Trick we learned - hat plus lined with Saran Wrap - much easier transfer less mess 
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Less than ecstatic
- Thread starter AZMOM
- Start date
as fun as that sounds ( yes I am a geek!) :tongue:
my house needs help first.
LAter
my house needs help first.
LAter
Crohn's Mom
Moderator
How's sweet Claire today momma J ? :hug:
I will try and search for you later when I get a full keyboard
Crohn's Mom
Moderator
I like to hear it's a good day ! :ghug:
CarolinAlaska
Holding It Together
I'm glad to hear she had a good day.
AZMOM
Moderator
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.
Thoughts????? I'll post when I hear back.
J.
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?
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?
Crohn's Mom
Moderator
Ugh
Sorry she's positive - hope the flagyl does the trick!
:hug:
Sorry she's positive - hope the flagyl does the trick!
:hug:
hugs
- Location
- Midwest
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
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
AZMOM
Moderator
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.
. 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.
good luck monday!!!
- Location
- Midwest
Yes! Brian did. Every time he was on it too. They told us to expect 'Dark Urine"
CarolinAlaska
Holding It Together
Never heard of that. Good to know.
Crohn's Mom
Moderator
Good luck tomorrow !! :heart:
CarolinAlaska
Holding It Together
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...
Crohn's Mom
Moderator
thinking of you girls ! :ghug:
Glad it went well
- Location
- Midwest
She's so tough!! Glad it wasn't hard for her! Did MRE give some answers?
AZMOM
Moderator
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.
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.
- Location
- Midwest
Yes, it does make sense. Our GI likes it for small bowel info...ruling out narrowing.
Crohn's Mom
Moderator
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:
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.
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.
DS has one- it didn't get rid of the pain at times- but definitely helped him deal with it.
your gi or rheumo can prescribe it- too second training and a nine volt battery and your set.
Crohn's Mom
Moderator
TENS machines are awesome ! I have one for myself and my nerve damage pain, and it really does help a lot
- Location
- Midwest
I don't have any experience or knowlege to send you. Just wanted to send you and Claire a huge HUG.
Sending you guys hugs! I heard TENS units are really good. If you get one for her let us know how it works.
Crohn's Mom
Moderator
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:
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
YOu can put your big girl pants on in the am
have a good cry today
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What's going on J?? She ok?
CarolinAlaska
Holding It Together
There's no real rest while the kids suffer, is there? I pray God will multiply your sleep and give you peace.
- Location
- Midwest
Hang in there J. You both definitely need some rest from the crohns. I pray relief comes your way soon. HUGS!!!!
AZMOM
Moderator
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.
But, she's smiling and upstairs playing with a friend, so for today.....I refuse to fret! (Ask me tomorrow ;-))
J.
:ghug: Hope they can come up with something soon for her
AZMOM
Moderator
4 rounds on the toilet today. I only saw the last one and my heart sank.
Water was tinged a pale rust color. Long line of rust/marroon colored blood down the toilet bowel and what looked like a little stool and a lot of mucus at the bottom. Marroon colored bubbles on top of the water. Rusty blood on the toilet paper.
Usually our adventures in bleeding are bright red or black. What's rust? Halfway? MLP? Dusty? I need opinions.
She has a friend over and yelled for me to come in there. We are trying not to discuss it until the friend goes home. I'm trying not to worry worry worry.
Love you all for being willing and empathetic to consider Claire's BM consistency and color (weak attempt at humor)
J.
Water was tinged a pale rust color. Long line of rust/marroon colored blood down the toilet bowel and what looked like a little stool and a lot of mucus at the bottom. Marroon colored bubbles on top of the water. Rusty blood on the toilet paper.
Usually our adventures in bleeding are bright red or black. What's rust? Halfway? MLP? Dusty? I need opinions.
She has a friend over and yelled for me to come in there. We are trying not to discuss it until the friend goes home. I'm trying not to worry worry worry.
Love you all for being willing and empathetic to consider Claire's BM consistency and color (weak attempt at humor)
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
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
DustyKat
Super Moderator
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
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
AZMOM
Moderator
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.
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.
CarolinAlaska
Holding It Together
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?