able to speak for herself and describe her pain :(

Does that sound stupid ??
I doubt it ~ I know you get it ! :ghug:
 
Just want to send a hug and a shout out to all you parents of children with Crohn's Disease. It breaks my heart to hear of young childrn suffering from this and I know you parents try EVERYTHING to help them. I can see that many of these children have been on multiple medications and have probably seen a lot of doctors.
 
Dex - April 12 or 19. They're supposed to let me know.

Part of me thinks they're not necessary and I have an irrational fear of everything in there being "fine". Please note I said lRRATIONAL.
 
I'm so sorry that Claire is dealing with pain! :(

Can the rheumy do anything to lessen the pain/inflammation? I hope the scopes give you some answers! Wish they could be done sonner.

:ghug: :ghug:
 
Does she have a TENS unit to help relive the pain for a bit to give her a "break" and a little more control until the scope?

DS has one- it didn't get rid of the pain at times- but definitely helped him deal with it.
 
TENS machines are awesome ! I have one for myself and my nerve damage pain, and it really does help a lot :)
 
Oh man J...:hug:

I so wish there was more I could do for you both...sending loads of love, luck and well wishes your way! :heart:

Dusty. xxx
 
Claire's so lucky to have you! It's not easy to always stay positive and patient and have the energy to get through one more day. :ghug: Is there any way you can take a bit of time out today to do something for just you?
 
You're doing a fab job, she really is lucky to have you, you will always be really close.
My J is 19, but you're right she could be 49 and I would never stop fighting for her. It is exhausting. Hope you manage to get some time out.

Thinking of you both (((hugs)))

:ghug:
 
Of course you won't stop fighting J, cause you're one kick ass mommy !!
Hang in there and maybe go get a nice massage and mani and pedi :ghug:
(and don't forget the margarita!)
much love ! :heart:
 
Cabana boys your way, trashy magazines and lots and lots of chocolate.

YOu can put your big girl pants on in the am
have a good cry today
 
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There's no real rest while the kids suffer, is there? I pray God will multiply your sleep and give you peace.
 
MLP - you crack me up! :ylol: I shall name my cabana boy Antoine.

Dex - I'm not sure I know. :ybatty: I'm frustrated a little with Acra although I do respect and appreciate him.

CarolinAlaska - thank you :ghug:

J.
 
Oh J...my heart breaks for you hun...what I wouldn't give to nip on over there and lend you hand and shoulder...:ghug:

Thinking of you all, always. :heart:

Dusty. xxx
 
In a twist of irony, she seems to feel a lot better today other than her twisted finger. She spent the day with my Mom who called not in a total panic but was concerned about all the blood in the toilet. Blood in the stool, blood in the water and blood on the toilet seat when she got up.

But, she's smiling and upstairs playing with a friend, so for today.....I refuse to fret! (Ask me tomorrow ;-))

J.
 
Hugs
DS had rust dark red color in jan thankfully the mini flare only lasted a few days and resolved on its own.
Rust color typically means older blood - red bottom , black top Gi tract
Rust I would assume maybe little higher up ?? Hanging out for a bit
I just don't know
Glad she was able to hang out with her friend though
 
Oh J...:ghug:

I agree with mlp, but it would be difficult to pin down a location. An UGIB (Upper Gastro Intestinal Bleed) is primarily from just above the distal end of the duodenum up, so mainly the stomach and oesophagus. A LGIB (Lower) is from the distal duodenum through the the anus.

An UGIB is what normally produces the black/tarry stools.

A LGIB will usually produce rust/maroon stools. It is the fast transit time that can produce this colour from quite high up in the bowel. I would be inclined to think that if a fast transit is not a possibility then perhaps the bleeding is higher than the anus but still contained within the large bowel??? That is just my musing though J.

Thinking of you! :heart:

Dusty. xxx
 
Thank you all. So hypothetically all this pain behind her sternum and at top of stomach there may be a bleed that would show up rust-ish with fast transit? Am I tracking?

She's been of the flagyl/c-diff train for 6 days. Probably need to recheck that but I really don't think it's at play.

J.
 
I just reread your response and saw it said quite "high up in the BOWEL". I think Inquit reading at "high". Yep, fried momma. :)

J.
 
That is yet another club we could all quite easily qualify for J...fried, mashed, you name it! :lol:
 
((((J and C))))

I'm really not fond of emoticons and text hugs but it's all I can offer! Wish they were real J!
 
I'd be just like you - obsessing! What in the world! I guess it is better than what your mother reported... Maybe it has to do with that bleed clearing up from earlier?
 
Well stool frequency is better, pain is worse. Fed her some of that organic blended food you suck out of a tube for dinner. It's about all she could tolerate. Couple more days of this and Im calling the doc.

J.
 
She slept 5 hrs yesterday afternoon. Stool situation stable. Pain under sternum complaints and back pain complaints did not change. Im working today and she'll be with my mom. I'll let you all know the report.

J.
 

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